American Association of Nurse Life Care Planners® Nurse Life Care Planning Scope and Standards of Practice April 24, 2015 Contributors Editor Wendie A. Howland, MN, RN-BC, CCRN, CCM, CNLCP, LNCC Scope and Standards Workgroup Becky Czarnik MS, RN, CLNC, LNCP-C, CMSP Lori Dickson, MSN, RN, MSCC, CLCP, CNLCP Jacquelyn Godlove-Morris, RN, BSN, CRRN, CNLCP Wendie A. Howland, MN, RN-BC, CCRN, CCM, CNLCP, LNCC Shelly Kinney, MSN, RN, CNLCP, CCM Victoria Powell, RN, CCM, LNCC, CNLCP, MSCC, CEAS, CBIS Patricia Rapson, RN, CCM, CNLCP, CLCP, CBIS, MSCC Anne Sambucini, RN, CCM, CDMS, CNLCP, MSC-C Joan Schofield, MBA, BSN, RN, CNLCP Nancy Zangmeister, RN, CRRN, CCM, CLCP, MSCC, CNLCP 1 TABLE OF CONTENTS Prologue …………………………………………………………………………………………….…... 3 About the AANLCP ……………………………………………………………………………….…… 4 Introduction ……………………………………………………………………………………….…..… 5 The Origins of Nurse Life Care Planning, 1997 Foundation and Framework of the Scope and Standards, 2006 Audience for Scope and Standards Nurse Life Care Planning Scope of Practice……………………………………………………..… 9 Overview and Evolution of Nurse Life Care Planning Nurse Life Care Planning in Context Who Needs a Life Care Plan? Body of Knowledge Overview US Healthcare Cost Trends How Nurse Life Care Planning Can Help How Other Nursing Disciplines See Nurse Life Care Planning Preparing for the Role and Maintaining Competence Role Preparation: Novice to expert, background experience, education Continuing Education Professional Associations, Membership, Collaboration, and Certifications Nurse Life Care Planning Functions and Roles ……………………………………………..…..… 21 Overview AANLCP Role Delineation Study Essential Functions Nurse Life Care Planning Roles Advanced Skills Applied to Nurse Life Care Planning Nurse Life Care Planning and the Art of Nursing Practice Settings for Nurse Life Care Planners General Considerations for All Nurse Life Care Planner Settings Examples of Nurse Life Care Specialty Practice Areas Values and Principles Guiding Nurse Life Care Planning ……………………………………...… 38 Ethics in Nurse Life Care Planning Practice: The AANLCP® Code of Ethics and Conduct ...... 39 Current Issues and Trends Affecting Nurse Life Care Planning Practice …………………….… 43 Overview Industry and Regulatory Issues Affecting the Future of the Specialty Costing Transparency and Accountability MSAs Tort Reform Elder Care Looking Towards the Future Nurse Life Care Planning Research ………………………………………………………………… 45 JNLCP Research committee goals and activities The Standards of Nurse Life Care Planning ……………………………………………………..… 47 Significance of the Standards Nurse Life Care Planning Standards of Practice ..……………………………………………….....49 References …………………………………………………………………………………………...… 61 Appendices 2 Prologue The 2010 American Nurses Association (ANA) Nursing’s Social Policy Statement: The Essence of the Profession defines nursing in this way: “Nursing is the protection, promotion, and optimization of health and abilities; prevention of illness and injury; alleviation of suffering through the diagnosis and treatment of human response; and advocacy in the care of individuals, families, communities, and populations” (American Nurses Association (ANA) 2010, p. 3). This definition is the foundation for understanding the scope of practice of nurse life care planners. The National League for Nursing (NLN) defines critical thinking in nursing practice as “a discipline-specific, reflective reasoning process that guides a nurse in generating, implementing, and evaluating approaches for dealing with client care and professional concerns” (NLN, 2011). One such critical thinking process is called the nursing process. Nurse life care planning is the protection, promotion, and optimization of health and abilities for individuals and families affected by catastrophic injuries and chronic health conditions. Nurse life care planners apply advocacy, judgment, and critical thinking skills using the nursing process, to develop long-term or life time plans of care, including the costs associated with all of a plan’s components: • Identified evaluations and interventions • Health maintenance • Health promotion • Optimization of physical and psychological abilities for the life expectancy of the individual Care plan development is based on nursing assessment and collaboration with the affected individual, family, community and care providers. Members of other disciplines prepare life care plans, though nurses are unique in their holistic approach and abilities to promote quality health outcomes. Nurse life care planners function in the registered nurse’s scope of practice, and, when possible and applicable, incorporate opinions arrived by collaboration with various healthcare providers. While many registered nurses are prepared to develop short-term care plans and provide basic care coordination, nurse life care planners are distinguished by their advanced care planning for complex situations over an individual’s lifetime. 3 About the American Association of Nurse Life Care Planners The American Association of Nurse Life Care Planners (AANLCP) is a professional specialty organization founded in 1997 for registered nurses practicing life care planning. AANLCP® promotes the professional practice that the registered nurse delivers to the life care planning process. The goals of the AANLCP are to promote education, collegiality, collaboration, research, and standards related to the practice of nurse life care planning. 4 Introduction Nurse life care planning is defined as the protection, promotion, and optimization of health and abilities for individual and families affected by catastrophic injuries, and chronic and complex health conditions. Nurse life care planners apply advocacy, judgment, and critical thinking skills using the nursing process to develop long-term or lifetime plans of care. These plans include the future cost of identified interventions and associated costs for health maintenance, health promotion, and optimization of physical and psychological abilities for the life expectancy of the individual. Nurse Life Care Planning: Scope and Standards of Practice addresses the scope of practice and defines the standards of practice and professional performance for all registered nurses identified as nurse life care planners. The Standards define, guide, and provide a theoretical foundation for nurse life care planning in all settings. Self-regulation by a profession assures quality of performance. The AANLCP is a professional organization for nurse life care planners and is responsible for developing and maintaining a scope and standard of practice for all nurses in life care planning. Nurse life care planners use a holistic framework, recognizing biological, psychological, social, and spiritual factors associated with and affected by disability and chronic health conditions. Life care planning begins with a strong nursing foundation. Nurse life care planning is enriched, strengthened, and diversified by elements of case management, rehabilitation nursing, community health, public health, and legal nurse consulting. Nurse life care planning requires a working knowledge of economic trends, healthcare policy, funding sources, medical coding, and reimbursement issues. Nurse life care planners apply their expertise in many ways, expanding beyond litigation-based traditional life care planning practice into the following areas: Complex rehabilitation discharge planning Complex utilization review Independent nursing assessments Lien investigations Medical cost projections Medicare set-aside arrangements 5 Reasonableness of past medical bills Setting insurance reserves The Origin of Nurse Life Care Planning In 1997, nurse life care planning began as a distinct nursing entity when Kelly Lance, MSN, RN, CNLCP, LNCP-C, FNP-BC, recognized that a registered nurse’s multidimensional healthcare education, combined with nursing’s native professional standards and scope of practice, were an ideal preparatory foundation for life care planning. She identified the nursing process as the methodology often used by registered nurses who developed life care plans. Experienced nurses’ broad training and skills made them particularly well-suited and sought-after to assess patients’ needs and work collaboratively with all involved stakeholders whenever a lifetime plan of care was needed. Ms. Lance and a group of nurse life care planners founded the American Association of nurse life care planners (AANLCP) as a nonprofit, professional association for nurses who practiced life care planning. Ms. Lance developed a nurse life care planning curriculum with the nursing process methodology at its core, to teach and disseminate concepts and skills for nurse life care planning in the medical-legal arena. This included formal educational content on applying the nursing process and professional nursing scope and standards as the foundation for nurse life care planning practice. The AANLCP continues to represent and support all nurses engaged in or interested in life care planning. The Association of Nurse Life Care Planners holds that the American Nurses Association (ANA) Scope and Standards of Practice is the defining conceptual base for nurse life care planning. Nurse life care planners use the critical thinking skills of the nursing process to formulate a plan of care for an individual’s lifetime, often involving decades of healthcare and other needs. The nurse life care planner then develops the plan which includes the costs and resources necessary to meet those future medical and nonmedical needs using the nursing process. Foundation and Framework of the Scope and Standards 6 As a professional specialty nursing organization, AANLCP has a duty to its members and the public to develop and promulgate professional scope and standards of practice. In 2006, the AANLCP Executive Board realized the need to define a nurse life care planner’s scope of practice formally as a separate entity in its own right. In 2007, AANLCP developed the initial standards of practice. Also in 2007, the AANLCP established a preliminary work group to explore the development of the specialty practice of nurse life care planning with the ANA. In December 2010, this work group provided a draft outline of the Scope of Practice. A second work group completed defining the nurse life care planner’s role and wrote the first Scope of Practice in 2012. This updated Scope of Practice describes a nurse life care planner’s practice framework and responsibilities. The foundation and framework for NLCP specialty scope and standards are informed by three ANA documents: Nursing: Scope and Standards of Practice, Second Edition (ANA, 2010) as its template for the specialty practice of nurse life care planning because it applies to all registered nurses in every practice setting. Nursing’s Social Policy Statement: The Essence of the Profession (ANA, 2010) The Code of Ethics for Nurses with Interpretive Statements (ANA, 2001) Registered nurses developed nurse life care planning as a unique, synergistic discipline that draws strength and diversity from existing nursing specialties, such as community health, rehabilitation nursing, legal nurse consulting, and case management. Therefore, it was appropriate that other specialty scopes and standards of practice were consulted to help develop these; the AANLCP's nurse life care planning: Scope and Standards of Practice. Definitions and competencies are expanded, enriched, and customized to describe a competent level of nurse life care planning practice common to all nurse life care planners. The breadth and depth to which a particular nurse life care planner may engage in the total scope of nurse life care planning practice settings is a function of education, experience, role, and population served. The AANLCP placed the AANLCP Scope of Practice on the organization’s website for public comment after informing the membership of its availability, then evaluated the comments and made appropriate revisions. The current AANLCP Code of Professional 7 Ethics and Conduct, Scope of Practice, and Position Statements are available on the AANLCP® website at www.aanlcp.org, along with other resources. The Standards outlined here are authoritative statements, describing obligations that nurse life care planners are expected to meet, with the understanding that application of any standards must be considered in context. Specific clinical and practice settings, population served, and other factors, e.g., constraints imposed by the litigation process or funding sources, may affect the applicability of the standards at any given time. The competencies accompanying each standard serve as evidence of compliance with the corresponding standard. The list of standards is not to be regarded as exhaustive. Application and adherence to a specific standard or competency is dependent upon the situation. For example, collection and analysis of data may be limited by the availability of medical records and documents, access to the healthcare consumer and family, and scope of assignment. Implementation of the interventions outlined in the nurse life care plan may be delegated to or executed by others as circumstances warrant. The primary audience of this professional resource includes: Those who serve individuals who could benefit from life care planning Those who want to learn about life care planning as a specialty practice Those who want to learn about developing lifetime healthcare need and cost projections Registered nurses who are interested in pursuing the practice of nurse life care planning It is the intent of this scope and standards document to also serve as a reference source for legislators, regulators, legal counsel, and the judicial system. Others who will find this a valuable reference and benefit from this information include: Persons with catastrophic injury, illness, complex care needs, and disability Families and legal guardians Human service agencies Healthcare organizations Nurse administrators Nurses working in other specialty areas 8 Other professional colleagues, including those in the rehabilitation and case management fields These groups are potential stakeholders who can use this document to better understand the role and responsibilities of registered nurses who practice life care planning and how nurse life care planners provide leadership in healthcare today and tomorrow. Nurse Life Care Planning Scope of Practice Overview of Nurse Life Care Planning The nurse’s role in coordinating care and services began in the early 1900s with the appearance of privately funded home health nursing agencies for the poor. In the early 1900s, Lillian Wald promoted the term public health nurse, expanding nursing practice to encompass issues of employment, recreation, health education, and sanitation. Visiting nurses coordinated community-based resources; governmental funds for public health nursing expanded in the 1930s. By the 1940s, the insurance industry was using case management as a method of cost containment (CMSA, 2008), resulting in the beginnings of occupational health nursing. Industry, during World War II used case management nurses to help maintain a healthy workforce for the war effort. Care planning in nursing advanced during 1961 with formal identification of the nursing process by Ida Jean Orlando. As care planning has evolved, so has its purpose and tools. Case management roles expanded as early as 1966, when nurses began adding budget planning to coordinating care and services. In the mid-1970s, Paul Deutsch first identified the term life care planning, referring to future needs, to describe a tool to project the costs of medical care. “Case management and catastrophic disability research entered the litigation arena as a published resource in 1981” (Deutsch, 2011). Registered nurses in the insurance industry applied nursing expertise to project longterm healthcare needs and provide lifetime medical cost estimates. Management was directed toward serious conditions likely to require numerous providers and involve costly care. These early nurse life care planners assessed each case individually, identifying the treatments and care these individuals would require for their extremely resource-intensive conditions. 9 Attorneys began engaging nurses to assist in litigation, using their nursing knowledge to develop expanded care plans projecting the future medical needs of individuals with complex injury or chronic illness. Nurses with an appreciation for legal issues were drawn to this milieu. Life Care Plans were used in a variety of legal practice areas, including personal injury, medical malpractice, product liability, and toxic tort cases, and for setting budgets for high-cost medical claims in medical insurance and workers compensation cases. Early plans used checklists of assumptions about what injured persons might need. The nursing care plan has long been recognized as a product of the nursing process based on nursing theory and evidence-based best practices identified by nursing research. Registered nurses in all practice settings apply education and professional experience and use the nursing process to assess immediate and ongoing care needs for individuals and develop plans of care. As registered nurses, nurse life care planners apply the nursing critical thinking process, knowledge, experience, and evidencebased research. Initially, life care plans were developed by various professionals engaged in liability litigation, working largely from a vocational rehabilitation and disability management perspective to testify on this aspect of damages. Formal educational conferences with necessarily broad formats met the learning needs of these ancillary providers, still largely composed of vocational counselors with lesser numbers of nurses, educational consultants, social workers, therapists, psychologists, and others. Nurses who attended these early life care planning courses realized the methodology used to train ancillary providers in life care planning was inherently different from registered nurses’ professional framework, the nursing process. In 1997, Kelly Lance, MSN, RN, CNLCP, LNCP-C, FNP-BC, recognized that registered nurses' multidimensional healthcare education and nursing’s own professional standards and scope of practice were an ideal stand-alone methodology for life care planning. Ms. Lance led a group of like-minded nurses to establish a nonprofit professional association for nurses who develop life care plans, the American Association of Nurse Life Care Planners (AANLCP). She provided the first formal educational offerings on utilizing the nursing process and professional nursing scope and standards of practice as the methodological basis for nurse life care planning. Nurse life care planning 10 emerged as a specialty practice as more nurses intuitively embraced this concept and wholly incorporated it into life care planning practices. Nurse life care planning today is a unique hybrid of multiple nursing disciplines. This means it has great opportunity to expand into more healthcare spaces in the coming decades. A nurse life care planner’s skills and knowledge are excellent long-term planning resources for the growing elderly population and their families. As economic and politically-driven pressures constrain care provisions in order to contain the cost of long-term, resource intensive healthcare, advocacy and innovative approaches will be critical to maintain safe environments for these populations. When financial constraints are in place, the services and expertise nurse life care planners provide for these most vulnerable is even more important. The nurse life care planner’s bundle of knowledge, incorporating elements of many different nursing specialties, legal systems, and healthcare economics, will be critical in changing the face of healthcare. Applying holistic nursing concepts of nursing practice are fundamental to the nurse life care planner’s practice. The nurse life care planner considers the mind-body-spiritemotion and environment throughout all phases of life care planning. A person who has sustained, for instance, a brain injury or spinal cord injury, whether adult or child, experiences both acute and chronic mind-body-spirit and environmental disruptions. Nurse life care planners draw upon their years of rehabilitation and case management experience. They apply nursing knowledge, expertise, and intuition to promote holistic care in a treatment system often characterized by fragmentation. The nurse life care planner assesses each individual on all realms affecting health, well-being, safety and security, home and community influences, and individual and family needs to promote optimal independence. Nurse life care planners promote the delivery of holistic care and optimal health and function throughout the lifespan and across the health-illness continuum. The specialty practice considers culture, ethics, law, public policy, economics, access to individual and community health care, and competing priorities. Nurse life care planners advocate for social and environmental responsibility, community engagement, and access to high-quality and equitable health care to maximize health outcomes, and minimize health disparities between groups. Nurse life care planners advocate for the 11 wellbeing, comfort, dignity, and humanity of all individuals, families, groups, communities, and populations. Nurse life care planners focus on healthcare consumers, interprofessional collaboration, shared knowledge, scientific discovery, and social welfare. Furthermore, nurse life care planners use their professional experience in case management, community nursing, clinical settings, and rehabilitation to identify future medical and non-medical needs, and to research dollar amounts for future care for many different types of clients. A nurse life care planner performs a broad range of activities applying highly-specialized skills and advanced knowledge. In a typical day, it’s quite possible for a nurse life care planner to research changing wheelchair needs over a person’s lifetime, determine hours of care required for a particular level of spinal cord injury, and work with a contractor on an individual’s specific accessible housing requirements and plans for home modification. Nurse life care plans are formulated to smooth transitions throughout the healthcare system continuum and throughout the stages of life. Nurse life care planners take into account the need for stewardship of available healthcare dollars and resources, setting forth safe transitions of care while staying focused on safety, quality of care and patient self-determination. Nurse Life Care Planning in Context Who Needs a Nurse Life Care Plan? Life care plans are most often developed for individuals with injuries or chronic conditions requiring complex long-term healthcare interventions and management. These documents must be dynamic, organized, concise plans of care for goods and services to meet estimated current and future, reasonable and necessary (and reasonably certain to be necessary) medical and non-medical needs and expenses, and include the associated costs. A plan outlines an individual’s needs throughout the healthcare continuum, in multiple settings, and throughout life expectancy. Like any nursing care plan, a life care plan must be flexible, with provisions for periodic reevaluations and updates. Body of Knowledge Overview Nurse life care planners possess a wide body of knowledge in: Care/case management principles 12 Rehabilitation Changing care needs across the lifespan Epidemiology Morbidity and mortality Disability Healthcare trends Insurance and funding Legal issues This knowledge base forms nurse life care planners’ practice and bolsters their credibility and authority as advocates for positive changes in healthcare. Healthcare Costs and Trends Five percent of the United States (U.S.) population accounts for almost half of U.S. total expenditures for healthcare goods and services (Agency for Healthcare Research and Quality (AHRQ), n.d.) The rapid growth of health maintenance organizations (HMOs) and other forms of managed care from the 1970s onward was intended to control costs. However, this change in U.S. health care delivery did not change the concentration of health care expenses. Moreover, studies reveal major differences in health care expenses by geographic area. These are due not to price differences, average illness acuity, or socioeconomic status, but rather to the overall quantity of medical services provided and to the relatively higher proportions of internists and medical subspecialists in high-cost regions (AHRQ, n.d.). Nurse life care planners’ services are targeted to and best serve individuals with high-dollar, high-resource-utilization patterns. The plans of care are driven by evidenced based principles rather than geographic factors. How Nurse Life Care Planners Can Help AANLCP believes that adapting nurse life care planning to a broader population would create more informed healthcare consumers who could then change healthcare utilization patterns via self-advocacy. Life care plans focus on nursing and medical diagnoses, and by their nature are: Action-oriented Attainable Evidence-based 13 Fiscally responsible Interdisciplinary Time-specific Individuals with chronic, complex, and catastrophic conditions who understand their long-term needs as identified by a nurse life care planner are well-positioned to seek preventive and wellness-oriented interventions as recommended in the nurse life care plan to minimize the risk of secondary complications. As noted in the Institute of Medicine (IOM) report, nurses have the potential to play an influential role to ensure that the health care system provides seamless, affordable, quality care that is accessible to all and leads to improved health outcomes. The report recommended that nurses be full partners with physicians and other health care professionals to redesign health care in the United States (IOM, 2010). This collaboration is an essential component of nurse life care planning. Nurse life care planners’ unique knowledge base in clinical conditions, healthcare systems, regulatory, and healthcare spending makes them valuable contributors as the United States attempts to transform its health care system. Nurse life care planners can and should play a fundamental role in this transformation. Embedding nurse life care planners within the healthcare system at the regulatory, insurance and care delivery levels could be achieved within the scopes of existing nurse practice acts. Healthcare spending pattern analyses shed important light on how best to focus efforts to help restrain rising health care costs. Recognizing that a relatively small group of individuals account for a large fraction of spending, regardless of payer, drives the need for smarter cost-containment strategies. AANLCP has a long-term goal of having a seat at the table for healthcare policy and strategy formation to design effective consumer-directed health plans and plans of care. Nurse life care planners are particularly well-suited to assist all stakeholders, e.g., government entities, policymakers, individuals, communities, and populations, to develop and adopt strategies and tactics to address complex and chronic health issues such as spinal cord injury, acquired brain injury, diabetes, developmental disabilities, and chronic pain, among others. 14 In litigation, the nurse life care planner may serve as testifying expert, providing testimony on disability and function, safety, nursing care, reasonable and necessary future care, and associated costs. In this role, the nurse life care planner educates the trier of fact (e.g., judge, jury, mediator, arbitrator) about identified needs, and provides evidence regarding the plan’s foundation, contents, recommendations, methodology, and conclusions. How Other Nursing Disciplines See Nurse Life Care Planners Other specialties and nursing disciplines recognize the role of nurse life care planners. Certification examinations for certified case managers (CCM) and legal nurse consultants (LNCC) each allocate 5-7% of their examination questions to life care planning. Basic nursing textbooks, including Stanhope and Lancaster (2012) Public Health Nursing Population-Centered Health Care in the Community (8th ed.), now describe the role and function of nurse life care planners; the authors are collaborating with the Journal of Nurse Life Care Planning (JNLCP) editor on their next edition to provide more specifics. The Association of Rehabilitation Nurses will include the role and function of nurse life care planners in their Core Curriculum’s upcoming revised edition. Nurse Life Care Planning: Preparing for the Role and Maintaining Competence Role Preparation The nurse life care planner role is independent, autonomous, and self-motivated. The specialty practice requires advanced nursing assessment, critical thinking, and communication skills. Additional qualifications include proficiency in research, literature and medical record reviews, technical writing, financial concepts, and medical coding. It is also critical to have a fundamental understanding of applicable laws and regulations, including the Nurse Practice Act. Registered nurses can prepare for this role through experience, continuing education, and other formal and informal educational offerings. Benner's seminal novice-to-expert work (Benner, 1982) is classically applied as a clinical ladder model, beginning with new graduates at a basic educational level caring for healthcare consumers with low-complexity needs who progress to expertise in higher15 complexity situations in a continuum including further experience, learning, and mentorship. However, this cannot be wholly applied to nurse life care planning because, unlike many nursing specialties, nurse life care planning does not include a traditional or clinical patient care component. In contrast to new graduate nurses working in clinical specialty areas, even novice nurse life care planners are typically experienced in many complex aspects of patient care, as reflected by the many contributory certifications they hold in nursing and other specialties, e.g., rehabilitation nursing, disability management, case management, brain injury, nursing education, utilization review, legal nursing, and others. Nurse life care planners have experience in professional networking and research. The AANLCP Role Delineation Study in December 2013 (Manzetti, Bate, and Pettengill, 2014) found that 89% of nurse life care planners surveyed had held RN licensure for more than twenty years; 75% of respondents reported 30+ years of nursing experience. The AANLCP Role Delineation Study reported that 80% of responders held a bachelor’s degree, of whom 20% also have a master’s degree in nursing and 80% held a master’s degree in another field. Many CNLCPs obtain other certifications and degrees, such as Advanced Practice Registered Nurse or Master in Nursing. Some CNLCPs are pursuing doctoral degrees (e.g., PhD, DNSc, DNP) in nursing and performing evidence-based research in nurse life care planning. Continuing education As all nurses know, continuing education should never end. The AANLCP Scope and Standards of Practice and Code of Ethics and Conduct both address nurse life care Planners’ responsibility to advance the profession through participating in and promoting mentorship, collegiality, education, and ongoing knowledge development in the field. Many nurse life care planners fulfill this responsibility by attending and presenting at professional conferences for life care planners, case managers, rehabilitation nurses, legal nurses, and meetings of other allied professionals such as plaintiff and defense attorneys, structured-settlement providers, insurance claims managers, professional patient advocates, trust officers, and others. 16 The commitment to lifelong learning after initial education is a nurse life care planning core value. The nurse life care planner seeks continuing education on, for example, regulatory issues, reimbursement, medical coding changes, adaptive technology, and research related to supplies and equipment for specific injuries or conditions. The AANLCP provides continuing education programs on current trends and research, especially related to catastrophic injuries or conditions, e.g., traumatic brain injury, spinal cord injury, amputation, burns, and chronic pain; disease states such as cancer, chronic illnesses, Guillain-Barré syndrome, psychiatric conditions, effects of toxic substances, and organ or other tissue transplant; and pediatric conditions such as autism, cerebral palsy, other developmental conditions, and muscular dystrophy. AANLCP also provides opportunities for lifelong learning through networking, participation in small group programs, self-study, reading nursing/medical journals, the JNLCP, other relevant literature, and collaboration with other organizations, e.g., the American Association of Legal Nurse Consultants. Annual AANLCP educational conferences include content on the nursing process and nursing diagnosis which are integrated throughout conference programming. Conference topics include both entry level and advanced practice topics and subject matter. AANLCP also sponsors webinars on topics pertinent to the field of nurse life care planning. Continuing education opportunities exist throughout the country on related content such as catastrophic injury management, advances in rehabilitation, assistive technology for persons with disability, legal aspects of life care planning, and trends in healthcare economics. Nurse Life Care Planning: Professional Associations, Membership, and Certification AANLCP The American Association of Nurse Life Care Planners is a voluntary professional nursing specialty association established in 1997 for registered nurses practicing or with an interest in nurse life care planning. Members represent a multitude of professional practice backgrounds, including orthopedic, burn, trauma and rehabilitation nursing, case management, nursing education, insurance, physician and 17 hospital administration, to name a few. Most AANLCP members practice life care planning in the U.S., and there are an increasing number of international members. Leaders and members in the Association are also members of the ANA, NANDA-I, ARN, CMSA, AALNC, NAMSAP, and other nursing organizations. Activities and entities in which they serve and provide leadership in these nursing organizations include: Authoring, reviewing, and editing submissions for nursing periodicals Chairing and serving on standing and special committees / work groups Contributing to the next edition of a well-known nursing diagnosis handbook (Ackley, 11th ed.) Preparing a textbook of nurse life care planning exemplars for publication Presenting continuing education topics at professional meetings and consortia Standards validation committees for certifying entities State Nurse Practice Advisory Panels Teaching and precepting nursing students Writing items for certification examinations The AANLCP seeks to promote excellence in nurse life care planning through education and research, and to unify the specialty practice by providing a common foundation for nurse life care planners. It also promotes the practice of nurse life care planning in healthcare, public, and legal communities; provides standards for quality of practice to protect the public who uses these services; and facilitates ethical practice. The AANLCP recognizes the expanded role of the registered nurse as separate and distinct from the physician, therapist, or counselor, and of equal value. The nurse life care planner assesses individuals from a holistic and comprehensive perspective in homes, communities, and multiple care settings. AANLCP also collaborates with life care planning colleagues from other professional disciplines to share resources, discuss common issues, and to advance common agendas. AANLCP is an active member of the Alliance: The Nursing Organizations Alliance, a collaborative community of over 65 national nursing organizations. The Association provides the opportunity for nursing organizational leaders to network, exchange information, poll peer member organizations about association best practices, form partnerships and alliances on initiatives of mutual interest, and lobby for health care issues affecting member organizations. 18 CNLCP Certification As healthcare has become more complex, it is increasingly vital to assure the public that healthcare professionals are competent. Registered nurse licensure measures entry-level competence only; and, in so doing, provides the legal authority for an individual to practice nursing at the minimum professional practice standard. Certification, on the other hand, is a formal recognition of knowledge, experience, skills, and clinical judgment within a specific nursing specialty. It validates advanced professional practice and proficiency beyond that of basic licensure. The CNLCP® Certification Board is a separately incorporated entity that facilitates consumer health and safety by credentialing nurse life care planners. It ensures that practice is consistent with established standards for developing and defending a nurse life care plan. Consumers seek out certification status of other professionals (e.g., pharmacists, attorneys). The CNLCP credential indicates that a nurse life care planner is not only licensed to practice nursing, but is qualified and competent, having met rigorous requirements. Since the first courses in nurse life care planning were offered, nurses seeking to practice the specialty have taken advantage of coursework, mentors, and supplemental materials to learn how to make best use of their nursing fundamentals of assessment, planning, and implementation to prepare for the role. AANLCP took responsibility for providing certification for the specialty. There are now several courses for this purpose that meets the educational prerequisite to take the CNLCP® examination. The AANLCP and the CNCLP Certification Board have published a joint position statement on education and certification for nurse life care planners in 2014, available online at the Association website. (Appendix 5) The CNLCP Certification Board has provided oversight of the CNLCP certification examination since 2003. Both AANLCP and the CNLCP Certification Board adhere to a Code of Professional Ethics Mission/Vision Statement. The CNLCP Certification Board 19 meets and adheres to the Accreditation Board for Specialty Nursing Certification’s standards and organizational criteria. The CNLCP certification examination is currently administered for the CNLCP Certification Board by Professional Testing Corporation (PTC). Details regarding credentialing may be found on the CNLCP website at www.cnlcp.org. Achieving a passing score on the rigorous exam entitles the RN to use the designation of Certified Nurse Life Care Planner (CNLCP). The current examination required for certification in nurse life care planning evaluates the core knowledge base specific to the specialty of nurse life care planning. This includes, but is not limited to, the nursing process, knowledge of rehabilitation and the lifetime needs of catastrophically injured and/or chronically ill individuals, and the ability to conduct appropriate and specific research related to an individual's specific current and future needs. Please see the published Role Delineation Study, attached, for details on core knowledge (Manzetti, Bate, and Pettengill, 2014) Certification Eligibility (effective April 1, 2015) Candidates must meet the following eligibility criteria per the application deadline as indicated in the CNLCP® Handbook and Website: A. Candidate must have registered nurse licensure or its equivalent in other countries, for at least the past three years. The license must be currently active, without any restrictions and a copy of the current license must be submitted with the application. B. Candidate must have a minimum of two years of full time paid professional experience in a role (e.g., life care planning, community based case management, medical cost projections, Medicare set-aside allocations, lifetime nurse care planning, community based rehabilitation nursing, public health nursing, community based legal nurse consulting) that utilizes the nursing process in assessing an individual’s long term/lifetime treatment needs and costs across the continuum of care. Candidates meeting criteria A and B must also meet one of the following eligibility routes pertaining to education and relevant experience: Route 1: Completion of a minimum of 120 continuing education units* relating to life 20 care planning or equivalent areas that can be applied to the development of a life care plan, or that pertain to service delivery applicable to life care planning, within 5 years immediately preceding application. *There must be a minimum of 16 hours specific to a basic orientation, methodology, and standards of practice relevant to the nurse life care planning process contained within the continuing education curriculum Route 2: Verification* of two years life care planning experience or a variant thereof (e.g., lifetime nurse care planning), that incorporates the nursing process and skill set inherent to determination of treatment needs and their respective costs, across the continuum of care, within the past five years immediately preceding the application. *Verification of experience must be authenticated by an employer or a minimum of two referral sources. Reciprocity Eligibility (effective April 1, 2015) Candidates must meet the following eligibility criteria per the application as indicated in the CNLCP® Handbook and Website: 1. Candidate must be licensed as a registered nurse, or the equivalent in other countries, for a minimum of three years. The license must be currently active and without any restrictions. A copy of the current license must accompany the application for reciprocity. 2. The RN candidate must have a current Certified Life Care Planner (CLCP) certificate and letters of verification* indicative of two years full time paid professional work experience in the field of life care planning or a variant thereof (e.g., lifetime nurse care planning), that incorporates the nursing process and skill set inherent to determination of treatment needs and their respective costs, across the continuum of care. A copy of the current CLCP certificate must accompany the reciprocity application. *Verification of experience must be authenticated by an employer or a minimum of two referral sources. If ambiguity exists in terms of pathway interpretation/qualification, a final decision will be made by the CNLCP® Certification Board Application Committee, consisting of the 21 Certification Board Chairman, Certification Board Co-Chairman and the Certification Board Secretary. Nurse Life Care Planning Functions and Roles Overview Nurse Life Care Planner Functions During the life care planning process, the nurse life care planner: Assesses and diagnoses the individual’s current response to the disability or illness Anticipates the effects of disability or illness and future needs as the individual ages Collaborates with healthcare providers when possible and applicable Considers risk minimization and the promotion of function over the lifetime Researches and documents the costs necessary to implement the care plan Identifies desired outcomes of plan elements Incorporates information and opinions from other providers May identify available community, public, and insurance funding and how to access those resources May initiate aspects of the life care plan during its development, educate the consumer and family/guardian on plan initiatives, or provide for the plan to be implemented by a nurse case manager (choice depends on jurisdiction) Updates the Life Care Plan based on the evaluation process The following tables with examples are excerpts from the Role Delineation Study cited. For further details on specific tasks related to nurse life care plan development, please refer to the complete Role Delineation Study, attached. Table 3 Assess need for medications (e.g., pain medications) Rated high for frequency of performance >3.5 3.9 Review post morbid medical records 3.8 Assess need for medical care evaluations/services 3.8 Assess need for therapeutic evaluations/services 3.8 Assess need for therapeutic evaluations/services Assess need for diagnostic testing (e.g., medical labs, radiological studies, neuropsychological, etc.) Assess need for wheelchair/mobility needs 3.8 3.8 Assess need for independent living ability 3.8 Life Care Plan Development Tasks 3.8 22 Assess need for home/attendant/facility care 3.8 Assess need for adaptive equipment 3.8 Assess need for therapeutic equipment 3.8 Assess need for orthotics and prosthetics (e.g., braces, ankle/foot orthotics) 3.8 Assess need for supplies (e.g., bowel/bladder supplies, oxygen, etc.) 3.8 Review expert reports 3.7 Assess need for assistive technology Assess need for home furnishing and accessories (e.g., specialty bed, portable ramps, patient lifts) Assess need for transportation (e.g., adapted/modified vehicle, etc.) Assess the need for renovations for accessibility (e.g., widen doorways, installing wheelchair ramp, etc.) Document pre-existing conditions utilizing a Medical Record Summary 3.7 3.6 Assess need for health, strength maintenance 3.6 Assess need for case management services 3.6 Assess need for architectural renovations (e.g., wheel-in shower, elevator, etc.) 3.6 3.7 3.7 3.7 Table 4 Cost Research Tasks Obtain costs for items and services in a Life Care Plan using provider/vendor contacts Other considerations used in determining Life Care Plan cost: Geographic location Obtain costs for items and services in a Life Care Plan using internet sources Rated high for frequency of performance >3.5 3.7 3.7 3.6 Essential Functions In 2013, the AANLCP performed a role delineation study of nurse life care planners. The result, A Survey of Nurse Life Care Planners: A Role Delineation Study in the United States, was published in the Journal of Nurse Life Care Planning in September 2014 (Manzetti, Bate, & Pettengill, 2013) The primary role of the nurse life care planner is to provide a life care plan, applying the nursing process: assessment, diagnosis, outcome identification, planning, implementation, and evaluation. While specific individual practice environments, settings, and experience may differ, the nursing process methodology is common to all 23 registered nurses. Respondents to the survey described the following functions for nurse life care planner practice. The nurse life care planner: Reviews available data, requesting additional records when needed as part of the assessment process for the LCP. Completes a comprehensive assessment of the injured or chronically ill person when able, using a comprehensive assessment tool that identifies current and probable future care needs, durable medical equipment, medical care providers, laboratory and diagnostic tests, personal care assistance, supplies, therapies, activity/exercise needs, educational/leisure/vocational needs, and environmental modifications as indicated. Collaborates as necessary with healthcare providers for current and probable future healthcare treatment plans. Uses critical thinking to analyze and categorize assessment data to identify the human responses to the injury or chronic illness; makes the nursing diagnoses for the life care plan. Considers associated risks, benefits, costs, current scientific evidence, medical guidelines and literature, and cultural and ethical considerations, to achieve the identified outcomes. Plans for identified reasonable and essential needs, including frequency of caregiver follow-up and maintenance and replacement of equipment, including the annual cost of each item and possible alternatives. Considers promotion and restoration to health and injury/illness/disease prevention to achieve the desired outcome. Provides for implementation of the plan within an appropriate, reasonable timeline. Uses scientific evidence-based guidelines, nursing research, and other guidelines. Identifies community resources and systems; identifies and delegates the different sections of the life care plan to an appropriate provider to coordinate the care in the plan. Provides for health teaching and promotion and safety and prevention strategies from an appropriate, delegated provider. Provides life care plan consultation using analysis, summarization, research, evidence-based guidelines, and literature; communicates appropriate recommendations to the injured or chronically ill person to facilitate learning. Evaluates the life care plan to ensure a systematic approach for the completion of the life care plan and the effectiveness of planned strategies. 24 Completes an ongoing data assessment with appropriate revisions of the nursing diagnoses, outcomes, plan and implementation as needed. Demonstrates quality of practice, delivering life care planning consultation services as a nurse life care planner and demonstrating the application of the nursing process in a responsible, accountable, and ethical manner. Testifies as an expert witness, educating the court including attorneys, jury, and judges, concerning facts regarding the identified care needs and costs pertaining to those needs within the life care plan. Practices following current statutes, rules, regulations and guidelines. Although there are areas of specialization in nurse life care planning, the specific ability to assess the catastrophically injured or chronically ill throughout the continuum of health care in multiple settings over the lifetime remains constant. With this assessment, the nurse life care planner creates a plan that addresses health care, basic protection, and safety needs for the person and caregivers. Nurse life care planners who serve as testifying experts must be familiar and comfortable with the various rules and procedures inherent to this role, as well as knowledgeable about their own special knowledge, experience, skill, education, and foundations of nursing practice, and able to communicate these clearly to triers of fact, i.e., magistrate, administrative law panel, judge, or jury. Each nurse life care planner maintains a current, unrestricted registered nurse license and adheres to a professional registered nurse scope and standard of practice as specified by a state, province, or territory nurse practice act. Individual nurse practice acts may or may not specifically address every component of nursing process: assessing, nursing diagnosis, outcome identification, planning, implementing, and evaluating. Each nurse life care planner must know the applicable nurse practice act when testifying as an expert. Nurse Life Care Planning Roles Nurse life care planners regard the ANA Scope and Standards of practice as the definitive conceptual framework for care planning. Nurse life care planners use the nursing process to develop a plan of care for the lifetime of an individual in ways that parallel but are not equivalent to traditional nursing roles. 25 Nursing is a scientific discipline as well as a profession. Registered nurses employ critical thinking to integrate objective data with knowledge gained during assessment of the patient. Nursing includes diagnosis and treatment of human responses to actual or potential health problems. We recommend healthcare interventions that are restorative, supportive, and promotive in nature. One of nursing’s objectives is to achieve positive patient outcomes across the entire lifespan. All nursing practice regardless of role or setting is fundamentally independent practice. All registered nurses are accountable for judgments made and actions taken in the course of their nursing practice. As nurse life care planners we regularly evaluate safety, effectiveness, and cost in the planning and delivery of nursing care, recognizing that resources are limited and unequally distributed. (ANA Scope and Standards, 2010) Nursing practice is the protection, promotion, and optimization of health and abilities, prevention of illness and injury, and the alleviation of suffering. (ANA Nursing Social Policy Statement, 2010) Many nurses are attracted to the field of life care planning because they enjoy challenges. They want to develop advanced nursing skills to deliver safe, cost effective, quality care, and provide related education to individuals, families, and providers in nontraditional settings. Unlike nurse case management, nurse life care planning is not constrained by the economics of insurance or any contracted limits in coverage. Nurse life care planners are free to think creatively and unconventionally to optimize patient outcomes. Innovative thinking allows nurse life care planners to use the most important tool in their toolboxes: themselves, with all their talents and attributes. The Robert Wood Johnson Foundation described this in this way: Nurse life care planners create healthcare roadmaps. These nurses help patients who have suffered catastrophic injuries and illnesses, advocate for them, and plan out their care. Nurse life care planners work with a patient's family, insurance company, attorneys, and others to develop a life care plan, determining the future needs, services, and costs of care for the patient over their lifetime. Many nurse life care planners work independently from the hospital system, acting as a consultant for businesses, families, or courts of law. Because of life care plans, patients’ caregivers know how often they need to schedule appointments, what to expect in terms of rehabilitation, and what the course of medical care will look like. Nurse life care planners: Design nurse life care plans for patients 26 Advocate for patients, who often cannot express their own needs Teach patients’ families about the illness and treatment A nurse life care planner’s practice is: Multifaceted Structured Patient-facing Managerial Research-oriented Independent (Robert Wood Johnson Foundation, 2013) Nurse life care planners have the knowledge and skill to plan care for multiple disease states and complicated conditions. They are well-equipped to apply their skills to today’s healthcare challenges, e.g., the increasing awareness of autism-spectrum conditions and developmental disability, improved survival after very premature birth and after catastrophic trauma, and in the growing aged population with dementia. Nurse life care plans foster patient and family engagement and partnering in the planning process. Practice examples include: Parents may need a life care plan for a disabled child’s changing needs as the child grows to adulthood. The nurse life care planner will provide education regarding choices for long term care options, e.g., remaining at home with support services, specialized group home, or assisted living, and plan care respecting their individual values, needs, and preferences. An attorney or court may ask for a life care plan to address lifetime needs of the individual with catastrophic injury, e.g., burn, spinal cord injury, traumatic brain injury, amputation. A trust officer may need help administering funds for an elder or disabled adult, respecting the individual’s preferences for palliative care or hospice at end of life. These and many other situations require thorough and comprehensive care plans that address all needs, including safety, for a lifetime of care. Meeting such challenges by applying one’s wealth of knowledge and previous experience as a nurse case manager or clinician in an expanded role is invigorating. Advanced Skills Applied in Nurse Life Care Planning All nurses should be familiar with evidence-based practice and apply it in clinical practice. Nursing care typically involves assessment, planning, goal identification, and 27 care coordination related to data and outcomes for a discrete admission or episode of care. The specialty practice of nurse life care planning requires the nurse to consider a much larger picture, and apply a much broader range of resources to an individual’s plan of care. Nurse life care planners may review years of prior treatment, educational, vocational, and other records to evaluate prior hospitalization causes, frequency, and resource utilization to determine what secondary factors will most likely contribute to future resource demands over an entire life expectancy, commonly involving decades of care needs. Nurse life care planners apply knowledge of statistics and other research-based findings at an advanced level to understand probable prognoses, trajectory of care, and to project resources and associated costs. Nurse Life Care Planning and the Art of Nursing Nurse life care planners are nurses, first and foremost. No advanced practice would be possible without a solid foundation in the classic art of nursing. Therefore, as a registered nurse, the nurse life care planner applies the art of nursing and promotes respect of human dignity. Nurse life care planners see caring as protecting, enhancing, and preserving humanity, human dignity, and integrity. Nurse life care planners help a person to find meaning despite injury, illness, suffering, or pain. Nurse life care planning helps patients gain self-knowledge, self-control, self-caring, and self-healing to restore a sense of inner harmony regardless of the external circumstances. Nurse life care planners typically practice nursing both in the present and prospectively. While working with healthcare consumers in the home as with a home assessment, nursing happens as we assess, diagnose risks, educate the consumer, and intervene to prevent complications or reduce suffering. Prospectively we deal with health promotion to improve functional independence while reducing complications and improving safety. In no other specialty is nursing more holistic in partnership with the individual, family, community and support system than in nurse life care planning. We are intimately involved in the perception of health but also in assessing necessary health care services. 28 For example, in one case, an attorney retained a nurse life care planner to address the needs of an elderly African-American paraplegic woman. During the home assessment, the nurse life care planner learned the individual’s caregivers were exploiting her for her retirement funds and not providing her with safe or adequate care. It was the duty of the nurse life care planner to notify the appropriate authorities. She then informed the requesting attorney that it would be inappropriate to proceed with life care planning because the priority was assuring that the patient was moved to a safe environment. This vignette illustrates the nurse life care planner exemplifying the art of nursing: embracing empathy, mutual respect, and compassion to promote health. The nurse life care planner acted as a nurse first when she helped, listened, explored, was present, supported, touched, intuited, served, recognized cultural influences, nurtured, and resolved conflict. Practical Example The exemplar life care plan of a toddler diagnosed with severe cerebral palsy (Appendix 4) illustrates provisions for individual and family psychological counseling during important transitional times over the child’s lifespan. The plan identifies existing support groups within the community, recreational and leisure opportunities for persons with like disabilities, and support forums to help parents become educated consumers. The needs of a person with cerebral palsy during childhood change as he progresses through adolescence, early adulthood, middle age, and beyond. The nurse life care planner draws upon medical literature, evidence-based practice guidelines, and past experiences in serving like populations to address these needs. Today’s hospital nurse case manager or episode-specific case manager may be able to contribute to discussions about durable medical equipment and supply requirements. However, the nurse life care planner must also be able to outline existing equipment needs and, more importantly, project the trajectory of equipment needs over an individual’s life span. The exemplar life care plan anticipates changing environmental needs. Few home modifications may be needed for young children. As the child grows into adolescence 29 and adulthood, specialty systems may be needed for transfers, mobility, and community access. The nurse life care planner is knowledgeable about anticipating when these will be needed due to projected changes in patient size, weight, and disability and abilities of parental caregivers, e.g., track ceiling transfer system wheelchair-accessible transportation advanced seating system environmental controls bathroom modification As another example, to plan care for an individual with spinal cord injury (SCI) (Appendix 4) or traumatic brain injury (TBI), nurse life care planners will consult US Model Systems databases to research projected complications and likelihood of rehospitalization. The nurse life care planner will connect these data (e.g., age of the individual at the time of injury, years post injury, comorbidities) to individual assessments to project outcomes and associated needs. Durable medical equipment and associated repairs, maintenance, warranty periods and replacement intervals for life expectancy require similar study. Planning care for life expectancy also means looking at levels of home care, level of assistance, respite care, counseling, assisted living, custodial care, therapies, medications, supplies, safety, adaptive technology, and other aspects of care, all with the same level of attention to detail and resources. Applying this level of expertise exceeds the expectations of general nursing care planning. (See Appendix 4) Part of long-term planning is initiating the difficult conversation of planning long-term care options for a disabled loved one as, for example, when parents are unable to continue in the caregiving role. This is an intimate aspect of the assessment and planning process. The individual parent or spouse is often unaware of alternative care settings. The nurse life care planner asks these involved persons about their wishes for the future. Often, the nurse life care planner will broach the subject only to learn that the stakeholders have different, conflicting ideas for the future, or perhaps have never found it possible to think about or discuss the future. 30 When asked, parents of a disabled child with cerebral palsy may hope that when the child reaches young adulthood, they would like the child to move into a residential living environment that affords a sense of community living. The nurse life care planner identifies available options to accomplish this goal. The nurse life care planner incorporates opinions expressed by neuropsychologists, therapists, and medical providers to project the child’s likely future capacities. Are there specialty group homes in the area? Will the person likely be able to direct his own care with in-home caregivers? Will an assisted living facility be sufficient? Will a skilled nursing facility be necessary due to anticipated needs for tracheostomy care and enteral feedings? Will this person remain medically complex? Will this person become more medically stable? The nurse life care planner knows hallmark indicators that project the trajectory of these factors. For instance, research indicates that a child who cannot ambulate by the age of eight is unlikely to become a functional ambulator in later years. Could therapeutic interventions lead to improvement, which in turn would lead to a different selection of care needs? Often, an individual’s, parents’, or spouse’s stated vision is incompatible with evidenced-based knowledge about likely outcomes. An element of “magical thinking” may be present. The seasoned, knowledgeable nurse life care planner performs the delicate balancing act of crafting a lifetime plan of care which advocates for stakeholder wishes while applying the science behind the lifetime holistic needs of the person with the stated disability. Other research will be necessary for comorbidities common in catastrophic conditions (e.g., renal failure, psychiatric disability, cardiac conditions, diabetes, endocrine). The nurse life care planner will examine the literature for current, high-quality, reliable, and applicable studies regarding possible complications and apply current standards of practice and cost data from Medicare and other payor sources. Applying knowledge of rehabilitation nursing and healthcare finance, the nurse life care planners identifies likely diagnosis codes for future care and associated Healthcare Cost and Utilization 31 Project (HCUP) data from the US Government’s Agency for Healthcare Research and Quality (AHRQ) to project those costs over life expectancy. The nurse life care planner is often the first health care professional to introduce the discussion about what the individual/family/community future care configuration will look like. With few exceptions, today’s medical providers focus on today’s needs – what new prescription should be offered for today’s symptom, what equipment is needed today, what therapies should be ordered for the next month. Academic programs fail to educate today’s healthcare professionals about how to help individuals and their primary support systems plan for the future. Nurse life care planners fill this void. More often than not, when nurse life care planners meet with an existing treatment team to ask about an individual’s future care needs, they are met with blank stares. Some providers will say they don’t know or haven’t ever thought of that. Some will provide expected needs for the next five years. And when we reiterate that we are looking to project care needs for decades, most healthcare professionals will say that they do not know how to do that. Most are grateful to learn that the nurse life care planner has expertise in the statistical or epidemiological information framework underpinning lifetime care trajectories. The nurse life care planner fulfills two critical roles: advocating for the individual and educating healthcare professionals to help plan for the future. As nurses, we are uniquely equipped to open the conversation with the healthcare professionals on these essential elements: individual/family goals, reasonable expectations, likely functional outcomes, and the means to achieve them. As nursing evolves, so does nurse life care planning. The market for nurse life care plans has expanded to many areas outside of litigation: medical care planning, liability insurance, special needs trusts (elders, children, disabled), and Medicare Set Aside (MSA) allocations. Due to the value of their extensive nursing knowledge and expertise, nurse life care planning specialists are seeing growing demand for their services. Nurse life care planners have become sought-after consultants. The courts recognize nurse life care planners as experts in a variety of relate fields for our unique combination of 32 experience and knowledge. The federal government specifically uses nurses for their knowledge when responding to National Vaccine Fund cases. Some litigation calls for expert nurse life care planners to critique plaintiff plans for defense of liability suits. Nurse life care planning expertise is applied in Social Security Disability cases, in medical malpractice, worker’s compensation, toxic tort liability, even in divorce cases when a child’s or spouse’s future care needs must be considered. (See Appendix 4 for several exemplars including a defense critique and a workers compensation case) Practice Settings for Nurse Life Care Planners Nurse life care planners practice in a variety of settings for diverse entities, such as legal practices, government agencies, insurance companies, banks, private companies, or, most commonly, in private practice as self-employed consultants (65% of respondents in the AANLCP Role Delineation Study) (Manzetti, Bate, & Pettengill, 2014). The Appendix provides examples from both nurse life care planners working for private corporations as well as self-employed consultants. In each of these settings, nurse life care planners may interact with injured or chronically ill persons and their associated support systems, legal representatives, healthcare providers, insurance companies, employers, Centers for Medicare/Medicaid Services, other public or private agencies, and the community at large. See also Nurse Life Care Planning Functions and Roles for more information about the AANLCP Role Delineation Study.) General Considerations for All Nurse Life Care Planner Settings Nurse life care planners must follow the applicable law when handling, using, transmitting, and communicating personal information in the process of preparing the LCP. The Health Insurance Portability and Accountability Act Privacy Rule (HIPAA) addresses how private health information (PHI) must be safeguarded. While many settings in which the nurse life care planner practices do not require HIPAA-level PHI protection, the nurse life care planner protects all medical and confidential records to the extent required in the individual case, and destroys these materials when the case has been completed. These rules continue to evolve. The full text of HIPAA, summaries, and FAQs are available at the Office of Civil Rights (OCR) website at http://www.hhs.gov/ocr/privacy/hipaa/faq/index.html. 33 The Family Educational Rights and Privacy Act (FERPA, the Buckley Amendment) applies to access to data about student enrollment, grades, behavioral issues, and other school information, at all levels of institutions and agencies that receive US Department of Education funding. It also applies to states transmitting information to federal agencies. General information on the legislation and policies can be found at http://www2.ed.gov/policy/gen/guid/fpco/ferpa/index.html Health Information Technology for Economic and Clinical Health Act (HITECH) is concerned with, among other provisions, information technology and the electronic health record. It also extends the privacy and security provisions of HIPAA to business associates of covered entities, some of which may apply to the nurse life care planner. These rules also continue to evolve. Information on this can be obtained at http://www.hhs.gov/ocr/privacy/hipaa/administrative/enforcementrule/hitechenforcem entifr.html Nurse life care planners should carry malpractice insurance. A nurse life care planner in independent practice may also consider purchasing other business-specific insurance, such as errors and omissions, loss of business, and premises coverage. Examples of Nurse Life Care Planner Specialty Practice Areas Testifying Expert Witness Nurse life care planners who are retained as consultants by attorneys may be considered testifying experts, expected to testify at trial or deposition in litigation. They must clearly be able to articulate their own specialized and distinct body of knowledge. They must also have a clear and accurate understanding of the licensed scope of nursing practice as defined and authorized by the state, commonwealth, or territory. The qualifications and credibility of the nurse life care planner in this role are of great value to the triers of fact. In other situations, nurse life care planners may be engaged by attorneys to provide behind-the-scenes advice as a consulting expert, reviewing and offering opinions on a testifying expert's or opposing party’s plan. In this role, opinions are considered attorney work product and the nurse life care planner will not be disclosed as a testifying expert. (See Appendix 4) 34 Each testifying nurse life care planner must be knowledgeable about current federal and state laws pertaining to giving testimony in the jurisdiction. If a case will require trial or deposition testimony, the nurse life care planner should consult with the retaining attorney for advice and specifics. However, the prudent testifying nurse life care planner is familiar with Rule 702 in the Federal Rules of Evidence, concerning testimony by experts, outlining the requirements for a person to be qualified as an expert for the purposes of testimony; and Rule 703, bases of opinion testimony by experts. These Rules may be reviewed at the Cornell Law School website, http://www.law.cornell.edu/rules/fre/ Special Needs Trusts A nurse life care planner may be asked to assist an attorney, financial planner, and parent or guardian to develop a life care plan to meet the person’s needs through adulthood to end of life. The goal is to ensure safety and protection of the disabled person while addressing healthcare and other supplemental needs to maintain the person’s current lifestyle as closely as possible. A trust officer may oversee the fiduciary responsibilities of the plan, while a case manager may be engaged to implement its components. The nurse life care planner working in this area should be knowledgeable about types of varied trusts, Social Security programs (Supplemental and Disability), the Association of Retarded Citizens (ARC), and CMS guidelines in addition to specialty resource knowledge for the specific disability. Nurse life care planners may work with children with special needs, families, communities, and medical providers. These nurse life care planners outline current and future medical, social, psychological, and recreational needs for the child’s growing years. Continued planning for adulthood includes consideration of a living environment that maximizes safety and independence. The nurse life care planner collaborates with financial professionals regarding funding, medical insurance, and community resources to include in the LCP. At the request of the parents, guardians, or trust officer, a nurse life care planner may evaluate and revise the plan as the child’s needs change into adulthood. Worker’s Compensation Insurance 35 Nurse life care planners may be company employees or independent consultants who receive worker’s compensation cases from insurance adjusters to develop medical cost projections, medical record reviews, or MSAs for injured workers (see below). The plans may assist the insurance company to either settle cases and/or set financial reserves for ongoing care of the injured worker, depending on jurisdiction. A nurse life care planner working in this area should be knowledgeable about applicable state and federal worker’s compensation laws, rules, and regulations and reimbursement schedules. Medicare Set-aside Arrangements (MSA) Some nurse life care planners have pursued specialized training in the intricacies of MSAs. A Workers’ Compensation Medicare Set-aside Arrangement (WCMSA) is a financial agreement that allocates a portion of a workers’ compensation settlement to pay for future medical services related to the workers’ compensation injury, illness, or disease. These funds must be depleted before Medicare will pay for treatment related to the workers’ compensation injury, illness, or disease (Centers for Medicare and Medicaid Services (CMS), 2014). MSAs are completed to protect Medicare's interests when resolving cases that include future medical expenses. These nurse life care planners must be knowledgeable about CMS guidelines for MSAs, ICD 9 & 10 codes, and pharmaceutical and other reimbursement structures used by CMS. The nurse life care planner must constantly seek and apply updated information, due to the complexity of ever-changing federal and state laws and guidelines, including those for worker’s compensation, third-party liability, automobile, and self-employee insurance. Federal Case/National Vaccine Fund These complex plans are mandated by the National Childhood Vaccine Injury Act of 1986 (Public Law 99-660). This federal law protects the vaccine-injured person and provides reasonably necessary medical care deemed related to the injury. Guidelines are outlined and followed in developing the life care plan. These life care plans are different from civil life care plans because the plaintiff’s insurance benefits (except state-funded insurance plans) are considered as partial payment for future related medical needs. The nurse life care planner must be able to interpret insurance benefit language to identify and offset (take into consideration) these insurance benefits. 36 Nurse life care planners are retained by the petitioner’s attorney and the Department of Justice attorney. They must have expanded knowledge about applicable federal law, receive special training, and are referred to as Petitioner Life Care Planners and Respondent Life Care Planners. Unlike in classic adversarial litigation, the court requires the two life care planners to collaborate to develop the final plan and determine costs. Health and Disability Insurance Nurse life care planners who work for health and disability insurance carriers help claims personnel set annual reserves on high-cost members, applying the nursing process to determine future medical care needs and costs. This information may then be provided to an actuary, who calculates reserves to be set aside according to state or federal requirements to pay for the following year’s healthcare needs. This position also requires working knowledge of insurance terminology, regulations, and applicable laws. Senior Care Nurse life care planners may work with senior individuals, families, and trust officers or attorneys. This includes reviewing current and anticipated health needs, supplemental insurance coverage options, educating about and reviewing options for care in independent and assisted living, and planning for expected transitions through the healthcare continuum with aging. These nurse life care plans are generally not involved in litigation. A nurse life care planner is the ideal professional to help develop a plan to address health, safety and housing needs based on the individuals’ requirements, preferences, and financial situation. What makes elder life care planning a bit different is that finding the best solution is a bit like searching for buried treasure (See Appendix 3). There are many financial and legal professionals who assist clients in developing retirement portfolios, some who advertise their services (such as estate planning) and others who have their services marketed to elders through other services. Preparing an elder life care plan can be simple or complex. The nurse life care planner must work with a mix of projected and current focused health care needs, and must consider the desires and resources of the elder client in concert with the financial expert or trust officer who will use the plan to manage the client funds to meet them. 37 This is an excellent area in which to apply nurse life care planning skills for the benefit of a vulnerable population. advanced healthcare directives are increasingly important in today’s healthcare. Nurse life care planners are well-positioned to expand the discussion from the familiar end-oflife terminal care directives to broader-based planning for life’s remaining years. Case Management (CM) Some nurse life care planners practice as nurse case managers as well as nurse life care planners. The nurse life care planner may provide care coordination during plan development if needed to complete the assessment process and develop opinions on expected needs over the life expectancy. The life care plan may make provisions for CM. Unless circumstances clearly do not present the potential for conflict of interest, the nurse life care planner or nurse life care planning/CM company generally will not provide nurse life care planning services on the same case. However, if the referral source requests CM services after a life care plan has been completed and wants continuation of services, the nurse life care planner may see no conflict of interest and provide CM services. Legal advice may be helpful if this situation arises. Values and Principles Guiding Nurse Life Care Planning Practice Nurse life care planners embrace the following values and principles that are reflected in the AANLCP Ethics Statement. Competence: Nurse life care planners recognize that continual professional growth, particularly in knowledge and skill, requires a commitment to lifelong learning. Such learning includes, but is not limited to, continuing education, networking with professional colleagues, self-study, professional reading, certification, and seeking advanced degrees. Integrity: For nurse life care planners, integrity is the foundation of practice and demonstrates wholeness of character that is realized through congruence of thoughts, words and actions. As one of the core values, integrity means being truthful, honest, reliable, and authentic in all personal and professional matters. Accountability: Nurse life care planners are personally accountable for judgments, decisions, and actions they make in their practice, regardless of the policies or directives of others. 38 Objectivity: Nurse life care planners remain impartial and approach all aspects of the Life Care Planning process without individual bias, interpretations, or feelings. Respect for human dignity: In all professional relationships, nurse life care planners practice with compassion and respect for the inherent dignity, worth, and uniqueness of every individual, unrestricted by considerations of social or economic status, personal attributes, or the nature of health problems. The difficult conversation of how a disabled loved one should be cared for after existing caregivers are no longer able to do so is an intimate part of the assessment and planning process. The individual parent or spouse is often unaware of existing alternative care setting options when asked about future wishes. For instance, parents of a child with cerebral palsy may state when the child reaches young adulthood, they would like for child to move to a residential living environment that affords a sense of community living apart from them. The nurse life care planner knows or researches available options to accommodate this goal. The nurse life care planner incorporates opinions expressed by neuropsychologists, therapists, and other medical providers to project provisions for the child’s likely future capacities and needs. For example: Are there specialty group homes in the area? Will the child likely be able to direct in-home caregivers in how to give care? Will an assisted living facility be sufficient? Will a skilled nursing facility be necessary due to anticipated needs for tracheostomy care and enteral feedings? Will this child or adult remain medically complex? Is improved medical stability developing over time? The nurse life care planner is acquainted with hallmark indicators for future status. For instance, a child who is not able to walk by the age of eight is not likely to become a functional ambulator in later years. Are there therapeutic interventions that are not currently being rendered but could likely lead to attainment of greater independence, which in turn would lead to a different life time scenario of care needs? 39 Ethics in Nurse Life Care Planning: The AANLCP Code of Ethics and Conduct Ethical concerns in nurse life care planning practice are often complex and multidimensional, and may or may not be addressed in laws and professional ethics codes. Codes of ethical practice educate and inform professionals about sound ethical behavior, while mandating a minimal standard of practice. The ANA Code of Ethics for Nurses with Interpretive Statements (ANA, 2001) provides the framework for ethical nurse life care planning practice. The Code includes explanations and specific examples are provided for each of its nine provisions. Code of Ethics for Nurses with Interpretive Statements affirms that all nurses, including nurse life care planners, have an ethical obligation to practice with integrity, competence and accountability. The AANLCP Code of Ethics and Conduct was created by a group of nurse life care planners as an additional guide to core values and obligations of nurse life care planning. 1. The nurse life care planner does not discriminate against any person based on age, gender, sexual orientation, ethnic background, religious beliefs or practices, social or economic status, lifestyle choices, functional status, health status, or disability. Nurse life care planning explanation: An individual's differences or beliefs are respected. Personal attitudes do not influence or interfere with professional performance. Each individual's inherent worth, dignity and human rights are respected by the nurse life care planner without prejudice, regardless of whether the nurse agrees with or condones certain individual choices. The nurse life care planner performs in a nonjudgmental and nondiscriminatory manner. Nurse life care planning example: A nurse life care planner whose religious beliefs prohibit her from accepting blood transfusions includes plans for platelet and red blood cells transfusions for an individual with chronic malignancy. 2. The nurse life care planner maintains competency in nursing practice and nurse life care planning practice. Nurse life care planning explanation: 40 The nurse life care planner pursues professional growth through personal study, attendance at educational programs, national nursing conferences, seminars, professional meetings, reading the AANLCP Journal and other relevant professional journal articles, and collegial collaboration. The nurse life care planner maintains an active registered nurse license in good standing. The nurse life care planner practices according to the Nurse Practice Act and AANLCP scope of practice. Nurse life care planning example: A CNLCP earned credits towards recertification by attending the AANLCP annual conference and a continuing education seminar on spinal cord injury, and by presenting an offering on nurse life care planning to other nurses. 3. The nurse life care planner demonstrates high standards of professional conduct in delivering nurse life care planning services. Nurse life care planning explanation: The nurse life care planner demonstrates honesty, integrity, responsibility, accountability, timeliness, and respect for human dignity. The nurse life care planner practices ethically and lawfully. The nurse life care planner accurately represents professional background and credentials. The nurse life care planner does not promote personal interests for personal gain. The nurse life care planner remains objective and does not impose individual values on others. Nurse life care planning examples: The nurse life care planner positively exemplifies nursing to individuals, community, legal field, and media. The nurse life care planner seeks consultation as necessary. The nurse life care planner remains respectful and open in the exchange of views with all individuals with relevant interests. 4. The nurse life care planner safeguards privacy rights. Nurse life care planning explanation: The nurse life care planner exercises responsibility, discretion and respect in handling and use of all protected or sensitive information and materials. 41 The nurse life care planner considers that the rights, well-being, and safety of the individual should be the primary factors in arriving at any professional judgment concerning the disposition of confidential information. Nurse life care planning examples: The nurse life care planner shares relevant data only with those with a need to know. The nurse life care planner is aware of and complies with local, state and federal privacy and security regulations. The nurse life care planner recognizes that in some circumstances private information must be disclosed in compliance with federal or state law or regulations. The nurse life care planner uses appropriate technology to maintain data security with electronic communication. 5. The nurse life care planner assumes responsibility and accountability for professional action, opinions, recommendations, and commitments. Nurse life care planning explanation: The nurse life care planner assumes accountability for Life Care Plan and actions, opinions, and decisions. The nurse life care planner accepts, declines, or refers out cases on good faith based upon personal competence, education, experience, and capabilities. The nurse life care planner's professional services are delivered in a competent, concise, and timely manner. Nurse life care planning examples: The nurse life care planner accepts responsibility for initiating consultation with other health care providers when necessary. The nurse life care planner questions incorrect or inappropriate collaborative suggestions. The nurse life care planner seeks opportunities for improvement based on feedback from clients and colleagues on professional work. 6. The nurse life care planner provides professional services with objectivity. Nurse life care planning explanation: The nurse life care planner demonstrates critical thinking in decisions, recommendations, and opinions. The nurse life care planner actively seeks to eliminate personal opinion, prejudice, conflict of interest, consideration, or appearance of any of these that 42 could interfere with objectivity, performance, or outcome or tend to create the appearance of bias. Nurse life care planning examples: The nurse life care planner applies standards of nursing practice (the nursing process) consistently in all Life Care Plans, thereby not confusing bias with advocacy. The NCLP identifies and resolves any potential conflict of interest as soon as possible. 7. The nurse life care planner participates in the advancement of the profession through participating in and promoting mentorship, collegiality, education, and ongoing knowledge development. Nurse life care planning explanation The nurse life care planner maintains active involvement in the professional association's ongoing development and revisions of standards, policies, and guidelines for nursing and nurse life care planning. The nurse life care planner collaborates with mentors, peers, colleagues, and others. The nurse life care planner shares materials and information designed to advance the practice of nursing and nurse life care planning with peers, colleagues, clients, and others. Nurse life care planning examples: The nurse life care planner stays current on trends and decisions regarding healthcare delivery dynamics and expanding scopes of practice at the local, state and national levels. The nurse life care planner maintains an active membership in a national nursing organization. The nurse life care planner collaborates with members of other professional organizations at international, national, state and community levels. The nurse life care planner facilitates and participates in critical selfreflection and evaluation in the profession. The nurse life care planner serves as a leader, mentor, or committee member in the professional association. Current Issues and Trends Affecting Nurse Life Care Planning Overview 43 AANLCP supports the policy advocacy role outlined in Role of Professional Organizations in Advocating for the Nursing Profession (OJIN, 2012). This includes activities such as advocating for greater nursing presence in the current Patient Protection and Affordable Care Act (P.L. 111-148, March 2010) (ANA, 2011a; Gallagher, 2010). The AANLCP’s goals include greater nurse involvement in providing access to care, influencing the cost and quality of care, determining the scope and authority of practice, and increasing and improving the healthcare workforce. Case management was initially developed by the defense industry during World War II to improve return-to-work rates after injury to support the war effort. After the war, workers compensation insurance carriers continued case management as the positive effect of such services on clinical outcomes became apparent in return-to-work data: care coordination activities and utilization review emphasis on evidenced-based clinical decision-making led to cost savings. Today, case managers are an integral part of the healthcare system in all settings. Nurse case managers are in high demand. AANLCP foresees increased demand for nurse life care planning. Nurse life care planning has its historical roots in the day-to-day, month-to-month, and year-to-year nursing plans created, implemented, evaluated, and maintained by visiting nurses and home care nurses. Case management nurses and rehabilitation nurses were likely among the first nurse life care planners, especially those involved in litigation. Nurse life care planning has evolved as a nursing specialty in ways these earliest practitioners could not have imagined. Future need for nurse life care planners probably far outweighs the number of nurses currently practicing in the specialty. Healthcare Industry and Regulatory Issues Affecting the Future of the Specialty Costing Accountability and Transparency Nurse life care planners’ expertise in researching costs, applying data regarding prognosis of medical conditions, and projecting future care needs will become more important. Legislative calls for more statutory requirements for pricing accountability and transparency in all aspects of healthcare grows louder with each budget year. 44 Nurse life care planners will become increasingly valuable as their expertise assists stakeholders to make meaningful use of published cost data. Medicare Set-aside Arrangements The Medicare Modernization Act (2003) requires that Medicare remain the secondary payor whenever possible. As a result, nurse life care planners with an expertise in Medicare guidelines are in high demand to assess expected care needs in worker’s compensation and develop plans that protect Medicare’s interest, called Medicare setaside arrangements, in settlements. CMS has expanded the requirements for MSAs to include civil litigated case settlements. This is resulting in increased demand for nurse life care planner expertise. Tort Reform The potential for across-the-board tort reform could lead to damage caps in medical malpractice, liability, and personal injury cases. Tort reform involving drug and device product liability is another area where the need for nurse life care planners will increase. In turn, this will increase the demand for nurse life care planner assessment and care planning to provide direction about the injured person needs so that cases can be resolved appropriately. Elder Care The baby boomer generation has created the largest population of elders in U.S. history. This will pose a challenge for Medicare and Medicaid that can foreseeably lead to tighter controls on healthcare funding. The nurse life care planner can assist the Medicare system and the baby boomers plan for their healthcare needs; more nurses are pursuing this specialty area of nurse life care planning as a result. Looking to the Future Nurse life care planners typically have clinical experience in settings throughout the health care system, not only in hospitals, but in home health, public health, primary care, and long-term care. They know what happens when the system works for patients -- and when it doesn’t. This, combined with their rich understanding of evidencedbased care and focus on outcomes and costs, positions them for leadership roles in any healthcare system redesign. They will be valuable contributors to transform and improve care for persons with catastrophic and complex care needs at all stages of life. 45 As we prepare this document, healthcare costs and healthcare reforms continue to make headlines. The full effect of the Affordable Care Act on nurse life care planning remains to be seen; speculation on this topic is becoming more common in professional journals and meetings. As ANA states, "Registered nurses must proactively deal with constant change and must be prepared for an evolving healthcare environment ...” (Nursing: Scope and Standards of Practice, 2010). We believe that nurse life care planning is, by its very nature, well-positioned for addressing the above issues and trends in the future. Nurse Life Care Planning and Research Journal of Nurse Life Care Planning The Journal of Nurse Life Care Planning (JNLCP) is recognized by nurses who practice in the field of Life Care Planning and other specialty areas as a source for education. Initially published in 1998, this journal began as a few articles shared by AANLCP members to help address educational needs of their peers as determined by AANLCP’s annual needs assessment. It is now the AANLCP’s sole journal, peerreviewed, and published quarterly. The JNLCP has been published electronically since 2009 and is indexed in the Cumulative Index of Nursing and Allied Health Literature (CINAHL). According to annual readership surveys, readers include members of many professions. More than 80% of all readers share individual articles or entire themed issues with colleagues and clients more than twice a year. Research Committee The AANLCP collects research data from nurse life care planners to identify evolving practice patterns. The AANLCP promotes research led by doctorally-prepared nurse life care planners wherever possible by publicizing and supporting data collection from members and other activities as they arise. This is congruent with AANLCP’s goal to support evidence-based research concerning nurse life care planning. AANLCP established the Research Committee in early 2014 to expand the body of knowledge and theory specific to nursing practice and life care planning through research supporting evidence based practice. The Research Committee represents the association’s research interest, activities, and relationships to support, design, conduct, disseminate, and integrate research specific to the specialty practice. 46 The Research Committee has several activities and responsibilities including: Initiating, facilitating, integrating and supporting nursing-focused research projects Developing an Institutional Review Board (IRB) process to safeguard the interests of human subjects who participate in research projects conducted by nurse life care planners Carefully considering research budgets, timelines, outcomes, and usefulness for the specialty Developing resources for funding research projects Developing and carrying out research plans consistent with the AANLCP strategic plan and the objectives and budget of the committee Mentoring novice researchers Publishing the resulting research findings in the AANLCP Journal of Nurse Life Care Planning and website Standards of Nurse Life Care Planning Significance of the Standards The Standards of Professional Nursing Practice are authoritative statements of the duties that all registered nurses, regardless of role, population, or specialty, are expected to perform competently. The Standards may serve as evidence of the standard of care, with the understanding that their application depends on context. The Standards are subject to change with the dynamics of the nursing profession, as new patterns of professional practice develop and are accepted by the nursing profession and the public. Specific conditions and clinical circumstances may also affect the application of the standards at a given time (e.g., civil unrest, natural disaster). The Standards are subject to formal, periodic review and revision. The competencies that accompany each standard provide evidence for compliance with the corresponding standard. The list of competencies is not exhaustive. Whether a particular standard or competency applies depends upon the circumstances. For example, a nurse preparing a Life Care Plan for litigation may have limited access to the individual due to court constraints; an in-home or in-person assessment may not be permitted. 47 The Standards of Practice recapitulate the steps of the nursing process. The nursing process includes six singular and integrated actions of assessment: diagnosis, outcomes identification, planning, implementation, and evaluation. The bidirectional interactions between each component in Figure 1 convey that the process is not linear. That is, the nursing process is cyclical and dynamic. Each action (assessment, diagnosis, identification of outcomes planning, implementation, and evaluation) encompasses significant actions taken by registered nurses and forms the foundation of the nurse’s decision making. The standards may be applied at the individual, family, community, and/or population level. Figure 1. The Nursing Process and Standards of Professional Nursing Practice (ANA, 2010) Nurse Life Care Planning Standards of Practice The following standards of practice and performance are adapted from the American Nurses Association 2010 Nursing: Scope and Standards of Practice, Second Edition. Standard 1. Assessment The nurse life care planner performs comprehensive data collection pertinent to the healthcare consumer’s health and unique situation. Competencies: The nurse life care planner: Collects comprehensive data including but not limited to physical, functional, psychosocial, emotional, cognitive, sexual, cultural, age-related, environmental, spiritual/transpersonal, and economic assessments in a systematic and ongoing process while honoring the uniqueness of the person. Assesses any existing plan of care. Analyzes current plan of care for adherence to current standards and clinical guidelines. Elicits the healthcare consumer’s values, preferences, expressed needs, and knowledge of the healthcare situation when possible and as appropriate. Includes the healthcare consumer, family, and healthcare providers in data collection when possible and as appropriate. Identifies barriers (e.g., psychosocial, literacy, financial, cultural) to effective communication and makes appropriate adaptations. Identifies unwarranted or unwanted treatment and causes of healthcare consumer suffering in the current plan of care. Recognizes the impact of personal attitudes, values, and beliefs. Assesses family dynamics and impact on healthcare consumer health and wellness. Prioritizes data collection based on the healthcare consumer’s history, current condition and anticipated needs or situation. Uses appropriate evidence-based assessment techniques, instruments, and tools. Analyzes data and information to prescribe necessary system and community support measures, e.g., home modifications, nursing care, counseling. Synthesizes available data, information, and knowledge relevant to the situation to identify patterns and variances. Applies ethical, legal, and privacy guidelines and policies to the collection, maintenance, use, and dissemination of data and information. Recognizes healthcare consumers as unique sources of information on their 50 own health. Documents relevant data in a retrievable format. Standard 2. Diagnosis The nurse life care planner analyzes assessment data to determine diagnoses and issues. Competencies: The nurse life care planner: Derives diagnoses and issues based on assessment data. Validates the diagnoses or issues with the healthcare consumer, family, and other healthcare providers when possible and appropriate. Identifies actual and potential risks to the healthcare consumer’s health, safety, and barriers to health, including but not limited to interpersonal, systematic, and environmental circumstances. Uses standardized classification systems and clinical decision support tools, when available, in identifying diagnoses. Documents diagnoses and issues in a way that makes it possible to identify expected outcomes, establish priorities, and develop the life care plan. Standard 3. Outcomes Identification The nurse life care planner identifies expected outcomes for a life care plan individualized to the healthcare consumer or situation. Competencies: The nurse life care planner: Involves the individual, family, healthcare providers, and others, when possible and appropriate, in formulating expected outcomes. Develops culturally appropriate outcomes. For example, referrals to providers with similar language and culture whenever possible. Considers the healthcare consumer’s age, developmental stage, values and culture, ethical considerations, and environment when formulating expected outcomes. For example, a child with life-long needs receives age-appropriate occupational therapy in the home, community, or facility appropriate setting Derives realistic outcomes for potential functional, emotional, and developmental capabilities. For example, the plan prescribes appropriate nursing care configuration based on functional potential over life expectancy. Considers associated risks, benefits, costs, current scientific evidence, expected 51 trajectory for the condition, and clinical expertise. For example, the patient/family voices understanding of the plan for long-term health maintenance needs, including follow up and treatment with specialists and therapists. Includes realistic timeframe estimates for attainment of expected outcomes. Derives expected outcomes that provide direction for continuity of care. The plan includes a long-term health maintenance plan that emphasizes continuity of care over life expectancy. Modifies expected outcomes according to changes in the status of the healthcare consumer or evaluation of the situation. Documents expected outcomes as measurable goals. Standard 4. Planning The nurse life care planner develops a plan that prescribes strategies, interventions, and alternatives to attain projected outcomes. Competencies: The nurse life care planner develops a plan that: Provides direction to the healthcare team and consumer. Reflects current statutes, standards, rules, and regulations. Considers the individual’s characteristics and situation, including, but not limited to, values, beliefs, spiritual and health practices, preferences, choices, developmental level, coping style, culture and environment, and available technology. Explores suggested, potential, and alternative options and establishes the plan’s priorities with the healthcare consumer, health care providers, and others as possible and appropriate. Integrates traditional and complementary health care practices as appropriate. Includes strategies that address each identified diagnosis or issue across the lifespan, e.g., probable future needs; strategies for health promotion and/or restoration; illness, injury, and disease prevention; alleviation of suffering; supportive care for end of life. Provides for continuity. Incorporates an implementation pathway or timeline, i.e., frequency of need. Includes an analysis of the economic effect on the healthcare consumer, family, caregivers, or other affected parties. Integrates current scientific evidence, trends and research. 52 Provides alternatives, associated costs, and benefits. Can be modified according to ongoing assessment of response and other outcome indicators as indicated. Documents the plan that uses standardized language or recognized terminology. Standard 5. Implementation The nurse life care planner provides for implementation of the plan. Competencies: The nurse life care planner: Recognizes and uses technology, community resources, and systems as appropriate. Recommends evidence-based interventions, treatments, and strategies specific to diagnoses and issues. Consults with others as appropriate. Recommends implementation methods and manner. Modifies the plan if indicated. Provides for holistic care that addresses the needs of diverse populations across the lifespan. Provides for health care that is sensitive to individual needs, with particular emphasis on the needs of diverse populations. Applies appropriate knowledge of major health problems and cultural diversity in providing for the plan of care. Provides for available healthcare technologies to maximize access and optimize outcomes for healthcare consumers. Standard 5A. Coordination of Care The nurse life care planner provides for coordination of the planned care and services throughout the lifespan. Competencies: The nurse life care planner: Organizes the components of the plan. Recommends a nurse case manager and/or qualified other(s) to implement the plan, manage transitions of care delivery, and provide for dignified and humane care by the multidisciplinary team. Assists the healthcare consumer in identifying options for alternative care. 53 Incorporates services that maximize safety, independence, and quality of life. Advocates for the delivery of dignified and humane care by the multidisciplinary team. Documents decisions and actions related to coordination of care. Standard 5B. Health Teaching and Health Promotion The nurse life care planner employs strategies to promote health and safety. Competencies: The nurse life care planner: Addresses health and safety issues using data collected in the assessment, diagnosis, and planning processes. Provides for health teaching to address such topics as healthy lifestyles, riskreducing behaviors, developmental needs, activities of daily living, restorative measures, intended effects and potential adverse effects of proposed therapies, and preventive care. Provides for health teaching methods taking into account values, beliefs, health practices, developmental level, learning needs, readiness and ability to learn, language preference, spirituality, culture, and socioeconomic status. Provides for health promotion and maintenance, for example, weight loss, smoking cessation, support group participation, or exercise programs. Provides for education about informed decision-making related to plan options. Standard 5C. Consultation The nurse life care planner provides consultation to evaluate, develop, and influence the plan of care, enhance others’ ability, and effect change. Competencies: The nurse life care planner: Synthesizes data, information, research, and evidence to summarize and share with others. Communicates recommendations in a way that facilitates understanding. Facilitates the effectiveness of a consultation by involving the healthcare consumers and stakeholders in decision-making. Standard 6. Evaluation The nurse life care planner evaluates progress toward plan outcomes. 54 Competencies: The nurse life care planner: Incorporates a systematic and evidence-based process for outcomes evaluation in the life care plan. Collaborates with the healthcare consumer and other involved persons in the evaluation process when possible and appropriate. Uses evaluation findings to revise the nursing diagnoses, outcomes, life care plan n, and implementation as needed. Communicates the life care plan results to the healthcare consumer and other involved persons as reasonable and appropriate, in accordance with state and federal law and regulations. Reviews the life care plan for responsible and appropriate interventions to minimize unwarranted or unwanted treatment and healthcare consumer suffering. Documents the results of the evaluation. Standard 7. Ethics The nurse life care planner practices ethically. Competencies: The nurse life care planner: Uses the current ANA Code of Ethics for Nurses with Interpretive Statements and AANLCP Code of Professional Ethics and Conduct for Nurse Life Care Planners with Interpretive Statements to guide practice. Practices in a manner that preserves and protects healthcare consumer autonomy, dignity, rights, values, and beliefs Recognizes the centrality of the healthcare consumer and family as core members of any healthcare team. Maintains patient confidentiality within legal and regulatory parameters. Assists healthcare consumers in self-determination and informed decisionmaking. Provides information on the risks, benefits, and outcomes of healthcare regimens to allow informed decision-making by the healthcare consumer, including informed consent and informed refusal. Contributes to resolving ethical issues involving healthcare consumers, colleagues, community groups, systems, and other stakeholders. Takes appropriate action to address illegal, unethical, inappropriate behavior, or unsafe practices that can endanger or jeopardize the best interests of the 55 healthcare consumer. Promotes healthcare consumers’ self-determination and informed decisionmaking. Maintains professional relationships in the healthcare, community and legal environments. Participates in continuing education that addresses ethical issues. Advocates for equitable healthcare consumer care. Standard 8. Education The nurse life care planner attains knowledge and competence that reflects current nursing practice. Competencies: The nurse life care planner: Participates as learner and teacher in formal and informal educational activities related to appropriate knowledge and professional issues. Demonstrates an ongoing commitment to learning through self-reflection and inquiry to identify learning needs. Pursues learning activities to develop and maintain skills, abilities, knowledge, and competence. Uses current healthcare research findings and other evidence to expand nurse life care planning knowledge, skills, and judgment. Consults with nursing and other healthcare professionals to develop and maintain skills, abilities, and knowledge. Shares educational findings, experiences, and ideas with peers. Maintains professional records that provide evidence of competence and lifelong learning. Obtains and maintains professional certification in life care planning and other applicable content areas as appropriate. Standard 9. Evidence–Based Practice and Research The nurse life care planner integrates research findings and evidence into practice. Competencies: The nurse life care planner: Uses critical thinking skills and current scientific evidence to guide nurse life care planning practice. Actively participates in research activities, such as: 56 - Participating in a formal research committee, program, or study. - Critically analyzing and interpreting research for application to nurse life care planning practice. - Formally disseminating research findings through presentations, publications, or consultations. • Shares findings with peers, colleagues, individuals, families, nurses entering the field of nurse life care planning, and others. Standard 10. Quality of Practice The nurse life care planner contributes to quality nursing and nurse life care planning practice. Competencies: The nurse life care planner: • Applies the nursing process responsibly, accountably, and ethically when developing a nurse life care plan. • Provides leadership in the design and implementation of quality improvements. • Uses the results of quality improvement to initiate changes in nursing practice and the healthcare delivery system. • Participates in quality improvement activities. These may include, for example: - Identifying problems that occur in day-to-day work routines to correct process inefficiencies. - Seeks healthcare consumer feedback to identify opportunities for improving practice. - Formulating recommendations to improve practice or outcomes. - Implementing activities to enhance the quality of practice. - Maintaining familiarity with current standards of practice. - Active participation in a professional organization relating to the practice of nurse life care planning. - Participating in and/or leading efforts to minimize costs and unnecessary duplication. Standard 11. Communication The nurse life care planner communicates effectively in a variety of formats in all areas of practice. Competencies: The nurse life care planner: • Assesses communication format preferences of healthcare consumers, families, 57 and colleagues. • Self-assesses communication skills in formal and informal professional interpersonal encounters. • Seeks continuous improvement of own communication and conflict-resolution skills. • Conveys information accurately. • Questions the rationale supporting processes and decisions that do not appear to be in the best interest of the healthcare consumer. • Discloses observations or concerns related to hazards and errors in care, practice environment, or individual circumstances to the appropriate level. • Provides for communication between providers using case managers or qualified others to minimize risks associated with transfers and transition in care delivery. • Contributes professional perspective in formal and informal inter- and intraprofessional discussions. Standard 12. Leadership The nurse life care planner provides demonstrates leadership in the professional practice setting and the profession. Competencies: The nurse life care planner: • Provides direction to enhance effectiveness of multidisciplinary team. • Educates the public about the nurse life care planning profession. • Fosters a supportive environment for nurses entering nurse life care planning practice. • Communicates effectively. • Defines a clear vision, measurable associated goals, and a plan to accomplish them. • Models expert practice to multidisciplinary team members and healthcare consumers. • Uses best practices in the development of policies, procedures and standards of nurse life care planning practice. • Demonstrates a commitment to lifelong learning and education for self and others. • Promotes professional development through mentoring. Mentors colleagues for the advancement of nursing practice, the profession, and quality health care. • Treats colleagues with respect, trust, and dignity. 58 • Facilitates successful conflict resolution through effective communication. • Advocates for advancing nursing autonomy and accountability. • Participates in professional organizations. • Promotes the profession through writing, publishing, and formal and informal presentations. • Works to influence decision-making bodies to improve healthcare services and policies. Standard 13. Collaboration The nurse life care planner collaborates with healthcare consumers, healthcare providers, and others, in the conduct of practice. Competencies: The nurse life care planner: • Partners with others to effect change and produce positive outcomes through the sharing of knowledge of the healthcare consumer and/or situation. • Communicates the nurse life care planner’s role to all involved parties. • Promotes conflict management and engagement. • Adheres to standards and applicable codes of conduct that govern behavior among peers and colleagues to create a work environment that promotes cooperation, respect, and trust. • Creates a work product focused on outcomes and decisions related to care and service delivery that reflects communication with all involved parties. • Documents communications, rationales for plan changes, and collaborative discussions as appropriate. • Cooperates in creating a documented plan focused on outcomes and decisions related to care and delivery of services that indicates communication with healthcare consumers, families, and others. • Engages in teamwork and team-building processes. Standard 14. Professional Practice Evaluation The nurse life care planner self-evaluates nursing practice in relation to professional practice standards and guidelines, relevant statutes, rules, and regulations. Competencies: The nurse life care planner: • Analyzes one’s life care plans for age-appropriate and developmentally appropriate care in a culturally and ethnically sensitive manner. 59 • Engages in self-evaluation of practice on a regular basis, identifying areas of strength, as well as areas for professional development • Seeks feedback regarding one’s own practice from healthcare consumers, peers, professional colleagues, and appropriate others. • Interacts with peers and colleagues to enhance her or his own professional nursing practice or role performance. • Takes action to achieve goals identified as a result of self-evaluation, e.g., revising report format, preparing for deposition or trial, improving presentation skills. • Considers new and emerging technology and tools for improving work product. • Provides the evidence for practice decisions and actions as part of the informal and formal evaluation processes. • Interacts with peers and colleagues to enhance her or his own professional nursing practice or role performance. • Provides peers with formal or informal constructive feedback regarding their practice or role performance. Standard 15. Resource Utilization The nurse life care planner recommends appropriate resources for safe, effective, and financially-responsible healthcare services. Competencies: The nurse life care planner: • Assesses the healthcare consumer’s needs and resources available to address needs and achieve desired outcomes. • Recommends appropriate levels of care based on complexity and the needs of the individual. • Identifies healthcare consumer needs when making resource recommendations. • Evaluates factors such as safety, effectiveness, availability, cost/benefits, technology, evidence, and efficiencies when considering Life Care Plan component options with the same expected outcome. • Considers new and emerging technology for inclusion in the plan. • Provides for delegation of elements of care in the plan to appropriate persons and healthcare workers in accordance with applicable legal, regulatory, or policy parameters. • Assists the healthcare consumer and other relevant parties to understand costs, risks, and benefits of treatment, care, and other elements of the nurse Life Care 60 Plan. Standard 16. Environmental Health The nurse life care planner practices in an environmentally safe and healthy manner. Competencies: The nurse life care planner: • Attains knowledge of environmental health concepts, such as implementation of environmental health strategies. • Promotes practice and care environments that reduce environmental health risks. • Assesses how environmental factors such as sound, odor, noise, and light affect health. • Advocates for the judicious and appropriate use of products in health care. • Communicates environmental health risks and exposure reduction strategies to healthcare consumers, families, colleagues, communities, and others as appropriate. • Evaluates scientific evidence to determine if a product or treatment is an environmental threat. • Participates in strategies to promote healthy communities. 61 References Agency for Healthcare Research and Quality (n.d.) The High Concentration of U.S. Health Care Expenditures: Research in Action, Issue 19. 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Available at http://www.aanlcp.org/resources/journal.htm; 2010 December. Institute of Medicine (2010). The Future of Nursing: Leading Change, Advancing Health; October 5, 2010 LaGasse, N., McDaniel, H., American Association of Legal Nurse Consulting, Legal Nurse Consulting Practices, 3rd Edition, "The Life Care Planning Expert," Volume II, Chapter 13, (pp. 273 - 303), CRC Press, Taylor & Francis Group, Boca Raton, FL. (2010) 2 Manzetti C, Bate BT & Pettengill A, 2014. A survey of nurse life care planners: a role delineation study in the United States. JNLCP XIV.3, Fall 2014, p.694 ff National League of Nursing. Critical Thinking in Clinical Nursing Practice/RN Examination. June 2011. Available at http://dev.nln.org/testproducts/pdf/CTinfobulletin.pdf. Online Journal of Issues in Nursing (2012) Role of professional organizations in advocating for the nursing profession. Vol. 17, No. 1, Manuscript 3, January 2012. http://nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/OJIN/Tableof Contents/Vol-17-2012/No1-Jan-2012/Professional-Organizations-and-Advocating.html Retrieved 8/24/2014 Robert Wood Johnson Foundation (2013) Discover nursing: nurse life care planning https://www.discovernursing.com/specialty/nurse-life-care-planner#.VBioUy7CN0E Retrieved 9/16/2014 The ARC. For people with intellectual and development disabilities. (2011) http://www.thearc.org/page.aspx?pid=2414. Appendices: 1. Criteria for Recognition as a Nursing Specialty 2. Role Delineation Study 3. Nurse Life Care Planning in Elder Care 4. Nurse Life Care Planning Exemplars (Redacted) Child with cerebral palsy (plaintiff) Adult catastrophic injury (corporation) Adult with severe burns (plaintiff) Adult with heart transplant (workers compensation) Defense critique of opposing life care plan – SCI (international) 5. AANLCP and Certification Board Joint Position Paper on Education and Certification for Nurse Life Care Planners 3 AMERICAN ASSOCIATION OF NURSE LIFE CARE PLANNERS The American Association of Nurse Life Care Planners is the only professional organization representing registered nurses in the field of life care planning. The Association represents nurse life care planners through its member organization, education, work groups, publications, and website. AANLCP advances the nurse life care planning profession by developing and promulgating standards for nurse life care planning practice, promoting the work of nurse life care planning to many constituencies, projecting a positive and realistic view of nurse life care planning, and communicating with regulatory agencies on healthcare issues affecting nurses and nursing care. In this leadership role, AANLCP must address the assurance of quality in nurse life care planning practice. FOUNDATIONAL RESOURCES FOR NURSE LIFE CARE PLANNERS Three documents establish the foundation and create the framework for all nursing practice within the global domains of practice, education, administration, and research, as well as in more discrete areas of specialty practice. Nursing’s Social Policy Statement: The Essence of the Profession (ANA, 2010b), describes professional nursing’s accountability to the public and identifies the processes of self-regulation, professional regulation, and legal regulation as mechanisms to maintain public trust. A second resource, the Code of Ethics for Nurses With Interpretive Statements (ANA, 2001), provides significant guidance for all nurses and their nursing practice in every setting. The third foundational document, Nursing: Scope and Standards of Practice, Second Edition (ANA, 2010a), presents more detail in further defining the scope and standards of practice for all registered nurses. It describes what nursing is, what nurses do, and those responsibilities for which nurses are accountable. The scope and standards of nursing practice language serves also as a template for a nursing specialty when delineating the details and complexity of that specialty. For nurse life care planners, the most important foundational document is Nurse Life Care Planning: Scope and Standards of Practice (AANLCP, 2015). This document describes nurse life care planning origins, professional association, education, certification, practice settings, methodology, ethics, research, and responsibilities as a profession. RECOGNITION AS A NURSING SPECIALTY The process of recognizing an area of practice as a nursing specialty allows a profession to formally identify subset areas of focused practice. A clear description of the specialty nursing practice assists the larger community of nurses, healthcare consumers, and others to gain familiarity and understanding of the nursing specialty. Therefore, the document requesting ANA recognition must clearly and fully address each of the fourteen specialty recognition criteria. Because the context of specialty practice should not be separated from its standards of practice, The Congress on Nursing Practice and Economics (CNPE) requires that a contemporary specialty nursing scope of practice statement and standards of specialty nursing practice also accompany the request for recognition. Other supporting documents and references may be included to provide additional information, but are not required. CRITERIA FOR RECOGNITION AS A NURSING SPECIALTY The recognition criteria were originally developed in 1998 by the American Nurses Association Congress of Nursing Practice and its Committee on Nursing Practice Standards and Guidelines in collaboration with members of the Nursing Organization Liaison Forum (NOLF). The Congress on Nursing Practice and Economics regularly reviews the adequacy of the criteria, completed minor revisions in 2004, 2008, and 2010, and continues to use the criteria during the review and decision-making processes to recognize an area of practice as a nursing specialty. Nurse life care planning … 1. Defines itself as nursing Registered nurses practicing as life care planners organized a specialty organization in the 1990s because the methodology nurses apply to life care planning is separate and distinct from the methodology used by vocational rehabilitation life care planners and others. Nurses develop and prescribe plans of care using the conceptual framework of the nursing process and nursing diagnosis. This is uniquely reserved to registered nurses engaged in the practice of nursing. Reference for more detailed information on the nursing process as the conceptual framework for nurse life care planning: AANLCP Scope of Practice pages 7-12 2. Is clearly defined Reference for more detailed information on nurse life care planning and the art of nursing: AANLCP Scope of Practice pages 28 - 29 Nurse life care planners use the nursing process to assess, diagnose, and formulate a plan of care for the lifetime of an individual. Following the nursing process, the Nurse Life Care Planner develops the life care plan that estimates the costs and resources necessary for future medical and non-medical needs and expenses. Reference for more detailed descriptions of nurse life care planning processes and methodology: AANLCP Scope of Practice pages 21-24 3. Has a well-derived knowledge base particular to the practice of the nursing specialty In 1997 Kelly Lance, BSN (now MN, FNP), RN, recognized that registered nurses' multidimensional healthcare education and nursing’s own professional standards and scope of practice were an ideal foundation for life care planning. She provided the first formal educational offerings on using the nursing process and professional nursing scope and practice concepts as the basis for life care planning and its application in health care. A Core Curriculum for Nurse Life Care Planning (AANLCP) was published in November 2013. The revised and expanded second edition is in progress and will be published in 2017. 4. Is concerned with phenomena of the discipline of nursing Reference for more detailed information on “Special Areas of Practice” for descriptions of particular specialized knowledge necessary for Nurse Life Care Planner subspecialty roles: AANLCP Scope of Practice pages 32 - 37 Other disciplines and nursing disciplines recognize the role of Nurse Life Care Planners. Certification examinations for certified case managers (CCM) and legal nurse consultants (LNCC) each allocate 5-7% of their examination questions to life care planning. Basic nursing textbooks, including Stanhope and Lancaster, (2012), Public Health Nursing PopulationCentered Health Care in the Community (8th ed.), now describe the role and function of nurse life care planners; the authors are collaborating with the Journal of Nurse Life Care Planning editor on their next edition to provide more specifics. The Association of Rehabilitation Nurses include the role and function of nurse life care planners in their Core Curriculum’s upcoming revised edition. The Journal of Nurse Life Care Planning includes suggested nursing diagnoses from NANDA-I (most current edition) in all clinical articles. The Core Curriculum for Nurse Life Care Planning (2013) collaborated with NANDA-I’s publisher extensively to be able to feature NANDA-I nursing diagnoses prominently in all clinical chapters. The AANLCP is a member of the Alliance of Nursing Organizations and the National Quality Forum, a nonpartisan advisory group that works to catalyze improvements in healthcare. AANLCP is seeking membership in NAQC-Nursing Alliance for Quality Care (managed by ANA). These organizations focus on patient/family engagement; dynamic partnerships among patients, families, and caregivers; shared decision making; highest quality, safety, and value of consumer centered care. Leaders and members in the Association are also members of the ANA, NANDA-I, CMSA, AALNC, ARN, State Board of Nursing Practice Advisory Panels, and other nursing organizations, including as candidates for office. One member was tapped to help write the case management certification examination for the ANCC. Other members contribute to nursing periodicals. One member has published a textbook of nurse life care planning exemplars. Another is contributing to the next edition of a well-known nursing diagnosis handbook (Ackley, 11th ed.) The Robert Wood Johnson Foundation Initiative on the Future of Nursing primarily addresses the future of nursing roles in clinical settings. Although nurse life care planning is not typically practiced in these areas, we wholeheartedly support and see benefit to our practice particularly in the areas of nursing leadership in collaborative practice and in nurse-led change to affect health. Nurse life care planners are actively involved in these organizations’ missions in every aspect of practice. 5. Subscribes to the overall purposes and functions of nursing. Reference for more detailed information on nurse life care planners leadership roles: AANLCP Scope of Practice pages 18, 45 5. The AANLCP subscribes to the overall purposes and functions of nursing. As outlined in the Scope and Standards, the specialty practice of nurse life care planning recognizes the power of the ANA Scope and Standards. Over the past twenty years, nurse life care planning leaders and practitioners have used nursing process and NANDA-I nursing diagnoses as the conceptual framework for nurse life care plans. 6. Can identify a need and demand for itself Reference for more detailed information on conceptual framework and roles: AANLCP Scope of Practice pages 7 - 12 6. Nurse life care planners are in demand. Professional conferences, e.g., local, national, and regional Case Management Society of America, American Association of Legal Nurse Consultants, and conferences and seminars for attorneys and structured settlement professionals have requested presentations by nurse life care planners about nurse life care planning, its conceptual framework and methodology, and how it adds significant value to patient care planning in litigation, trusts, settlement planning and administration, and Federal vaccine cases. This has led to rapidly-increasing visibility in medical-legal settings. Nurse life care plans and the nurses who develop them are becoming more valued in litigation as their strengths, backed by RN licensure and a defined Scope and Standards, become more respected. 7. Adheres to the overall Reference for more detailed information: AANLCP Scope of Practice pages 32, 34 – 37, 43 - 45 7. The AANLCP adheres to the overall licensure, licensure, certification, and education requirements of the profession. certification, and education requirements of the profession. Certified Nurse Life Care Planners maintain active RN licenses and adhere to the ANA Scope and Standards of Practice. Like other specialty credentials, the CNLCP is renewed every five years with documented participation in educational, research, teaching, and other activities. Reference for more detailed information on certification and education requirements, and continuing education: AANLCP Scope of Practice pages 16 - 21 8. Defines competencies for the 8. The AANLCP defines competencies for the area area of specialty nursing of specialty nursing practice in the Scope and practice. Standards for Nurse Life Care Planners herein. 9. Has existing mechanisms for supporting, reviewing, and disseminating research to support its knowledge base and evidence - based practice Reference for more detailed information: AANLCP Scope of Practice page 47 - 60 9. The AANLCP has an existing mechanism for supporting, reviewing, and disseminating research to support its knowledge base and evidence-based practice. The AANLCP’s quarterly peer-reviewed journal, the Journal of Nurse Life Care Planning, is freely accessible to any interested party at www.aanlcp.org. Annual readership surveys consistently indicate that readers distribute its contents to a wide variety of constituencies including members of multidisciplinary care teams, legal and financial groups, and community resources (e.g., Brain Injury Association). AANLCP’s research committee is chaired by a doctorally-prepared RN. The Association hosts an annual educational conference, periodic webinars, and website to disseminate relevant articles, research, and literature to all nurses. Current projects include developing a White Paper on Advocacy and Nurse Life Care Planning and looking at how nurse life care planners distinguish variables in providing for case management services in a nurse life care plan. While not arms of official entities, there are at least two nurse life care planning online communities for information sharing and communication in the field, and nurse life care planners are well-represented in online legal nursing fora as experts. Increasing numbers of nurse life care planners are pursuing doctoral degrees focusing on life care planning. 10. Has defined educational criteria for specialty preparation or graduate degree Reference for more detailed information on the Journal and the Research Committee: AANLCP Scope of Practice pages 45 - 46 10. The AANLCP has defined educational criteria for specialty preparation. The Association endorses established requirements to sit for the CNLCP examination for certification, including completion of an educational course of study and demonstrated competence by submitting a nurse life care plan for review and passing the certification examination. A recent survey showed that 80% of responders hold a bachelors degree, of whom 20% also have a master’s degree in nursing and 80% hold a master’s degree in another field. 75% of members have 30+ years of nursing experience. Some CNLCPs are pursuing doctoral degrees in nursing and beginning evidence-based research in nurse life care planning. Reference for the AANLCP / CNLCP Certification Board joint position paper on education and certification for nurse life care planners: Appendix 5 Reference for more detailed information on certification requirements and certification board procedure: AANLCP Scope of Practice page 19 – 21 11. Has continuing education programs or other mechanisms for nurses in the specialty to Reference for more detailed information on demographics from Role Delineation Study: AANLCP Scope of Practice, Appendix 2. 11. The AANLCP offers continuing education programs in many ways. These include webinars, online interactive offerings, website fora, and blogs. maintain competence 12. Is practiced nationally or internationally The Association holds an annual conference that offers a minimum of 16 CEUs. The Journal of Nurse Life Care Planning publishes electronically for free access and appears quarterly. Reference for more detailed information on AANLCP-sponsored continuing education: AANLCP Scope of Practice, page 17 12. The Association membership data show that Nurse Life Care Planning is practiced nationally and internationally. Members of the American Association of Nurse Life Care Planners come from all 50 states, several US territories, Canada, and other countries. Life care planners work internationally; our members have provided services abroad as well as in the US. Reference for more detailed information: AANLCP Scope of Practice, pages 18, 44, and Appendix 4. 13. Includes a substantial number of registered nurses who devote most of their professional time to the specialty. 13. An AANLCP survey from November 2013 showed that 55% of respondents devote greater than 20 hours per week to nurse life care planning. Those who do not work full time as nurse life care planners do so for a variety of personal and professional reasons. Many perform elements of nurse life care planning in their day-to-day work as nurse case managers, legal nurse consultants, researchers, or educators. Reference for more detailed information from the Role Delineation Study: AANLCP Scope of Practice, Appendix 2. 14. Is organized and represented by a national or international specialty association or branch of a parent organization 14. AANLCP was formed in 1997 as a professional association for nurses who practiced life care planning based on the nursing process. The founding members established Association by-laws, policy and procedures, scope and standards of practice and ethics statements. Association leadership includes the Executive Board, committee chairs, and operations manager. The Certification Board is a legally and organizationally separate entity. Reference for more detailed information on the formation of AANLCP: AANLCP Scope of Practice, pages 6 - 7 FA L L 2 0 1 4 PEER-REVIEWED EXCELLENCE IN LIFE CARE PLANNING SINCE 1998 Vo l . X I V N o . 3 Tools of the Trade A Survey of Nurse Life Care Planners: A Role Delineation Study in the United States Colleen Manzetti DNP RN CNLCP CNE Barbara T. Bate RN-BC CCM CNLCP CRRN LNCC MSCC April Pettengill, RN CRRN CDMS MSCC CNLCP Life care planning is a Certified Nurse Life Care Planner (CNLCP®) phrase coined in the mid- Certification Board. 1970s by an educational consultant, Paul Deutsch EdD, intended to describe a process to project medical costs for ligation purposes. Registered nurses (RN) expanded their practice to include life care planning and in 1997 the American Association of Nurse Life Care Planning (AANLCP®) was founded by Kelly Lance, MSN, APRN, FNP-C, CNLCP, LNCP-C (Sambucini [Chapter 1], 2013). Since then the Association and certification board has grown considerably, and in 2008 a separate non-profit entity became known as the Nurse life care planning is a specialty practice in which an RN uses the nursing process as the foundation for assessing, planning, identifying, implementing and evaluating the medical and other needs of an individual. The RN develops a dynamic document that outlines with reasonable certainty the future healthcare needs of an individual along with the associated costs and frequencies of goods and services necessary to promote quality of life and a safe environment (AANLCP®, 2008). The CNLCP® Certification Board is responsible for the validity of the certification examination as well as ongoing supervision for recertification and quality assurance of nurse life care planners. Colleen Manzetti, Barbara Bate, and April Pettengill are members of the Certified Nurse Life Care Planner Certification Board. Their biographical information can be found in Contributors to this Issue on page 644. AANLCP JOURNAL OF NURSE LIFE CARE PLANNING ISSN 1942-4469 694 FA L L 2 0 1 4 PEER-REVIEWED EXCELLENCE IN LIFE CARE PLANNING SINCE 1998 Vo l . X I V N o . 3 Background A role delineation study is a tool used to Klosterman, and Linda G. Dierking. Penelope promote content validity of a certification ex- based on her past experience in developing amination by conducting a practice analysis. role delineation studies. This results define the tasks of a particular job as well as the knowledge and skill required to perform them competently, and is supported by logical and empirical validity. It allows a testing entity to base test blueprint on best practices using psychometric standards (ABSNC, 2014). Caragonne, PhD was asked to participate The role delineation study supports the mission of the Certified Nurse Life Care Planner (CNLCP®) Certification Board by identifying and quantifying the necessary knowledge, tasks, and skills needed in today’s practice environment. Consistent with the Certification Board’s mission and the requirement for ac- In 2012, the CNLCP® Certification Board creditation through the Accreditation Board launched a role delineation study to ensure for Specialty Nursing Certification (ABNSC), that the certification examination continues to the certification process validates nurse life be a valid assessment of the knowledge, care planner qualifications through profes- tasks, and skills required by a nurse life care sional education programs, experience in the planner for safe and effective practice. The specialty, and examination. This study data role delineation study was a joint effort con- describe current practice in several ways: ducted by the Certified Nurse Life Care Planner (CNLCP®) Certification Board, and members of the American Association of Nurse Life (a) Geographic areas of practice throughout the United States Care Planners (AANLCP®) with the assistance (b) Highest level of education, types of certification and licensure of the Professional Testing Corporation (PTC, (c) Age and years of experience 2013). The survey was concluded on December 13, 2012. (d) Practice setting including frequency distribution of plans between defense and plaintiff and venues for expert testimony Members of the role delineation task force (e) Patient assessment included the following registered nurses: April (f) Collaboration with others Pettengill, Glenda Evans-Shaw, Mona Yudkoff, Jan Roughan, Janice Skiljo Haris, Jacqueline Morris, Anne Sambucini, Chris Daniel, Jan (g) Life care plan development (h) Cost research (i) Life care plan report construction continued next page AANLCP JOURNAL OF NURSE LIFE CARE PLANNING ISSN 1942-4469 695 FA L L 2 0 1 4 PEER-REVIEWED EXCELLENCE IN LIFE CARE PLANNING SINCE 1998 Vo l . X I V N o . 3 (j) Professional activities not addressed in the survey. Professional Test- (k) Knowledge area rating ing Corporation (PTC) tabulated, analyzed This study is a critical component to update and summarized the returns and distributed and maintain the certification examination and the results to the CNLCP® Certification Board educational requirement process that ensures in April 2013. competency for the specialty practice of nurse Demographic Information life care planning. Overall, 133 respondents (n=133) completed Methodology This was the first time a Certified Nurse Life the survey. Ninety-nine percent (n=132) of the Care Planner (CNLCP®) Certification Board tered Nurses. Using the exclusion criterion re- had performed a role delineation study using quiring any participant to be a Registered a psychometrician. The role delineation task Nurse Life Care Planner the data are from 132 force developed the survey in 2012. It con- respondents (n=132). Not all respondents sisted of 136 task statements, 16 knowledge completed every item. areas, and 15 demographic questions. The survey was formatted and administered electronically. AANLCP® members accessed the tool through embedded links in direct email invitation, websites, online boards, or newsletters. To facilitate national participation, the Certified Nurse Life Care Planner (CNLCP®) Certification Board encouraged members to share the link with other nurse life care planners who were not members of AANLCP®. The survey included an introduction and instructions. The tool asked respondents to evaluate the frequency and importance of each task and knowledge statement using a four-point Likert scale. Respondents had an opportunity to enter comments including any tasks that they normally performed that were respondents identified themselves as Regis- Thirty-six states were represented in the survey (n= 120) with California having the highest participation rate (n=16, 12%) (Figure 1) Most respondents were currently performing life care plans (n=124, 93.2%) with 36.8% (n= 49) completing fewer than 10 life care plans per year on average (Figure 2). The pediatric population represented less than a quarter of all life care plans reportedly performed (PTC, 2013). Most respondents (n=107) indicated that they are self-employed, in private practice, with 65.4% (n=87) identifying themselves as practice owners. Thirty-nine percent reported their highest degree of education as a baccalaureate degree (BSN) (Figure 3). Only 8.3% (n=11) continued next page AANLCP JOURNAL OF NURSE LIFE CARE PLANNING ISSN 1942-4469 696 FA L L 2 0 1 4 PEER-REVIEWED EXCELLENCE IN LIFE CARE PLANNING SINCE 1998 Vo l . X I V N o . 3 Figure 1 Figure 2 Figure 3 Figure 4 continued next page AANLCP JOURNAL OF NURSE LIFE CARE PLANNING ISSN 1942-4469 697 FA L L 2 0 1 4 PEER-REVIEWED EXCELLENCE IN LIFE CARE PLANNING SINCE 1998 Vo l . X I V N o . 3 of the respondents reported that they held no The Importance Rating asked the respondent certifications. The average time practicing in how important is this task for competent per- the field of life care planning was identified as formance: six to ten years by 33.1% (n=44) of the respondents. The average age of the practitioner was between 50-59 years by 54.9% (n=73) of the respondents. The average number of hours required to complete a Life Care Plan was 26-50 hours (n=66) (PTC, 2013) (Figure 4). Task Analysis The role delineation survey included 136 tasks divided into six major sections: • Patient Assessment • Collaboration with Others • • Life Care Plan Development Cost Research • • Life Care Plan Report Construction Professional Activities A four-point Likert scale was used to determine the frequency of performance and how important the task is for competent performance. The scale was slightly modified for Frequency versus Importance. Frequency Ratings asked the respondent how often the task was performed as part of the job: • • • • 4 = Regularly 3 = Frequently 2 = Occasionally 1 = Never • • • • 4 = Extremely 3 = Moderately 2 = Slightly 1 = Not The instructions asked respondents to focus specifically on each task as it relates to the day-to- day performance of their jobs. In all cases, respondents rated the importance of the tasks the same as or higher than how often they performed the task. Tasks respondents considered equally important to the frequency for which they are performed were found only in the Patient Assessment category (PTC, 2013). (Figure 5) Most Frequently Performed Tasks The tasks that are performed most frequently are those that rated higher than 3.5 for frequency of performance by the respondent. This analysis looked at how many highly-rated tasks were found in each section of the survey (PTC, 2013). Eleven of 25 Patient Assessment tasks (44%) in Patient Assessment were rated high for frequency of performance (PTC, 2013). (Table 1) Only four of 13 Collaboration with Others tasks (30.7%) were rated high for frequency of performance (PTC, 2013). (Table 2) continued next page AANLCP JOURNAL OF NURSE LIFE CARE PLANNING ISSN 1942-4469 698 FA L L 2 0 1 4 PEER-REVIEWED EXCELLENCE IN LIFE CARE PLANNING SINCE 1998 Vo l . X I V N o . 3 Figure 5 Table 1 Patient Assessment Tasks Document date of birth Document date of injury/loss Document current medications Document gender Document functional abilities pre/post incident Document work/education status Document current address Document marital/relationship status Document daily or routine schedule Document social/environmental profile Document family dynamics Rated high for frequency of performance >3.5 4 4 4 3.9 3.9 3.8 3.7 3.7 3.7 3.7 3.6 continued next page AANLCP JOURNAL OF NURSE LIFE CARE PLANNING ISSN 1942-4469 699 FA L L 2 0 1 4 PEER-REVIEWED EXCELLENCE IN LIFE CARE PLANNING SINCE 1998 Vo l . X I V N o . 3 Table 2 Collaboration with Others Tasks Rated high for frequency of performance >3.5 In the absence of physician or medical provider input, rely upon medical records 3.9 Request information from treating physicians 3.8 In the absence of physician or medical provider input, rely upon professional education, training, and experience In the absence of physician or medical provider input, rely upon provider and/or expert report 3.8 3.7 Table 3 Assess need for medications (e.g., pain medications) Rated high for fre-‐ quency of performance >3.5 3.9 Review post morbid medical records 3.8 Assess need for medical care evaluations/services 3.8 Assess need for therapeutic evaluations/services 3.8 Assess need for therapeutic evaluations/services Assess need for diagnostic testing (e.g., medical labs, radiological studies, neuropsychological, etc.) Assess need for wheelchair/mobility needs 3.8 Assess need for independent living ability 3.8 Assess need for home/attendant/facility care 3.8 Assess need for adaptive equipment 3.8 Assess need for therapeutic equipment 3.8 Assess need for orthotics and prosthetics (e.g., braces, ankle/foot orthotics) 3.8 Assess need for supplies (e.g., bowel/bladder supplies, oxygen, etc.) 3.8 Review expert reports 3.7 Assess need for assistive technology Assess need for home furnishing and accessories (e.g., specialty bed, portable ramps, patient lifts) Assess need for transportation (e.g., adapted/modified vehicle, etc.) Assess the need for renovations for accessibility (e.g., widen doorways, installing wheelchair ramp, etc.) Document pre-‐existing conditions utilizing a Medical Record Summary 3.7 Assess need for health, strength maintenance 3.6 Assess need for case management services 3.6 Assess need for architectural renovations (e.g., wheel-‐in shower, elevator, etc.) 3.6 Life Care Plan Development Tasks 3.8 3.8 3.7 3.7 3.7 3.6 continued next page AANLCP JOURNAL OF NURSE LIFE CARE PLANNING ISSN 1942-4469 700 FA L L 2 0 1 4 PEER-REVIEWED EXCELLENCE IN LIFE CARE PLANNING SINCE 1998 Twenty-one of 36 Life Care Plan Development • tasks (58%) were rated as frequently performed (PTC, 2013). (Table 3) • Only three of 23 Cost Research tasks were • rated as frequently performed (PTC, 2013). Vo l . X I V N o . 3 Develop a rebuttal or comparison of opposing counsel’s life care plan expert’s report Assist in developing questions for deposition Assist in developing questions for cross examination (Table 4) Tasks that fell between 2.5 and 3.5 are occa- Nineteen of 34 Life Care Plan Report Con- sionally performed. These tasks included: • • • • • • • • • • • struction tasks (56%) were rated as frequently performed. Life Care Plan Report Construction was the second-highest-rated section for frequency of task performance (PTC, 2013). (Table 5) The psychometrician determined that respondents used tasks scoring greater than 3.5 frequently in the practice of nurse life care Architectural Renovations (3.4) Potential complications (3.4) Summary of total lifetime costs(3.4) Cost resource list (3.3) Home furnishings / accessories (3.3) Recreational Needs (3.2) Nursing diagnosis (3.1) Vocational / Educational service (3.0) Articles / literature researched (3.0) Clinical practice guidelines (2.9) Collateral sources (2.5) planning. Not all professional activities tasks Tasks rated as least frequently performed included in the survey met this criterion (> (<2.5) included the following: 3.5) for frequency of task performance (PTC, • 2013). Those tasks not meeting the criterion • • • • included: • • • • • Testifying at trial Arbitration Mediation Settlement conference Deposition Physical Assessment: Day in the Life video (1.8) Telephone contact only (2.2) Photographs of patient (2.2) Photographs of home environment (2.4) Photographs of equipment (2.4) Collaboration with Others category rated only one out of 13 tasks identified in the survey as low for frequency of performance: AtTable 4 Rated high for frequency of performance >3.5 Obtain costs for items and services in a Life Care Plan using provider/vendor contacts 3.7 Other considerations used in determining Life Care Plan cost: Geographic location 3.7 Obtain costs for items and services in a Life Care Plan using internet sources 3.6 Cost Research Tasks continued next page AANLCP JOURNAL OF NURSE LIFE CARE PLANNING ISSN 1942-4469 701 FA L L 2 0 1 4 PEER-REVIEWED EXCELLENCE IN LIFE CARE PLANNING SINCE 1998 Vo l . X I V N o . 3 Table 5 Life Care Plan Report Construction Tasks Rated high for frequency of performance >3.5 Use standardized categories/tables to list the following recommendation in the Life Care Plan: Medications 3.9 Use standardized categories/tables to list the following recommendation in the Life Care Plan: Future medical care (MD’s, etc.) 3.9 Use standardized categories/tables to list the following recommendation in the Life Care Plan: Projected therapeutic modalities 3.8 Use standardized categories/tables to list the following recommendation in the Life Care Plan: Durable medical equipment/replacement schedule 3.8 Include the following components in the Life Care Plan document/report: Narrative component regarding case data 3.8 Include the following components in the Life Care Plan document/report: List of medical providers/professionals consulted/source of recommendations 3.8 Include the following components in the Life Care Plan document/report: Medical diagnoses 3.8 Include the following components in the Life Care Plan document/report: Rationale/purpose for recommendations 3.8 Use standardized categories/tables to list the following recommendation in the Life Care Plan: Projected evaluations 3.7 Use standardized categories/tables to list the following recommendation in the Life Care Plan: Diagnostic/educational testing 3.7 Use standardized categories/tables to list the following recommendation in the Life Care Plan: Mobility (wheelchair/scooter/accessories/maintenance) 3.7 Use standardized categories/tables to list the following recommendation in the Life Care Plan: Aids for independent function 3.7 Use standardized categories/tables to list the following recommendation in the Life Care Plan: Disposable medical supplies 3.7 Use standardized categories/tables to list the following recommendation in the Life Care Plan: Home/facility care 3.7 Use standardized categories/tables to list the following recommendation in the Life Care Plan: Transportation 3.7 Use standardized categories/tables to list the following recommendation in the Life Care Plan: Orthotics/prosthetics 3.6 Use standardized categories/tables to list the following recommendation in the Life Care Plan: Surgical intervention 3.6 Use standardized categories/tables to list the following recommendation in the Life Care Plan: Case management 3.6 Include the following components in the Life Care Plan document/report: Summary of total annual costs 3.6 continued next page AANLCP JOURNAL OF NURSE LIFE CARE PLANNING ISSN 1942-4469 702 FA L L 2 0 1 4 PEER-REVIEWED EXCELLENCE IN LIFE CARE PLANNING SINCE 1998 tending independent medical examinations/ evaluations (2.1) (PTC, 2013). The Life Care Plan Development category respondents rated two of the tasks low (<2.5) in frequency of performance, requesting a physician to review without sign-off after completing a Life Care Plan (1.8) and requesting a physician to review with sign-off after completing a Life Care Plan (2.2) (PTC, 2013). Vo l . X I V N o . 3 Most Important Performed Tasks Data analysis identified the most important tasks for competent performance whether or not they are frequently performed. These tasks are rated higher than 3.5 (>3.5) for “highly important for competent performance” (PTC, 2013). Patient Assessment Respondents rated eleven of 25 tasks in this section highly important (>3.5) for competent The Cost Research category respondents performance in the profession. Nine are the rated four tasks low (<2.5) in frequency of per- same they rated high for performance fre- formance. These included: quency. These tasks include documenting: • • • • • Obtaining costs for items and services in a Life Care Plan using national databases (without geographic adjustment) (2.2) Using worker’s compensation fee schedules (2.3) Using collateral resources (2.3) Using alternative payment sources such as cash pay, private insurance, and Medicaid (2.3). Other considerations used in determining life care plan cost included referral source request (2.3) and using Medicare guidelines (2.4) (PTC, 2013). In the Life Care Plan Report Construction category only three of 34 tasks rated low (<2.5) for frequency of performance. These tasks included video of the patient (1.8), photographs (2.0), and Federal Rule 27 disclosure information (2.4) (PTC, 2013). • • • • • • • • • • • Functional abilities pre/post incident (4.0) Current medications (4.0) Date of birth (3.9) Date of injury/loss (3.9) Gender (3.7) Daily or routine schedule (3.7) Face to face contact (3.7) Home/environment evaluation (3.7) Marital/relationship status (3.6) Work/education status (3.6) Family dynamics (3.6) Collaboration with Others Respondents rated six of the tasks in this section high in importance (>3.5) for competent performance, although only four as high for frequency of performance. These tasks included: • In the absence of physician or medical provider input, rely upon medical records (4.0) continued next page AANLCP JOURNAL OF NURSE LIFE CARE PLANNING ISSN 1942-4469 703 FA L L 2 0 1 4 • PEER-REVIEWED EXCELLENCE IN LIFE CARE PLANNING SINCE 1998 Vo l . X I V N o . 3 Request information from treating physicians (3.9) In the absence of physician or medical provider input, rely upon professional education, training, and experience (3.9) In the absence of physician or medical provider input, rely upon provider and/ or expert report (3.8) Consult with experts/specialists for a case (3.7) In the absence of physician or medical provider input, rely upon clinical or published standard of care guidelines (3.7) • Diagnostic testing (e.g., medical labs, radiological studies, neuropsychological, etc.) (3.8) • Orthotics and prosthetics (e.g., braces, ankle/foot orthotics) (3.8) • Transportation (e.g., adapted/modified vehicle, etc.) (3.8) • Renovations for accessibility (e.g., widen doorways, installing wheelchair ramp, etc.) (3.8) • • Health, strength maintenance (3.8) Architectural renovations (e.g., wheel-in shower, elevator, etc.) (3.8) Life Care Plan Development In this section, respondents rated 26 of the 36 • Case management services (3.7) • Nutritional education/support (e.g., weight loss/weight gain) (3.6) • • • • tasks high for importance (>3.5) for competent performance, five more than were rated high for frequency. How to perform life care In addition, tasks included: • Reviewing pre-morbid medical records (3.6) • Reviewing provider and/or expert depositions (3.6)E Reviewing expert reports (3.8) plan development tasks is clearly important, regardless of frequency. These tasks included assessing need for: • Medical care evaluations/services (3.9) • Therapeutic evaluations/services (3.9) • • • Reviewing post-morbid medical records (3.9) Wheelchair/mobility needs (3.9) • Requesting missing records (3.7) • • Independent living ability (3.9) Home/attendant/facility care (3.9) • Identifying pre-existing conditions utilizing a Medical Record Summary (3.6) • Adaptive equipment (3.9) • • Therapeutic equipment (3.9) • Assistive technology (3.9) Using medical experts and/or provider’s opinion for input regarding the content of a life care plan (3.6) • Home furnishings and accessories (e.g., specialty bed, portable ramps, patient lifts) (3.9) Cost Research Respondents rated only four of the tasks in • Medications (3.9) tent performance (3.5>). These tasks in- • Supplies (e.g., bowel/bladder supplies, oxygen, etc.) (3.9) cluded: this section high for importance for compe- • Provider/vendor contact (3.8) continued next page AANLCP JOURNAL OF NURSE LIFE CARE PLANNING ISSN 1942-4469 704 FA L L 2 0 1 4 • • • PEER-REVIEWED EXCELLENCE IN LIFE CARE PLANNING SINCE 1998 Geographic location (3.7) Internet sources (3.6) Recent billing (3.6) Vo l . X I V N o . 3 • List of medical providers/professionals consulted/source of recommendations (3.8) All but recent billing were rated high for per- • Medical diagnoses (3.8) formance frequency.The survey suggests that • • Rationale/purpose for recommendations (3.8) Architectural renovations (3.7) • Transportation (3.7) • Acute medical intervention (3.7) • Case management (3.6) • Summary of total annual costs (3.6) other tasks represented in this section are only moderately necessary for a competent life care planner to know how to perform (PTC, 2013). Life Care Plan Report Construction Respondents rated performing twenty-one of the tasks in this section competently as highly Knowledge Analysis The role delineation task force identified six- important (>3.5). These included using stan- teen knowledge areas that a Certified Nurse dardized categories/tables to list the follow- Life Care Planner should understand. Re- ing recommendations in the Life Care Plan: spondents rated their importance to competent performance. Respondents identified all • • Orthotics/prosthetics (3.9) Durable medical equipment/ replacement schedule (3.9) • Aids for independent function (3.9) • Disposable medical supplies (3.9) • Medications (3.9) • • Future medical care (MDs, etc.) (3.9) Projected evaluations (3.8) the survey. Table 6 shows the average impor- • Projected therapeutic modalities (3.8) scending order. • Ddiagnostic/educational testing (3.8) • • Mobility (wheelchair/scooter/ accessories/maintenance) (3.8) Home/facility care (3.8) • Surgical intervention (3.8) comprehensive description of the tasks and • Narrative component regarding case data (3.8) knowledge used by experienced nurse life as essential for the majority of this category. Knowledge of anatomy and physiology was also required for most of the tasks listed in the Life Care Plan Report Construction section of tance rating of each knowledge area, in de- Summary The 2012 role delineation study of Nurse Life Care Planners in the United States reflects a care planners. The CNLCP® Certification Board will use these data to maintain the certification examination, including updating the continued next page AANLCP JOURNAL OF NURSE LIFE CARE PLANNING ISSN 1942-4469 705 FA L L 2 0 1 4 PEER-REVIEWED EXCELLENCE IN LIFE CARE PLANNING SINCE 1998 Vo l . X I V N o . 3 Table 6 Knowledge Areas Ranked by Number of Tasks Which Require It Knowledge Area Importance Rating Life care planning process/methodology 4.0 Brain 4.0 Nursing process 3.9 Nursing scope of practice 3.9 Spine 3.9 Normal physiology of aging 3.9 Limb function 3.9 Integumentary (skin) systems 3.9 Body organs 3.9 Pain 3.9 Mental health 3.8 Growth and development 3.8 Expert witness qualifications 3.8 Venues in which life care planning is applicable 3.7 Expert witness rules/regulations 3.7 Nursing diagnoses 3.5 test blueprint to reflect current practice and While the role delineation survey results con- expanding the question data bank. The data firmed the importance of each of these com- will also guide educational preparation for ponents to underlying individual assessment entry into nurse life care planning practice. and the resulting Life Care Plan, the survey The study identifies the need to include other also identified that documentation develop- weighted components in the certification ex- ment are the nurse life care planner’s most amination besides the basic six areas of: frequently performed tasks. Hence, we rec- • • Life Care Planning (35%) Spinal Cord Injuries (15%) ommend adding a Life Care Plan Construction • Burns and Amputations (10%) certification examination. • Acquired and Traumatic Brain Injuries (15%) This study supports the mission of AANLCP®, • Neonatal and Pediatric Injuries/Illnesses (15%) assesses the individual, identifies problems, • Chronic Pain (10%) category to the test blueprint for the CNLCP® which states the RN Nurse Life Care Planner plans for appropriate interventions, provides for plan implementation, and evaluates the continued next page AANLCP JOURNAL OF NURSE LIFE CARE PLANNING ISSN 1942-4469 706 FA L L 2 0 1 4 PEER-REVIEWED EXCELLENCE IN LIFE CARE PLANNING SINCE 1998 Vo l . X I V N o . 3 plan using the nursing process (AANLCP®, Certified Nurse Life Care Planner (CNLCP®) Certifica- Mission Statement, 2014). tion Board (2014). Mission Statement. Retrieved from: http://cnlcp.org/mission-statement.htm References Professional Testing Corporation (2013).Role Delinea- AANLCP® Mission Statement (2014). Retrieved from tion Survey Results. http://www.aanlcp.org/?page=MissionStatement Sambucini, A. (2013). History and Evolution of the Accreditation Board for Specialty Nursing Certification Nurse Life Care Planning Specialty. In: D.Apuna- Grummer & W.A.Howland (Eds.), A Core Curriculum for Nurse (2014).Accreditation Standards. Retrieved from: http://www.nursingcertification.org/accreditation-standa rds.html Life Care Planners (pp 1-20). Bloomington: iUniverse. Ꮬ Show Them The Evidence Evidenced-based practice begins with research. " " " If you write life care plans you already do research. " " " " " No fear! Lighten the load! . " " " " Strengthen the practice! Together we can learn the scoop share knowledge build a body of evidence by life care planners for nurse life care planners Participate: email cmanzetti@aol.com AANLCP JOURNAL OF NURSE LIFE CARE PLANNING ISSN 1942-4469 707 Elder Life Care Planning submi&ed by Becky Czarnik RN, MS, CLNC, LNCP-‐C, CMSP Here are two representa,ve examples where an elder care plans were beneficial. Acute Illness in Both Spouses The nurse life care planner received an urgent call asking for help sor,ng through a medical crisis to provide some direc,on about John V., a 73-‐year-‐old male with a permanent tracheostomy and mul,ple thoracic and lumbar compression fractures. John was admiHed to the hospital for an acute myocardial infarc,on, conges,ve heart failure and pacemaker inser,on. His 70-‐year-‐old wife, CharloHe V., is his primary caregiver and in generally good health. CharloHe regularly visited John during his hospitaliza,on un,l one day she did not arrive at her usual ,me. John became concerned and no,fied his neighbors, who went looking for her. She was found unresponsive in her car in the grocery store parking lot. CharloHe was admiHed to the same hospital with an acute leL thalamic intracranial hemorrhage, right sided hemiplegia, and aphasia. John and CharloHe have a long term care policy, some savings, and a Medicare Advantage policy. In collabora,on with the hospital case managers, the Nurse Life Care Planner iden,fied a skilled nursing facility where John and CharloHe could receive the appropriate level of care needed for rehabilita,on while remaining together. The long term care policy required no prior authoriza,on and would pay a maximum benefit of $300,000 per person. The Medicare Advantage policy dictated which skilled nursing facility was within their network and covered 10 days of skilled nursing with a 20% copay. Knowing this informa,on, we were able to plan for at least 10 days of skilled nursing care, skilled home health care upon discharge, and paid caregivers for four hours a day. A “lady from the church” moved in with them to provide onsite oversight. The Nurse Life Care Planner es,mated that this plan would be effec,ve and affordable for the next 6 months. As a result of the couple’s financial and physical fragility, she also made a referral to the area’s Elder Protec,ve Services. The Nurse Life Care Planner determined that the couple could afford 13 months of homemaking/ aHendant care ($2250/month) or sell their home and move into a group home (for about $2500/month) and have some residual income and qualify for Medicaid assistance. The second choice was more secure, and has worked out well for them. A “Healthy” Older Couple A trust officer asked the Nurse Life Care Planner to review a case regarding a “healthy older” couple, Jan and Clare E. They were doing their annual review and wanted to make sure their finances would support their current needs. Armed with a file of medical bills and a brief health history from the couple, the Nurse Life Care Planner prepared a medical cost projec,on. Jan was an 80-‐year-‐old white female whose primary medical concern was pulmonary hypertension status post pulmonary emboli in 2010. She saw a pulmonologist twice a year and had her an,coagula,on status monitored monthly by the community hospital Coumadin Clinic. She used supplemental oxygen, performed ac,vi,es of daily living independently, and par,cipated in outpa,ent pulmonary rehabilita,on three ,mes a week. Clare was an 86-‐year-‐old white male whose primary medical concern, wet macular degenera,on, was diagnosed in 2013. He received intraocular injec,ons every 4-‐8 weeks monthly as indicated by examina,on findings. He could perform most ac,vi,es of daily living independently, requiring assistance only for detailed work, such as bookkeeping ac,vi,es like wri,ng checks and reviewing financial statements. Jan and Clare owned their one-‐story home in a small town in Ohio. Jan was a re,red RN and Clare a re,red physician; they were ac,ve in their church and community. They had five adult children, one living two hours away and the rest scaHered across the country. They obtained their health care from their community hospital and the metropolitan hospital located one hour away. They hired help for home repair, lawn mowing, and snow removal, and did the general housekeeping themselves. They needed frequent rest periods for housekeeping and ac,vi,es of daily living. Jan drove locally and had help from neighbors for addi,onal transporta,on. To cover their medical expenses they both had Medicare coverage (Part A, B and D), a Medi-‐gap supplemental insurance policy, and some private funds. Based upon the interview and review of current expenses the following services were warranted: • Transporta,on for physician appointments and therapy (Jan and Clare) • Housekeeping services (Jan and Clare) • Referral to a low vision therapy team (OT, low vision therapist, Vision Rehabilita,on therapist) (Clare) • Self-‐help ADL vision related devices (Clare) As with tradi,onal medical cost projec,ons, the Nurse Life Care Planner reviewed the couple’s insurance expense coverage and then iden,fied current and an,cipated life ,me needs. Insurance expenses: Insurance Cost Jan Care Medicare A & B Re,rement benefit Re,rement benefit Medicare D $ 847.20 Medi-‐Gap Annual Total Expected life Expected cost ,me * Life,me cost $ 4,189 $ 5,036.20 10 years $ 50,362.00 $ 847.20 $ 4,382 $ 5,229.20 5 years $ 26,146.00 Combined total cost es,mate $ 10,265.40 $ 76,508.00 * Life expectancy and costs are based on the US Life Table, Na,onal Vital Sta,s,cs Reports, Volume 61, Number 3 dated 9/24/2012 the “US Life Tables, 2008” published by the US Department of Health and Human Services, Center for Disease Control, current at the ,me of the plan. These were not rated ages. LifeAme Medical Cost projecAons: Costs were not adjusted for infla,on or growth. * Dura,on (Years) is life expectancy. Jan E ITEM Dura,on Avg # # per (Years)* per year life,me Physician Pulmonologist 10 2 20 Avg. unit Rou,ne Rou,ne $ cost Annual $ for life,me per year $ 106 $ 212 $ 4,240 Coumadin Clinic 10 12 120 $ 80 Subtotal Current Medica,on Warfarin 7.5 mg #30 10 Oxygen 365 10 3650 $ 00.70 3.5 $465 every 36 months Subtotal Therapy $ 9,600 $ 96,000 $ 9,812 $ 10,240 $ 248 $ 2,480 $ 1,627.50 $ 248 Pulmonary Rehab 10 156 1560 $ 180 Subtotal $4107.50 $ 28,080 $280,800 $ 28,080 $ 280,800 Transporta,on Taxi for in town appointments Subtotal 10 Housekeeping General cleaning, services grocery shopping, errands Subtotal 10 2 6 20 60 $ 40 $ 100 Totals $ 80 $ 800 $ 80 $ 800 $ 600 $6, 000 $ 600 $ 6,000 $ 38,820 $ 388,200 Clare E ITEM Dura,on (Years)* Avg # per # per year life,me Physician Ophthalmologist 5 7 35 Avg. unit Rou,ne Rou,ne $ cost Annual $ for life,me per year $ 120 $ 840 $ 4,200 Procedure Ocular injec,on 5 7 35 $ 260 $ 1,820 $ 9,100 Diagnos,c studies Re,nal imaging 5 7 35 $ 62 $ 434 $ 2,170 Medica,on Aflibercept 1mg Low Vision Devices Magnifica,on systems: portable and sta,onary Annual Total LifeAme Total 5 7 35 $2,750 $ 19,250 $ 96,250 1 1 $ 4000 $ 4,000 $ 4,000 $ 26,344 $ 115,720 As a result of expert financial planning and foresight, this couple required approximately $10,000 to pay for their annual insurance premiums. Their out-‐of-‐pocket expense were an,cipated to be less than 1% of projected costs. Therefore, their trust officer made the recommenda,on to set aside $1000 for medical expenses with an annual 1.5% buffer for the cost of infla,on. MEDVIEW MED-LEGAL & CASE MANAGEMENT SPECIALISTS 404 Solano Drive S.E. Albuquerque, NM 87108 505-254-2121 Fax: 505-217-9162 js@med-view.com Roger Lee, Attorney-at-Law Law Offices, PC 888 Rio Grande Blvd NW Albuquerque, NM 87106 Re: John Smith DOB: March 29, 2002 Primary Diagnosis: Spastic diplegic cerebral palsy Secondary Diagnosis: Developmental delay This Life Care Plan has been prepared at the request of John Smith’s attorney, Roger Lee. John is a now four year boy with cerebral palsy and developmental delay. A Life Care Plan is a clinical analysis of the projected lifetime care needs of John and the associated costs of such care. The actual cost of care will depend on maturational changes, choice of healthcare providers and vendors, and geographic location. The scope of this report is not intended to cover all economic and non-economic damages to John and his family. The information and opinions contained within this report are subject to revision and amendment contingent upon receipt of additional information which may become available. John displays cognitive, developmental and physical delays. Attending physician pediatric neurologist John Phillips, MD believes a neuropsychological evaluation can be performed once John is five years old and he has made the referral for such testing. Once the study has been completed, a better prognosis can be made of John’s adulthood. John's private physical therapist Corey Mane believes John has unrealized potential and that with more intensive therapy services in his early childhood years, he may be an independent household ambulator with assistive devices and could possibly live on his own with supportive services. Taking both opinions into account, this consultant has structured the Life Care Plan to include more non-school based therapy services in the earlier years of life and budget for the lowest level of supportive care during adulthood. Joan Schofield, RN, BSN, MBA Certified Nurse Life Care Planner 1 Basis for recommendations: 1. Review of medical records and medical bills 2. Assessment interviews with John's parents on June 30, 2006 and July 18, 2006 3. Discussion with attending physician pediatric neurologist John Phillips, MD and attendance at appointment on July 18, 2006 4. Correspondence with Dr. Phillips re: future needs 5. Telephonic conference with physical therapist Corey Mane on November 21, 2006 6. Medical and rehabilitation literature review 7. My education, training, knowledge and experience as a Life Care Planner, Catastrophic Injury and Rehabilitation Case Manager, and twenty-five years experience as Registered Nurse, including work with children and adults with disabilities. 2 Medical Summary John was born prematurely via normal spontaneous vaginal delivery after artificial rupture of membrane with clear fluids in the Sierra Lista Emergency Room at twenty eight weeks of age by ultrasound according to contemporaneous birth records. His mother’s course of pregnancy was healthy with the exception of an upper respiratory infection. His Apgar scores were 7 at one minute and 9 at five minutes. Birth weight was 3lbs. 2oz. He was transferred to Providence Memorial Hospital in El Paso, Texas for definitive care, staying in their neonatal ICU from May 29, 2002 until September 21, 2002 when he was discharged home to the care of his parents on room air and Caffeine to manage apnea and bradycardia spells. He was intubated for a total of two days and required nasal C-PAP on two additional episodes. He developed several complications associated with prematurity: necrotizing enterocolitis, gastroesophageal reflex, apnea and bradycardia, possible sepsis at least three times, and a small patent ductus arteriosis which was treated with Indocin. He received phototherapy for hyperbilirubinemia. Intracranial ultrasounds were normal. Retinopathy of prematurity was resolved by the time of discharge. John initially was evaluated for developmental delay in Wyoming where the family was living at the time. In October of 2003, he was subsequently evaluated by and qualified to receive Early Intervention services from Tresco, Inc. in Las Cruces. At that time he was sixteen months old with an adjusted age of thirteen and a half months. Gross and fine motor, speech and language, cognitive and self-help skills developmental delays, greater than 25%, were present. John underwent an initial evaluation in the Carrie Tingley Pediatric Multidisciplinary Spenser Cerebral Palsy Clinic on May 18, 2004. Examination by John P. Phillips, MD of the cerebral palsy clinic was significant for the following abnormal findings, intermittent bilateral estropia, slightly decreased tone in the upper extremities, and mild spasticity of the of the lower extremities, especially the hamstrings. Dr. Phillips concluded that John, then two years of age had a history and physical examine consistent with mild spastic diplegic cerebral palsy with developmental delay. Initiation of therapy services was recommended. At that time, the spasticity was not limiting him and it was recommended that he engage in ongoing physical therapy before making decisions about focal spasticity treatment such as stretching, strengthening, bracing, or medication management with oral or focal Botox injections. It was Dr. Phillips opinion that the etiology was most like related to his prematurity although a brain MRI scan was suggested to insure that no other developmental abnormality was present. Pediatric neurologist Margaret Armstrong, MD also evaluated John, noting additional problems of chronic constipation treated with herbal laxatives, occasional choking on solid foods, and immature development of communication. At two years of age he was unable to sit independently unassisted although he was able to communicate simple words but primarily used whining to communicate. He was a well developed well nourished child. When he was seen 3 months later in the Cerebral Palsy Clinic on September 21, 2004, it was observed that he had made gains in language development and communication since receiving therapy services through Tresco. Equipment concerns were raised. It was thought that he may be a candidate for a gait trainer walker and that a formal equipment evaluation would be the best way to approach this. Upon examination, his hamstrings were quite tight and his ankles were even tighter with dorsal flexion. When upright with assist, he was able to take steps with support showing some scissoring and toe walking. Dr. Phillips noted that the MRI scan was suggestive of periventricular leukomalacia which is typically seen in children born between 24 and 34 weeks gestation which Dr. Phillips offered would explain John’s spastic diplegia. Also, as expected with the condition, his spasticity was getting worse and various treatment options were discussed with the family. In addition to ongoing therapy, it was agreed that Botox injections into the lower extremity muscles would be done. Medical records review show this was accomplished on November 16, 2004 with Botox injections in to both the left and right gastrocnemius by Dr. Phillips with a plan to initiate serial stretch casting to improve range of motion 3 afterward. The Botox injections were done for equinus contracture due to his spastic diplegic cerebral palsy. On November 23, 2004 bilateral serial stretch casting was initiated through Carrie Tingley in an effort to improve his ankle range of motion, which is needed for a more normalized gait pattern and progress toward physical therapy goal accomplishment. He was then moved into an Ankle-Foot-Orthosis (AFO) orthothic appliance on December 15, 2004. On January 13, 2005, he was issued a gait trainer for home use for ambulation training. It was recommended that the AFO be used primarily at night to provide prolonged stretch as the device did not assist well with ambulation. In 2004 and 2005, John has several upper respiratory infections and right lower lobe pneumonia, typically treated with nebulizer treatments and antibiotics. On July 8, 2010, John underwent bilateral tendon lengthening of his tibial tendons by Carrie Tingley surgeon Dr. Coronado per referral of Dr. Phillips after the Botox injections not longer had sufficient beneficial effect. As of the November 9 2010 onsite evlaution, John was ambulating short distances with bilateral AFO brace and a gait trainer walker and his mother pushed him in a large size specialty stroller the majority of the time. REVIEW OF SYSTEMS: • INTEGUMENT (SKIN) STATUS No skin breakdown events to date. John should be at minimal risk for skin breakdown in later years unless he is confined to a wheelchair for a major portion of the day. • NEUROLOGIC STATUS Mrs. Smith recalls noting signs of developmental delay when John was about nine months old. He was formally evaluated and enrolled in an Early Intervention Program, Tresco Tots, for comprehensive multidisciplinary treatment. He then transitioned to the public school system’s early childhood program, receiving eight hours a week of therapy services and specialized pre-school. The May 2007 IEP report indicates John continues to have significant delays in receptive and expressive language skills, and gross and fine motor skills. The report cites cognitive delays as a concern which may impact his ability to access the general curriculum. A detailed plan was been developed to support John as he enters kindergarten in the fall of 2008. In addition, he receives private therapy twice a week. John has spastic diplegic cerebral palsy. His physical therapist and mother report that lower extremity muscle tone can rapidly fluctuate. Pediatric neurologist Dr. John Phillips wrote in his evaluation report of July 18, 2006 that the most recent brain MRI of June 23, 2004 may represent occipital lobe periventricular leukomalcia. He has not experienced seizures nor is he on antiseizure medication. • CARDIOVASCULAR/HEMODYNAMIC STATUS No active problems or risks at this time. In later life, risk for developing claim related cardiovascular problems in later life should be no greater than the general population unless John is immobile a great portion of the day and leads a very sedentary lifestyle. • RESPIRATORY STATUS John had respiratory distress syndrome and pulmonary insufficiency of prematurity after his premature birth at 30 weeks of age. He was on mechanical ventilation during part of his initial hospitalization in the NICU. He was discharged to home on room air at two months of age. Caffeine was prescribed for management of apnea and bradycardia spells for the first six months of life. During the first year, he had repeat bouts of bronchitis, several resulting in hospitalization. Nebulizer treatments are still occasionally necessary during wintertime to maintain adequate aeration but otherwise John is usually healthy from a pulmonary standpoint. The May 1, 2007 speech and language evaluation showed John to have functional breath support at an age-appropriate level. 4 • GASTRIOINTESTINAL (GI) AND ABDOMINAL STATUS Chronic constipation was an active problem in John’s earlier years but is now well managed. • GENITOUROLOGIC (GU) STATUS No active problems or risks. • MUSCUOSKELETAL STATUS Mrs. Smith notes her son’s muscle tone varies during the day and other than cold temperatures, there does not seem to be any particular inciting factors. Trunk: Fair trunk control was exhibited during the most recent examination by Dr. Phillips. Postural trunk stability was achieved only by proper positioning and propping by his mother. His shoulders were rounded and he hunched forward but did not fall over when placed into a cross-legged position. His physical therapist is working with him on positioning, balance and developing his core muscle groups to minimize the risk the risk of secondary injury due to falls. Lower extremities: Spastic diplegia present with tightness of the hamstrings limiting popliteal motion to 140 degrees bilaterally and also ankle tightness. He will most likely be a candidate for tendon lengthening surgery while in early elementary school. Botox injections followed by serial casting done in 2004 was fairly effective in managing spasticity and preventing further contracture for about eighteen months. The treatment course was to be repeated this summer, however, according to physical therapist Corey Mane, a decision was made to put it on hold as John began to rapidly progress in his ambulation and standing skills. Upper extremities: John has right greater than left spasticity of the upper extremities. His grip and pinch strength are adequate for age appropriate activities but impaired fine motor skills continue to be addressed in therapy. Dr. Phillips believes lifetime rehabilitation services will be needed on an episodic basis to maximize independence and optimal functional status, both physical, emotionally, and vocationally. According to Dr. Phillips, increased muscle tone can be expected as John ages and will most likely require oral antispasmodic medication(s) such as Baclofen or a Baclofen pump. Remaining active throughout his lifetime, regardless of his method of mobility, will be important to minimize the risk of arthritis due to inactivity. • NUTRITIONAL/METABOLIC STATUS John is within ideal body weight for his height. He is at the 50th percentile for four year old boys in terms of head circumference and weight. Prior problems with swallowing coordination and choking with eating and delayed diet advancement (around the age of two) have resolved. No current nutritional or metabolic problems have been identified. • INFECTIOUS DISEASE STATUS Non-contributory • PSYCHIATRIC/BEHAVIORAL Behavioral problems have not been identified by John’s therapists and physicians, nor reported by the parents. He is a likeable child, albeit on the shy side. His physical therapist describes him as motivated to succeed. 5 • PREMORBID/INTERCURRENT CONDITIONS None • HEARING AND VISION Hearing has been tested as normal (June 23, 2004; UNM Audiology Evaluation by Florence Peterson M.A.) Left eye strabismus is diagnosed by UNM pediatric ophthalmologist Dr. Woods. No visual deficits have been identified and there is no plan for routine follow up. FAMILY SUPPORT John’s parents are highly supportive. Mrs. Smith has undergone training in “Conductive Education” to better help support her son and facilitate his development. There are extended family members locally in Truth or Consequences to provide emotional and hands-on assistive support. Physical Therapist Corey Mannan emphasizes the excellent follow through with recommendations by John’s parents and grandparents. MARITAL STATUS/FAMILY COMPOSITION John has one sister who is two years old. EDUCATION The May 2006 Preschool Individualized Assessment and plan concluded that “John’s fine and gross motor delays have significantly impacted his ability to be independent with age-appropriate skills, to safely negotiate throughout the preschool environment, utilize school resources (bathroom, playground equipment, cafeteria), and access general education curriculum unless modifications and accommodations are given to him”. Continued 100% segregated Early Childhood Education preschool classroom augmented by 0.5 – 1.5 hours per week of physical, occupational and speech therapy. FUNCTIONAL STATUS ASSESSMENT SELF-CARE – eating, grooming, bathing, and dressing upper and lower body John is delayed compared to his peers in his ability to initiate and perform self-care activities. He has learned to eat independently using regular utensils and a cup. COGNITION – problem solving, memory, orientation, and attention Dr. Phillips has referred John for a neuropsychological evaluation within the next year to more accurately assess where John stands in relationship to his peers in the various realms of neuropsychological functioning and cognitive skills. According to the May 2006 Preschool Individualized Education Assessment and Plan, Johns demonstrates delays in learning readiness skills. Problems with attention have not identified. COMMUNICATION – comprehension, expression, reading, writing, speech intelligibility, and swallowing As of July 2006, John could speak in short sentences and communicate his needs. His speech was clear. He is behind his peers in language development. He demonstrates delays with functional communication skills, including difficulty expressing his needs and wants most of the time, although his receptive language appears to be within normal range for age. Dysphagia (problems with swallowing) from earlier years have resolved. 6 BEHAVIOR – social interaction, emotional status, and adjustment to limitations John reportedly interacts appropriately at home, in the community and in his pre-school environment. MOBILITY John learned to crawl at the age of three and can do so independently for mobility within the home. He requires hands-on assistance or a specialized walker/gait trainer to stand and ambulate, walking on his tip toes with short steps, for short distances. Eighteen months prior to the July 2006 evaluation by Dr. Phillips and before the Botox injections with serial casting, John could only take a few short steps with assistance. He can now use his walker for short-distance ambulation, evidence of some progress. He has a Rifton gait trainer type walker which provides extra trunk stability and support. Ms. Mane believes John has the potential to learn to use a manual wheelchair for community mobility. He has used an AFO (ankle-foot orthosis) intermittently over time. New ones would need to be fabricated repeatedly over time as John grows. Based on the conversation with Dr. Phillips at the time of the July 2006 evaluation and accompanying report, more likely than not, John will not progress to independent ambulation, although there is a possibility of such advancement. Ms. Mane is more optimistic about the prospect of John becoming an independent household ambulator with an assistive device. ELIMINATION – bowel management and bladder management Bowel, bladder and toilet training is delayed and had not been fully achieved as of May 2006. HOUSEHOLD MANAGEMENT – Money management, housekeeping It should be anticipated that John will need assistance with money management, housekeeping, home maintenance, transportation and community access. Once the neuropsychological evaluation is completed, a better projection can be made of these needs. The public school will most likely provide basic money training skills as part of his special education curriculum; however, his ability to safely implement such skills or advance towards independent financial management of his monies is uncertain at this point in time. 7 John Smith PROJECTED FUTURE COSTS A. PROFESSIONAL SERVICES AND THERAPIES DESCRIPTION YEAR COST TOTAL NUMBER OF VISITS ANNUAL COST Outpatient P.T. Twice a week Ages 8 - 10 $175 100 $17500 Weekly Ages 11- 14 $175 50 8750 Episodically, averaging 16 sessions per year. Ages 12 – 18 $175 16 2800 Ages 19 – Life Expectancy $175 2 350 Ages 4 – 10 $175 50 8750 Ages 11 - 18 $175 16 2800 2007, 2013, 2017, 2027, 2047 $1500 n/a Episodically in adult, 2 sessions per year Outpatient S.L.T. One hour per week through age 10 for the next three years to prepare him for kindergarten through early school years. Episodically thereafter for an average of 16 sessions annually. Neuropsychological Evaluation Evaluation upon entering kindergarten, mid school, and high school, once in his mid twenties, and last one in mid-life. 8 John Smith PROJECTED FUTURE COSTS B. MEDICAL CARE DESCRIPTION YEARS Rehabilitation physician: Physiatrist, neurologist or other qualified physician to manage conditions related to cerebral palsy Lifetime $70 2 visits $210 Episodically over Lifetime $120 Every 3 years $40 Orthopedist to evaluate, monitor and surgically treat joint contractures E.R. Visits- none budgeted although at risk for secondary injury due to falls secondary to impaired mobility Hospitalizations- none budgeted other than tendon lengthening although at risk for secondary injury due to falls secondary to impaired mobility Surgeries Repeat tendon lengthening after growth maturity COST FREQUENCY ANNUAL COST Once age 20 9 John Smith PROJECTED FUTURE COSTS C. DIAGNOSTIC STUDIES DESCRIPTION Upper/Lower Extremity and Spine X-Rays to evaluate possible bony changes and joint changes due to increased stress associated with impaired mobility and gait YEARS Lifetime COST FREQUENCY $140 Intermittently – budget for average of 1 joint/limb per year, frequency increasing with age ANNUAL COSTS $140 10 John Smith PROJECTED FUTURE COSTS D. MEDICATIONS DESCRIPTION YEARS Baclofen or other oral antispasmotic – Dr. Phillips hopes this will not be needed. He particularly lacks to avoid its use in childhood due to the medication’s sedating effect Over the counter or mild prescription strength analgesics for expected joint pain with aging sue to increased stress on the joints due to impaired mobility and altered gait pattern uncertain Ages 20 – lifetime COST PER UNIT $10 UNITS PER YEAR 12 CURRENT ANNUAL COSTS $120 11 John Smith PROJECFTED FUTURE COSTS E. DURABLE MEDICAL AND ADAPTIVE EQUIPMENT, MOBILITY AIDS DESCRIPTION Shower Chair for safe bathing due to impaired ability to stand independently for prolonged periods & hand held shower hose Gait trainer walker1 for moderate distance walking as youth Front wheeled walker – replacement every 2-3 years until age 18, the every 5 years. PT Corey Mane believes John possesses the capacity to advance to a walker in later youth Manual wheelchair for community mobility (currently parents use a stroller, which is quite embarrassing for 8 year old John). PT Corey Mannan believes John has capacity to learn to use a manual self propelled wheelchair. This consultant recommends one with power assist wheels ($6000/set) in adulthood for easier propulsion and to limit damage to shoulder joints) YEARS COST REPLACEMENT ANNUAL COST Ages 16 Lifetime $150 Every 5 years $30 Age 11 $750 None Ages 12 – 18 $209 Every other year 105 19 - Lifetime $209 Every 5 years 42 Ages 7 – Lifetime $10,000 Obtain initial one at age 9 and replace at age 16, exact ages depending on growth maturation rate. Replace every 10 years as an adult (less often than typical replacement schedule as it will not be the 1 The Rifton Gait Trainer is a type of walker, which provides considerable postural support for the user. It comes in a range of sizes that caters for tiny children through to adults. Each size has a range of adjustable features that can be adjusted to meet individual needs. This walker has been superseded by the Pacer Gait Trainer, which is a redesign of the Rifton Gait Trainer. It is suitable for children and adults who require moderate to maximum support for walking. The fame is made of aluminum. The large castors offer a range of functions -- gradual brake/drag, brake lock, swivel, swivel lock and one-way ratchet control. This gives a wide range of control in speed, direction and maneuverability. Three sizes are available - user elbow heights from 44.5 to 119.5 cm. 12 Wheelchair Maintenance/Repairs and Power assist battery ($780) replacement every 3 years Wheelchair cushion, basic type due to minimal amount of time expected to need wheelchair Exercise table matt for home stretching and exercise program needed to maintain Standing frame for stretching, similar to one used in school Ages 7 Lifetime $360 primary means of mobility) Annually Ages 7 – Lifetime Ages 12 – Lifetime Age 16 $100 Every other year $50 $570 Every 10 years $57 $5000 Replace once at age 35 $100 13 John Smith PROJECTED FUTURE COSTS F. HOME CARE BASED CARE OPTIONS DESCRIPTION At this time, based on available data and opinions, this consultant is recommending budgeting for the minimal level of “Supportive Living” support services as defined by the State of New Mexico. This assumes John will be able to live in a house or apartment with intermittent support services such as those described below. Should the neuropsychological evaluation test findings indicate John has cognitive impairments of a severity to, more likely than not, warrant a need for more extensive residential supportive care, the cost per month would increase to $2458/month ($29,496 annually2). COST $1693/month 3 DAYS Year round starting at age 20 through lifetime ANNUAL COST $20,316 “These services are intended to provide the support needed to live a satisfying life in the community and may include assistance with money management, meal planning and preparation, health monitoring and maintenance, personal care, household care, planning and participation in recreation and leisure activities, medication administration and/or assistance and nursing support, and developing effective self-advocacy skills. Individuals may receive these services in their family home or in their own home. In all environments, these services focus on increasing, maintaining, or promoting independent functioning, social and relationship skill development, and full participation in the community. A 24-hour on-call system provides emergency backup support for all individuals receiving Supported or Assisted Living services in order to assure the health safety of the individual. These services are designed around each individual’s unique needs and desires and promote the individual’s capacity to live independently and as a full member of the community. “ Tresco, Inc.; Las Cruces based provider of Assisted Living Services 2 Vendor payment rate 2006; NM Long Term Care Services 14 G. TRANSPORTATION Transportation needs are unknown at present. It is the opinion of this consultant that more likely than not, John will not be able to operate a vehicle and drive. He will most likely be dependent on others and public transportation. Wheelchair accessible transportation will be needed. The cost to convert a van is typically $27,000 - $32,000. H. ARCHTITECTURAL/HOME MODIFICATIONS John will need to live in a home or apartment with universal design and easy accessibility. The front door of the existing home will need a ramp and to be widened once John learns to use a wheelchair. Ceiling track systems for transfers may be needed as John grows in size. Cost projections for this expense category may be offered at a later time as the current home is rented. 15 Life Care Plan For Paula Brown 12/20/2011 Prepared by: Patricia Rapson, RN, CCM, CNLCP, CLCP, CBIS, MSCC Table of Contents Demographic Information ......................................................................................3 Introduction ............................................................................................................3 Methodology ..........................................................................................................4 Medical Records Reviewed ...................................................................................5 Description of Injury/Summary of Medical Care ....................................................5 Phone Conference with Dr. Paul Revere .............................................................12 Current Treatment Regimen ................................................................................13 Medications ......................................................................................................13 Treating Physicians ..........................................................................................14 Current Functional Status ....................................................................................14 Equipment ............................................................................................................14 Supplies ...............................................................................................................15 Attendant Care .....................................................................................................15 Pre-Injury Status ..................................................................................................16 Pre-Injury Medical History/Co-Morbid Conditions ................................................16 Psychosocial Considerations ...............................................................................17 Reaction to Illness/Injury ..................................................................................17 Social / Community Activities / Hobbies ...........................................................17 Available Resources ........................................................................................17 Home Environment / Accessibility .......................................................................17 Nursing Diagnoses ..............................................................................................18 Education / Vocational Issues ..............................................................................19 Education .........................................................................................................19 Work History .....................................................................................................19 Life Expectancy ...................................................................................................19 Potential Care Needs ...........................................................................................20 Discussion............................................................................................................21 Ankle Anatomy .................................................................................................21 Bi-Malleolar Ankle Fracture and Posttraumatic Arthritis ...................................22 Ankle Fusion ....................................................................................................23 Complex Regional Pain Syndrome ..................................................................25 Spinal Cord Stimulation (SCS) for Chronic Pain ..............................................28 Comments / Conclusions .....................................................................................30 References ..........................................................................................................31 Life Care Plan RE: Paula Brown Demographic Information DOB: 1/19/19xx Case #: DOI: 3/3/20xx SS# Address: Jurisdiction/State: Medical Diagnoses ICD-9 824.4 716.17 718.47 719.47 998.78 733.81 845.00 727.06 724.2 338.4 300.4 337.22 Description Left Ankle Bimalleolar Fracture, closed Traumatic Arthritis, Left Ankle Contracture of Ankle and Foot Joint Pain in Joint, Ankle and Foot not otherwise specified Other Complications due to Internal Orthopedic Device Implant and Graft Nonunion of Fracture Ankle Sprain, Left Tenosynovitis of Foot and Ankle Lumbago Chronic Pain Syndrome Depression with Anxiety, Chronic Regional Pain Syndrome (CRPS) Introduction The following Life Care Plan was developed at the request of Ms. Brown’s attorney, to address Ms. Brown’s current medical status and project her anticipated future medical care with associated costs related to injuries she sustained in the 3/3/20xx motor vehicle accident. 3 of 32 Methodology This Life Care Plan report and its attachments represent a dynamic document based upon review of the records, data analysis and research. This review also considered past patterns of utilization, responses to prior treatment regimens, review of the current medical status, availability of resources in the community and the impact of aging and/or progression of disease or disability. Past medical, social, psychological, vocational, educational and rehabilitation data was considered to the extent that it was available and applicable. A logical and systematic methodology was utilized to create an organized concise plan which projects anticipated medically appropriate care and services. The goal of this plan is to promote prompt access to medical care and supportive services to promote health, maximize overall functioning and prevent, or significantly reduce, known complications and/or co-morbidity over one’s life time. The Life Care Plan serves as a guide for family members, case managers and health care providers. It represents a blueprint for anticipated health care and other related needs based on reasonable medical and rehabilitation probability and current concepts of patient care management. The information can also be used by those given fiduciary responsibility to monitor and allocate funds and/or select appropriate investment strategies designed to preserve funding so that remains available over ones life time. Illustrations within this report are provided to facilitate and enhance the readers overall understanding and not meant to be an exact representation of Ms. Brown’s injuries and/or conditions. The pricing for each item on the attached spreadsheet has been researched, verified and represents costs for goods and services relative to the geographic domain where the majority of care is anticipated. The Life Care Plan pricing was based on both actual costs/expenses for services and/or the appropriate state usual and customary reimbursement rates for the corresponding codes (CPT, HCPCS etc). Calculations utilize the mean costs and frequencies of the items listed, thus providing for fluctuations in both the level and intensity of services received over life expectancy. Costs contained within this Life Care Plan reflect the “Current Value” of items and services, or what it would cost if provided today. Should “Total Present Value” calculations be required, a qualified economic expert should be consulted. 4 of 32 Medical Records Reviewed 1. City Fire Department, 3/3/20xx 2. State Peace Officer’s Crash Report, 3/3/20xx 3. Memorial Hermann Northwest Hospital, 3/3/20xx, 3/12/20xx - 3/15/20xx 4. Barton Kendrick, MD, 3/3/20xx, 3/9/20xx, 3/19/20xx, 3/24/20xx, 4/7/09, 5/21/20xx, 6/4/20xx, 7/7/20xx, 8/25/09, 8/31/20xx, 9/23/20xx, 9/24/20xx, 10/14/20xx 5. Memorial Hermann Home Health, 4/22/09, 4/23/09, 4/27/20xx, 5/1/20xx, 5/4/20xx, 5/6/20xx, 5/7/20xx, 5/8/20xx 6. Davidson Physical Therapy, 5/21/20xx – 6/8/2008, 6/29/20xx 7. Tomiko Jefferson, MD, 10/6/20xx, 10/15/20xx, 11/18/20xx, 12/14/20xx, 1/26/2010, 8/10/2010, 11/12/2010, 11/23/2010, 12/16/2010, 3/3/2011, 5/10/2011, 5/26/2011, 6/7/2011, 6/9/2011, 7/6/2011, 9/8/2011, 10/11/2011, 10/12/2011 8. Sharasra Multi-Specialty, 2/9/2010, 2/11/2010, 2/16/2010, 2/23/2010, 2/25/2010, 3/2/2010, 3/4/2010, 3/9/2010, 3/11/2010, 3/23/2010, 3/25/2010, 4/1/2010, 4/6/2010, 4/8/2010, 4/13/2010, 4/15/2010, 4/21/2010, 4/27/2010, 4/29/2010, 5/4/2010, 5/6/2010, 5/11/2010, 5/13/2010, 5/18/2010, 5/23/2010, 5/25/2010, 6/1/2010, 6/8/2010, 6/15/2010, 6/22/2010, 6/29/2010, 7/6/2010, 7/13/2010, 7/20/2010, 7/27/2010, 8/4/2010, 8/11/2010, 8/18/2010, 8/25/2010, 9/1/2010, 9/8/2010, 9/15/2010, 9/22/2010, 9/29/2010, 10/6/2010, 10/13/2010, 10/20/2010, 10/27/2010 9. Diagnostic Clinic of State, 12/5/2011 10. Deposition: Tomiko Jefferson, MD, 10/25/2011 11. Deposition: Paula Brown, 3/9/2011 12. Bills and Payments Description of Injury/Summary of Medical Care On 3/3/20xx, Ms. Brown was the restrained driver of a vehicle and was involved in a motor vehicle accident (MVA) as she approached an exit. Records described a side impact at an estimated speed of 40 mph. Ms. Brown’s vehicle then proceeded to hit the cement barriers on either side of the exit ramp. Per the City Fire Department report, her vehicle sustained severe damage. In her 3/9/2011 deposition, Ms. Brown testified that her vehicle bounced between the two concrete barriers like a “ping pong ball” from one side to the other. She reported hitting her head on the windshield as well as other body parts which hit the car’s interior. She was assisted out of the vehicle by others who had stopped at the scene and was found sitting on the ground when the City Fire Department arrived. 5 of 32 Ms. Brown was alert and orientated at the scene with a Glasgow Come Scale score of 151. She complained of bilateral wrist, left ankle, right knee, neck and back pain and was noted to have left ankle swelling and multiple abrasions to the left ankle, right knee and left wrist. Ms. Brown was placed in a cervical collar, back board and transported to Memorial Hermann Northwest Hospital’s emergency room. In the emergency room, she complained of pain as a 10/10 on a numeric pain scale2. She was provided with intravenous morphine and a Toradol injection for her acute pain3. She received clearance from her spinal precautions and the cervical collar and backboard were discontinued. Left ankle x-rays confirmed a severely comminuted bi-malleolar fracture with associated soft tissue swelling4. A splint was applied to Ms. Brown left ankle and she was provided with a walker, oral pain medications and instructions to follow up with Barton Kendrick, MD, an orthopedic surgeon. At the time of his 3/9/20xx evaluation, Dr. Kendrick noted severe edema, bruising and the development of a large anterior-medial fracture blister5. Ms. Brown was non ambulatory and complained of constant burning, stabbing, shooting, sharp and achy pain at a level of 10/10. Surgery was scheduled and she was admitted to Memorial Hermann Northwest Hospital two days later. On 3/13/20xx, Dr. Kendrick performed an Open Reduction with Internal Fixation (ORIF) of the left ankle fracture. In his operative report, he noted the fracture was highly comminuted (with many fragments). Plate and screw fixation was provided after which a short 1 The Glasgow Come Scale (GCS) is based on a 15 point scale for estimating and categorizing the outcomes of brain injury. The number helps medical practitioners categorize four possible levels for survival, with a lower number indicating a more severe injury and a poorer prognosis. 2 Although there are different types of pain rating scales (numeric and visual), on a scale with numeric rating of 0 to 10, 0 typically refers to no pain and 10 refers to severe pain. Although these scales are highly subjective, the individual is able to compare their ratings so that if pain was considered a 6 one week and a 3 the next, it shows an improvement of their symptoms and vice versa. 3 Morphine is a pure opioid analgesic which was used to manage Ms. Brown’s acute pain. When administered intravenously, rapid onset of analgesia occurs. Toradol is a nonsteroidal anti-inflammatory medication used to treat pain and decrease inflammation. 4 Please see the Discussion section of this report for additional information on Bi-Malleolar ankle fractures 5 Fracture blisters are most commonly associated with fractures of the leg, ankle, forearm and wrist. They are caused by the combination of excessive swelling and a torsional type injury to the tissues which overly the fractured bone. The “blister” represents an area of damaged and/or necrotic epidermis. 6 of 32 leg splint was applied. During her hospital stay, occupational and physical therapy were initiated. Problem areas included balance deficits, decreased activity tolerance and deficits in her functional mobility (including bed mobility and transfers). Prior to her admission, Ms. Brown reported she had tried to use a rolling walker at home, but had fallen and therefore was relying on a wheelchair for mobility. However, because the bathroom at her condo was not wheelchair accessible, the rolling walker was utilized for toileting activities. Physical therapy reported that she was fearful of ambulating with the rolling walker and would likely rely on the wheelchair as her primary means of mobility, using the walker only for very short distances. Her therapists noted several safety concerns as Ms. Brown demonstrated impulsiveness, trying to get up without assistance and tended to sit down without assuring her wheelchair, bed or chair was behind her. Multiple verbal cues were also required for safe ambulation. By the time of her discharge, Ms. Brown continued to require moderate physical assistance with mobility including lying to sitting, scooting, and bed to chair transfers. She required moderate to maximum physical assistance for sit to stand activities. She was able to ambulate short distances (0 – 45 feet) using her rolling walker but required at least one seated rest break to accomplish this. Home health services were recommended to include physical therapy, a home health aide and a social work consult. Additional equipment included an elevated toilet seat, grab bars, a tub transfer bench and a rolling walker with a seat. Her left ankle remained too swollen to be casted at her post operative office visit with Dr. Kendrick (3/19/20xx) so the posterior splint was maintained for an additional week after which a short leg cast was applied. Ms. Brown continued strict non weight bearing on the left lower extremity and continued to report significant pain. She gradually improved and by her 4/7/20xx office visit reported her pain at a 4/10 level. X-ray’s confirmed some interval healing with an acceptable alignment of the bones. Ms. Brown had reportedly removed her own cast due to wetness the previous day. Dr. Kendrick placed her in a walking fracture boot with instructions to initiate weight bearing as tolerated on the left leg. Home physical therapy was not initiated until 4/23/20xx as they had difficulty reaching Ms. Brown for scheduling. She reported increased pain with physical therapy and when she returned to see Dr. Kendrick on 5/5/20xx, she reported panic attacks and nightmares regarding the accident. Records described her mood as alert, anxious and depressed. Moderate left ankle swelling persisted and marked joint stiffness was noted as Mr. Kendrick was unable to 7 of 32 passively dorsiflex her ankle to a neutral position6. Dr. Kendrick reviewed and encouraged her to perform stretching exercises several times a day and out patient physical therapy was prescribed. Ms. Brandon attended four out patient therapy sessions at Davidson Physical Therapy and discharge was recommended due to her failure to complete treatments. Left ankle pain and swelling persisted. On 7/7/20xx, Dr. Kendrick noted that while the distal fibular fracture had healed (lateral malleolus); the medial malleolus fracture exhibited a progressive fragmentation. By 8/25/20xx, Ms. Brown left ankle remained moderately swollen and could not be brought to a neutral position. She reported persistent pain of 6/10 and was unable to put any weight on her left lower extremity. Dr. Kendrick prescribed Celebrex7, Norco8 and added a Medrol dosepak9 to her medication regimen. A CT scan of her left ankle revealed the development of significant posttraumatic arthritis with global narrowing of the joint space as well as marked irregularity and erosion of the articular surfaces of the tibia and talus10 and bony debris in the joint space. Dr. Kendrick opined Ms. Brown would continue to do poorly in light of the extensive joint damage and referred her to the Fondren Orthopedic Group for further assessment and treatment. On 10/6/20xx, Dr. Tomiko Jefferson evaluated Ms. Brown. Although she continued to utilize a walker to ambulate, she had stopped wearing the boot due to ankle swelling. Ms. Brown complained of moderate, intermittent shooting and achy pain which worsened with activity. She continued to take five to six Norco per day and had developed a patchy rash on the anterior 6 Dorsiflexion refers to pulling your foot up towards the leg, while a neutral position would represent the foot as flat on the floor while standing or at a 90 degree angle to the leg. So in this case Dr. Kendrick was not able to push Ms. Brown’s foot upward to reach the neutral position. 7 Celebrex (Celecoxib) is a COX-2 inhibitor NSAID which works by blocking certain substances in the body that cause inflammation. Celebrex is used to treat pain and symptoms of inflammation, arthritis and acute pain in adults 8 Norco (Hydrocodone) (also known as Vicodin, Lortab, Lorcet) is a tablet containing a combination of Tylenol (acetaminophen) and hydrocodone. The hydrocodone is a narcotic pain reliever. The Tylenol works with hydrocodone to increase its effectiveness. Norco is indicated for relief of moderate to moderately severe pain 9 Medrol Dosepak contains the steroid Methylprednisolone which prevents the released of substance in the body that cause inflammation. 10 Please see the Discussion section of this report for additional information on posttraumatic arthritis. 8 of 32 aspect of both her shins. On examination of the left ankle, Dr. Jefferson noted 2+ pitting edema11 and a relatively vertical left hind foot. In addition to the post traumatic arthritic changes noted above, diagnostics also confirmed a nonunion of the medial malleolus, fragmentation of the distal fibula and migration of the fixation screws (backing out). She diagnosed traumatic left ankle arthritis and an equinus contracture of the left ankle and foot joint12. Dr. Jefferson discussed both conservative and surgical options with Ms. Brown and ultimately surgical fusion of the ankle with hardware removal and correction of the contracture deformity was planned. Ms. Brown received surgical clearance, however decided to postpone the procedure to a time when she could be off work during her recovery. She was provided with a steroid joint injection in late January, 2010, but only received transient relief with this. Two weeks later, Ms. Brown was evaluated by Iesha Grant, a nurse practitioner at Sharasra Multi-Specialty. Ms. Brown reported persistent low back and left ankle pain since the 3/3/20xx MVA. She reported feeling anxious, depressed and unable to work or sleep more than four hours a night, often waking up crying due to the pain. Ms. Grant diagnosed back pain (lumbago), chronic pain syndrome and depression with anxiety. She recommended psychotherapy and prescribed physical therapy and medications to include Soma, Lorcet and Zoloft. Between 2/9/2010 and 10/27/2010, Ms. Brown presented to the Sharasra clinic on approximately 48 occasions13. Ms. Brown reported that Ms. Grant provided medical 11 Edema is the noticeable swelling which results from fluid accumulation in body tissues. If an indentation is left after pressure is applied (i.e. pressing a finger into the swollen area) it is referred to as Pitting Edema. 12 Equinus or “foot drop” is a condition in which the upward bending motion of the ankle joint is limited. Someone with equinus lacks the flexibility to bring the top of the foot toward the front of the leg. In Ms. Brown’s case, shortening of the Achilles tendon was felt to be the cause. Although people with equinus develop ways to “compensate” for their limited ankle motion, this often leads to other foot, leg or back problems. Conservative treatment can include splints, heel lifts, custom shoe orthotics and physical therapy. In Ms. Brown’s case, Dr. Jefferson ultimately performed a tendon lengthening procedure to correct this. 13 This consultant reviewed records from approximately 48 different dates in which Ms. Brown was seen at the Sharasra clinic. On some days, multiple services were provided (medical evaluation, counseling, physical therapy). Bills & Payments noted a Physical Medicine Superbill for services from 2/9/2010 – 9 of 32 evaluations, psychotherapy, and she prescribed and provided physical therapy services/modalities (to include application of heat/cold, electrical stimulation, therapeutic exercises, and massage). As Ms. Grant’s therapy records consist primarily of check lists, it is not clear if formal evaluations of Ms. Brown’s functional status, range of motion or progress were provided or reported to Dr. Jefferson. Ms. Brown’s mood was frequently noted to be sad, depressed and anxious and her antidepressant was changed to Effexor, although there was no report of improvement in her mood after this change. On 11/12/2010, Dr. Jefferson performed a left ankle arthrodesis (fusion), removal of the old hardware, lengthening of the left Achilles tendon and removal of degenerative bone spurs. Her initial postoperative course went well with improvement of her pain to 3/10. For approximately four weeks, Ms. Brown remained non-weight bearing on the left leg and used her walker to ambulate. After which her cast was removed and she was placed in a tall Bledsoe Boot14. By mid January, 2011, Ms. Brown’s ankle had minimal tenderness and she was eager to transition from the boot to shoes. X-rays revealed consolidation of the joint with callous and plans were discussed to wean her from the Bledsoe Boot to Rocker Soled shoes15. When she returned to see Dr. Jefferson in early March, 2011, Ms. Brown continued to use the walker for ambulation and reported intermittent ongoing use of the Bledsoe Boot as she continued to experience difficulty with her balance, causing her to roll her left ankle. Dr. Jefferson ordered physical therapy to begin with pool therapy (aquatic therapy) and focus on proprioception. At her next follow up office visit, Ms. Brown reported increased ankle pain and swelling since rolling her left foot. Although she was participating in physical therapy, her participation was being limited by the pain. In addition, she reported burning in the lateral ankle which was interfering with her sleep. Dr. Jefferson diagnosed a left ankle sprain and 16 tenosynovitis of the left foot and ankle . Ms. Brown tried using a supported ankle brace but did not find this comfortable. Two weeks later, she reported multiple instances of rolling her foot and had also fallen. A CT scan was ordered to assess for nonunion of the ankle joint. Results noted the presence of bridging callus with healing of at least 30% of the joint surface area. Mild 10/27/2010 which noted 54 visits billed at $85.00 each (Bills & Payments2, pg2). Services listed include Paraffin Bath, TENS applications and Therapeutic Procedure/Exercises. It does not appear that treatment with Ms. Grant has continued. 14 See description in the “Equipment” section of this report 15 See description in the “Discussion” section of this report 16 Tenosynovitis is the inflammation of the fluid filled sheath (synovium) that surrounds the tendon. Symptoms can include pain, swelling and difficulty moving the involved joint. 10 of 32 subtalar degenerative changes were also noted. loosening of the hardware. There was no evidence of bone loss or Ms. Brown was provided with a Bone Growth Stimulator17 and gradual consolidation of the joint was monitored. Use of the Bone Stimulator continued through October 2011, when the records concluded. Ms. Brown was gradually able to tolerate full weight bearing and weaned out of the boot. Compression stockings were recommended as she continued to experience ankle pain, swelling and stiffness. A 10/12/2011 CT scan noted a solid fusion of the ankle joint and some advancement of the subtalar degenerative changes (from mild to moderate). In her 10/25/2011 deposition, Dr. Jefferson noted Ms. Brown’s recovery has been more difficult than is typical. She opined Ms. Brown would undergo additional surgery to remove the hardware in an attempt to reduce the persistent pain and increase function; however, she did not have a high degree of confidence that this would make a major difference in her symptoms. Depending on her life expectancy, other anticipated procedures include surgical fusion of the subtalar joint and/or transtarsal joints (talonavicular joint and the calcaneocuboid joint). On 12/5/2011, Ms. Brown was evaluated by Paul Revere, MD, a physiatrist. She reported chronic left ankle and back pain with weakness, numbness, tingling, and burning in her feet, toes and hands. She reported loss of appetite with weight gain, nervousness, and sleep difficulties, loss of balance and persistent pain which limited her day to day functioning. On examination, Dr. Revere noted left ankle edema with areas of excoriation18. He diagnosed left ankle Chronic Regional Pain Syndrome and prescribed a topical compounded cream19 for pain relief. Future consideration of spinal cord stimulation (SCS) was recommended should she fail to obtain relief of her pain. 17 Bone Growth Stimulator’s use a pulsed electromagnetic field to facilitate bone healing. The device is worn on the outside of the body for several hours a day as prescribed. Most individuals wear the device between four and eight months. 18 Excoriation describes a raw irritated lesion or skin abrasion 19 Topical pain relieving drugs include preparations applied to the skin as a cream, ointment, gel, spray or patch. These drugs seek to reduce inflammation below the skin surface and sooth nerve pain. Formulations diffuse through the skin and enter the bloodstream initially bypassing the digestive system. Many systemic side effects such as stomach irritation can be lessened or eliminated. 11 of 32 Phone Conference with Dr. Paul Revere This consultant spoke with Paul Revere, MD on 12/16/2011 and discussed Ms. Brown’s current status and future care. He noted that pain was her main complaint at the 12/5/2011 office visit. We discussed the fact that Ms. Brown had some pre-accident history of back pain. Dr. Revere explained that individuals with a history of pain are more likely to develop a chronic pain syndrome if a second type of pain occurs. Currently, Ms. Brown is prescribed antidepressants and appears quite focused on her pain. Dr. Revere recommends aggressive psychiatric intervention to incorporate Cognitive Behavioral Therapy (CBT)20 (at least three to four years two to four times per month) along with routine psychiatric monitoring over her lifetime. In addition several months of aggressive physical therapy is anticipated. Dr. Revere prescribed a transdermal cream in an effort to relieve her persistent nerve pain. He anticipates a phone call from Ms. Brown in the next week as he wanted to give her sufficient time using the cream to determine its effectiveness. If her pain is not adequately relieved, Dr. Revere indicated he would obtain a psychiatric evaluation to determine her appropriateness for SCS. Ms. Brown will be referred to a specialist for SCS trial, implantation and programming. Dr. Revere anticipated he would continue to follow Ms. Brown monthly for approximately six months as she transitioned from oral pain medications to SCS; after which his visits would decrease to every two to three months for several months and then finally to three to four times annually once stabilized. As the SCS functions by interfering with the pain signals, it is not anticipated that this will result in a significant decrease in her ankle swelling. Overall ongoing use of oral pain medications will be dependent on the effectiveness of her pain relief with the SCS. Dr. Revere noted that due to the changes in body mechanics with weight bearing, overuse syndrome and early degenerative changes can occur in the joints of the opposing leg, hip and back, ultimately leading to gait destabilization. Dr. Revere is aware that several equipment items are provided within this Life Care Plan to promote independent functioning both at home and in the community. Currently Ms. Brown has no restrictions on her activity as he encourages her to do as much as she can. Dr. Revere anticipates follow up with Ms. Brown in the next few 20 Cognitive Behavioral Therapy (CBT) focuses on patterns of thinking that are maladaptive and the beliefs that underlie such thinking. CBT sessions are often active, problem-focused and goal directed. CBT has been shown to be as useful as antidepressant medication for individuals with depression and is superior in preventing relapse. 12 of 32 weeks. Although he agreed that her chronic ankle pain would likely contribute to a poorer quality of life, he did not feel her current life expectancy would be altered by this or in lieu of her current co-morbid conditions. Current Treatment Regimen It is noted that Ms. Brown’s pain medications may be significantly reduced if she achieves adequate pain relief using the SCS. Medications Medication / Dosage Effexor XL (Venlafaxine) 37.5mg Once daily Lorcet (Hydrocodone) 10/650 mg tablets As needed for pain (As Ms. Brown was previously prescribed 120 tablets/ month, only the additional quantities (#90/mo) are reflected on the attached spread sheet. Valium (Diazepam) 10 mg tablets As needed for anxiety and/or back spasms (As Valium was previously utilized for anxiety, only #30 tablets / 4 times/year are provided on the attached spreadsheet) Comments Effexor is an antidepressant medication used in treatment of depressive disorders, anxiety and panic disorders. Lorcet (also known as Vicodin, Lortab, Norco) is a tablet containing a combination of Tylenol (acetaminophen) and hydrocodone. The hydrocodone is a narcotic pain reliever. The Tylenol works with hydrocodone to increase its effectiveness. Norco is indicated for relief of moderate to moderately severe pain. Ms. Brown reports currently using up to 7 tablets per day for pain. Valium belongs to a group of drugs called benzodiazepines which affects chemicals in the brain that can become unbalanced and cause anxiety. Ms. Brown reports intermittent prior use of Valium. Ambien (Zolpidem ) 10 mg tablet As needed for sleep Ambien is used to treat insomnia (difficulty falling asleep or staying asleep). Ambien works by slowing activity in the brain to allow sleep. Motrin (Ibuprofen) 800mg tablets As needed for mild to moderate pain and inflammation Motrin is a nonsteroidal anti-inflammatory drug (NSAID) which works by reducing hormones that cause inflammation and pain in the body Lidocaine 2%, Prilocaine 2%, Topirmate (Topamax) 2.5%, Meloxicam (Mobic) 0.09% Transdermal Cream Compounding creams are made in a special pharmacy. Medications are blended and applied to the skin where they slowly absorb. The combination of medications can be tailored to meet an individuals needs. Lidocaine and Prilocaine are anesthetic or numbing medications which block pain impulses and prevent them from reaching the brain. Topiramate is an anticonvulsant medication which is also sometimes used in the treatment of pain Apply up to 4 Grams 4 times per day (16 Gm/day) for treatment of pain and/or muscle spasms 13 of 32 conditions involving nerve mediated pain Meloxicam is a non steroidal anti-inflammatory drug (NSAID) used in the treatment of arthritis. Treating Physicians Thomas Jefferson, MD (Orthopedic Surgery) Town, ST zip telephone Paul Revere, MD, (Physical Medicine & Rehabilitation) Diagnostic Clinic of City City, ST 77004 telephone Current Functional Status Ms. Brown remains independent driving and completing her basic and advanced activities of daily living, however, pain continues to limit her activities. She continues to use adaptive equipment intermittently for support and balance with her mobility. Provisions for various items have been included to promote independent functioning and reduce her risk of falling. As she ages, it is anticipated that Ms. Brown’s reliance on these items may increase. Equipment Item Roll-A-Bout Compression Stockings Tall Bledsoe Walking Boot Rocker soled shoes Rationale The Roll-A-Bout is a walker / crutch substitute. The user places the knee of their injured leg on a padded seat. There are 4 wheels for stability and a hand break. This item was recommended by Dr. Jefferson. This item is designed to increase blood circulation and provide graduated pressure on the lower leg/foot to alleviate circulatory problems such as edema. By compressing the surface veins, arteries and muscles, the blood is forced through narrower circulatory channels. As a result, the arterial pressure is increased which causes more blood to return to the heart and less to pool in the feet. Used previously during post op recovery, these boots provide ongoing postoperative support to the ankle joint after cast removal. It is anticipated that this will also be used subsequent to future ankle fusions. The bottom of Rocker soled shoes are thick and curved, creating the rocking ability that is lacking in traditional flat 14 of 32 shoes. After ankle fusion, these can improve walking mechanics. Rocker soles shoes were recommended by Dr. Jefferson Custom Left Shoe Orthotic Motorized Scooter Scooter vehicle lift Stair lift Shower Seat Hand Held Showerhead with anti-scald protection Grab Bars Orthotics can facilitate appropriate foot positioning during walking and help prevent the tendency to roll the ankle. This item is provided to facilitate independent mobility in the community as Ms. Brown has difficulty walking distances This item allows Ms. Brown to access the community with her scooter. The specific lift style of lift will be dependent on the type of scooter and Ms. Brown’s vehicle. This is provided as a safety measure as Ms. Brown has reported multiple falls and has altered mobility making stair climbing more difficult. As she ages, this will be more of a concern. Please note that this item would be removed should she decide not to remain in her 2-story condo. Promotes safe independent bathing activities. Depending on the design of the tub/shower and Ms. Brown’s ability to step over the side of a tub, a tub transfer bench might be indicated. Promotes safe independent bathing activities Permanently placed in the showers and by the toilet in the bathrooms at both her home and condo. This item should be removed if grab bars are currently installed Supplies Item Pill organizer AAA Batteries (12 pk/year) Rationale Facilitates compliance by organizing medications Used to power the hand held SCS programmer Attendant Care Although Ms. Brown currently does not require attendant care assistance, it is noted that she does live alone. Previously, friends and family have assisted, however many of these individuals also worked. As it is not always possible to predict when and who would be available to assist in the future, provisions for limited home health aide assistance during her postoperative recovery has been included as follows: After surgery to remove hardware ● 12 hours/day x 3 days, then ● 6 hours/day x 4 days, then 15 of 32 ● 4 hours/day x 7 days After surgical joint fusions ● 24 hours/day x 7 days, then ● 12 hours/day x 4 days, then ● 6 hours/day x 3 days, then ● 4 hours/day x 14 days After SCS implantation and replacement ● 12 hours/day x 3 days, then ● 6 hours/day x 4 days, then ● 4 hours/day x 7 days Pre-Injury Status Prior to the 3/3/20xx MVA, Ms Brown was independent with all basic and advanced ADL activities. In her 3/9/2011 deposition, she reported a prior workers compensation injury in the late 1990s when she stepped into a hole, twisting her back and left ankle. In 2008, she received additional treatment for unspecified back complaints, which were conservative per her report and included medications. No physical therapy or chiropractic intervention was provided. Ms. Brown testified that she had continued to take Norco and Soma as needed once or twice a month when her back bothered her. Ms. Brown also reported prior treatment for anxiety, panic attacks and depression subsequent to the deaths of multiple immediate family members (two of her children, a granddaughter and her husband). Although she noted intermittent ongoing use of anti-anxiety medications (Xanax) for panic attacks, after 2005, she was not prescribed antidepressant medications. Pre-Injury Medical History/Co-Morbid Conditions ● Allergies: Compazine ● Anxiety ● Eye surgery, 2003 ● Liposuction, 2002 ● Left ankle sprain, 1995-1996 ● Back strain, 1995-1996 ● Breast surgery, unspecified1980s ● Abdominoplasty (Tummy Tuck), 1980s 16 of 32 ● Height 5’5”; weight 176.2 lbs 12/5/2011 Psychosocial Considerations Reaction to Illness/Injury Ms. Brown testified that this accident has changed her whole life. She reported feeling depressed and is no longer able to be active like she was before the accident. Medical records noted feelings of frustration with her prolonged recovery and persistent pain. Ms. Grant prescribed antidepressant medications, however it is not clear how effective these have been in managing her mood. Since the 3/3/20xx MVA, Ms. Brown attended approximately seven counseling sessions with Ms. Grant in 2010. She reported anxiety with a sleep disturbance and periodically cried during her sessions. It does not appear that she is currently involved in counseling. This Life Care Plan does provide for psychiatric intervention per Dr. Revere’s recommendations. Social / Community Activities / Hobbies Prior the 3/3/20xx MVA, Ms. Brown enjoyed dancing with girlfriends, jogging at Memorial Park, and taking long walks in her neighborhood. She reports feeling that she’s now “stuck” in front of the TV. Although her friend, Tina, comes over two to three times a week, they don’t go out. Instead they spend their time watching TV. No other current social / leisure activities were reported. Available Resources Ms Brown is a Medicare beneficiary; however no information was available regarding other available resources. Home Environment / Accessibility Ms. Brown owns two homes which are briefly described below. In her deposition, Ms. Brown explained that she usually stays in her condo in City during the week, traveling to her home in Village on weekends. A third address was noted on her driver’s license and also provided in the records from Dr. Revere. No information was available regarding her address. 17 of 32 Street address City, ST This is a 2-story condominium with the master bedroom/bathroom located on the second floor. The master bathroom has a tub/shower combination. A half bath is located on the first floor. There are no steps to enter the home and records noted three accessible exits. Street address Village, ST This is a ranch style home. No specifics were available regarding accessibility. Nursing Diagnoses A Nursing Diagnosis is defined as a clinical judgment about individual, family or community responses to actual or potential health problems or life processes which provide the basis for selection of nursing interventions to achieve outcomes for which the nurse is accountable. The following Nursing Diagnoses were developed by this consultant subsequent to review of the available information, phone conversations and research and reflects approved diagnoses’ per NANDA-I (North American Nursing Diagnosis Association International). ● Chronic pain ● Anxiety related to chronic condition and altered body image ● Impaired physical mobility related to left ankle joint fusion ● Potential activity intolerance related to pain and deconditioning ● Risk for injury related to poor balance and altered lower extremity sensation ● Disturbed sleep pattern related to persistent lower extremity pain ● Social Isolation related to altered state of wellness and deficient diversional activity 18 of 32 Education / Vocational Issues Education Ms Brown was born in Town, State and graduated from Dana High School in 1955 after which she attended classes at Capitol Community College in California. Additional training included certification as an Acupuncture Detoxification Specialist, 1996; Substance Abuse and Counseling internship at New Direction Counseling Center, 1989-1990; certification as a Trauma Resolution Therapist; and in 2010, she obtained certification to perform DNA and drug testing. Work History Year 2010 - present I-10 West Medical Business Owner Position Analyses DNA and Drug samples Hours: 8 am to 11:30 five days per week Ms. Brown testified that, while at work, she sits on the couch and watches TV while her associate does the testing. 2008-2010 2007-2008 Unemployed Trauma Resolution Therapist E & A Associates 2005-2007 Trauma Resolution Therapist Thomas Medical Clinic 2000 – 2005 Dr. Steve Smith 1995-1996 Trauma Therapist: Duties included working with individuals who have had severe trauma such as death, accidents, abuse. Office administrative duties Counselor Left this position after being injured at work Criminal Justice Department Life Expectancy The average remaining life expectancy for 69 year old females living in the United States is 16.8 years (rounded to 17 years). This represents the average number of remaining years one is expected to live and is based on data published in the September 28, 2011 National Vital Statistics Reports United States Life Tables, 2007; Volume 59, Number 9, Table 3 for females. This Life Care Plan was prepared utilizing the average life expectancy for individuals of the same / similar age, race and gender living in the United States. Dr. Revere noted that, although 19 of 32 Ms. Brown’s ankle condition may affect her overall quality of life he did not feel it, or any of her other co-morbid conditions would affect her life expectancy. Potential Care Needs In addition to the goods and services which can be projected within a reasonable degree of probability, there are other conditions and/or complications which are possible and do not meet this threshold. These are therefore listed separately for informational purposes and the associated costs are not reflected within the projected total costs of this Life Care Plan. Potential Needs Nonunion Chronic Regional Pain Syndrome (CRPS) Comments Delayed healing and nonunion occurred both after the initial surgery (medial malleolus fracture) and the ankle fusion. Ms. Brown required use of a bone growth stimulator for greater than three months after her ankle fusion after which the bones eventually healed. In light of this, it is possible that she would be at a higher risk of experiencing nonunion and/or delayed healing after future surgeries which would impact her care. Per Dr. Revere concomitant use of the SCS and bone stimulator may be possible, if the SCS unit is turned off while the bone stimulator is in use and vice versa. Diminished Motor Function Non-use of a limb can lead to tissue wasting (atrophy) and tightness of the muscles, tendons and ligaments (contracture) leaving the affected area in a fixed position. Ms. Brown developed contractures in her left foot/ankle due to non-use prior to her fusion. In addition moderate to severe muscle spasms can occur in the affected limb and associated musculature. Spasms may become debilitating and can increase pain levels. Together, these can result in a severe loss of the joint range of motion. Although Ms. Brown underwent left ankle fusion (tibial/talar joint), the remaining joints and soft tissues in her lower extremity remain at risk. Bone Changes Like other tissues in the body (i.e. skin) we constantly produce bone cells. In normal bones there is a balance between bone cells being produced (osteoblastic activity) and resorbed (osteoclastic activity) thereby renewing and maintaining our bone strength and structure. In early stages of CRPS, increased vascularity and osteoclastic activity can be identified. In latter stages, significant diffuse osteoporosis can develop. Periodic diagnostics have been included on the attached spreadsheet to monitor for these changes. Should this occur, medications such as Boniva, Fosamax and supplements of vitamin D, calcium can help to restore and maintain bone strength. Spreading Symptoms Although symptoms of CRPS are initially localized to the site of 20 of 32 injury, as time progresses, pain and symptoms tend to become more diffuse. Spreading of symptoms can impact functional mobility, independents, coping and overall treatment. There are three patterns of spreading that have been described. 1. “Continuity type” – spreads upward from the initial site i.e. from the foot to the upper leg 2. “Mirror-Image” – symptoms spread is to the opposite limb 3. “Independent type” – symptoms tend to occur in other distant areas of the body Injuries related to Falls Ms. Brown reports poor balance and coordination, which has resulted in multiple previous falls. In addition, sensory changes (pain) and altered mobility due to weakness and ankle fusion place her at greater risk for injuries. Prior injuries have been reported as relatively minor (bruises and cut lip), however post fusion; she sustained additional injury to the soft tissues of the left ankle (sprain) after “rolling” her foot. Falls can result in more serious injury and/or fractures. Equipment aimed at minimizing this risk has been included in the attached spread sheets Discussion This section is included to provide additional educational information that may facilitate the reader’s general understanding of terms and concepts noted within the body to this report. Ankle Anatomy The ankle joint is composed of three bones (see front view below). The tibia, forms the inside (medial) portion of the ankle, the fibula forms the outside (lateral) portion of the ankle; and the talus is underneath. This is considered the “true ankle joint” and allows us to move our foot up and down. The edges of the tibia and fibula which hang down around the talus are considered malleolus and together with supporting ligaments and tendons, help to maintain the position of the leg bones over the foot. The subtalar joint lies below the talus where the calcaneus (heel bone) and talus come together and allows side-to-side motion of the foot. The transverse tarsal joints allow rotational movement of the forefoot while the heel remains relatively still. 21 of 32 Bi-Malleolar Ankle Fracture and Posttraumatic Arthritis The vast majority of ankle fractures are malleolar fractures with 15 to 20 percent being bimalleolar (involving both the medial and lateral malleolus). Because the medial malleolus is shorter than the lateral malleolus, there is a greater tendency to “roll” the ankle outward. The range of injury severity depends on the forces associated with the injury mechanism. Associated injuries can include damage to the many tendons and ligaments that support the ankle joint as well as injury to the articular cartilage and joint surface. Unlike bone, damaged cartilage is not replaced. Development of posttraumatic arthritis complicates 20-40% of ankle fractures. Generally the more severe the fracture, the greater the likelihood posttraumatic arthritis will develop. Other risk factors include residual joint instability, malalignment, obesity, high levels of activity and advancing age. As arthritic changes progress the smooth cartilage in the joint deteriorates, causing friction between the bones. Pieces of cartilage break off and the bone surface becomes thick and broad to compensate. Bone spurs or osteophytes form around the joint causing deformities and can further impair joint motion. Arthritic changes cause pain, stiffness, thickening of the joint fluid, inflammation and swelling. Pain can originate from the structures within the joint or include surrounding ligaments, muscles and bone. 22 of 32 Conservative treatment for posttraumatic arthritis can include medications and topical creams for pain and inflammation, physical therapy to regain and/or maintain functional mobility, bracing for added support and comfort and Cortisone (steroid) joint injections to reduce local inflammation. Ankle Fusion Surgical fusion of a joint is called arthrodesis (arthro-joint and desis-to bind). Ankle fusion for treatment of end-stage ankle arthritis is considered a salvage procedure. When the bones have healed together, no movement remains in the joint. This causes permanent alterations in one’s gait pattern as they are not able to move their foot up and down as they walk. Running is very difficult as one has lost the ability to “push off” with the toes during the gait cycle. Because the “true ankle joint” no longer moves, additional stress can be placed on the subtalar and transtarsal joints (noted above) as foot mechanics compensate. 23 of 32 After ankle fusion, individuals often have difficulty climbing stairs and walking on uneven surfaces. Physiologically, there is a decreased gait velocity or speed (16%), increased oxygen consumption (3%), and an overall decrease in gait efficiency (10%). This increased physiologic demand is not well tolerated by elderly pts who, because of their other medical conditions often have a diminished ability to compensate for this higher demand (6, 7). Some individuals can improve their gait by using custom orthotics21 and/or special shoes with rocker bottoms. Because of the ankle positioning required to wear and walk in high-heeled shoes, most women are unable to wear them after ankle fusion. 21 An orthotic is an externally applied device used to support / control a body part. There are multiple types of braces and supports used to support the ankle. Braces and orthotics can reduce side to side motion 24 of 32 Complex Regional Pain Syndrome Complex Regional Pain Syndrome (CRPS) describes an array of painful conditions that are characterized by continuing (spontaneous and/or evoked) regional pain that is seemingly disproportionate in time or degree to the usual course of any known trauma or other lesion. The pain is regional (not in a specific nerve territory or dermatome) and usually has a distal predominance of abnormal sensory, motor, sudomotor22, vasomotor23 and/or trophic24 findings. Typical features include changes in the color and temperature of the skin of the affected body part, accompanied by intense burning pain, skin sensitivity, sweating and swelling. The syndrome shows variable progression over time. There are two types of CRPS. Type I is frequently triggered by tissue injury and is used to describe individuals with the above symptoms who do not have an obvious underlying nerve injury. When an injury to the nerve(s) is evident, the condition is generally considered Type II CRPS (previously known as Causalgia) Although the cause of CRPS is not clear, it is thought that the sympathetic nervous system is involved with sustaining the pain and suggests that pain receptors in the affected part of the body become responsive to a family of nervous system messengers known as catecholamine’s25 which acquire the capacity to activate pain pathways after tissue or nerve injury. In addition, although the exact triggering mechanism is not clear, the resulting neurogenic inflammation appears to involve axonal (nerve cell) damage to the small distal nerve fibers. The key symptom of CRPS is continuous, intense pain, which is out of proportion to the severity of the injury. This pain tends to worsen over time and can spread to include an entire extremity and/or travel to the opposite or other extremities. 22 Sudomotor relates to nerves that stimulate the sweat glands. Vasomotor pertains to the nerves and muscles that control the diameter of the blood vessels causing constriction and/or contraction of blood vessels 24 Trophic refers to a nutritive effect on or quality of cellular activity 25 Catecholamines are naturally occurring hormones, which are released into the blood during times of physical or emotional stress. Examples include epinephrine (adrenaline), norepinephrine (noradrenaline) and dopamine. When released, these hormones cause the general physiological changes that prepare us for physical activity; also known as the “fight-or-flight response”. 23 25 of 32 Although still under study, some researchers believe CRPS has three stages marked by progressive alterations in the skin, muscles, joints, ligaments and bones of the affected area. ● Stage I: Thought to last from 1 to 3 months and is characterized by severe, burning pain along with muscle spasm, joint stiffness, rapid hair growth, and alterations in the blood vessels that cause the skin to change color and temperature ● Stage II: lasts from 3 to 6 months and is characterized by intensifying pain, swelling, decreased hair growth, cracked, brittle grooved or spotty nails, softened bones, joint stiffness and weak muscle tone. ● Stage III: notes progression of skin and bone changes, which are not reversible. Pain becomes unyielding and may involve the entire limb. There may be marked muscle atrophy, severely limited mobility and flexion contractures. Treatment: CRPS can be very difficult to treat. Not only is the syndrome biomedically multifaceted, comprising both central and peripheral pathophysiology, it also frequently contains psychosocial components. The goals of treatment include 1) management of pain and 2) restoration of function. Psychological Interventions Although there is currently no solid evidence that psychological factors are necessarily involved with the onset of chronic CRPS, there are theoretically plausible pathways through which psychological factors could affect its development. It is important to determine the presence of comorbid psychiatric disorders (Major Depression, Generalized Anxiety, and Post Traumatic Stress Disorder); consider cognitive, behavioral and emotional responses to the CRPS; note any ongoing life stressors as well as responses by significant others to the condition. Approaches such as relaxation training, biofeedback, and cognitive / behaviorally focused interventions are recommended and can be beneficial especially to individuals in which the pervasive learned (or centrally mediated) disuse is perpetuated. Training in cognitive pain coping skills and behavioral intervention to address disuse and activity avoidance issues, as well as family reinforcement issues should be included as interventions focus on pain management. 26 of 32 Pain, one of the central features of CRPS, is a subjective experience, which can be influenced by culture, memory of past pain experiences, personality type, affective state and other functional variables. To address these complexities, an orderly interdisciplinary approach is consistently recommended in the literature. The CPRS Treatment Guidelines note that treatment must simultaneously address the medical, psychological and social aspects of the syndrome. Functional Restoration Functional restoration has historically been considered a critical and necessary component of interdisciplinary pain management for CRPS. Functional restoration emphasizes physical activity, desensitization and normalization of sympathetic tone. This involves progression from the most gentle, least invasive interventions to the ideal of complete rehabilitation in all aspects of the patients’ life. Many patients experience movement phobia (kinesiophobia). This fear of pain can lead to avoidance of any and all activities, which can ultimately result in increased disability. Physical Therapy: The physical therapist can help patients increase their range of motion, flexibility, and later strength, through the use of gentle progressive exercise. Gait training can also improve functional abilities. PT activities should be done within the bounds of the patients’ tolerance as aggressive therapy can trigger extreme pain, edema, distress and fatigue. Likewise, prolonged periods of inactivity can also aggravate CRPS. The goal is to find and maintain a “happy medium” which will promote steady functional gains and minimize setbacks due to pain. Aqua therapy: Pool therapy has been shown to be very beneficial in treating CRPS. The hydrostatic pressures realized under water provide a mild compressive force around the affected extremity and may help to reduce edema. The effect of buoyancy allows for weight bearing and facilitates early restoration of functional activities such as walking. The water environment also adds resistance without adding full stress/weight to the joints. Temperature extremes should be avoided as water that is excessively cold or hot can exacerbate symptoms. Because nearly all land exercises can be adapted to the water, aqua therapy can lay the groundwork for ultimate transition to full weight bearing activities. 27 of 32 Recreational Therapy: The recreational therapist is frequently the first clinician to succeed in getting the patient with CRPS to increase their movement, a primary goal of successful treatment. Overcoming fear of movement (kinesiophobia) to again participate in prior and/or new recreational activities can help to reestablish the individuals’ sense of freedom to determine their own leisure lifestyle choices. In addition, the increased social contact can increase their chance of remaining active in the community after treatment concludes. Optimally, the therapy team members should communicate and coordinate their treatment goals so that they reinforce and compliment each of the involved disciplines. Pharmacotherapy and other treatments Pharmacotherapy, as with most chronic pain syndromes, achieves the greatest results when prescribed in conjunction with functional restoration and an interdisciplinary treatment approach. Various opioids and adjuvant medications have been used in the treatment of CRPS. Adjuvant medications include anticonvulsants, antidepressants, NSAIDs, corticosteroids and topical compound creams. Intrathecal delivery of medications may also be effective in certain cases where intolerable side effects occur with high doses of opioids. Sympathetic nerve blocks performed under fluoroscopic guidance can also be beneficial in reducing pain associated with CRPS. Surgical sympathectomy (interruption of the affected portion of the nervous system) remains a procedure of last resort and as results can be varied, some controversy remains with regards to its overall effectiveness. Spinal Cord Stimulation (SCS) for Chronic Pain Neuromodulation refers to modifying or adjusting functions of the nervous system. This can be accomplished by using pharmacological agents (medications), introducing electrical stimulation (SCS) or both to interrupt normal nerve pathways and alter our perception of pain. According to the North American Neuromodulation Society (NANS), neuromodulation provides a reversible alteration of the nervous system as the therapeutic effects cease when the unit is turned off. Other procedures such as those that cut, destroy or resect create permanent changes to structures (13) The Gate Control Theory of Pain considers the entire pain experience (including psychological factors) and explains it on a physiological level. Normally, pain messages flow along peripheral 28 of 32 nerve fibers to the spinal cord and proceed to the brain. In the spinal cord there are “nerve gates” that can inhibit (close) or facilitate (open) nerve impulses traveling from the body to the brain. When the brain receives pain messages, it associates the message with an emotional experience and then processes it. The emotional aspect of pain is a person’s response to thoughts about the pain. If you believe the pain is a serious threat (thoughts), then emotional responses may include fear, depression, or anxiety. Conversely, if you believe the pain is not a threat, then the emotional response is more negligible. Consider how we feel after a vigorous workout. The day afterword, we may be grimacing, moaning, moving slowly, and demonstrating other pain behaviors, but our thoughts about the pain are positive (“Boy, what a great workout”). Even though pain behaviors may be similar, the emotional response can be quite different with chronic pain. Our perception of the resulting sensation therefore, has both physical and emotional components. Thus, the nerve gates are influenced by a number of factors including the size of the fibers carrying the message and information or “instructions” traveling down from the brain about our pain experience. (10-16) The dorsal column runs the entire length of the spinal cord and is the portion of the cord responsible for transporting sensory input from the body to the brain. A mass of gelatinous grey matter (Substantia gelatinosa) sits posterior along the outer surface of the dorsal column and specializes in the transmission of painful sensory information. In 1967, Shealy theorized that sustained electrical stimulation of the nerve fibers in the dorsal columns (dorsal column stimulation) would keep the gate closed at the point where the message entered the cord; thus preventing the message from reaching the brain and allowing continuous pain relief. When a spinal cord stimulator is turned on, instead of feeling pain, the patient feels a sensation of numbness or mild tingling referred to as paresthesia. (10, 11) Future Care Considerations with SCS include adjustments in the parameters of electrical stimulation. Device reprogramming is necessary at regular intervals, as is periodic monitoring to maintain and maximize pain relief. An ongoing multidisciplinary treatment approach is recommended and provides effective tools for long-term management. Although device battery life has greatly improved with the addition of rechargeable units, they do not last forever. Replacement frequency is dependent on the type of device implanted. The interaction with sources of strong electromagnetic interference (e.g., MRI, Radio Frequency Ablation, defibrillation, therapeutic ultrasound) cannot only damage an implanted device, it can 29 of 32 cause tissue injury. Patients are given an ID card as implanted devices are likely to set off airport metal detectors. Contact with anti-theft devices (such as those in retail stores) may temporarily alter function, increasing or decreasing stimulation. These devices are considered safe around normal household equipment, such as cell or portable phones, computers, TV’s, microwaves and other appliances and typically do not pose problems. Ms. Brown has experienced delayed healing and nonunion after the initial injury and also after her ankle fusion. Her ability to use both a spinal cord stimulator along with a lower extremity bone growth stimulator (should she require it after a future fusion) will be dependent on the compatibility of the specific devices and physician clearance. Per Dr. Revere, concomitant use of these devices may require one of the devices to be turned off while the other is in use and vice versa. Comments / Conclusions Ms Brown is a 69-year-old woman who sustained a left ankle fracture subsequent to a 3/3/20xx motor vehicle accident. She has experienced delayed healing and developed advanced degenerative changes in the left ankle joint. This necessitated a tibial-talar joint fusion that also noted delayed healing. Ms. Brown has experienced chronic edema in the left ankle region and persistent pain that continues to limit her activities. Ms. Brown reports a tendency for her left ankle to “roll” outward and appears to have caused a left ankle sprain post fusion. In addition, poor balance has contributed to several falls resulting in minor injuries to date. Dr. Jefferson testified that she anticipates additional surgery to remove the existing left ankle hardware. She also indicated that ultimately, additional joint fusions would be required to manage chronic pain associated with traumatic arthritis. Dr. Revere has recently diagnosed Ms. Brown with CRPS in her left lower extremity. If transdermal creams do not adequately control her pain, he has recommended a SCS along with aggressive physical therapy for functional restoration and psychological care. Recommendations for Ms. Brown’s anticipated future care are provided on the attached spreadsheets. These recommendations as well as the opinions provided within this report are made with a reasonable degree of Life Care Planning certainty. Patricia Rapson, RN, CCM, CNLCP, CLCP, CBIS, MSCC 30 of 32 References 1. Duetsch, Paul M. A Guide to Rehabilitation. Ahab Press. White Plains, NY, 2002. 2. Weed, R., Berens, D. Life Care Planning and Case Management Handbook, Third Edition. CRC Press, Boca Raton, FL, 2010 3. North American Nursing Diagnosis Association. Nursing Diagnoses 20xx-2011: Definitions and Classification 4. Sparks S, Taylor C. Nursing Diagnosis Reference Manual: Eighth Edition. Wolters Kluwer Health / Lippincott Williams & Wilkins 2011. 5. Nanda R, Scott S, Rangan A. Bi-Malleolar Ankle Fractures: Functional Outcome at Seven Years (Mean) Following Operative Fixation. J Bone Joint Surg – British Volume, Vol 88-B, Issue SUPP_1, 165 6. Thomas R, Daniels TR, Parker K. Gait analysis and functional outcomes following ankle arthrodesis for isolated ankle arthritis. J Bone Joint Surg Am 2006 Mar; 88(3):526-35. 7. Raikin S, Myerson M. Complications of Total Ankle Replacement. The Institute for Foot and Ankle Reconstruction at Mercy – Research and Publications. Jan, 2003. Retrieved December 2011 http://footandankle.mdmercy.com/research_pubs/pressItem81.html 8. Equinus. American College of Foot and Ankle Surgeons. www.foothealthfacts.org. Retrieved December 2011. 9. Prager J., RSD Advisory – Where Chronic Pain & Depression Collide: New Rechargeable SCS Systems Offer Advantages in CRPS Treatment. www.rsdadvisory.wordpress.com/new-rechargeable-scs-systems-offer-advantages-in-crpstreatment/ . Retrieved September 2011. 10. Pinzon E, Spinal Cord Stimulation: An overview and case study of spinal cord (dorsal column) stimulation in a spine-centered/orthopaedic clinical practice setting. Practical PAIN MANAGEMENT, May/June 2005 http://gsm.utmck.edu/surg_rehab/documents/pinzon6_PPM_MayJune05.pdf 11. Deardorff W, Psychological Management of Chronic Pain. ContinuingEdCourses.Net,Inc. 2004-2011 http://www.continuingedcourses.net/active/courses/course016.php 12. Saranita J, Childs D, Saranita A., Spinal Cord Stimulation in the Treatment of Complex Regional Pain Syndrome (CRPS) of the Lower Extremity: A Case Report. The Journal of Foot & Ankle Surgery, 48(1):52-55, 20xx 13. International Neuromodulation Society (INS). www.neuromodulation.com 14. Davies P, Spinal Cord Stimulation – The “Pain Pacemaker” (http://mypainspecialist.com/wordpress/?p=41 ) 15. North American Neuromodulation Society (NANS) (www.neuromodulation.org) 16. Gildenberg P, History of Electrical neuromodulation for Chronic Pain. Pain Medicine, Vol. 7 (S1) 2006 (http://www.sld.cu/galerias/pdf/sitios/rehabilitacionfis/history_of_electrical_neuromodulation_for_chronic_pain.pdf) 17. Pain Intensity Instruments. National Institutes of Health Warren Grant Magnuson Clinical Center. 2003. Retrieved December 2011 31 of 32 18. Osteoarthritis of the Ankle. Skill Builders Rehabilitation Center, 20xx. www.skillbuilders.patientsites.com Retrieved December 2011 19. Iskyan K, Ankle Fracture in Emergency Medicine. Medscape updated Feb 2, 2010. www.medscape.com Retrieved December 2011. 20. Truumees E. How do Topical Drugs Reduce Back and Neck Pain? Spine Universe Updated 3/2/2010. www.spineuniverse.com. Retrieved December 2011. 21. Hyatt, K. (2010). Overview of complex regional pain syndrome and recent management using spinal cord stimulation. AANA Journal, 78(3), 208-212. Retrieved from EBSCOhost. 22. Crepitation. (2011). Merriam-Webster Dictionary. www.merriam-webster.com/medical Retrieved September 2011. 23. Allodynia. (2011). Merriam-Webster Dictionary. www.merriam-webster.com/medical Retrieved September 2011. 24. Hyperpathia. (2011). Merriam-Webster Dictionary. www.merriam-webster.com/medical Retrieved September 2011. 25. Cognitive Behavioral Therapy (CBT). (2011). Mayo Clinic. www.mayoclinic.com/health/cognitive-behavioral-therapy/MY00194 Retrieved September 2011. 26. Wallace, M., & Backonja, M. (2011). Neuropathic pain syndromes: New localized therapeutic options. American Academy Of Pain Management. www.aapainmanage.org/education/EducationLit/neuropathic%20monograph.pdf Retrieved September 2011. 27. Ackley, B., & Ladwig, G. (2011). Nursing Diagnosis Handbook: An Evidence-based Guide to Planning Care. (9th ed.). Mosby. ISBN: 978-0-0323-07150-5 28. Complex Regional Pain Syndrome Fact Sheet. National Institute of Neurological Disorders and Stroke. National Institutes of Health. NIH Publication No. 04-4173. Updated April 12, 2011 29. Complex Regional Pain Syndrome: Treatment Guidelines. Reflex Sympathetic Dystrophy Syndrome Association June 2006 30. Hooshmand H, Hashmi M. Complex Regional Pain Syndrome, Reflex Sympathetic Dystrophy Syndrome Diagnosis and Therapy – A Review of 824 Patients. Pain Digest 1999 9:1-24 31. Prager J., RSD Advisory – Where Chronic Pain & Depression Collide: New Rechargeable SCS Systems Offer Advantages in CRPS Treatment. www.rsdadvisory.wordpress.com/new-rechargeable-scs-systems-offer-advantages-in-crpstreatment/ . Retrieved September 2011. 32. Physio-Stim: Questions & Answers. Orthofix 2005. www.orthofix.com. Retrieved December 2011. 32 of 32 Paula Brown Report Date: 12/21/11 Life Care Plan- Financial Recommendation PHYSICIAN EVALUATIONS Orthopedic Surgeon Pain Management Pain Management (Additional) Purpose Frequency Ongoing monitoring 8-16 x over and management of LE left ankle condition Monitors and adjusts 2x/year SCS settings Periodic additional visits for 12-20x over exacerbation and LE during initial SCS stabilization Physical Medicine & Rehabilitation Ongoing monitoring and management of left ankle condition relative to functional rehabilitation and pain management 2-4x/year Physical Medicine & Rehabilitation (Additional) Additional visits to accommodate increased visit frequency during initial stabilization with SCS and for exacerbations 6-8x over LE Provided as part of Psychiatrist Evaluation assessment for SCS 1x over LE appropriateness For ongoing medication Psychiatrist 1-4x/year management and assessment For medication Psychiatrist 12-18x over management and (Additional) LE assessment Provides Psychologist (CBT, psychotherapy for biofeedback, relaxation 72-192x over management and 24-48 visits annually for LE coping of chronic 3-4 years) pain and depression THERAPY DIAGNOSTICS Physical Therapy Functional restoration to increase ROM, 12-24x over flexibility, strength, LE endurance Aquatic Therapy Functional restoration to increase ROM, 12-24x over flexibility, strength, LE endurance Recreational Therapy Provides education and assistance 4-6x over LE regarding community and leisure activities Standard Bloodwork (CBC, Chem Panel) CT Scan (Left Ankle/Foot) Bone Scan Ankle) Bone Density X-Ray (Left Ankle) (Left Routine monitoring due to ongoing medication usage Annual Cost (Low End) # of Yrs Annual Cost (High End) Annual Cost (Mean) Annual Recurring Intermittent or Expenses Over One-Time Costs Lifetime $161-$203 1 $ 1,288.00 $ 3,248.00 $ - $ $111-$161 17 $ 222.00 $ 322.00 $ 272.00 $ - $111-$161 1 $ 1,332.00 $ 3,220.00 $ - $ $111-$161 17 $ 222.00 $ 644.00 $ 433.00 $ $111-$161 1 $ 666.00 $ 1,288.00 $ - $ $258 1 $ 258.00 $ 258.00 $ - $ $140-$179 17 $ 140.00 $ 716.00 $ 428.00 $ $140-$179 1 $ 1,680.00 $ 3,222.00 $ - $ - $ 2,451.00 $121-$155 1 $ 8,712.00 $ 29,760.00 $ - $ - $ 19,236.00 $118-$129 1 $ 1,416.00 $ 3,096.00 $ - $ - $ 2,256.00 $158-$236 1 $ 1,896.00 $ 5,664.00 $ - $ - $ 3,780.00 $40-$80 1 $ 160.00 $ 480.00 $ - $ - $ 320.00 $125 17 $ 125.00 $ 250.00 $ 187.50 $ $ - $1,129$1,578 1 $ 2,258.00 $ 4,734.00 $ - $ - $ 3,496.00 $661-$934 1 $ 661.00 $ 2,802.00 $ - $ - $ 1,731.50 $163 1 $ 163.00 $ 489.00 $ - $ - $ 326.00 1 $ 198.00 $ 448.00 $ - $ - $ 323.00 1 $ 46.00 $ 165.00 $ - $ - $ 105.50 1 $ 1,099.00 $ 5,548.00 $ - $ - $ 3,323.50 1 $ 1,155.00 $ 3,104.00 $ - $ - $ 2,129.50 1 $ 2,399.00 $ 3,499.00 $ - $ - $ 1 2,949.00 4,624.00 - 7,361.00 $ $ $ 2,268.00 - 2,276.00 $ - - $ 977.00 - $ 258.00 $ - 7,276.00 1-2x/year Ongoing assessment and monitoring of left 2-3x over LE foot/ankle To monitor for changes related to CRPS To monitor for changes related to CRPS Cost/Unit (Range) 3,187.50 1-3x over LE 1-3x over LE Periodic reevaluation of left ankle fracture / 2-4x over LE fusion $99-$112 Facilitates safe independent mobility EQUIPMENT 2-3x over LE at home and in the community $23-$55 Facilitates independent Scooter 1-2x over LE community mobility $1,099with aging $2,774 To maintain function 15-16x over Scooter Maintenance of scooter LE $77-$194 Facilitates independent EQUIPMENT Scooter vehicle Lift 1x over LE community mobility $2,399with aging $3,499 Costs based upon actual expenses & TX U&C general liability pricing guidelines for specific geographical region. Cane (Single Tip) Paula Brown Report Date: 12/21/11 Life Care Plan- Financial Recommendation Purpose Frequency Scooter Vehicle Lift Maintenance to maintain function of scooter vehicle lift 16x over LE Compression Stocking Worn daily to control (2 pairs) / minimize swelling Custom Left Shoe Orthotic Roll-A-Bout Roll-A-Bout Personal Bag EQUIPMENT MEDICAL PROCEDURES SURGERY SURGERY facilitates safe ambulation with annually impaired ankle ROM Facilitates appropriate foot Every 2-3 positioning and years over LE reduces ankle rolling Allows community mobility without the 1-2x over LE need for left ankle weight bearing To carry personal every 2-3 items during use with years Roll-A-Bout Stair Lift (If Ms. Brannon is no Facilitates safe stair longer in her 2-story mobility with aging condo, this item would be removed) Used to power the AAA Batteries handheld SCS (12/pack per year) programmer Facilitates compliance by Pill Organizer organizing daily medications Promotes safe Shower Seat independent bathing Hand held showerhead Promotes safe with Anti-Scald independent bathing protection 4-8 Grab Bars (price includes Permanent installation - This item placement in should be removed if showers and toilets permanent grab bars to promote safety currently exist) Routine reprogramming to Spinal Cord Stimulator monitor response Reprogramming and maintain optimal pain relief Provides relief of Sympathetic Nerve chronic pain and aids Block in confirming CRPS diagnosis Spinal Cord Stimulator Provided initially to Trial determine (Includes Facility Fee, effectiveness of Surgeon Fee, implanted SCS Anesthesia) Spinal Cord Stimulator Recommended by Permanent Placement Dr. Paily for long(Includes Facility Fee, term management of Surgeon Fee, pain associated with Anesthesia, Hardware) CRPS to assist with Post-Surgical Support activities of daily Care living after surgery to assist with Post-Surgical Support activities of daily Care living after surgery to assist with Post-Surgical Support activities of daily Care living after surgery Spinal Cord Stimulator Recommended by Replacement Dr. Paily for long(Includes Facility Fee, term management of Surgeon Fee, pain associated with Anesthesia, Hardware) CRPS to assist with Post-Surgical Support activities of daily Care living after surgery to assist with Post-Surgical Support activities of daily Care living after surgery # of Yrs Annual Cost (High End) Annual Cost (Mean) $168-$245 1 $ 2,688.00 $ 3,920.00 $ - $ $62-$105 17 $ 186.00 $ 420.00 $ 303.00 $ $102-$270 1 $ 102.00 $ 540.00 $ - $ $115-$120 17 $ 115.00 $ 120.00 $ 117.50 $ $90-$439 17 $ 30.00 $ 220.00 $ 125.00 $ $499-$650 1 $ 449.00 $ 1,300.00 $ - $ $13-$20 17 $ 4.00 $ 10.00 $ $1,895$3,049 1 $ 1,895.00 $ 3,049.00 $ $4-$13 17 $ 4.00 $ 13.00 $ $2-$6 17 $ 1.00 $ 6.00 $43-$50 17 $ 9.00 $ $42-$62 17 $ 8.00 $143-$359 1 $ $155 17 $1,655 - $ 3,304.00 3-4x/year Provided as part of High Top Walking Boot post-surgical 1-2x over LE (Tall Bledsoe Boot) recovery to stabilize ankle joint post fusion Rocker Soled Shoes Annual Cost (Low End) Annual Recurring Intermittent or Expenses Over One-Time Costs Lifetime Cost/Unit (Range) $ - $ 321.00 1,997.50 $ - 2,125.00 $ - - $ 874.50 $ 119.00 $ - $ - $ 8.50 $ 144.50 $ - $ 3.50 $ 59.50 $ - 13.00 $ 11.00 $ 187.00 $ - $ 16.00 $ 12.00 $ 204.00 $ - 143.00 $ 359.00 $ - $ - $ 251.00 $ 310.00 $ 310.00 $ 310.00 $ $ - 1 $ 1,655.00 $ 4,965.00 $ - $ - $ 3,310.00 $9,283 1 $ 9,283.00 $ 9,283.00 $ - $ - $ 9,283.00 $38,515 1 $ 38,515.00 $ 38,515.00 $ - $ - $ 38,515.00 $720 1 $ 720.00 $ 720.00 $ - $ - $ 720.00 $480 1 $ 480.00 $ 480.00 $ - $ - $ 480.00 $560 1 $ 560.00 $ 560.00 $ - $ - $ 560.00 $35,505 1 $ - $ 35,505.00 $ - $ - $ 17,752.50 $0-$720 1 $ - $ 720.00 $ - $ - $ 360.00 $0-$480 1 $ - $ 480.00 $ - $ - $ 7.00 5,151.00 - 1x over LE - 2,472.00 annually every 1-2 years every 4-5 years every 4-5 years 1x over LE 2x/year 5,270.00 1-3x over LE 1x over LE 1x over LE 12 hours/day for 3 days 6 hours/day for 4 days 4 hours/day for 7 days 0-1x over LE 12 hours/day for 3 days 6 hours/day for 4 days Costs based upon actual expenses & TX U&C general liability pricing guidelines for specific geographical region. 2 240.00 Paula Brown Report Date: 12/21/11 Life Care Plan- Financial Recommendation Purpose Frequency Post-Surgical Support Care to assist with activities of daily living after surgery 4 hours/day for 7 days Hardware Removal Recommended by (Includes Facility Fee, Dr. Fukuda to Surgeon Fee, Assistant improve functional Fee, Anesthesia, status and decrease Hardware, Equipments, pain Pre-Op & Post-Op Care) Post-Surgical Physical Therapy Post-Surgical Support Care Post-Surgical Support Care Post-Surgical Support Care SURGERY Post-Surgical Support Care Post-Surgical Aquatic Therapy Post-Surgical Physical Therapy to assist with activities of daily living after surgery to assist with activities of daily living after surgery to assist with activities of daily living after surgery to assist with activities of daily living after surgery Facilitates functional restoration Facilitates functional restoration Transtarsal Fusion Recommended by (Includes Facility Fee, Dr. Fukuda to Surgeon Fee, Assistant improve functional Fee, Anesthesia, status and decrease Hardware, Equipments, ongoing pain related Pre-Op & Post-Op Care) to traumatic arthritis Post-Surgical Support Care Post-Surgical Support Care Post-Surgical Support Care Post-Surgical Support Care Post-Surgical Aquatic Therapy Post-Surgical Physical Therapy MEDICATION MEDICATION Ibuprofen 800mg (Motrin) Tablets to assist with activities of daily living after surgery to assist with activities of daily living after surgery to assist with activities of daily living after surgery to assist with activities of daily living after surgery Facilitates functional restoration Facilitates functional restoration Treatment of depression and anxiety Treatment of moderate to severe pain Diazepam 10mg (Valium) Tablets Periodic use to manage anxiety Lidocaine 2%, Prilocaine 2%, Topirmate 2.5%, Transdermal cream Meloxicam 0.09% applied locally for Transdermal cream neuropathic pain apply up to 4 grams, 4x daily (16grams/day) Zolpidem 10mg (Ambien) Tablets Periodic use to facilitate effective sleep Annual Cost (Low End) $0-$560 1 $ $7,575 1 $ $138 1 $14,188 - Annual Cost (High End) Annual Cost (Mean) Annual Recurring Intermittent or Expenses Over One-Time Costs Lifetime $ 560.00 $ - $ - $ 280.00 7,575.00 $ 7,575.00 $ - $ - $ 7,575.00 $ 1,104.00 $ 2,484.00 $ - $ - $ 1,794.00 1 $ 14,188.00 $ 14,188.00 $ - $ - $ 14,188.00 $3,360 1 $ 3,360.00 $ 3,360.00 $ - $ - $ 3,360.00 $960 1 $ 960.00 $ 960.00 $ - $ - $ 960.00 $360 1 $ 360.00 $ 360.00 $ - $ - $ 360.00 1x over LE 24 hours/day for 7 days 12 hours/day for 4 days 6 hours/day for 3 days 4 hours/day for 14 days 8-18x over LE 8-18x over LE $1,120 1 $ 1,120.00 $ 1,120.00 $ - $ - $ 1,120.00 $158-$236 1 $ 1,264.00 $ 4,248.00 $ - $ - $ 2,756.00 $134-$205 1 $ 1,072.00 $ 3,690.00 $ - $ - $ 2,381.00 $15,047 1 $ 15,047.00 $ 15,047.00 $ - $ - $ 15,047.00 $3,360 1 $ 3,360.00 $ 3,360.00 $ - $ - $ 3,360.00 $960 1 $ 960.00 $ 960.00 $ - $ - $ 960.00 $360 1 $ 360.00 $ 360.00 $ - $ - $ 360.00 $1,120 1 $ 1,120.00 $ 1,120.00 $ - $ - $ 1,120.00 $158-$236 1 $ 1,264.00 $ 4,248.00 $ - $ - $ 2,756.00 $134-$205 1 $ 1,072.00 $ 3,690.00 $ - $ - $ 2,381.00 $17 17 $ 68.00 $ 68.00 $ 68.00 $ 1,156.00 $ - $95 17 $ 1,140.00 $ 1,140.00 $ 1,140.00 $ 19,380.00 $ - $25 17 $ 300.00 $ 300.00 $ 300.00 $ 5,100.00 $ - $9 17 $ 36.00 $ 36.00 $ 36.00 $ 612.00 $ - $508 17 $ 6,060.00 $ 6,060.00 $ 6,060.00 $ 103,020.00 $ - $216 17 $ 864.00 $ 864.00 $ 864.00 $ 14,688.00 $ - $ 145,907.00 $ 250,279.00 $ 10,686.00 $ 181,662.00 $ 1x over LE 24 hours/day for 7 days 12 hours/day for 4 days 6 hours/day for 3 days 4 hours/day for 14 days 8-18x over LE 8-18x over LE Anti-inflammatory for PRN mild to moderate pain 90, 4x/year Venlafaxine 37.5mg (Effexor) Tablets Hydrocodone/APAP 10-650mg (Lorcet) Tablets # of Yrs 1x over LE Facilitates functional 8-18x over LE restoration Subtalar Fusion Recommended by (Includes Facility Fee, Dr. Fukuda to Surgeon Fee, Assistant improve functional Fee, Anesthesia, status and decrease Hardware, Equipments, ongoing pain related Pre-Op & Post-Op Care) to traumatic arthritis Cost/Unit (Range) QD 30/month TID 90/month PRN 30, 4x/year PRN 408gm/ month PRN 30, 4x/year Total Projected Costs Costs based upon actual expenses & TX U&C general liability pricing guidelines for specific geographical region. 187,407.00 3 Paula Brown Report Date: 12/21/11 Life Care Plan- Financial Recommendation Purpose Frequency Cost/Unit (Range) # of Yrs Annual Cost (Low End) Annual Cost (High End) Annual Cost (Mean) Total Annual Cost (mean) Total Projected Lifetime Expenses Costs based upon actual expenses & TX U&C general liability pricing guidelines for specific geographical region. $ Annual Recurring Intermittent or Expenses Over One-Time Costs Lifetime Estimated Estimated Annual Intermittent Recurring or One-Time Expenses Expenses Over Lifetime Over Lifetime 369,069.00 4 µ Howland Health Consulting, Inc. Wendie A. Howland RN MN CRRN CCM CNLCP Life Care Planning Case Management Services Life Care Plan Report Date: Name: Date of Birth: Date of Referral: Customer Name: Medical Diagnoses: Date of Injury: Mary Doe , 1983 Jones Law Firm 42% total body surface area burns • Face and ears: superficial, partial-thickness, and deep partial-thickness • Posterior thighs and buttocks: deep partialthickness and full-thickness • Anterior thighs, superficial, partialthickness, and deep partial-thickness • Chest: superficial and partial-thickness • Hands: deep partial-thickness and fullthickness , 2008 866-604-9055 fax 915-990-1367 www.howlandhealthconsulting.com 2 Mary Doe , 2010 INTRODUCTION A Life Care Plan is a tool for estimating medical and non-medical needs of a person with a catastrophic injury or chronic illness over an estimated life span. It is a dynamic document based upon published standards of practice, comprehensive assessment, data analysis and research. A Plan may include medical needs and costs, future projections, and a vocational assessment. The contents may be comprehensive or modified, based on the needs of the party making the request. This Life Care Plan is not generalized for burns; it addresses the author’s best nursing assessment of Ms. Doe’s specific health status and needs. The assessment includes collecting subjective and objective data from observations, examinations, interviews, and written records. The Plan follows the nursing process to develop a goal-oriented plan of care as defined in the Nurse Practice Act. All prices included in the Plan are based on today’s dollars and are obtained from suppliers, facilities, pharmacies, vendors, and providers. Shipping is included in costs if the product is unavailable in the local area. Equipment maintenance varies with individual needs and frequency of equipment use. Costs do not reflect inflationary trends of the health care industry. Allowances for inflation and any medical care cost trends should be determined by a qualified Economist. This Plan cannot guarantee absence of errors and omissions, nor can it guarantee optimal outcomes with suggested interventions. The plan provides a guideline for optimizing the client’s rehabilitation to prevent possible complications. Implementation of this plan cannot guarantee the absence of complications, predict with certainty the client’s future needs, or guarantee all costs related to the client’s future medical and care needs. The author reserves the right to modify it if new information is received. The Life Care Plan should be reviewed and updated by the author every 6 to 12 months. It does not include a vocational assessment to address loss of income. A qualified vocational counselor should be consulted for this purpose. Finally, the Plan includes recommendations for continuing medical case management services to coordinate cost-effective medical care and address recommended equipment needs. 3 Mary Doe , 2010 RECORDS REVIEWED Approximately 4500 pages of medical records, medical billing, photographs, and other reports were received. All records received were reviewed. Past Medical History and Summary of Care Ms. Doe was 25 years old when she sustained extensive burns on April 12, 2008 in an explosion and fire at a house in Town, ST. She and her friend, who was also burned, were thrown to the ground outside the back door, landing in a yard described as containing a large amount of dog feces from pets in the home. They drove to the nearest emergency room, County Memorial Hospital. Ms. Doe had partial- and full-thickness burns on her face, head, ears, hands, back, buttocks, and thighs, totaling 45% total body surface area (TBSA), a major burn injury. Her chest, abdomen and lower legs were spared. She was sedated and paralyzed for long-term respiratory support since she had signs of being at high risk for pulmonary injury, e.g., facial burns, scorched hairs in her nostrils, and soot in her mouth. She had initial fluid resuscitation and sedation, and was then 4 Mary Doe , 2010 transported by helicopter to the Burn Intensive Care Unit at Mercy Hospital in City ST under the care of Dr. Adams. She underwent immediate flexible bronchoscopy, at which time no carbon, erythema, or edema were found in her airways. The endotracheal tube was left in place for respiratory control, supplemental oxygen, and pulmonary toilet (to suction secretions). Burns are a particularly devastating injury. Unlike many other tissue wounds, burns will not heal if left alone. In all but the most superficial wounds, all burned tissue must be debrided (cut away) down to healthy tissue below, often repeatedly; wounds are then covered with biological dressings (various preparations of pig or synthetic skin) until they are stabilized; grafting with more permanent covering follows. Sometimes this is accomplished with a temporary synthetic material that acts as a scaffold for normal tissue; the burn surgeon removes this and applies skin grafts to the area. As scar tissue develops, parts of it too must be cut away, to allow function of the part below it. New skin and grafted areas may be delicate, tear easily, become infected, and heal poorly or not at all. This process can take many years to complete. Burn care involves excruciating pain for years; the psychological effects of the pain, helplessness, and disfigurement are devastating. Many burn patients say that they wish they had died rather than endure it. PTSD is common. At arrival at Mercy Ms. Doe had immediate wide debridement of approximately 168 cm² of facial burn wounds, with porcine (pig skin) graft placement, and approximately 5200 cm² on her torso and legs, with more porcine grafts placed. Three days later, on April 15, she had more burn wounds cut away and grafting on both hands and elbows. On April 19, she developed a high fever, suspicious for infection. She therefore underwent more excision of her burn wounds, on buttocks, upper thighs, back of neck, both ears, cheek, face, and chin. On April 23, she underwent bronchoscopy and tracheostomy, as long-term airway control would be necessary. 5 Mary Doe , 2010 Over the next several weeks she underwent multiple excisions and grafting of the burns on her face, neck, arms, hands, buttocks, and posterior thighs. In mid-May, there was graft disruption and fecal contamination of a large grafted area on her buttocks (above) which required more excision and new grafts. Grafts on both of her hands failed, resulting in open wounds and severe pain. These, too, were excised, with damaged tissue cut away, and new grafts applied. On May 27, more than six weeks after the explosion, her face and ears were deemed ready for grafting. Donor skin was harvested from her back and posterior scalp. This involves shaving a thin layer of the donor skin away using a surgical plane, and placing it on the burned area. Graft donor sites are extremely painful since the nerve endings in the skin are sliced and exposed to the air when the plane removes the upper layer of skin, leaving an oozing open wound of extensive size. Burn scars hypertrophy (grow and grow) especially on areas which are normally mobile, like face and joints; rigid hypertrophic scars distort the area and prevent normal function. Pressure must be exerted on scars with garments or other appliances 23 out of every 24 hours for months to years. Garments are hot and painful and can be frightening to wear. Scarring around the mouth causes the mouth opening to shrink and become rigid (microstomia); a mouth appliance to stretch the mouth may be included in the mask. Scarring under the chin pulls the cheeks and chin down, distorting the appearance further. Pressure was applied to all Ms. Doe’s grafted areas with a tight face and neck mask; this was not removed for about two weeks. She was kept paralyzed, sedated with medication, and on a ventilator for three days to allow the grafts to take hold. Sedation and paralysis was decreased on May 31. Plans were made for further excision and grafting to the burned areas on her legs. On June 2, 2008, she had an initial evaluation by physical therapy and was found to have foot drop. Foot drop can be caused by allowing the foot to relax passively, pointing the toes, while on bed rest. This results in shortening in the Achilles tendons at the back of the leg, causing the foot 6 Mary Doe , 2010 to point downwards in a rigid position. It is usually prevented by regular range of motion exercises to stretch the tendon and maintain normal ankle movement in conjunction with splinting in the normal position of function. Unless this is done, standing and walking will be difficult or impossible due to pain and lack of ankle motion. Although she had had no burns on her feet and lower legs, she was found to have foot drop so severe that she was unable to stand unassisted. On June 2 a neuropsychologist, illegible signature, spoke with her family for the first time. It was noted that he or she would see Ms. Doe “in the next few days” to “address deep issues of adjustment and acceptance.” On June 4, the burn surgeon removed the temporary material from a very large area of her buttocks and thighs and applied split thickness skin grafts (STSG). The donor sites were from the unburned skin on her legs. On the same day her physical therapist working with her hands noted that she cried throughout her entire treatment period. On June 5, the psychologist (signature illegible) noted that Ms. Doe was very fearful and had poor coping skills. Plan was to “continue to address anxiety and fears and monitor progress.” No specifics were mentioned in this note. No other psychology notes are found during the time Ms. Doe spent in St. Elizabeth’s except one note on June 13 stating, “seen in chart review,” no changes planned. Over the next two weeks multiple therapy notes mention Ms. Doe’s high level or fear, resistance to treatment, and increased scar tightness. A burn surgery team member wrote that progress was limited by decreased willingness to participate in therapies. The therapist noted that she would need extensive physical, occupational, and psychotherapy in a rehabilitation setting (June 11 note). No further psychological notes of assessment or supportive treatment are found in the records available for review. Throughout this entire admission she received nutrition by feeding tube to support the massive caloric and protein demands needed for burn healing. This was necessary even after she was able to take food orally, as she had difficulty in opening her mouth well enough to eat, and because caloric requirements were greater than she could consume. In summary, for almost ten weeks in the acute burn care unit she underwent repeated surgery to cut away injured tissue and, later, scar tissue; place temporary biologic and other specialized 7 Mary Doe , 2010 burn wound dressings; and apply skin grafts, some of which were complicated by infection and had to be replaced. She wore extensive and painful pressure garments, learned that she had extensive facial and other disfigurement, limited use of her hands, was unable to speak due to her tracheostomy, and was unable to walk normally due to foot drop. She had extensive painful occupational and physical therapy, and little psychological support. Her physical therapist dis- charge note documented her capabilities and needs as: • able to turn in bed, sit up, and stand with moderate amount of assistance • able to walk 10 feet of the walker and moderate assistance • passive range of motion in arms within normal limits except wrists and fingers, limited • able to oppose index, long, and ring fingers actively • pressure garments and wraps his arms and fingers, face mask to face and neck • microstomia prevention appliance to mouth as tolerated • flexion gloves on two hours/off two hours during the day, on at night as tolerated; when off, splints should be on at night • ankle flexion about 15° • will require intensive inpatient rehabilitation OT, PT, and psych Ms. Doe was discharged from Mercy on June 19, 2008 to the acute rehabilitation unit at ABC Rehabilitation Hospital in City ST. Admission diagnoses were noted as the following: • extensive burn injury, status post multiple procedures and prolonged hospitalization • deficits in mobility and self-care • deconditioning • anxiety and adjustment issues • “diagnosed with posttraumatic stress disorder by psychiatrist at Mercy” No specific mention was made of her foot drop, although this would have been considered under mobility deficits. Plan was for physical therapy, occupational therapy, recreational therapy, weaning off tracheostomy, psychology, dietitian consult. Note was made that she had had all her teeth extracted three or four years previously. She has no dentures; her facial changes would make it necessary for her to have new ones in any case. 8 Mary Doe , 2010 Case management admission note states that Ms. Doe’s goal was to go home with her mother and her daughters, then aged six and seven. There is no documentation of any kind of neuropsychological evaluation, but the plan is given as individual therapy once or twice a week for 20 to 30 minutes, estimated length of stay, six weeks. Outcome goal, was given as “patient will report satisfactory adjustment to rehab and medical condition.” No note is made of the patient’s own outcome goals. This note is signed by a PhD, but the name is illegible. Initial team conference after admission determined the following goals: • independent with directing self-care and burn care • completing self-care with moderate assistance • feed self with standby assistance • attaining neutral ankles to attain normal gait • independent transfers from bed to chair • independent walking 150 feet • standby assistance with handrail on steps • satisfactory adjustment to rehab and medical condition Concerns noted by the team included some respiratory distress, some swallowing difficulties, risk for infection, and contractures. Education/training needs: “Package of information related to burns was provided to the patient for her and her family.” No mention is made of any specific teaching related to the above concerns. No input from the patient herself is documented. Dr. Adams notes at outpatient burn clinic visit that Ms. Doe did not wish to wear compression garments. He wrote that she was “marginally cooperative” and “squawked” when areas that the physician felt were well-healed were palpated. He noted that she had limited mobility in her hands, was barely able to support herself standing, and needed aggressive therapy. Although Ms. Doe was diagnosed with PTSD at Mercy according to records received, and it is generally accepted that PTSD will have an impact on a person’s ability to cope with stressful situations, there is no note by this physician on any psychological concern, allowances made for the possibility, or any consult recommendation for psychological care. 9 Mary Doe , 2010 On June 30, 79 days post injury, it was first noted that Ms. Doe had a contact lens in her left eye. There was concern about long-term injury to the cornea if this were not removed, and ophthalmology consult was recommended. No note was found in Mercy’s documentation regarding the presence of the contact lens; as Ms. Doe had limited use of her hands, it is unlikely that she had obtained and inserted it without staff knowledge. As facial burns are a known risk for ophthalmic injury, eye examination is standard of care for any person with facial burns. On this day also, the first note from a psychologist was found. Dr. Jefferson’s note indicates a consult with the charge nurse, who was concerned about Ms. Doe’s resistance to removal of the contact lens. The psychologist’s plan was to meet with the patient early the next day, before the ophthalmology appointment, to help her process information and make an informed choice about vision based upon physician recommendation. Ophthalmologic consult noted very poor, limited vision in the right eye and distorted scarred cornea underneath the contact lens in the left eye. The ophthalmologist documented that he explained that leaving the contact lens in place put her at severe risk for blindness from infection in that eye. She stated that she understood the risk of going blind her left eye. The ophthalmologist recommend consult with eyeglass vendors, but Ms. Doe stated that she was afraid she would not be able to see without the contact lens and didn’t think glasses would fit the burns on her ears, nose, and face. The psychologist did not come to see her until late in the afternoon, after this appointment. She did not change her mind. Subsequent case management status report on care plan indicated estimate estimated discharge date of July 31. These notes also discuss that Ms. Doe was eager to get home. Barriers noted included need for large amount of pain medication, but that patient frequently refused this. Ms. Doe was described as not always compliant with instructions to where compression gloves; refuses contact approval and being fitted for glasses. She was walking with a platform walker, transferred with minimal assistance, and fed herself with some cuing. This progress note addresses no psych issues, no psychological support issues, and no behavioral issues. However, physician note mentions weaning Seroquel (quetiapine, commonly prescribed for depression), Klonopin (clonazepam, benzodiazepine, for anxiety and panic disorder), methadone (synthetic opioid for pain) and Lyrica (pregabalin, for neuropathic pain), 10 Mary Doe , 2010 The next team conference was on July 8. Goals were unchanged, with discharge planned for July 31. Team was concerned about her ongoing resistance to some of her range of motion needs, resistance to wearing compression garments, resistance taking out her contact lens, so they documented that they were developing a new plan of therapy to begin the next day. This plan was to have a neuropsychologist assess her for depression and gain insight into her rationale for not being “completely compliant with all orders from physicians.” Spiritual care was to be involved to assess coping skills. They were to ask her if she would like a family meeting. They also noted that she was resistant about taking pain medication, which affected her ability to take part in all activities. Team concerns: she appeared depressed, was resistant to care and “orders,” did not appear to understand possible long-term effects of burns, was eager to be discharged home, and missed her family. Education and training needs were documented as addressed by the same boilerplate of a “packet of information given to her for her family.” It is notable that not one of these team meeting records indicate Ms. Doe’s participation, and there is no documentation of any new insight into her rationales for her not being willing to participate in care as recommended by her team or strategies to work with this. There are no regular notes found or referred to for any kind of psychological care, much less 20 to 30 minutes several times a week as planned at admission. There is no note of any change in approach to assess or address her psychological status. There are few notes from any discipline that indicate anyone took any time to sit and listen to her fears, concerns, or goals. At this point she been in the facility for almost 4 weeks without documentation of any meaningful psychological evaluation or support. It was clear to staff that her coping style was inadequate; this was noted often. Daily nursing checklists consistently noted that her speech, behavior, affect, and mood and thought processes were within normal limits; however, written nursing notes indicate significant difficulties with all of them. The tone of notes from nursing and burn clinic indicates that staff felt frustration and impatience with her. The next psychologist note is dated July 10. It states that she had “some compliance issues emerging lately–have added to behavior rounds as well.” She was discussed in behavioral rounds that day, and the psychologist discussed her independently with therapists. There is mention of a “new schedule” that was to begin the next day, “hopefully patient will increase compliance with 11 Mary Doe , 2010 activities and schedule.” However, there is no note that the psychologist ever spoke to Ms. Doe herself. Over the next several days there were increasing indications that Ms. Doe was angrier, more guarded, and upset. There was no note of implementation of any “new schedule.” She delayed or refused several aspects of her burn care. She stated she wanted to go home and leave the hospital without medical approval. She was “given several talks” regarding the possibilities of further health complications including infection and contractures. They also mentioned the insurance ramifications of leaving against medical advice, implying that insurance would deny her bill if she left against advice. Her attending physician discontinued all her pain medication. Discharge note dated July 14 by Dr. Washington indicates that she refused pain medications methadone, Lyrica, and Norco (hydrocodone, synthetic opioid); however, at the end of this dictation it indicates increased doses for all of these. It appears that this is part of the admission dictation and was included in the dictation for discharge for unknown reasons. It was noted that her ex-husband had been educated on burn care, and the team felt he was doing an adequate job. She was being discharged home at her own insistence, and the team felt it was fairly safe without imminent danger. It was recommended that she continue with the Lexapro (escitalopram, selective serotonin reuptake inhibitor [SSRI] for major anxiety disorder) long-term for PTSD. This appears to be the only mention of any care specifically for PTSD. List of discharge diagnoses included: • burns • urinary tract infection • tracheostomy • pain • adjustment disorder with anxiety • PTSD • corneal ulcer • hand and ankle contractures The nursing discharge note indicates that the ex-husband assisted with shower and burn care effectively. Outpatient care was to begin the next day at Community Hospital in Town, ST. Ms. 12 Mary Doe , 2010 Doe was issued size medium pressure gloves. Her ex-husband demonstrated independence with donning gloves and splints, range of motion program, and skin care. Therapist felt she needed a tub transfer bench at home, although there is no note of anyone obtaining one for her, and she did not have one when I visited her in October 2010. A primary care physician is identified in Town, ST, a Dr. Wilson. There are no records from this office. Follow-up appointment in burn clinic was with Dr. Adams two days later. There appears to be no psychological input into this nursing summary. Team discharge note indicates patient met only 2 of 9 long-term goals, as she insisted on discharge home “earlier than the team recommended or anticipated.” The team “pulled together a discharge plan,” and she went home with her ex-husband’s support. The therapist notes recommends wound and skin care supplies to go home with her. She also notes that hand range of motion significantly reduced and there is decreased balance due to foot drop requiring Ms. Doe to walk on tiptoes. There is a note here to document medical necessity for a walker or wheelchair, but it is not clear whether these were obtained for discharge. There are three pages of the discharge plan instructions, but they are not signed by the patient, any clinician, or dated. These included information about Community Hospital outpatient services, names of speech, occupational and physical therapists, and date and time of OT and PT appointments. No records are available from this facility. There are three more notes from Mr. Burr, physician’s assistant in the burn clinic, dated July 23, September 10, and October 15, 2008. They indicate that he had received calls from physical therapy staff saying that Ms. Doe missed a number of appointments, which she denied. He notes increasing contractures in her hands, notably right second and fifth fingers, and left fifth finger. She said that they were not splinting it in therapy, and she is not aggressively exercising them. There is no note about any deficits in her lower legs, difficulty walking, balance, or other related problems which were noted a week before discharge. There is note that she would be referred to plastic surgery for scar tissue in her cheek around her mouth, but no notes are found to indicate that this referral was ever completed. This note uses the word “sternly” and “told her that unless she was willing to comply with treatment plans in all aspects, care could be refused.” Witnesses to this conversation are mentioned. Follow-up scheduled for two months later, but it appears that she never returned. 13 Mary Doe , 2010 On January 13, 2009, there is what appears to be a physician’s note, but it is not on letterhead and has no signature. It states that she came in for preoperative history and physical, needing a right little finger contraction release. Plan was to call directly into Mercy Hospital, surgery should be done on by Dr. Jay on January 15. There are no records to reflect whether this was ever done. Three months later, April 2009, there is a note from Dr. Harrison, orthopedics, after she fell and sprained her wrist; no fractures found on x-ray, no follow-up needed. In March 2010, she visited a physician, no name given, dictation noted by JP. Seen for cough, congestion, and runny nose. In June 2010, an unsigned note mentions that Dr. Truman could not see her unless she was seen in the emergency room first in their office was on call. No appointment was made. This note is also signed by JB. Another note of the same day signed by JJS (possibly J….. S…., MD, a primary care physician) indicates that she has had some surgical repair of contractures in her fingers in the past (in 2009?), but they have been unsuccessful in maintaining position of function. Notes that she had pain in heel and foot with dorsal flexion of the feet against resistance (consistent with Achilles tendon shortening). Plan was to refer to Dr. Truman, who does upper extremity surgery. There are no further medical notes to review. Health Care Providers The health care providers involved in Ms. Doe’s care according to available medical records are outlined below. At the time of discharge from ABC Rehabilitation Hospital, ongoing care was scheduled with Dr. Adams in Mercy’s burn clinic, and with a physical therapy facility in Corning, Iowa for what was anticipated to be many years of ongoing therapies for burn scarring, contractures, and pain. It appears from records received that these were not fully realized. At the time of our meeting at her home in Village ST on October 14, she had had no followup care of any kind for at least 18 months. Health Care Providers from Records Provider Address County Memorial Hospital Town ST Contact Numbers Specialty Hospital, acute care 14 Mary Doe , 2010 Mercy Medical Center D.W. Adams MD City ST Hospital, acute care Mercy Medical Center, City ST R.N. Burr, PA Mercy Medical Center, City ST M.A. Tyler MD Mercy Medical Center, City ST E.T. Washington MD ABC Rehabilitation Hospital P. Wilson MD City ST M.C. Kennedy MD M. Jackson PhD City ST City ST General surgeon Physician assistant Colorectal surgeon Physiatrist Internal medicine, family practice, infectious disease Ophthalmology Clinical psychology Help from an expert case manager, Andrew Monroe RN of the Expert CM Group, was obtained to assist Ms. Doe in identifying and accessing continuing care for her burns and their complications. When I interviewed her Ms. Doe reported that she had no current healthcare providers because she had no money and no insurance. Mr. Monroe reported that he had been unsuccessful in getting her seen by providers due to financial constraints, i.e., she had no insurance except Medicaid and they would not accept Medicaid patients. Ms. Doe’s past medical history included two difficult pregnancies with premature labor, total hysterectomy during a third pregnancy due to uterine perforation during surgery for endometriosis, multiple urinary tract infections, chronic constipation with diarrhea, and extraction of all her teeth. She says she was diagnosed with a blood clotting disorder at the time of her last pregnancy and was told she should wear support hose to decrease the risk of clots in her legs; she does not have any. She has a family history of lupus erythematosus and is concerned that she has some of those symptoms as well, specifically hair loss and rashes. Ms. Doe smokes constantly, up to four or five packs per day by her estimate, depending on how stressed she feels. She says she has had no alcohol for four or five months, and before that, it was rarely. She eats one meal per day. She describes inability to sleep more than an hour or two at 15 Mary Doe , 2010 night due to pain, intrusive thoughts and horrible nightmares, some of which are so terrifying that she loses control of her bladder and is afraid to try to go back to sleep. She is hypervigilant, startling at the least sudden sound. Flames are terrifying; even the smell of burning food causes flashbacks to the explosion and fire. She says she doesn’t think anyone can help her with her problems; indeed, she never asked me about what I or anyone could do to help her. When asked about pain, she said she can stand the constant pain from the burns and surgeries, but then said, “But, oh, my feet!” She is unable to walk, sit, or stand without severe pain in her feet and lower legs, indicating the area of the Achilles tendon. She is unable to walk normally with the severe limits on her ankle range of motion, so she has to turn her feet sideways to make forward progress. This is an unstable stance. It has caused her to develop severe pain in both hips. It makes stairs almost impossible, so she is unable to go downstairs to the basement where the laundry is and where her children sleep. She and her housemate note that she has fallen several times; there is one orthopedics visit for wrist sprain after a fall. She cannot climb into the bathtub independently or shower safely alone. Her hands are obviously deformed and disabled from normal use. She says she has tried to develop workarounds for most of what she has to do with them, like household tasks, but is always bumping them or getting the fingers caught in things, producing a nearpermanent series of skin tears and shear- 16 Mary Doe , 2010 ing injury. She cannot wash her own hair because the contracted fingers get caught in it. It is difficult or impossible to open containers and do other fine motor skills. She says she had surgery to straighten them but they went right back to the way they were, and now she has been told she should have them amputated because they cannot be repaired. She does not want this done. Her eyesight is very poor. She has near-total vision loss in the right eye and sees very poorly with the left with a contact lens. Her last eye examination was about a year and a half ago; she was prescribed new contact lenses but never returned for them due to financial constraints. It is hard to tell how much of her vision impairment is related to corneal damage from the fire and subsequent lack of care and how much is related to what she says is severe astigmatism. She says she drives by fixating on the center line as it passes under the hood of her truck, but her passengers have to describe things for her and alert her to slow or stop if needed. She says she only drives at night “if I have to,” and does drive her children. She is devoted to her children and bitterly regrets being unable to do things with them, such as coach them in gymnastics (she says she was a gymnast when she was younger), play outside, or keep up with them, as at the store or walking outside. She also regrets being unable to keep house for them as she used to, due to pain, balance issues, and inability to use her hands well. She describes behavior problems and outbursts from them such as “I hate you, I wish you were never hurt!” and anger that she cannot physically do what they want her to do. She said they used to like her to come to school to have lunch with them and participate in their activities, but now they don’t want her to come because the other children stare at her. This is very painful for her. She says they have had no counseling. When asked, she says that they “have someone to talk to,” but could not tell me who that was. CURRENT MEDICAL ISSUES • Severe contractures, bilateral 5th fingers and right index finger • PTSD, anxiety, depression, sleep deficit • Disturbed balance, falls • Chronic low blood pressure • Pain in hips, feet, and ankles; post-burn pain 17 Mary Doe , 2010 • Recurrent urinary tract infection • Anorexia and recurrent vomiting attributed to stress • Tobacco abuse, bronchitis/COPD • Vision loss not corrected by lenses • Edentulous • Surgical menopause • Chronic constipation/diarrhea • Thermoregulation abnormality CURRENT MEDICATIONS • None CURRENT TREATMENT PLAN • None. She does some range of motion exercises and her roommate “works out her back.” VOCATIONAL Ms. Doe earned a GED at 17. Prior to her injury, she worked in a number of unskilled jobs, as a babysitter and at a truck stop. She says she was mostly at stay-at-home mom. Before her injury, Ms. Doe enjoyed bowling and outdoor activities with her children. Now she is limited to reading and sedentary video games indoors. LIVING ARRANGEMENTS Ms. Doe lives in a rental home with her two daughters aged 8 and 9. There are three bedrooms on the main floor; the cellar has three beds in it for children (right), plus the laundry, water 18 Mary Doe , 2010 heater, and furnace. Other residents include her sister-in-law and her children, and her friend Jamie who was injured in the explosion with her and was present for our interview. Ms. Doe’s former fiance is there off and on, but she says she has called off the engagement pending some problems he has to work out. He was present for part of our interview. There are also five cats and two dogs in the household, all calm and apparently in good health. It is noted that the care and affection given them is probably beneficial; there are many resources citing positive stress-relief of petting a companion animal. At the time of my visit the house was in extreme disarray, with clothes piled up on every floor, unwashed pots, dishes and old food, full of flies, overflowing ashtrays and soda cans pressed into service for this, broken curtain rods, and general litter and toys everywhere. She gestures to it helplessly and says, “It never used to look like this; I used to be able to clean this up in two hours.” She cannot descend into the cellar to do laundry; there are three stairs to the side yard extending down to the cellar (left above) which pose a hazard to her. There is a single bathroom with a tub-shower and a small kitchen. 19 Mary Doe , 2010 CURRENT FUNDING AND INCOME Ms. Doe receives $593 per month from Social Security Disability. She has no other source of income. She is on Medicaid for her medical expenses; however, she has been unable to identify a local physician who will see her for primary care who accepts Medicaid patients, and therefore has no referral source for other services. LIFE EXPECTANCY Normal life expectancy for a 27-year-old white female is 55.4 more years, to age 81. 1 Ms. Doe will turn 81 on 8/13/2064. Lifetime costs are projected for 55 years, although this may be optimistic given her stress, smoking and pulmonary insufficiency, risk of falls, and risky behavior (driving). This should be revisited as her condition changes with age. SUMMARY Recommended Evaluations While it is understandable that addressing needs for survival is paramount during acute hospitalization, this leaves psychological assessment and support needs unmet. Persons with burns can be expected to exhibit signs of post-traumatic stress disorder; up to 45% of patients with burns develop PTSD in the months and early years after injury. They are characteristically hypervigilant, anxious, have serious sleep disturbance, and constantly relive intrusive memories of surgeries, painful procedures, hopelessness, or other painful or frightening events of their injury and treatment. Psychological factors are the main limiting factor above all others in rehabilitation from this condition. Rehabilitation cannot proceed without psychiatric care and support. Ms. Doe has been diagnosed with PTSD, but had minimal treatment in the hospital and has none now. This is long overdue. Ms. Doe describes a life that was hard even before her burns, with little help from anyone and many daunting barriers and traumas. She doesn’t seem to expect much of life so hopelessness probably feels familiar. She puts up a tough front, wary, and uncommunicative to start, but did warm up over a few hours. She appears to find it hard to trust people. She gives the impression that she is doing the best she can to put one foot in front of the other to do what has to be done, especially where her children are concerned. She is very caring about making sure Jamie takes 1 National Vital Statistics Reports, Vol. 58, No. 21, June 28, 2010, http://www.cdc.gov/nchs/fastats/lifexpec.htm, table 6, retrieved 7/26/2010 20 Mary Doe , 2010 care of herself, too. However, she explosively admits to being very stressed and looks like she’s on the edge. Her memories of her time in the hospital are filled with pain, fear, frustrations, hopelessness, feeling that no one was listening to her, and that nobody was interested in what she thought or felt. We discussed that sometimes when people are in awful circumstances with little control over what happens to them, the only control they have is to say, “No,” even if they know they would be adversely affected by it. People with severe burns are more likely to have psychological problems if they had any before their injury. This describes her experience. Although it is understandable that some of her behaviors may be off-putting to caregivers, seen in context they are probably the only defenses she has. Her toughness can be her biggest asset. While she would probably describe herself as unwilling to take help, the right providers could help her and her children to cope with this terrible period in their lives. Therefore the plan includes provisions for psychological evaluations and counseling for her and her children to deal with role changes, grieving, body image, disability, effective coping with ongoing and future care, parenting skills, problem-solving, and family dynamics. Psychological care is not an optional frill in major burns; burns affect everyone in a family. At this point it is not clear whether the burn clinic would have anything to offer Ms. Doe in term of wound or scar care. It has been 18 months since she has seen them. One visit to determine whether they do would be reasonable, then annual follow-up, as many burn-injured persons are seen annually for follow up on scar maturation, contractures, and other long-term effects of burn injury. Wound contracture may continue for some time and can become disabling due to decreased range of motion and function. This is usually treated with physical medicine techniques: massage, therapy, splints, and so forth. Surgery may be a last resort. Again, many patients with PTSD cannot tolerate return to inpatient care or even outpatient surgery without considerable psychotherapy. Painful scarring is a difficult management challenge, but can often be helped with medications for neuropathic pain. Ms. Doe is wary of pain medication. However, consultation with a good pain management specialist who could integrate supportive services could result in a plan of care for some pain relief without unwanted side effects or fear of addiction. 21 Mary Doe , 2010 Evaluation by a good physiatrist with experience in burns would be beneficial to guide further evaluations and care for her foot and ankle pain, gait disturbance, range of motion, and physical/ occupational therapy issues. An occupational therapist should do a home visit to determine if any modified home equipment would be beneficial for safety and independence. Referral to a foot and ankle specialist for evaluation of her foot and ankle pain would be appropriate. It is possible that surgical release might be necessary to restore normal mobility. Ms. Doe has already had surgical release of the deformities in her fingers. Unfortunately, postoperative care for this requires frequent and aggressive therapy, and it was not successful. If the damaged fingers become infected from repeated trauma, they may need to be amputated to save the rest of the hands. A good hand plastics surgeon with experience in burns and prosthetics, not a general orthopedist, should make this evaluation and perform the surgery if indicated, to maximize the condition of the residual digit to help avoid wound breakdown and facilitate prosthetic fitting. If this becomes necessary or desirable, there are excellent finger prostheses available which would be cosmetically and functionally acceptable; these services are provided by an anaplastologist and a prosthetist. This would also be helpful with body image. Burned people may experience long-standing dermatological complications, such as ingrown hairs and impacted (clogged) sebaceous cysts. Dermatological consultation can be helpful with management; surgery may be needed for severe cases. Ms. Doe has never had a complete neuropsychological examination. Most burn centers do this at about 6 months post injury, because occult head injury consistent with the mechanism of injury and periods of hypoxia commonly seen with burns can have long-lasting cognitive sequelae. Her problems with balance may be partially related to inner ear damage in the explosion, for example. Ms. Doe has never had comprehensive pulmonary function testing. This should be done to establish a baseline as accelerated pulmonary insufficiency can be expected due to her smoking his- 22 Mary Doe , 2010 tory overlaid upon her pulmonary injury at the time of the explosion and fire. These effects often can reveal themselves years after the initial burn. Ms. Doe would benefit from a comprehensive ophthalmology exam to see if corneal surgery (transplant, implant, or other) would improve her vision. If it is possible for surgery to improve her vision, this would make her safer and more independent in many ways. A concurrent optometric examination will evaluate general vision and make recommendation for corrective lenses if needed for safe vision. It is possible that the thought of anesthesia and surgery would be very frightening to her and trigger serious PTSD symptoms. Ms. Doe eats only one meal per day by her account. I was unable to tell whether that was entirely due to anorexia, lack of teeth, financial constraints, or a combination of all, though she says one of her housemates is a very good cook. She could benefit from a dietician consult to help with food selection to optimize her nutrition. She also needs a dental consult to fit her with either good dentures or evaluate her for dental implants and bridges to make eating easier. Had she had dentures before her burn, she would need new ones now due to changes in her facial structure from scarring. Projected Therapeutic Modalities Ms. Doe would benefit from having regular physical and occupational therapy as prescribed by the physiatrist. Customized splints or other equipment for home use may be indicated. Because smoking can increase pain, especially orthopedic pain, and retard healing, a good smoking cessation plan would be appropriate. This would also benefit her children’s health and decrease the chances of fire in her home, both of obvious immediate benefit. This would likely need to follow (i.e., not be concurrent with) care for PTSD, too. Accelerated pulmonary insufficiency may lead to the need for supplemental oxygen, increased levels of home care, and institutional care in later years. Corrective lenses, either contacts or glasses, are needed now. 23 Mary Doe , 2010 Orthotics/Prosthetics As noted, this depends on evaluation by the physiatrist and therapists. Orthotics could help relieve some of her foot and ankle symptom and improve her ability to walk safely. Medical Equipment A tub transfer bench is needed immediately to decrease risk of falls in the bathroom. Modified kitchen and household tools are available for easier use by persons with dexterity, strength, or pain in hands. A modified steering wheel, e.g., rim knobs, and a pushbutton starter retrofit would make driving easier. Home Furnishings Persons with burns are more susceptible to thermal injury. Any hot water heater in the home should be set for 120 degrees F or less to prevent burns. Smoke detectors should be present on both floors of the house. Since burn scars are painful and contribute to sleeplessness, and are also more susceptible to pressure, a pressure-relieving surface mattress overlay would be beneficial; a “Sleep Number” bed is included in the plan because it would not need maintenance or replacement for 20 years and is thus more cost-effective than mattress overlays. Because she has difficulty in rising from a chair now and will have more difficulty as she ages, a lift chair would be helpful. Aids for Independent Function Modified kitchen and household tools are available for easier use by persons with dexterity, strength, or pain in hands. A decorative cane to help with balance and mobility might be more acceptable. A wheelchair has been recommended for her, at least for community distances, but she refuses to consider this. However, a scooter might be more acceptable and would give her more freedom to be independent. Meanwhile, a keyless ignition retrofit for her vehicle would be easier for her hands to use; adaptive handgrips for the steering wheel will improve her grip. Accessible design switches, faucets, and door handles will be easier for her to use. A tub transfer bench will improve bathroom safety and independence; a long-handled bath sponge will be safer than reaching to wash her feet and legs given her balance problems and can also be used to apply moisturizers to her grafted areas. As her mobility decreases, a raised toilet seat would be safer; padded seat is necessary to protect the grafted areas on her buttocks. Drug/Supply Needs Burned skin will be always dry, prone to cracking and itching, and at risk for secondary infection as a result. It needs frequent moisturizing because it has lost sebaceous 24 Mary Doe , 2010 glands that make natural lubrication; this will be required life-long.2 Sunscreen is essential for burned skin; UV-blocking clothing is available. Other medications, e.g., vitamin supplements, vitamin D, anti-anxiety medications for PTSD, bronchodilators, or pain medications, may be indicated depending on future evaluations. Medication and supply costs are based on local suppliers when possible. Generics are used where available. Future Routine Medical Care Routine monitoring and care from ophthalmology, orthopedics (hand, foot and ankle), dermatology, physiatry, pulmonology, dietician, and psychology/ psychiatry/pain management are likely to be needed for many years, if not for lifetime. Dentures are not included in this plan, although she needs them, because she was edentulous before her injury. Routine primary care should include general health screening panels as noted; pulmonary function testing and chest x-ray to monitor progression of lung effects of injury; bone density examination due to decreased ability to absorb vitamin D; and annual influenza immunization because she is at increased risk for complications. Her history suggests that four visits annually for bronchitis exacerbation can be expected. The cost of future medical care and anticipated complications could be decreased through continued expert coordination of medical care; case management services by a registered nurse with expertise in burn rehabilitation are included to coordinate care and facilitate communication between disciplines. Potential Complications It is quite likely that Ms. Doe will experience accelerated progression of her pulmonary dysfunction related to her injury and smoking. As normal skin is needed to absorb Vitamin D, which is needed for bone health, she will be at increased risk for osteoporosis. Because normal sensation is lost in burn areas, and because her hands are disabled from normal function, Ms. Doe is at risk for injury especially in exposed areas. Future Medical Care, Surgical Intervention, or Aggressive Treatment Based on past history, it is reasonable to expect orthopedic surgery for hands, feet and ankles, and possibly hips. If Ms. Doe does have one or several fingers amputated, she will need prosthetics for cosmesis and function. Pulmonary rehabilitation will be appropriate when her lung function decreases. 2 Holavanahalli RK et al, Long-term outcomes in patients surviving large burns: the skin, JBurnCareRes 31:631-639, 2010 25 Mary Doe , 2010 Transportation Ms. Doe’s eyesight has not been tested recently but she describes considerable limitations in vision. This plan includes costs for transportation to medical appointments and other normal needs. If her vision cannot be corrected, this need will be life-long. Health & Strength Maintenance The cost of future medical care and anticipated complications could be decreased through continued expert coordination of medical care by a registered nurse case manager with expertise in burns. Gym membership for self-directed exercise would be good for general conditioning and stress relief. Referral to a recreational therapy program to determine options for physical activities she can do would also benefit Ms. Doe’s mental and physical health. Architectural Renovations Ms. Doe lives in a rental house now so permanent renovations are not possible. They have not been in the house long enough to know whether heating and cooling are adequate for safety; burned scar tissue cannot compensate for changes in environmental temperature to maintain body temperature. Adequate heating and cooling will be essential. Any home in the future should include features of universal design, e.g., single floor layout, accessible bathroom and kitchen for safety, lever handles on doors, rocker electrical switches, no thresholds between rooms, safe flooring surfaces, wide doors and halls to accommodate mobility aids, access ramps, and access under cover from weather. These will all become increasingly necessary as she ages and can be useful now due to her mobility, balance, and manipulation disabilities. Her home should also have hardwired smoke detectors with battery backup and a controlled hot-water thermostat to avoid burns. A washer/dryer that does not require outside venting could be placed in her rental to avoid the need to go to the cellar, and could be moved with the family. Vocational/Educational Plan Ms. Doe formerly enjoyed being outside and active with her children and others, and worked to support them. She has depression that is made worse by her inability to participate in work and recreational activities. A vocational assessment could be helpful to facilitate meaningful paying work for her. Educational opportunities could open some doors for work commensurate with her physical condition. 26 Mary Doe , 2010 Note on Projected Costs When exact costs are not available and a range given, the number used in the total is the average within the range. Costs noted are for 90th percentile of usual and customary rates 3; contracted rates or actual billed amounts may vary by payor. Life Care Plan Table of Contents ! Tables Page Future Routine Medical Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . i - iii Recommended Evaluations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . iv - v Projected Therapeutic Modalities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . v - vi Mobility / Maintenance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . vii Scooter Accessories . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . vii - viii Orthotics / Prosthetics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . viii Home Furnishings and Accessories . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ix Aids for Independent Function . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ix - x 3 Drug/Supply Needs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xi Home Care/Facility Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xii Future Medical Care, Surgical Intervention, or Aggressive Treatment . . . . . xii Potential Complications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xiii Transportation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xiv Health & Strength Maintenance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xiv Architectural Renovations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xv Lifetime Cost Projection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xvi Medical Fees in the United States 2010, PMIC, Los Angeles CA. Copyright 2009, American Medical Association. ISBN: 978- 157066-612-4 Life Care Plan! ! ! ! ! ! ! ! ! ! ! ! ! i Mary Doe Date of Birth: 1983 Date of Injury: 2008 Date Submitted: 2010 Future Medical Care: Routine / Scheduled Routine Medical Care Description Primary care: • Cardiovascular and general medical assessment with EKG, general health panel, urinalysis, immunizations, bone density exam Burn/Plastics followup Frequency Nursing diagnosis: Purpose Cost Per Visit Office visits: CPT 99215 $260 CPT 99213 $115 x 4 =$460 Ineffective self-health General health panel management: General CPT 80050 $207 medical followup is indicated Urinalysis CPT 81000 Annual for life to monitor systems that may $30 expectancy plus four be at higher risk for Immunizations episodes of care for complications post serious CPT 90471 $80 respiratory problems burn, especially renal, EKG CPT 93000 $111 pulmonary, and Bone density evaluation cardiovascular CPT 77080 $463 Chest x-ray, AP & lateral CPT 71020 $149 Pulmonary function CPT 94010 $144 Annual for life expectancy Ineffective self-health management: Evaluation for potential surgical or other interventions in ensuing year; referrals to other specialties Office visits CPT 99215 $260 Cost Per Year Lifetime Cost Recommended by $1,904 $104,720 Wendie Howland RN MN CRRN CCM CNLCP $260 $14,300 Burn center (cont.) Life Care Plan! ! ! ! ! ! ! ! ! ! ! ! ! ii Mary Doe Date of Birth: 1983 Date of Injury: 2008 Date Submitted: 2010 Physiatry: • Eval for complications, strength/ motor/ musculoskeletal & integumentary changes, adherence to plan, MD & case manager, pain management, referral to other services as indicated Annual for life expectancy Impaired physical mobility Dermatology Annual for life expectancy Impaired skin integrity, Ineffective thermoregulation Dietician, for weight and general nutritional assessment and recommendations Optometry / ophthalmology*** Counseling, psychiatric, 45-50 minutes, with medical evaluation and management services $260 $14,300 Wendie Howland RN MN CRRN CCM CNLCP CPT 99215 $251 $251 $13,805 Wendie Howland RN MN CRRN CCM CNLCP Twice yearly Risk of imbalanced nutrition: Assessment for adequate nutrition to support healing, energy requirements for ongoing therapy, optimize weight CPT 97802 One hour $188 $376 $20,680 Wendie Howland RN MN CRRN CCM CNLCP Annual for life expectancy Risk for injury: Corneal injuries with burns, increased risk of long-term sequelae, corrective lenses Screening CPT 99172 $61 Glaucoma test CPT 92140 $133 Refractive check CPT 92015 $99 $293 $16,115 Wendie Howland RN MN CRRN CCM CNLCP Stress overload, Compromised family coping, Post-trauma syndrome; risk-prone health Depends on behavior: Assess for assessment depression, PTSD, Assume monthly for substance abuse, body three years, then four image, life changes with times yearly* aging, parenting role (total 244 visits) challenges, smoking cessation CPT 90807 $241 $58,804 Wendie Howland RN MN CRRN CCM CNLCP CPT 99215 $260 (cont.) Life Care Plan! ! ! ! ! ! ! ! ! ! ! ! ! iii Mary Doe Date of Birth: 1983 Date of Injury: 2008 Date Submitted: 2010 Counseling, psychiatric, 45-50 minutes, using play equipment, physical devices, for 2 children Stress overload, Compromised family coping, Post-trauma syndrome; risk-prone health Depends on behavior: Assess for assessment depression, PTSD, Assume monthly for substance abuse, body three years* image, life changes with (total 72 visits) aging, parenting role challenges, smoking cessation CPT 90814 $420 $30,240 Wendie Howland RN MN CRRN CCM CNLCP Pain management Depends on assessment Assume four times a year for one year and then twice annually (total 112 visits) Chronic pain, Sleep deprivation CPT 99215 $251 $28,112 Wendie Howland RN MN CRRN CCM CNLCP 8-12 hours per month** Ineffective self-health management: Coordination of care, interspecialty communication, patient teaching, support 10 hours @ $80 = $800 $528,000 Wendie Howland RN MN CRRN CCM CNLCP Nurse case management $9,600 Total $829,076 * Wiechman SA, Patterson DR, BMJ 2004, 329(7462):391–3; Fauerbach JA et al, Psychosomatic Medicine 2007 69:473-482 ** Caragonne and Associates. Assessment Protocol: Case Management Support Needs, JNLCP X.3 Sept 2010 *** Medical Disability Advisor, Burns of the Eye, accessed 10/12/2010 Life Care Plan! ! ! ! ! ! ! ! ! ! ! ! ! iv Mary Doe Date of Birth: 1983 Date of Injury: 2008 Date Submitted: 2010 Recommended Evaluations Evaluation Nursing Diagnosis Neuropsychiatric evaluation, Post-trauma syndrome; Risk four hours for injury d/t tissue hypoxia* Burn/plastics initial evaluation Base Cost CPT 96118 $1452 Frequency Lifetime Cost Recommended By: Once $1,452 Wendie Howland RN MN CRRN CCM CNLCP Impaired healing CPT 99215 $251 Once, then annual f/u as above $251 Wendie Howland RN MN CRRN CCM CNLCP Chronic pain, Sleep deprivation CPT 99215 $251 Once, then f/u as indicated $251 Wendie Howland RN MN CRRN CCM CNLCP Physiatry, initial evaluation Self-care deficit CPT 99215 $251 Once, then f/u as above $119 Wendie Howland RN MN CRRN CCM CNLCP Physical therapy/orthotics: • Assess scar and contracture progression, equipment needs and modifications (orthotics), technology, home exercise program, adherence to plan, functional capacity, range of motion Impaired mobility CPT 97110 One hour $112 Once, then f/u as above $112 Wendie Howland RN MN CRRN CCM CNLCP Once, then annual f/u as above $165 Wendie Howland RN MN CRRN CCM CNLCP Once, then f/u as above $251 Wendie Howland RN MN CRRN CCM CNLCP Pain management initial evaluation Occupational therapy: • Evaluation for current and future adaptive technology for home and work, protective hand splints, hand therapy range of motion if possible Orthopedist / hand plastics specialist CPT 97762 $33 Self-care deficit Self-care deficit, Impaired tissue integrity CPT 97755 one hour $132 CPT 99215 $251 (cont.) Life Care Plan! ! ! ! ! ! ! ! ! ! ! ! ! v Mary Doe Date of Birth: 1983 Date of Injury: 2008 Date Submitted: 2010 Driving evaluation (visual screen and counseling first, then driving simulation if vision is acceptable) Impaired visual perception, Impaired mobility Visual screening, CPT 99172 $69 Counseling and risk factor reduction CPT 99402 $165 Once $234 Wendie Howland RN MN CRRN CCM CNLCP Impaired skin integrity, Ineffective thermoregulation CPT 99215 $251 Once, then f/u as above $251 Wendie Howland RN MN CRRN CCM CNLCP Ineffective breathing pattern related to hypoventilation Pulmonary function CPT 94010 $144 Once, then annual f/u by PCP $144 Wendie Howland RN MN CRRN CCM CNLCP Optometry / ophthalmology** Risk for injury: Corneal injuries with burns, increased risk of longterm sequelae, corrective lenses Screening CPT 99172 $61 Glaucoma test CPT 92140 $133 Refractive check CPT 92015 $99 Once, then annual f/u as above $293 Wendie Howland RN MN CRRN CCM CNLCP Dietician, for weight, general nutritional assessment, and recommendations Imbalanced nutrition, less than body requirements Once, then f/u as above $216 Wendie Howland RN MN CRRN CCM CNLCP Dermatology consultation Pulmonary function test CPT 97802 One hour $216 Total $3,739 * Wiechman SA, Patterson DR, BMJ 2004, 329(7462):391–3; Fauerbach JA et al, Psychosomatic Medicine 2007 69:473-482 ** Medical Disability Advisor, Burns of the Eye, accessed 10/12/2010 Note that results of evaluations may result in ongoing care, to be added to Routine / Scheduled care. (cont.) Life Care Plan! ! ! ! ! ! ! ! ! ! ! ! ! vi Mary Doe Date of Birth: 1983 Date of Injury: 2008 Date Submitted: 2010 Projected Therapeutic Modalities Therapy Nursing Diagnosis Treatment Frequency Base Cost Lifetime cost To be prescribed by Corrective lenses, annual until age 50, then every 2 years Impaired vision Annual Est. $150 $9750 Ophthalmology/optometry Impaired mobility CPT 97110 One half hour $56 Weekly $140 x 12 = $1680 2x/week for x13 weeks = $21,840 three months, then twice yearly Annual $22,064 first year then followup $224 / year $34,160 Physiatry Self-care deficit CPT 97110 One half hour $56 2x/week for three Weekly $140 x 12 = $1680 months, x13 weeks = $21,840 then 1 hour twice yearly for Annual $22,064 first year then followup $224 / year $34,160 Physiatry Physical therapy/orthotics: • Monitor for scar and contracture progression, equipment needs and modifications (orthotics), technology, home exercise program, adherence to plan, functional capacity, range of motion, treat as indicated Occupational therapy: • Monitor for changes in hand splints; hand and arm therapy, range of motion, treat as indicated Smoking cessation Home oxygen Total Ineffective breathing pattern TBD, assume weekly for six months CPT 99407 $64 $1,664 PCP or pulmonology Ineffective breathing pattern Assume for last ten years of life expectancy $175/month for concentrator and all supplies (Lincare, Lincoln NE) = $2100 / yr $21,000 PCP or pulmonology $100,734 (cont.) Life Care Plan! ! ! ! ! ! ! ! ! ! ! ! ! vii Mary Doe Date of Birth: 1983 Date of Injury: 2008 Date Submitted: 2010 Mobility/Maintenance Note: Any mobility aid should be fitted by a professional seating expert, not a vendor Wheelchair Type Age/Year Purchased Replacement Schedule Nursing Diagnosis Base Cost Lifetime Cost Catalog or Supplier Go-Go Elite Traveller 3-wheel scooter 28 / 2011 Every 5 years Impaired mobility $899 $11,988 • Amazon / EasyMed (1) $2970 • Invacare (2) • Health Products for You (3) • Enhancing Life Home Medical (4) $10,400 Various Wheelchair cushion InTouch Flovair Gentle or equivalent, fit for scooter seat Replacement wheels and tires 28 / 2011 Every two years Impaired skin integrity • $360 • $252 • $200.06 average $270 28 / 2011 Annually Impaired mobility Estimated $200 Total $25,358 (1) http://tinyurl.com/29jdspx; (2) www.invacare.com; (3) www.healthproductsforyou.com; (4) www.enhancinglife.org Scooter Accessories Wheelchair Accessory Wheelchair backpack 28 / 2011 Replacement Schedule Annual Battery x2 (one for back up) 28 / 2011 Annual Impaired mobility Estimated $150 $8,100 Various Battery charger 28 / 2011 Every two years Impaired mobility $25 $1,375 multiple Annual maintenance 29 / 2012 Annual Impaired mobility $100 $5,500 Wheelchair clinic or vendor Age/Year Purchased Nursing Diagnosis Annual Cost Lifetime Cost Catalog or Supplier Impaired mobility 40.00 $2,160 Various (cont.) Life Care Plan! ! ! ! ! ! ! ! ! ! ! ! ! viii Mary Doe Date of Birth: 1983 Date of Injury: 2008 Date Submitted: 2010 Scooter carrier to attach to vehicle: EZ-1 carrier and ramp $445 and hitch, plus installation; INCLUDES tie-down and security rail Econo Wheelchair and Scooter Lift + Class 2 hitch + installation Spinlife (1) $445 ScooterLink (2) $605 28 / 2011 Every 7 years $451 Brophy carrier with ramp + Class 2 hitch + installation $3,728 Ameriglide (3) $361 Hitchesonline.com (4) (average $466) Total $20,863 (1) http://tinyurl.com/35onq2u ; (2) http://tinyurl.com/2wbtgnx ; (3) http://www.ameriglide.com/item/AmeriGlide-AG001.html (4) http://www.hitchesonline.com/transporter.htm Orthotics/Prosthetics Equipment Description Hand splints Prosthetist Total Age/Year Purchased Replacement Schedule Equipment Purpose Annual Cost Lifetime Cost Catalog or Supplier 27 / 2010 1-2 x/ year Maintain position of function, protective Estimated $175 $14,437 occupational therapy provider depends on whether amputation is indicated, see Potential Complications, below $14,437 Life Care Plan! ! ! ! ! ! ! ! ! ! ! ! ! ix Mary Doe Date of Birth: 1983 Date of Injury: 2008 Date Submitted: 2010 Home Furnishings and Accessories Item Lift chair, Pride specialty LC-205, 2-position, battery backup Vent-free washer/dryer, e.g., LG WM3431 QuietLine WD-9900 Age/Year Purchased Replacement Schedule Nursing Diagnosis Base Cost Lifetime Cost Catalog or Supplier 27 / 2010 lifetime Impaired mobility $699 $699 Spinlife www.spinlife.com 27 / 2010 15 years Impaired mobility $1400 $7200 multiple • $4319 • $2455 • $3099 average $3291 $9873 • Select Comfort Retail • QVC (4) • Sleep Better Store (5) $47 $423 Wal-Mart.com, includes free shipping to local store Sleep Number Bed model 9000 or equivalent 27 / 2010 Every 20 years Risk for impaired skin integrity Kidde smoke & CO detectors 27 / 2010 Every seven years Risk for injury / tissue hypoxia Total $18,195 (1) 800-367-9444; (2) 877-753-3770 Aids for Independent Function Equipment Age/Year Purchased Replacement Schedule Equipment Purpose Base Cost Lifetime Cost Catalog or Supplier Modified kitchen tools, household tools 27 / 2010 lifetime Independence $500 est. $500 local hardware and homegoods store Keyless ignition for vehicle (average length of vehicle ownership in US = 5.5 years, NADA, 2010) StartSmart SSD-215 $450 27 / 2010 6 years Operate and lock vehicle Keytroller (1) $4,245 2Go Keyless DGD-PBS $399 DigitalGuardDawg (2) (cont.) Life Care Plan! ! ! ! ! ! ! ! ! ! ! ! ! x Mary Doe Date of Birth: 1983 Date of Injury: 2008 Date Submitted: 2010 Adaptive handgrips for steering wheel: MPS Tri-pin Spinner Knob 27 / 2010 10 years Operate steering wheel $103 $515.00 Adaptive Equipment Specialists (3) Light switches, accessible 27 / 2010 When moves from home, assume 2 moves Independence $100 est. $300 local hardware store Faucets, accessible 27 / 2010 When moves from home, assume 2 moves Independence $125 $375 local hardware store Lever door handles 27 / 2010 When moves from home, Open and close doors assume 2 moves $150 est. $4,650 local hardware store $168 • Enhancing Life Home Medical (4) • Health Products For You (5) • WalMart $1,110 • Enhancing Life Home Medical (4) • Health Products For You (5) • WalMart • $22.36 Long-handled bath sponge • $36.50 27 / 2010 Annual Independence in hygiene • $3.88 Average $21 Tub transfer bench Raised toilet seat with drop sides and padded seat 27 / 2010 Five years Independence in hygiene Average $110 • $219 • $96 40 / 2023 Every 7 years Impaired mobility $834 • $101 Average $139 Total • DMETree (6) • Enhancing Life Home Medical (4) • Health Products For You (5) $12,697 1) 813-877-4500; 2) 916-337-1040; 3) 888-707-0456; 4) www.enhancinglife.org; 5) www.healthproductsforyou.com; 6) www.dmetree.com (cont.) Life Care Plan! ! ! ! ! ! ! ! ! ! ! ! ! xi Mary Doe Date of Birth: 1983 Date of Injury: 2008 Date Submitted: 2010 Drug/Supply Needs Supply/ Equipment Description Drug (Prescription) Nursing Diagnosis Lexapro (escitalopram) 10 mg If resumed after psychology/psychiatry consult, assume 2011 Cost Cost Per Year Lifetime Cost Source $ 1160/ 365 doses $62,640 Average national retail price, Drugstore.com Cocoa butter bar soap Impaired skin integrity $1.50 / bar, assume 1 bar/week $78 $4,290 Average national retail price, Drugstore.com Cocoa butter lotion, Vaseline Intensive Care Hydrating Lotion Impaired skin integrity $4.50 / 10oz tube, assume 1 tube per week $234 $12,870 Average national retail price, Drugstore.com Pain medication, cannot specify Total As indicated after pain Commonly $1000-5000 / management year for chronic pain Assume ½ range =$2500 consultation syndromes $142,500 $222,300 Life Care Plan! ! ! ! ! ! ! ! ! ! ! ! ! Mary Doe Date of Birth: 1983 Date of Injury: 2008 Date Submitted: 2010 Home Care/Facility Care* Agency Home Care/ Service Recommendation Nursing Diagnosis Cost Length of Service Annual Cost Lifetime Cost Homemaking service Homemaking 2 hours per week Impaired physical mobility $40 Life expectancy until in facility (last 15 years of life expectancy) $2,080 $83,200 Assisted living or skilled facility care may be needed at a younger age than usual due to complications, unable to quantify at this time. Assisted living Self-care deficit $2719 / month Assume ten years $32,628 $326,280 Skilled nursing facility Self-care deficit $153 / day Assume last five years of life expectancy $55,845 $279,225 Total $688,705 *The 2010 MetLife Market Survey of Nursing Home, Assisted Living, Adult Day Services, and Home Care Costs, October 2010 Future medical care, surgical intervention, or aggressive treatment Condition / Treatment Corneal blindness requiring corneal transplant or implants Estimated Costs Corneal transplant CPT 65710, $4751, plus associated evaluation, hospital, medications, anesthesia, lab, and related costs, estimated total $20,000 per eye Lifetime Cost $40,000 xii Life Care Plan! ! ! ! ! ! ! ! ! ! ! ! ! Mary Doe Date of Birth: 1983 Date of Injury: 2008 Date Submitted: 2010 Potential Complications Complication Estimated Costs Dermatological: impacted cysts, ingrown hairs, deformed nails Lifetime Cost Lifetime costs not calculated as there is no objective basis or history for basis Pulmonary insufficiency; pulmonary rehabilitation, supplemental oxygen Home oxygen noted above, assume 10 years Pulmonary rehabilitation program, est. $1500 Home oxygen, 10 years, as noted above, $21,000 Pulmonary fibrosis with ventilatory failure; pulmonologist $80,000 per episode If she becomes ventilator-dependent, lifetime costs can easily exceed $500,000 per year for in-hospital care Ongoing chronic wounds, multiple; pressure ulcers; plastic surgeon, WOCN, pain management $70,000 per ulcer Lifetime costs not calculated as there is no objective basis or history for basis Osteoporosis risk: fall, fracture, posttraumatic intracerebral bleed, hospital care with skilled nursing care facility to follow Amputation, prosthetics Average cost of hip fracture care is $26,912 per patient, exclusive of post-acute care. (National Center for Health Statistics; Centers for Disease Control and Prevention; 2003 National Hospital Discharge Survey) Average annual cost of intracerebral bleed is $125,000 (Hsieh PC, Awad IA, Getch CC, Bendok BR, Rosenblatt SS, Batjer HH. Current updates in perioperative management of intracerebral hemorrhage. Neurol Clin. 2006;24:745-64.) $50,000+ for fingers/hand depending on extent of loss Not possible to specify but can be assumed to be considerable. Lifetime costs not calculated as there is no objective basis or history for basis xiii Life Care Plan! ! ! ! ! ! ! ! ! ! ! ! ! xiv Mary Doe Date of Birth: 1983 Date of Injury: 2008 Date Submitted: 2010 Transportation Mode of Transportation Taxi transport to appointments and grocery shopping if driver safety evaluation precludes driving Age/Year Purchased 27 / 2010 Replacement Schedule Equipment Purpose Estimate 30 trips to appts, 26 trips to grocery shopping, weekly other medical appointments, outing, annually; assume recreation, child care, less travel related to and grocery shopping children and more travel related to medical care in future years Base Cost $1.32 / mile: •approx $15 round trip local = $780 •approx $143 round trip to St. Elizabeth’s, Lincoln NE (54 miles each way per Mapquest), est. 30 trips = $4276 Lifetime cost Catalog or Supplier $277,750 Driving service City ST phone Fully licensed, insured, certified, and authorized with the State Public Service Commission (SPSC), Department of Transportation (DOT), and the Department of Motor Vehicles (DMV). = $5050 per year Total $277,750 Health & Strength Maintenance Description Frequency Base cost Gym membership for self-directed exercise plan, recreation with children, Y of Lincoln (4 locations), www.ymcalincoln.org $65 / month, family membership, until Annual membership to youngest child turns 18 = age 70 10 years, then individual membership $45 / month Recreational Therapy, estimated, program in formation Monthly, until age 70 Total $150 / month Annual cost Lifetime Cost 10 years, $7800 33 years, $17,820 $25,620 Wendie Howland RN MN CRRN CCM CNLCP $1800 $77,400 Amy Brown MA CTRS ATRIC, Town ST phone $103,020 Recommended / provided by Life Care Plan! ! ! ! ! ! ! ! ! ! ! ! ! Mary Doe Date of Birth: 1983 Date of Injury: 2008 Date Submitted: 2010 Architectural Renovations Renovation Nursing Diagnosis Replacement Schedule Base Cost Lifetime Cost Home inspection for safety and code Risk for injury immediate $320 $320 Ramp for home access with scooter Impaired mobility ten years $1800 $10,800 Catalog or Supplier Structural changes: None possible in current rental AmRamps (1) The following features should be present in the home for safe access: Bathroom access- remove thresholds, widen doors, open space for scooter turn-around, grab bars, roll-in shower or tub transfer device Kitchen access— remove thresholds, widen doors, roll-up counters, cupboards, drawers, and outlets reachable, stovetop controls in front Entrance/egress, ramps, thresholds removed, covered entrance General safety- light switches reachable, halls wide enough to turn scooter, fire / smoke/CO alarms with lights Total $11,120 Note: This home is generally unsuitable for anyone with a mobility deficit and may not be compliant with local building codes for safety. Consult a certified home modification specialist if modifications are needed for an existing home, and expect costs to be approximately $75-120,000. New construction or home in existing adapted living buildings can also be considered. 1) National distributor, 888-715-7598 xv Life Care Plan! ! ! ! ! ! ! ! ! ! ! ! ! xvi Mary Doe Date of Birth: 1983 Date of Injury: 2008 Date Submitted: 2010 Cost Summary: Recommendation Lifetime Cost Future Routine Medical Care $829,076 Recommended Evaluations $3,739 Projected Therapeutic Modalities $100,734 Mobility/Maintenance $25,358 Mobility Accessories $20,863 Orthotics/Prosthetics $14,437 Home Furnishings & Accessories $18,195 Aids for Independent Function $12,697 Drug/Supply Needs $222,300 Home Care/Facility Care $688,705 Future Medical Care, Surgical Intervention, or Aggressive Treatment $40,000 Transportation $277,750 Health & Strength Maintenance $103,020 Total $2,356,874 Please note that costs for potential complications, new medications and therapies pending medical evaluation, and replacement housing (purchase) or modifications to an existing home over the life expectancy are not included in this calculation and can be assumed to be considerable. Accessible housing options should be investigated by a qualified real estate agent and adaptive housing professional. Thank you for the opportunity to assist you with Ms. Doe’s Life Care needs. Please contact me with any questions. Cordially, Wendie Howland RN MN CRRN CCM CNLCP Principal, Howland Health Consulting, Inc., Certified Nurse Life Care Planner NURSE LIFE CARE PLAN Timothy Smith APRIL 7, 2015 Nancy Zangmeister RN, CRRRN, CCM, CLCP, MSCC, CNLCP, CBIS Quality Rehabilitation & Consulting Services, LLC Nurse Life Care Plan for Timothy Smith – Table of Contents Section One – Client Summary 3-34 Methodology Diagnosis Introduction Medical Timeline Records Reviewed Past Medical History Surgeries Related to Incident Current Medications Current Symptoms/Limitations Psychosocial Information Educational/Vocational Information Life Expectancy Nursing Diagnosis Summary Potential Complications LVAD Heart Transplant Wait List Clinic Heart Transplant Clinic Resources 3-4 5 5-8 8-24 24-25 25 25 26 26 27 27 27-28 28 28-29 29-30 30-31 31-32 33-34 Section Two - Nurse Life Care Plan without Transplant Usual & Customary Costs – Tables 35-44 Projected Evaluations 35 Supplies 36 Medications 37-39 Future Medical Care – Routine 40-42 Transportation 43 Lifetime Cost Projection 44 Section Three- Nurse Life Care Plan with Transplant Usual & Customary Costs - Tables 45-60 Projected Evaluations 45 Projected Therapeutic Modalities 46 Medications 47-48 Future Medical Care – Routine 49-56 Acute Surgical Interventions 57 Transportation 58 Housing/Child Care 59 Lifetime Cost Projection 60 2 Timothy Smith Methodology The American Nurses Association (ANA) defines nursing as the protection, promotion, and optimization of health and abilities, prevention of illness and injury, alleviation of suffering through the diagnosis and treatment of human response, and advocacy in the care of individuals, families, communities, and populations. The human response includes the reaction of the individual and family to actual or potential health problems. ANA notes “…Nurses are educated to be attuned to the whole person, not just the unique presenting health problem. While a medical diagnosis of an illness may be fairly circumscribed, the human response to a health problem may be much more fluid and variable and may have a great effect on the individual’s ability to overcome the initial medical problem. In what some describe as a blend of physiology and psychology, nurses build on their understanding of the disease and illness process to promote the restoration and maintenance of health in their clients…Nursing is a key element in patient survival as well as in the maintenance, rehabilitation, and preventive aspects of healthcare.." (ANA Nursing's Social Policy Statement, Second Edition, 2003). The American Association of Nurse Life Care Planners (AANLCP) defines nurse life care planning as the specialty in which the nurse life care planner utilizes the nursing process in the collection and analysis of comprehensive client data to prepare a dynamic document. This document provides an organized concise plan of estimated reasonable and necessary, current and future healthcare needs with the associated costs and frequencies of goods and services. The Nurse Life Care Plan (NCLP) is developed for individuals who have experienced an injury or have chronic healthcare issues. Nurse life care planners function within their individual professional scope of practice and, when applicable, incorporate opinions arrived at collaboratively with various health care providers. The Nurse Life Care Plan is considered a flexible document and is evaluated and updated as needed. The Nurse Life Care Plan is based on assessing health status, establishing goals, and planning care as defined in the Nurse Practice Act specific to the state of RN licensure. (AANLCP Membership Guide, 2008). The nursing process is the foundation of developing the nursing care plan. The nursing process includes an assessment, nursing diagnosis, plan of care, and implementation and evaluation of the plan of care. Nurse Life Care Planners also use the nursing process as the foundation to formulate a plan of care called a Nurse Life Care Plan. The Nurse Life Care Planner initiates the nursing process by reviewing medical records to understand the course of medical treatment, complications, and outcomes. The NLCP also conducts a nursing assessment with the client, family or caregiver to discuss present symptoms, limitations, and activities. In addition, daily living issues, psychosocial considerations, and family dynamics are examined. 3 Timothy Smith The Nurse Life Care Planner then identifies an appropriate nursing diagnosis to describe the client’s individual needs. When applicable, a collaborative approach is used with other health care providers to determine these needs. Research is also performed to determine long term outcomes, complications, costs, and maintenance and replacement frequency of recommended necessary medical and non-medical products. Nurse life care planning is an extension of case management where the nurse has learned to 1) perform an assessment, 2) formulate a plan of care in collaboration with the health care team members, 3) facilitate care for medical needs, and 4) negotiate costs related to care. A Nurse Case Manager can be introduced by the referral source to implement the Nurse Life Care Plan recommendations and evaluate the response to complete the nursing process. The Nurse Life Care Plan is specific to the individual and is intended to follow the client throughout her lifetime to ensure funds will be available to properly care for the client. Costs for medical care are acquired through actual and potential healthcare providers and national databases with a geographical zip code modifier. Other costs are secured through research with suppliers, facilities, pharmacies, and other resources. Where applicable, costs are obtained from various vendors and the median cost is listed in the Nurse Life Care Plan. The costs included in the Nurse Life Care Plan are based on today's dollars. No provision has been made for future inflation, therefore an economist should be considered. Costs have been rounded to the nearest dollar. The Nurse Life Care Plan should be reviewed and updated when there are significant changes to the medical condition. 4 Timothy Smith 391 Saddle Path Lane N. Pataskala, Ohio 43062-8028 Ph: (740) 964.9366 Fax: (740) 927.2766 Nurse Life Care Plan Report Referral: Client: Timothy Smith Address: Address: Phone: Fax: Email: Referral: Interview: Report: Phone: DOB: March 17, 1976 SSN: DOI: October 18, 2011 January 21, 2015 Not completed April 7, 2015 Medical Diagnoses Substantial acceleration of a pre-existing cardiovascular disease (Marfan syndrome), cerebral vascular accident (stroke), dysphagia (difficulty swallowing), deep venous thrombosis (arterial blood clot), protein S deficiency (most often inherited disorder that predisposes a person to venous blood clots), Lupus anticoagulant disorder (causes an increase in both arterial and venous blood clotting), epilepsia partialis continua (prolonged focal seizure [limited to one area of the brain]), bilateral pulmonary embolism (blood clots in both lungs), chronic anticoagulation (inability for the blood to clot), foot pain related to pressure ulcer, anemia, chronic heart failure hypertension, hemoptysis (bloody sputum), end-stage cardiomyopathy (abnormal heart muscle), and aortic root dilatation (enlargement of the root of one of the major blood vessels). Introduction Mr. Timothy Smith was referred by Mr. Mark Thomas, Esq. for the development of a Nurse Life Care Plan in an effort to address current and future medical and non-medical needs related to injuries sustained on October 18, 2011. Mr. Smith, thirty-four (34) years-old at the time of the accident, was involved in an incident at the deaerator storage tank where he was working. As a result of the incident, Mr. Smith developed substantial acceleration of a pre-existing 5 Timothy Smith cardiovascular disease (Marfan syndrome1). He had a history of decreased ejection fraction (35%) one year prior to incident2). He also experienced a cerebral vascular accident (stroke), and coronary thrombosis (blood clot) as a result of his incident. On October 18, 2011, Mr. Smith arrived for work around 5:30 pm to work inside the Unit 5 deaerator storage tank. Mr. Smith’s responsibility was to wire-wheel weld lines (cleaning welds with a wire wheel). Mr. Smith wore a respirator, steel toe shoes and safety glasses while working in the tank. Mr. Smith and the crew entered the tank through a manhole at approximately 6:30 pm and were instructed on the welds to wire-wheel. Before Mr. Smith could start his work, water began to flow into the tank followed by steam as a result of a valve malfunction. Mr. Smith and the crew immediately evacuated the tank back through the manhole. Mr. Smith and the crew did not return to the tank that night. Mr. Smith returned to work at Sun Petroleum the following day. Mr. Smith continued to work at Sun Petroleum for another week before being laid off and has not worked since that time. Figure 1 - Deaerator tank Figure 2 - Inside the tank Mr. Smith reportedly coughed up blood, (hemoptysis) and had a low grade fever with chills a day or two following the incident. He was examined by his family physician, Dr. Michael Norman, and treated with amoxicillin without improvement. In November 2011, Mr. Smith began experiencing a lack of appetite, and on December 5, 2011, Mr. Smith was admitted to the Clinic with 1 Marfan syndrome is a genetic disorder that affects the body’s connective tissue. Marfan syndrome can affect different parts of the body. Features of the disorder are most often found in the heart, blood vessels, bones, joints, and eyes. Some Marfan features – for example, aortic enlargement (expansion of the main blood vessel that carries blood away from the heart to the rest of the body) – can be life threatening. The lungs, skin and nervous system may also be affected. 1 The left ventricle is the heart's main pumping chamber, so ejection fraction is usually measured only in the left ventricle (LV). An ejection fraction of 55 percent or higher is considered normal. 6 Timothy Smith expressive aphasia (loss of the ability to produce spoken or written language), facial droop, and weakness of his right side. He was diagnosed with an acute left middle cerebral artery (MCA) infarct or stroke thought to be caused from an embolic event from his dilated cardiomyopathy. Mr. Smith experienced focal motor seizures (twitches) of his face during his hospitalization, and demonstrated bilateral hand tremors. He was started on Levetiracetam 500 mg twice a day and the medication resolved the facial twitches. At the time of discharge, Mr. Smith’s speech had returned to normal, and he regained full use of his right hand. His hospital course was complicated by gastrointestinal bleed (GIB) due to erosive duodenitis. On January 9, 2011, Mr. Smith was readmitted to the clinic with congestive heart failure (CHF) due to severe left ventricular dysfunction. He also suffered from weight loss and abdominal pain. On January 14, 2012, he experienced hypotension and cardiac arrest during the first Azithromycin infusion (as treatment for a respiratory infection), requiring cardio pulmonary resuscitation (CPR), dopamine and dobutamine. A thoracentesis was performed on January 23, 2013 with removal of two liters of fluid. Mr. Smith continued to deteriorate and developed cardiogenic shock. A left ventricular assist device (LVAD) was implanted on January 30, 2012 for treatment of non-ischemic cardiomyopathy and cardiogenic shock heart failure as a bridge to heart transplantation (the LVAD was inserted to enable Mr. Smith to survive until a heart transplant could be performed. At the time of the implantation, an eight centimeter (8 cm) RA/SVC (right atrial/superior vena cava) thrombus was removed. On February 15, 2012, Mr. Smith returned to surgery for a right atrial thrombectomy and bilateral pulmonary embolectomy. Mr. Smith ’s hospital course was further complicated by respiratory failure leading to a tracheostomy (a surgical procedure to create an opening through the neck into the trachea), candida albicans (caused by an over growth of yeast called candida) infection of the lungs, pseudomonas (a common bacterium that can cause disease) urinary tract infection, hypercoaguable state (a condition in which there is a tendency toward blood clotting) secondary to new finding of lupus anticoagulant antibody, multiple deep venous thrombosis, heparin resistance, hyper and hyponatremia (low and elevated sodium level in the blood), postoperative cardiac insufficiency(insufficiency occurs when the heart muscle doesn’t pump blood as well as it should and the patient goes into congestive heart failure), atrial flutter (a common abnormal heart rhythm), hospital acquired pressure ulcers, malnutrition, dysphagia (difficulty swallowing), and physical deconditioning (a decline in function). Mr. Smith was transferred to a rehabilitation nursing facility on February 27, 2012. The rehabilitation stay was complicated by bleeding hemorrhoids and also by epilepsy secondary to his history of cerebral vascular accident (CVA). Mr. Smith’s tracheostomy was removed on March 5, 2012, and he was discharged to home on March 26, 2012. This Nurse Life Care Plan report will comment on Mr. Smith’s past surgeries and procedures, current medical status, and future medical treatment 7 Timothy Smith recommendations with associated costs as related to the incident which occurred on October 18, 2011. Recommendations included in this Nurse Life Care Plan report are based on a reasonable degree of certainty in an effort to manage symptoms, reduce complications and secondary diagnosis, maintain functioning, and optimize independence throughout Mr. Smith’s lifespan. The recommendations are gathered from information provided by medical records, as well as knowledge and experience of this Nurse Life Care Planner. The Nurse Life Care Plan report and tables were completed following a review of the provided medical records. This Nurse Life Care Plan report is being submitted with the understanding additional medical information may be received from the medical providers. The Nurse Life Care Plan recommendations are subject to change if additional medical information is received from the medical providers. Prior to court appearance, consideration will be given to any changes in Mr. Smith’s medical condition and this Nurse Life Care Plan will be revised as needed. Please refer to the following Medical Timeline on pages 9-25 for details sequenced by date of Mr. Smith’s medical conditions, treatment, and outcomes. Medical Timeline: Date Facility/Physician May 24, 2011 Dr. Kenneth G. Zuber, Pediatric Cardiologist 8 Timothy Smith Summary Mr. Smith attended follow-up for his Marfan Syndrome and dilated cardiomyopathy with Dr. Zuber (Dr. Zuber had been treating Mr. Smith since childhood). Mr. Smith had presented with stable aortic sinus dimensions in the forty-two to forty-four (4244) millimeter range from 1994 to 2004, however, he experienced a gradual increase in his left ventricular diastolic dimensions from sixty-three (63) in June 2004 to sixtyfive (65) and seventy-four (74) in May 2011 (normal is forty-two to fifty-nine [42-59], sixty to sixty-three (60-63) is mildly dilated, sixty-four to sixty-eight (64-68) is moderately dilated and greater than sixtynine (69) is severely dilated). Dr. Zuber had prescribed atenolol and Lisinopril but Mr. Smith had not been taking the medications regularly. A nuclear stress test completed in 2006 showed an ejection fraction of fortyone percent (41%). Mr. Smith remained asymptomatic with preserved exercise capacity and no dizziness or palpitation. May 24, 2011 (cont’d) October 18, 2011 November 30, 2011 December 1, 2011 Dr. Kenneth G. Zuber, Pediatric Cardiologist Dr. Kenneth G. Zuber, Pediatric Cardiologist Dr. Susan Thomas, Cardiovascular Medicine 9 Timothy Smith Mr. Smith was instructed to avoid weight training, and dangerous activities where dizziness might cause injury. The incident inside deaerator storage tank occurred. Mr. Smith reported chronic diarrhea over the past year. He informed Dr. Zuber of the incident that occurred at work when steam entered the tank where he was working. Mr. Smith presented with cough, sweating, fatigue, epigastric pain and a ten (10) pound weight loss. He also complained of abdominal pain when walking. Mr. Smith was given antibiotics by his primary care physician. Dr. Zuber noted that Mr. Smith’s clinical cardiac examination was at baseline with no mitral valve prolapse (MVP), gallop or hepatic congestion, however Dr. Zuber noted lung crackles suggesting intercurrent infection (An infection that intervenes during the course of another disease with which it has no connection). Laboratory studies and echocardiogram did not reveal endocarditis or serious systemic infection. Mr. Smith’s aortic root size appeared to be larger by magnetic resonance imaging (MRI). Dr. Zuber felt that Mr. Smith’s clinical problem was dilated cardiomyopathy related to Marfan Syndrome. Dr. Zuber further noted that the chronic diarrhea could represent impaired cardiac output. Mr. Smith presented with an increased risk of sudden death based on the MRI and echocardiogram. Mr. Smith was referred to the heart failure center to assess the need for further therapy. Mr. Smith attended an initial evaluation with Dr. Susan Thomas for symptoms of congestive heart failure (CHF) and obstructive pulmonary disease (OPD). Mr. Smith reported resolution of previous symptoms of dyspnea (shortness of breath or breathlessness), and upper respiratory infection, but continued to experience mild fatigue. He was able to work and perform light yard work. December 1, 2011 (cont’d) Dr. Susan Thomas, Cardiovascular Medicine December 1, 2011 Dr. Paul Howard, Cardiologist December 5, 2011 Clinic Emergency Department December 7, 2011 – December 11, 2011 Clinic 10 Timothy Smith Dr. Thomas noted superficial phlebitis (inflammation of a vein) following the cardiac MRI. She advised Mr. Smith to use warm compresses to the right upper extremity. Dr. Thomas recommended increasing the Lisinopril to 10 mg daily, continue the atenolol and add carvedilol 125 mg twice a day. Dr. Thomas did not feel that Mr. Smith required anticoagulants. Mr. Smith was referred to Dr. Paul Howard for a Holter monitor (a continuous tape recording of a patient’s EKG for twenty-four (24) hours) for evaluation of premature ventricular contractions (PVCs). Dr. Howard noted that Mr. Smith was not compliant with his medication regimen and was only occasionally taking the medications on a weekly basis. Dr. Howard prescribed Coreg and ACE-I titration as tolerated and recommended a repeat echocardiogram in three (3) months. If Mr. Smith continued to have depressed left ventricular function, he would be a candidate for an implantable cardioverter defibrillator (ICD). Mr. Smith presented to the Clinic Emergency Department for complaints of intermittent epigastric abdominal pain with watery dark colored stool over the past ten (10) days. Mr. Smith rated the pain at six out of ten (6/10) and often experienced shortness of breath with the pain. Mr. Smith underwent testing and was administered Zofran with relief of the symptoms. He was discharged home. Mr. Smith presented to the Clinic Emergency Department with expressive aphasia and a facial droop that began the evening before. Mr. Smith noted that at 8:40 pm, he was unable to speak, write or hold a pen. He was transported by ambulance to Ashtabula Emergency Department where he underwent computerized axial tomography (CAT scan) of his head. The scan was negative for bleeding and received a tissue plasminogen activator (TPA). Mr. Smith was transported to the Clinic for further management. December 7, 2011 – December 11, 2011 (cont’d) Clinic Mr. Smith showed improvement later that day. Mr. Smith was diagnosed with acute ischemic stroke syndrome, and non-flowing limiting dissection of the left common carotid artery, (this condition is not unusual with Marfan Syndrome) and possible intra-arterial emboli. Mr. Smith underwent testing for epigastric pain and diarrhea which indicated gastritis so a proton pump inhibitor (Protonix) was prescribed. Mr. Smith was instructed to follow-up with his primary care physician, cardiologist and stroke neurologist after discharge. He was prescribed daily aspirin and monitoring of his INR (international normalized ratio measures coagulation) level. December 12, 2011 – December 14, 2011 Clinic Dr. Randy Young, Cardiologist Mr. Smith was evaluated by Dr. Randy Young for follow-up of his heart failure. Mr. Smith was discharged from Clinic on December 11, 2012 and that evening developed shortness of breath (SOB) at rest, edema and pallor. He was instructed to take Lasix 60 mg. After taking the Lasix, he slept with no further episodes of shortness of breath. Mr. Smith informed Dr. Young that his breathing and energy level were unchanged. He was able to climb one flight of stairs without problem. Dr. Young noted mild edema of Mr. Smith’s lower extremities. Mr. Smith was readmitted on December 12, 2012 to Clinic’s heart failure unit for intravenous fluids and medication adjustment. An echocardiogram completed on December 12, 2011 showed a moderately dilated left ventricle with decreased systolic function and ejection fraction of fifteen plus or minus five percent (15 + 5%). The scan also showed a dilated right ventricle with moderate to severe decreased systolic function, moderately severe mitral valve regurgitation caused by left ventricular enlargement. Chest x-ray showed small bilateral pleural effusions and patchy retrocardiac opacity. 11 Timothy Smith December 12, 2011 – December 14, 2011 (cont’d) Clinic Dr. Randy Young, Cardiologist December 22, 2011 Dr. Randy Young, Cardiologist Mr. Smith was discharged on December 14, 2012.He was instructed to incorporate a low salt, low fat diet, daily weights, daily aspirin, Lisinopril 5 mg daily, Lasix 20 mg as needed, and Coumadin 5 mg daily. Figure 2 – Heart 12 Timothy Smith Mr. Smith returned for follow-up with Dr. Randy Young for evaluation of ongoing heart failure and reported intermittent palpitations. Dr. Young noted that Mr. Smith had not been compliant with his restrictions, and was eating foods with high sodium content and ignored fluid restrictions. Dr. Young recommended that Mr. Smith increase his dosage of Carvedilol to 6.25 mg twice a day, start epierenone 25 mg daily, continue Lisinopril 5 mg daily, recheck blood levels on January 3, 2012, schedule a metabolic stress test and repeat his echocardiogram in one (1) month. He also recommended dietary and nutritional counseling, a continuation of Coumadin and aspirin and a follow-up INR level. Mr. Smith was instructed on dietary and medication compliance, specifically salt restriction, monitoring of daily weights and blood pressure, and exercise through walking. Dr. Young noted that Mr. Smith presented with advanced cardiomyopathy, and advised that he not work as a laborer. Dr. Young felt that Mr. Smith would need an implantable cardioverter defibrillator (ICD) for prevention and was not optimistic that Mr. Smith would successfully reverse with medications. December 22, 2011 (cont’d) Dr. Randy Young, Cardiologist December 22, 2011 Katherine M. Patton, Registered Dietician January 3, 2012 Dr. Thomas E. Lai, Interventional Cardiology Specialist3 January 4, 2012 Jamie Cummings, Registered Nurse January 9, 2012 Dr. Randy Young, Cardiologist Figure 3 -Implantable Cardiac Defibrillator 3 Mr. Smith attended a dietary and nutritional consultation with Katherine M. Patton for instruction on a cardiac diet. He was instructed to limit sodium intake to 15002000 mg per day, with 600 mg with meals, and 200 mg with snacks, eat breakfast of cereal with less than 140 mg per serving of sodium, choose whole foods for snacks such as fruit or unsalted nuts, research nutrition facts in restaurants to make low sodium choices, and purchase more meals at grocery store when traveling instead of eating out. Mr. Smith reported mild loss of appetite and nausea for several days duration to Dr. Thomas E. Lai. Mr. Smith had undergone a right upper quadrant ultrasound the day before that was normal. Dr. Lai instructed him to discontinue the Inspra and aspirin because of rising creatine and potassium levels. Ms. Jamie Cummings contacted Mr. Smith to inform him of the appointment on February 1, 2012 for placement of his ICD. Mr. Smith informed Ms. Thourot that he and Dr. Young decided to wait on placement of the ICD. Mr. Smith informed Dr. Randy Young of increased difficulty with breathing and lower energy along with abdominal pain and nausea when he walked after eating. Mr. Smith complained of a poor appetite and the ability to only eat soft foods such as yogurt. An Interventional Cardiology Specialist deals specifically with the catheter based treatment of structural heart diseases, such as angioplasty and heart catheterization. 13 Timothy Smith January 9, 2012 (cont’d) Dr. Randy Young, Cardiologist Mr. Smith was diagnosed with stage C heart failure4. Dr. Young felt that the abdominal symptoms were related to Mr. Smith’s underlying duodenitis and erosive gastritis. Mr. Smith’s blood pressure was low at sixtyseven millimeters of mercury (67 mm Hg), and he was admitted to the hospital overnight for observation. January 9, 2012 – February 27, 2012 Clinic Mr. Smith was hospitalized for a low cardiac output state, weight loss, abdominal pain and right lower lobe pneumonia. Nipride, dobutamine, and azithromycin were started. On January 14, 2012, Mr. Smith experienced a cardiac arrest during the first Azithromycin infusion. He required CPR, Dopamine and Dobutamine. Following the arrest, Mr. Smith continued to deteriorate and eventually developed cardiogenic shock (a condition in which the heart can’t pump enough blood to meet the body’s needs). Mr. Smith underwent an emergency implantation of a left ventricular assist device (LVAD) on January 30, 2012 with Dr. Edward Soltesz. Mr. Smith was diagnosed with a thromboembolism (formation in a blood vessel of a clot or thrombus that breaks loose, is carried by the blood stream and plugs another vessel) An eight (8) centimeter thrombus was removed at the time of the LVAD implantation. Mr. Smith’s hospital course was further complicated by respiratory failure leading to a tracheostomy (a surgical procedure to create an opening through the neck into the trachea). Heart failure is rated by stages A through D. Stage C includes structural heart disease with prior or current symptoms of heart failure. Patients with Stage C heart disease experience shortness of breath, fatigue and reduced exercise tolerance. Goals for treatment include mitigation of hypertension and lipid disorders, smoking cessation, and regular exercise, reduction of alcohol intake and illicit drug use, and control of metabolic syndrome. Additional goals include dietary salt restriction. Patients in this stage may undergo biventricular pacing and implantable defibrillators. 4 14 Timothy Smith January 9, 2012 – February 27, 2012 (cont’d) Clinic Figure 4 – LVAD5 He was also diagnosed with candida albicans infection of the lungs (caused by an over growth of yeast called candida), pseudomonas urinary tract infection (a common bacterium that can cause disease), hypercoaguable state secondary to new finding of lupus anticoagulant antibody (hypercoaguable means that there is a tendency toward blood clotting), multiple deep venous thrombosis, heparin resistance, hyponatremia and hypernatremia (low and elevated sodium level in the blood), postoperative cardiac insufficiency (Insufficiency occurs when the heart muscle doesn’t pump blood as well as it should and the patient goes into congestive heart failure), atrial flutter (a common abnormal heart rhythm), hospital acquired pressure ulcers, malnutrition, dysphagia (difficulty swallowing), and physical deconditioning (a decline in function). Mr. Smith was transferred to a rehabilitation nursing home on February 27, 2012. 5 A ventricular assist device (VAD) is a mechanical pump that's used to support heart function and blood flow in people who have weakened hearts. The device takes blood from a lower chamber of the heart and helps pump it to the body and vital organs, just as a healthy heart would. 15 Timothy Smith February 28, 2012 March 6, 2012 Rehabilitation Nursing Facility April 6, 2012 Dr. Kevin Brandon, Cardiovascular Medicine April 13, 2012 Kathy Houser, Certified Nurse Practitioner LVAD Clinic April 20, 2012 Susan Sunshine 16 Timothy Smith Mr. Smith’s rehabilitation stay was complicated by epilepsy secondary to his history of cerebral vascular accident (stroke) requiring Keppra for one (1) year to prevent seizures. Mr. Smith underwent tracheostomy decannulation (removal of tracheostomy tube) on March 5, 2012. A Corpak (feeding tube) remained in place, and he underwent a barium swallow test (a radiologic examination of swallowing function that uses a special video-type x-ray where the patient is observed swallowing various types of substances). Mr. Smith underwent implantation of an ICD (see figure 3 in the 12/22/2011 entry). He was discharged from the nursing facility on March 26, 2013. Mr. Smith presented for follow-up with Dr. Brandon for follow-up of his left ventricular assist device (LVAD). He voiced no complaints and remained active. Dr. Brandon felt that Mr. Smith was doing well; however, his blood pressure was eighty (80) and not within the preferred limits. Dr. Brandon increased the Coreg to 6.25 mg twice a day (used for treatment of heart failure and for stabilization of blood pressure). Dr. Brandon instructed Mr. Smith to continue the Keppra for one (1) year to prevent seizures (epilepsia partialis). Mr. Smith presented for an initial evaluation with Ms. Kathy Houser. Mr. Smith noted fatigue with walking but continued to increase the amount he walked daily. Mrs. Young was performing daily dressing changes of his LVAD without problem. Mr. Smith remained on aspirin and Coumadin for treatment of a prior thrombus. He demonstrated pressure ulcers on the right foot and fifth toe. Mr. Smith had experienced swallowing difficulty at the time of his stroke and underwent a repeat modified barium swallow with Ms. Susan Sunshine. April 20, 2012 (cont’d) Susan Sunshine Ms. Sunshine assessed Mr. Smith’s oropharyngeal swallow function and risk of aspiration. Mr. Smith had a history of oropharyngeal dysphagia, however, at this time he denied swallowing problems and tolerated a regular diet without difficulty. The study demonstrated moderate pharyngeal dysphagia with pharyngeal residue and incomplete airway protection. Mr. Smith benefited from tucking his chin during swallowing to reduce the depth and frequency of laryngeal penetration with thin liquids. Figure 5 - Chin Tuck April 20, 2012 Dr. Paul Howard, Cardiologist May 9, 2012 Dr. Brandon, Cardiovascular Medicine 17 Timothy Smith Mr. Smith presented for follow-up with Dr. Paul Howard for evaluation of his LVAD. Mr. Smith had been attending follow-up every two to four (2-4) weeks and was not enrolled in remote monitoring. He was instructed to return to the clinic in six (6) months for follow-up. Mr. Smith attended follow-up with Dr. Brandon for evaluation. Mr. Smith reported an episode of lightheadedness while out over the weekend. Dr. Brandon felt that the episode was due to dehydration and he increased the dose of Coreg to 25 mg twice a day. Mr. Smith was instructed to return in one (1) month for a heart catheterization to assess hemodynamics, and a repeat computerized axial tomography (CAT) scan for updated measurements of his aorta. May 9, 2012 (cont’d) June 1, 2012 June 28, 2012 June 28, 2012 June 28, 2012 June 28, 2012 Dr. Brandon, Cardiovascular Medicine Dr. Brandon felt that at the time of his transplant, Mr. Smith’s aorta would require replacement due to the effects of his Marfan Syndrome. Dr. Carl Jones, Mr. Smith presented for a heart Cardiologist catheterization with Dr. Carl Jones (No report was available for review). Clinic Mr. Smith’s CAT scan of the chest was completed on June 28, 2012 and revealed a dilated aortic root with complete effacement of the sinotubular junction, consistent with a history of Marfan Syndrome. The CAT scan also showed a mildly and diffusely ectatic (dilated) abdominal aorta, and severe biventricular and moderate biatrial enlargement. Dr. Jeff Wilds, Mr. Smith visited Dr. Jeff Wilds for follow-up Epileptologist of his seizures. Mr. Smith’s symptoms of facial twitches and right hand tremors had not returned. Dr. Wilds recommended continuing the same medication, Levetiracetam for one (1) year. Dr. Norman also recommended gradually discontinuing the Neurontin for lower extremity neuropathy. Mr. Smith was instructed to return in one (1) year. Kathy Houser, Mr. Young presented for routine follow-up Certified Nurse of his LVAD with Kathy Houser with Practitioner LVAD complaints of fatigue. Mr. Smith reported Clinic poor sleep and anxiety thinking about transplant testing. Mr. Smith was able to work in the yard and spend time with his family. Dr. Jeff Wilds, Mr. Smith attended a consultation with Dr. Neurologist Jeff Wilds for evaluation of seizures. Mr. Smith had not experienced seizures since his hospitalization in December 2011. Dr. Wilds recommended continuing treatment with Levetiracetam for one (1) year then reevaluate if necessary. Mr. Smith’s lower extremity neuropathy had resolved and Dr. Wilds recommended tapering the gabapentin to 300 mg twice daily for two (2) weeks, then daily for two (2) weeks. If the foot pain did not recur, Mr. Smith could discontinue the medication. 18 Timothy Smith July 5, 2012 Bradley Little, Registered Nurse Dermatology Clinic July 5, 2012 Patty Colon, Physician Assistant Center for Osteoporosis and Metabolic Bone Disease July 6, 2012 Mary Lamb Loannou, Certified Nurse Practitioner Infectious Disease July 24, 2012 Cathy Snow, Registered Nurse August 1, 2012 Kathy Houser, Certified Nurse Practitioner LVAD Clinic August 1, 2012 Dr. Brandon, Cardiovascular Medicine 19 Timothy Smith Mr. Smith presented to Bradley Little for pretransplant evaluation. Mr. Smith’s skin was clear of chronic disease and skin cancer. He was instructed to return in one (1) year and as needed following transplantation. Mr. Smith underwent a bone density scan to monitor for osteoporosis per transplant protocol. He had not been exercising and had experienced three (3) falls over the past year. Mr. Smith was taking vitamin D and a multivitamin supplement. Mr. Smith’s scan was within the expected range for his age. Ms. Paozos recommended calcium supplementation and annual scans if Mr. Smith was prescribed corticosteroids. Mr. Smith attended a pre-transplant evaluation with Mary Lamb Loannou. Mr. Smith received a twinrix vaccine (a vaccine that helps prevent hepatitis A and B) series with a second dose to be given in one (1) month, and a third dose in January 2013. He underwent a battery of tests including testing for fungus and Staph aureus. Mr. Smith was not approved for a heart transplant when his case was presented at the Heart Transplant Selection meeting. The team felt that Mr. Smith was doing well on the LVAD and medical therapy and would be reassessed at a later date. He was diagnosed with irremediable (incurable) terminal cardiac disease with severely compromised survival of less than seventy (70) years. Mr. Smith returned for routine follow-up of his LVAD with Kathy Houser. He denied problems, had been able to help with a home remodeling project, and was weaning off the gabapentin. Mr. Smith returned for follow-up with Dr. Brandon, and reported no problems with the LVAD. Mr. Smith’s blood pressure was stable and he demonstrated adequate platelet inhibition on Coumadin. Mr. Smith asked Dr. Brandon to present his case to the transplant committee in six (6) months as he wanted to travel and return to work as a welder. August 2, 2012 September 7, 2012 October 3, 2012 Kathy Houser, Certified Nurse Practitioner LVAD Clinic Kathy Houser, Certified Nurse Practitioner LVAD Clinic Beckey Long Hopper, Registered Nurse LVAD Clinic October 23, Kathy Houser, 2012 Certified Nurse Practitioner LVAD Clinic December 27, 2012 Kathy Houser, Certified Nurse Practitioner LVAD Clinic January 18, Dr. Robert 2013 Sampson, Cardiologist 20 Timothy Smith Mr. Young presented for routine follow-up with Kathy Houser. He reported that he was doing well and was helping with a home remodeling project. Mr. Young presented for routine follow-up with Kathy Houser and reported that he was doing well, but reported one (1) or two (2) episodes of lightheadedness with standing. Beckey Long Hopper received a phone call from Mr. Smith’s wife stating that he had a cough and fever and was lethargic. Ms. Young was instructed to contact his primary care physician. Mr. Smith contacted his family physician who prescribed antibiotics. Mr. Smith presented routine follow-up with Ms. Kathy Houser. Mr. Smith reported an episode of fever and chills for which he was evaluated by his local primary care physician (PCP). The PCP prescribed antibiotics and symptoms resolved. Mr. Smith was not experiencing any difficulties with swallowing or the LVAD. Mr. Smith’s INR measured 1.5 so he was instructed to increase the Coumadin to 9.5 mg daily. Mr. Smith presented for routine follow-up at the VAD clinic with Ms. Kathy Houser. Mr. Smith reported infrequent lightheadedness when standing that resolved quickly. He remained active around the house and reported a good appetite. Ms. Williams decreased Mr. Smith’s Lisinopril from 10 mg to 5 mg daily and instructed him to continue the warfarin at 8.5 mg. Mr. Smith attended an independent medical evaluation (IME) with Dr. Robert Sampson. The purpose of the evaluation was to determine if Mr. Smith’s work related injury caused or worsened his cardiomyopathy and other related heart conditions. Dr. Sampson opined that Mr. Smith had severe dilated and congestive cardiomyopathy related to his Marfan Syndrome that worsened throughout his life and was not related to the incident of October 18, 2011. January 18, Dr. Robert 2013 Sampson, (cont’d) Cardiologist January 29, 2013 Clinic Dr. Sampson also felt that the stress suffered during the incident was not cause for the worsening of the underlying cardiomyopathy that had existed for many years. Dr. Sampson further believed that the deep venous thrombosis (DVT) and pulmonary complications were not related to the incident. An electrocardiogram was performed on Mr. Smith at the Clinic that showed an ejection fraction of 20%, severely dilated left and right ventricles, and decreased systolic function. The pulmonary veins showed blunted systolic flow, and the right atrial cavity was mildly dilated. The scan revealed aortic, tricuspid and mitral valve regurgitation. The aortic root remained dilated. Figure 6 – aorta January 29, 2013 Dr. Brandon, Cardiovascular Medicine 21 Timothy Smith Mr. Smith returned for evaluation with Dr. Brandon. Mr. Smith’s blood pressure was elevated so Dr. Brandon increased the Lisinopril to 10 mg twice a day. He remained on full dose Coreg and aspirin. Mr. Smith was instructed to return to the clinic in eight (8) weeks. March 8, 2013 Dr. Brandon, Cardiovascular Medicine Mr. Smith presented for follow-up with Dr. Brandon for evaluation of the LVAD. Mr. Smith reported feeling well without complaints. He remained active and exhibited no difficulties. He had no signs of paroxysmal nocturnal dyspnea, orthopnea, palpitations, presyncope, syncope, and chest pain, dyspnea on exertion or ankle edema. Dr. Brandon noted that the last assessment of Mr. Smith’s aorta was December 2012 where the maximal diameter measured 4.4 cm at the sinus of Valsalva (a common cardiac anomaly that can be congenital or acquired). Dr. Young planned to reimage the aorta in December 2013. April 11, 2013 Dr. Brandon, Cardiovascular Medicine June 5, 2013 Kathy Houser, Certified Nurse Practitioner September 3, 2013 Dr. David Castro, Occupational Health Mr. Smith returned for follow-up with Dr. Brandon for evaluation of the LVAD. Mr. Smith reported feeling well without complaints and an “excellent quality of life”. He remained active with few limitations and exhibited no difficulties. He had no signs of paroxysmal nocturnal dyspnea, orthopnea, palpitations, presyncope, syncope, and chest pain, dyspnea on exertion or ankle edema. Mr. Smith reported an excellent quality of life. Dr. Brandon planned to contact the preheart transplant team regarding outstanding consultations or testing needed to proceed with registration on the transplant list. Mr. Smith continued to take anticoagulant therapy and medication (full dose aspirin) and undergo regular PTL inhibition studies (posterior tricuspid leaflet). Mr. Smith presented for routine follow-up at the VAD clinic with Ms. Kathy Houser and reported new onset of shortness of breath with exertion. Mr. Smith was evaluated by Dr. David Castro for determination of maximum medical improvement (MMI). Dr. Castro felt that Mr. Young was relatively stable on the left ventricular assist device, and medications. Dr. Castro determined that without a heart transplant, Mr. Smith had reached MMI and was not expected to further improve. 22 Timothy Smith September 3, 2013 (cont’d) January 15, 2014 Dr. David Castro, Occupational Health Dr. Bruce D. Long, Center for Osteoporosis and Metabolic Bone Disease March 17, 2014 Dr. Brandon, Cardiovascular Medicine March 17, 2014 Dr. Thomas Caper, Dermatologist May 28, 2014 Dr. Brandon, Cardiovascular Medicine 6 Dr. Castro recommended proceeding with the heart transplantation. Mr. Smith presented for a pre-heart transplant metabolic bone disease follow-up with Dr. Bruce D. Long. The scan demonstrated normal bone mass with a mildly elevated PTH (parathyroid which regulates calcium-phosphate metabolism and increases in response to low serum calcium levels and can lead to bone resorption) due to past low calcium and vitamin D intake. Dr. Long instructed Mr. Smith to increase his calcium intake and repeat the PTH level in two (2) months. Mr. Smith would undergo a repeat bone scan after transplantation or in two (2) years. Mr. Smith returned for follow-up with Dr. Brandon for evaluation of the LVAD. Mr. Smith denied complaints and remained active with an “excellent quality of life”. Mr. Smith was listed on the United Network for Organ Sharing (UNOS) as a status 1B6 on the heart transplant waiting list. Dr. Brandon increased the dose of Coreg to 37.5 mg to decrease the stress on Mr. Smith’s aorta as it related to the Marfan Syndrome. Mr. Smith presented to the Clinic Dermatology Clinic for a pre-transplant evaluation by Dr. Thomas Caper. Mr. Smith was diagnosed with folliculitis (infection in the hair follicles) of his back, and instructed to use BPO wash (benzoyl peroxide) 4% OTC each morning. Mr. Smith was instructed to return to the clinic following transplant unless problems occurred. Mr. Smith returned for follow-up with Dr. Brandon for evaluation of the LVAD. Mr. Smith denied complaints and remained active with an “excellent quality of life”. The United Network for Organ Sharing (UNOS) manages the heart transplant waiting list. In order to determine the order for receipt of a donor heart, individuals are classified by degrees of severity for a donor heart, blood type, body weight, and geographic location. Individuals classified as a Status 1A have the highest priority on the heart transplant waiting list. Individuals classified as a Status 1B have the second highest priority on the wait list. 23 Timothy Smith May 28, 2014 (cont’d) Dr. Brandon, Cardiovascular Medicine June 6, 2014 Mona Hot, Physician Assistant Clinic Neurological Institute Epilepsy Center July 10, 2014 Kathy Houser, Certified Nurse Practitioner July 10, 2014 Dr. Randy Young, Cardiologist Records Reviewed • Randy Young, MD • Kenneth Zuber, MD • David Brandon, MD • Susan Thomas MD • Paul Howard MD • Clinic • Dr. Randy Young MD • • Jamie Cummings Kevin Brandon MD • Kathy Houser CNP 24 Timothy Smith Dr. Brandon discussed the possibility of invoking 30-day 1A status to change his risk stratification, however, Mr. Smith preferred to wait. Mr. Smith presented to Clinic Neurological Institute Epilepsy Center for medical management of epilepsia partialis. Mr. Smith was taking Keppra 500 mg twice a day without side effects. His last seizure occurred in February 2012. Ms. Hot recommended continuing the Keppra until he receives his transplant and instructed Mr. Smith to return for follow-up in six (6) months. Mr. Smith presented for routine follow-up at the VAD clinic with Ms. Kathy Houser. Mr. Smith informed Ms. Williams that he was feeling well. Mr. Smith attended follow-up with Dr. Randy Young. Dr. Young diagnosed Mr. Smith with advanced heart failure and recommended upgrading Mr. Smith’s status to 1A for transplantation. Mr. Smith was instructed in smoking and alcohol abstinence, dietary and medication compliance, particularly salt intake, monitoring of daily weights and blood pressures and an exercise regimen of walking. 1/22/15 5/20/10, 5/24/11, 11/30/11 2/10/15 12/1/11 12/1/11, 4/20/12 12/5/11, 12/7/11-12/11/11, 1/9/122/27/12, 6/28/12, 1/29/13 12/12/11-12/14/11, 12/22/11 1/9/12, 7/10/14 1/4/12 5/6/12, 5/9/12, 8/1/12, 1/29/13, 3/8/13, 4/11/13, 3/17/14, 3/17/14, 5/28/14 4/13/12, 6/28/12, 8/1/12, 8/2/12 10/23/12, 6/5/13, 7/10/14 • • • • • • • • • • • • Susan Sunshine Paul Howard MD Jeff Wilds MD Bradley Little Patty Colon Cathy Snow Beckey Long Hopper Oliver W. Caminos MD Robert Sampson MD Bruce D. Long MD Thomas Caper MD Mona Hot PA 4/20/12 6/1/12 6/28/12, 6/28/12 7/5/12 7/5/12 7/24/12 10/3/12 1/18/13 9/3/13 1/15/14 3/17/14 6/6/14 Past Medical History Marfan syndrome Rhinoplasty Hiatal hernia Erosive duodenitis Smoking history Surgeries Related to Incident Date Procedure 1/30/2012 Median Sternotomy, open heart surgery, removal of right atrial thrombus, implantation of HeartMate II left ventricular assist device (LVAD), and preperitoneal pump pocket dissection 2/04/2012 IVC Filter Placement 2/13/2012 Open tracheostomy 2/15/2012 Redo Median sternotomy, open-heart surgery, right atrial thrombectomy and bilateral pulmonary embolectomy March 5, 2012 Tracheostomy decannulation March 16, ICD placement 2012 25 Timothy Smith Physician Dr. Thomas Hardy Dr. Daniel Roadway Dr. Edward Sun Dr. David Jones Current Medications Coreg (Carvedilol) 25 mg 2 tablets daily Digoxin 250 mcg 1 tablet daily Warfarin (Coumadin) 5 mg 1 tablet per day (dose dependent on INR results) Warfarin (Coumadin) 1 mg 1 tablet per day (dose dependent on INR results) Ferrous Sulfate 325 mg 2 tablets daily Pantoprazole 20 mg 1 tablet daily Clindamycin 1% gel topically as needed Spironolactone 20 mg 1 tablet daily Lisinopril 30 mg 1 tablet daily Multivitamin 1 tablet daily Aspirin 325 mg 1 tablet daily Vitamin D3 1,000 IU 1 tablet twice daily Calcium Citrate/Vitamin D 315/200 IU 1 tablet twice daily The following information was ascertained from review of the medical records, Ms. Cummings’ life care plan, and the depositions of Mr. and Ms. Smith. Although requested, this Nurse Life Care Planner did not have the opportunity to assess or speak to Mr. Smith or his physicians. Current Symptoms/Limitations Mr. Smith underwent placement of a left ventricular assist device (LVAD) on January 20, 2012. He is currently evaluated every two (2) months by the LVAD physicians at the Clinic. He and his wife were trained on the care and safety of the LVAD regarding daily dressing changes, battery changes, and night time power source (see page 29 for more information on the LVAD). Mr. Smith was placed on the heart transplant list in October 2013 and is status 1B. Mr. Smith’s wife and father are very involved in his care. According to Ms. Boeing’s life care plan, Mr. Smith is restricted from lifting over twenty (20) pounds and experiences shortness of breath carrying items weighing less than twenty (20) pounds. He becomes fatigued and requires rest after standing longer than fifteen (15) minutes, and feels short of breath when walking short distances and climbing stairs. Mr. Smith is independent in self-care; however, his wife performs the daily dressing changes to his LVAD site. He is able to perform light housekeeping chores but is not allowed to operate a vacuum cleaner due to the LVAD and risk of shock. Mr. Smith completes lawn work with the use of a riding lawn mower but was advised to avoid excessive exposure to the sun. 26 Timothy Smith Psychosocial Information Mr. Smith , a thirty-nine (39) year-old married man lives with his wife of eleven (11) years, Cathleen, and his two daughters, Emily, nine (9), and Jocelyn, seven (7) in a two-story home. Mr. Smith stands 6’ 11” tall and weighs approximately 190 pounds. His mother passed away from complications of Marfan syndrome when he was a child, his daughters and two (2) brothers, David and Raymond, also have the condition. Both brothers have undergone aortic root replacement (the first segment that exits the heart) and Raymond had a Type B dissection (an arterial tear). Mrs. Young has become the family supporter since Mr. Smith is no longer working. Mrs. Young must also perform outside chores, such as mowing the lawn. If she did not do the work, they would have to hire it done. The home has an outdoor wood burning stove for which Mrs. Young splits wood in order to have heat. They do not have a furnace in the home. Prior to the incident Mr. Smith enjoyed woodworking, hunting, bowling, hiking, fishing and swimming. The Young family has two (2) horses on their property for the girls. Mr. Smith helps to care for the girls but is unable to care for the horses. Educational/Vocational Information Mr. Smith graduated from high school and attended Holly Carsen earning an associate degree in 1996 in electrical maintenance. Mr. Smith earned a welding certification and is currently enrolled in an apprenticeship program to become a Journeyman7. Mr. Smith began his apprenticeship in 2012 and still plans to complete the process in January 2016. Mr. Smith is a member of Boilermaker’s. Just prior to his employment at Sun Petroleum, he worked at Flo’s, and construction companies, as a welder. He worked at Doors from 1998 to 2000, as an electrical maintenance worker, and from 2000 to 2007 he worked at Corporation as a welder. Mr. Smith returned to work at Doors in 2007 through 2008. In 2008, he joined the Union, and worked at a number of companies, including Earth Ware. Mr. Smith began working periodically at Sun Petroleum between 2008 and 2009, and again in 2010 and 2011. Mr. Smith was laid off a week after the incident and has not returned to work. Life Expectancy A rated age was obtained from KP Underwriting, LLC yielding a median rated age of seventy-eight (78) years without a heart transplant and a life expectancy of 10.3 (rounded to 10) years. 7 A journeyman is an individual who has completed an apprenticeship and is fully educated in a trade or craft, but not yet a master. To become a master a journeyman has to submit a master work piece to a guild for evaluation and be admitted to the guild as a master. Sometimes a journeyman is required to accomplish a three-year working trip which may be called the journeyman years. 27 Timothy Smith A rated age was obtained from KP Underwriting, LLC yielding a median rated age of sixty-four (64) years with a heart transplant and a life expectancy of 19.9 (rounded to 20) years. Nursing Diagnosis • Risk for imbalanced fluid volume (Domain 2. Nutrition, Class 5. Hydration) –Vulnerable to a decrease, increase, or rapid shift from one to the other of intravascular, interstitial, and/or intracellular fluid, which may compromise health. This refers to body fluid loss, gain or both. • Impaired gas exchange (Domain 3. Elimination and Exchange, Class 4. Respiratory function) – Excess or deficit in oxygenation and/or carbon dioxide elimination at the alveolar-capillary membrane. • Disturbed sleep pattern (Domain 4. Activity/Rest. Class 1. Sleep/rest) time-limited interruptions of sleep amount and quality due to external factors. • Fatigue (Domain 4. Activity/Rest. Class 3. Energy Balance) – An overwhelming sustained sense of exhaustion and decreased capacity for physical and mental work at the usual level. • Activity intolerance (Domain 4. Activity/Rest, Class 4. Cardiovascular/Pulmonary Responses) – Insufficient physiological or psychological energy to endure or complete required or desired daily activities. • Decreased cardiac output (Domain 4. Activity/Rest, Class 4. Cardiovascular/Pulmonary Responses) – Inadequate blood pumped by the heart to meet the metabolic demands of the body. • Risk for impaired cardiovascular function (Domain 4. Activity/Rest, Class 4. Cardiovascular/Pulmonary Responses) – Vulnerable to internal or external causes that can damage one or more vital organs and the circulatory system itself. • Risk for decreased cardiac tissue perfusion (Domain 4. Activity/Rest, Class 4. Cardiovascular/Pulmonary Responses) – Vulnerable to a decrease in cardiac (coronary) circulation, which may compromise health. • Risk for ineffective peripheral tissue perfusion ((Domain 4. Activity/Rest, Class 4. Cardiovascular/Pulmonary Responses) – Decrease in blood circulation to the periphery that may compromise health. • Death anxiety (Domain 9. Coping/Stress Tolerance, Class 2. Coping Responses) – Vague, uneasy feeling of discomfort or dread generated by perceptions of a real or imagined threat to one’s existence. Summary Mr. Timothy Smith has a pre-existing history of Marfan syndrome, a genetic disorder that affects the body’s connective tissue. The connective tissue provides strength, support, and elasticity to tendons, cartilage, heart valves, and other vital 28 Timothy Smith parts of the body. Connective tissue is made up of proteins. The protein that plays a role in Marfan syndrome is called fibrillin-1. Marfan syndrome is caused by a defect (or mutation) in the gene that tells the body how to make fibrillin-1. This mutation results in an increase in a protein called transforming growth factor beta, or TGF-β. The increase in TGF-β causes problems in connective tissues throughout the body, which in turn creates the features and medical problems associated with Marfan syndrome. Among these medical problems is aortic enlargement which can lead to dissection or rupture of the inner layers of the aorta. Aortic dissection can be deadly and surgery is required to replace the affected part of the aorta. Physical characteristics of a person with Marfan syndrome may include: • Long arms, legs and fingers • Tall and thin body type • Curved spine • Chest sinks in or out • Flexible joints • Flat feet • Crowded teeth • Stretch marks on the skin not related to weight gain or loss. A person with Marfan syndrome may also have a leaky aortic or mitral valve (the valve that controls the flow of blood between the two left chambers of the heart). This problem can damage the left ventricle (the lower chamber of the heart that is the main pumping chamber) or cause heart failure. Mr. Smith has suffered heart failure and now requires a heart transplant. Potential Complications Left Ventricular Assist Device The left ventricular assist device (LVAD) is used in patients with heart failure as bridge therapy when the person is waiting for a heart transplant, destination therapy for someone who is not going to have a transplant, or for temporary measure for some reversible issue such as endocarditis. The device includes the pump, external cable, external controller, and batteries. This device is necessary because the left ventricle is not pumping adequately. Blood flows through the device into the left ventricle of the heart and is sent as a continuous flow into the right side of the heart, then out from the aorta to the body. Possible complications of the device include: drive line infection or sepsis, bleeding (cerebral or gastrointestinal), pump thrombosis (blood clot), pulmonary emboli, left ventricular suction event (pump pressure too high and collapses the left ventricle), aortic insufficiency (the blood flows down the aorta not out to the body), and problems with the right side of the heart such as ventricular fibrillation, or myocardial infarction (heart attack). 29 Timothy Smith The patient with a LVAD will not have a pulse. The hum of the pump can be heard to determine if the pump is working. The patient will not have a blood pressure but will have a mean arterial pressure when a blood pressure cuff is applied. Cardio pulmonary resuscitation should never be performed due to possible damage to the pump at the insertion site to the heart resulting in bleeding. Heart Transplant Wait List Heart Transplant is a lifesaving surgical procedure to replace a person’s diseased heart with a healthy heart from a deceased person (donor). Heart transplantation is considered when there are no other medical or surgical options available to the patient. Ninety percent of heart transplantations are done on persons who have end-stage heart failure. End-stage means that the condition has become so severe that all treatments other than heart transplant have failed. Donor hearts are in short supply, so individuals who need a heart transplant go through a careful selection process at a heart transplant center. Persons who are eligible for a heart transplant are placed on a waiting list. The United Network for Organ Sharing (UNOS) manages the heart transplant waiting list. In order to determine priority for receipt of a donor heart, the UNOS eventually ranks potential recipients. Factors affecting ranking may include tissue match, blood type, length of time on the waiting list, immune status and the distance between the potential recipient and the donor. (http://www.unos.org/donation/index.php?topic=fact_sheet) Individuals classified as Status 1A have the highest priority on the heart transplant waiting list. Status 1A are individuals who must stay in the hospital as in-patients and require high doses of intravenous drugs, OR require a VAD 30 Timothy Smith (ventricular assist device) for survival, OR are dependent on a ventilator OR have a life expectancy of a week or less without a transplant. Individuals classified as Status 1B are generally not required to stay in the hospital as in-patients. These individuals may also require a VAD (ventricular assist device) or low doses of continuous intravenous medications; however they are stable enough to remain at home with regular follow-up. Individuals classified as Status 1B have the second highest priority on the heart transplant, wait list. Requirements include a medical report of physical findings including a statement that the person has been placed on the heart transplant waiting list, chest x-ray, electrocardiogram, echocardiogram, cardiac catherization, and cardiac magnetic resonance imaging. There is currently a shortage of donor hearts available for the approximately 3,000 people on the waiting list for a heart transplant in the United States. Organs are matched for blood type and size of donor and recipient. A person can be taken off the waiting list if a serious medical event such as a stroke, infection, or kidney failure develops. Time spent on the heart transplant waiting list is a key factor in determining who receives a donor heart. Another factor that is taken into consideration is the urgency of need. Some individuals die while waiting for a suitable donor heart due to the current shortage of available donor hearts. Persons on the waiting list for a donor heart receive ongoing treatment for heart failure and other medical conditions such as irregular heartbeats (arrhythmias). These conditions can cause sudden cardiac death. Depending on the severity of their condition, some persons receive mechanical assist devices such as implantable cardioverter defibrillators (ICDs) to control the irregular heartbeat or a VAD to help the heart pump blood. These devices serve as bridges to the heart transplant surgery, to enable the patient to survive until the transplant can be performed. Heart transplant surgery carries many risks including rejection of the donor heart. Signs of rejection include shortness of breath, fever, fatigue, weight gain, and reduced amounts of urine resulting from kidney problems. Other complications include medication reaction, infection, and cancer. Cardiac Allograft Vasculopathy (CAV), a blood vessel disease, may develop. (The official website of the U.S. Social Security Administration, Program Operations Manual System (POMS) 7/29/2011). Clinic Heart Transplant Clinic The Clinic heart transplant clinic is registered with the Scientific Registry of Transplant Recipients. The center currently has one hundred (100) patients registered for transplant and the majority are in the 1B class. Clinic completed sixty-five (65) transplants in 2014. The length of wait time is dependent on the availability of a donor heart, the recipient’s age, blood type, and clinical status. According to the SRTR registry, one quarter (1/4) of the patients in the program 31 Timothy Smith received a transplant thirty-six (36) months after being placed on the waiting list. The other three quarters (3/4) were either still waiting or removed from the waiting list. At the Clinic, 66.7% of adult patients were alive one year after transplant. While it is not possible to predict with absolute certainty all future medical and technological advances or associated complications pertaining to Mr. Smith’s case, the Nurse Life Care Plan tables reflect what can be reasonably anticipated for Mr. Smith’s future medical and non-medical needs based on the information provided. The Nurse Life Care Plan is a projection of Mr. Smith’s current and future medical and non-medical needs. I reserve the right to amend the plan should Mr. Smith’s condition change or updated medical information becomes available. Thank you for the opportunity to assist with Mr. Smith’s case. Nancy Zangmeister RN, CRRN, CCM, CLCP, MSCC, CNLCP, CBIS Certified Nurse Life Care Planner 32 Timothy Smith Resources: Nolan, S., Ionescu, A. Accidental Cold Water Immersion: an Unusual Cause of Stress Cardiomyopathy in a Patient with Marfan syndrome and Aortic Exostent. Int. J. Cardiology 151 (3): e98-9, 2011 Schofield, P. M., & Corris, P. A. (Eds.). (1998). Management of heart and lung transplant patients. Travistock Square, London: BMJ Books, BMA House. Hricik, D. (Ed.). (2011). Primer on transplantation (3rd Ed.). West Sussex, UK: Wiley-Blackwell. Gray, H. (1977). Anatomy descriptive and surgical. New York, NY: Crown Publishers. Weed, R. O., & Berens, D. E. (2010). Life care planning and case management handbook (3rd Ed.). Boca Raton, FL: CRC Press. Wallach, J. (1996). Interpretation of diagnostic tests (6th Ed.). Boston, MA: Little, Brown and Company. Hunt, S. A., Abraham, W. T., Chin, M. H., & Feldman, A. M. (2005). Stages of heart failure (new classification). In The clinician's ultimate reference (pp. 154235). Retrieved from http://circ.ahajournals.org/cgi/content National Institutes of Health. (2011, November 9). What is an implantable cardioverter defibrillator [Fact sheet]. Retrieved January, 2015, from National Heart, Lung, and Blood Institute website: http://www.nhlbi.nih.gov/health/health-topics/topics/icd Mayo Clinic Staff. (2013, February 1). Heart disease and Marfan syndrome [Fact sheet]. Retrieved January, 2015, from WebMD website: http://www.webmd.com/heart-disease/guide/marfan-syndrome The Clinic Heart and Vascular Institute. (2015, January 28). Left ventricular assist device (LVAD) for heart failure [Fact sheet]. Retrieved February, 2015, from WebMD website: http://www.webmd.com/heart-disease-failure/left ventricular-assist-device Heart health center [Fact sheet]. (2014). Retrieved January, 2015, from www.WebMD.com website: http://www.webmd.com/heart/picute-of-the-heart JNLCP XV. Transplantation ….. Kathie Allison, PT, MS, CLCP (“Organ Transplant Overview”) http:/my.clevelandclinic.org/services/transplant-center/transplantprograms/heart-transplant-program 33 Timothy Smith http://hearttransplant.com/biopsies.html ww.goodrx.com Pinney, S. P. (2012). Timing isn't everything: donor heart allocation in the present LVAD era. Journal of the American College of Cardiology, 60(1), 52-53. Yamani, M. H., & Taylor, D. O. (n.d.). Heart Transplantation. Retrieved March 30, 2015, from http://www.clevelandclinicmeded.com Slaughter, M. S. (2011). UNOS status of heart transplant patients supported with a left ventricular assist device. Texas Heart Institute Journal, 38(5), 549-551. The official website of the U.S. Social Security Administration, Program Operations Manual System (POMS) 7/29/2011 http://www.unos.org/donation/index.php?topic=fact_sheet Herdman, T. H., & Kamitsuru, S. (Eds.). (2014). Nursing diagnoses definitions and classification (10th Ed.). Chicester, West Sussex: Wiley Blackwell. The following Nurse Life Care Plan Tables outline the recommendations for Mr. Smith’s current and future needs based on the review of the medical records and on the experience and knowledge of this Nurse Life Care Planner. The life care plan tables represent recommendations based on Mr. Smith’s life expectancy: 1) Without a heart transplant using the Ohio Bureau of Workers’ Compensation fee schedule 2) With a heart transplant using the Ohio Bureau of Workers’ Compensation fee schedule 3) Without a heart transplant using usual and customary costs 4) With a heart transplant using usual and customary costs 34 Timothy Smith 35 Nurse Life Care Plan Recommendations without Heart Transplant Cl Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 10 years (2021) Date Prepared: April 7, 2015 Projected Evaluations Recommendations Indication Dietician Evaluation Monitor (97803) Nutrition Duration Frequency/Replacement Begin/End 2015-‐2021 Annually to LE Mr. Smith is on a low salt cardiac diet. Cost obtained from Medical Fees 15 for Mr. Smith’s geographical area (75%) Prepared by Nancy Zangmeister RN, CRRN, CCM, CLCP, MSCC, CNLCP UCR Per Visit $53.98 Per Year $53.98 Life Time Cost $323.88 Comment 36 Nurse Life Care Plan Recommendations without Heart Transplant Cl Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 10 years (2021) Date Prepared: April 7, 2015 Supplies Recommendations Indication Duration Frequency/Replacement Begin/End Used to Clean LVAD Chlorhexidine 4 oz. 2015-‐2021 Tubing Insertion Site Used at LVAD Dressing Kits LVAD Tubing 2015-‐2021 Insertion Site HeartMate II Left Ventricular Assist Device (LVAD) (33979 ) (ICD9 37.65) HeartMate II Left Ventricular Assist Device (LVAD) Batteries (Q0506) Maintain Heart Function Maintain Equipment 2015-‐2021 2015-‐2021 1 Bottle/Month Monthly Every 8 – 10 years UCR Per Unit $4.48 Per Year $53.76 Per Unit $20.45 Per Year $245.40 Per Unit $250,000.00 Per Unit $2,500.00 4 batteries every 2 years Per Year $1,250.00 Prepared by Nancy Zangmeister RN, CRRN, CCM, CLCP, MSCC, CNLCP Life Time Cost $322.56 $1,472.40 Comment $7,500.00 Mr. Smith received his LVAD in 2012. (Q0478-‐0505) For informational purpose only (2) Lithium Ion Batteries 37 Nurse Life Care Plan Recommendations without Heart Transplant Cl Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 10 years (2021) Date Prepared: April 7, 2015 Medications Recommendations Indication Duration Begin/End Frequency/Replacement UCR Life Time Cost $261.36 Comment Per Unit OTC $3.63 Osteoporosis 2015-‐2021 Monthly Prevention Per Year $43.56 Per Unit OTC $9.39 365-‐count (2 Aspirin 325 mg Heart Health 2015-‐2021 Monthly $56.34 bottles) 1 tablet/day Per Year $9.39 Per Unit CVS $34.00 Digoxin (Lanoxin) 2015-‐2021 $56.25 Walgreens $39.00 250 mcg Heart Health Monthly $4,050.00 Rite-‐Aid $73.00 1 tablet/day Per Year Kmart $79.00 (generic) $675.00 Per Unit OTC Ferrous Sulfate 2015-‐2021 $11.98 325 mg Iron Monthly $862.56 2 tablets/day Supplement Per Year (OTC) $143.76 Per Unit OTC $1.33 $95.76 Multivitamins Maintain Health Monthly 2015-‐2021 1 tablet/day (OTC) Per Year $15.96 Unit cost equals monthly cost of medication. Costs obtained from www.goodrx.com for Mr. Smith’s zip code. Calcium Citrate/Vitamin D 315/200 mg) 2 tablets/day Prepared by Nancy Zangmeister RN, CRRN, CCM, CLCP, MSCC, CNLCP 38 Nurse Life Care Plan Recommendations without Heart Transplant Cl Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 10 years (2021) Date Prepared: April 7, 2015 Medications (cont’d) Recommendations Indication Duration Begin/End Frequency/Replacement spironolactone 2015-‐2021 (Aldactazide) Prevent Edema 25 mg 1 tablet/day (generic) pantoprazole (Protonix) 20 mg Treatment of 2015-‐2021 1 tablet/day Acid Reflux (generic) 2015-‐2021 Clindamycin 1% Topical Gel Antibiotic Pneumonia Vaccine Coreg (carvedilol) 25 mg 2 tablets/day (generic) Prevent Pneumonia Maintain Blood Pressure 2015-‐2021 Monthly Monthly Monthly One Every 5 years to LE (2 to LE) 2015-‐2021 Monthly Unit cost represents monthly cost of medication. Costs obtained from www.goodrx.com Prepared by Nancy Zangmeister RN, CRRN, CCM, CLCP, MSCC, CNLCP UCR Per Unit $15.67 Per Year $188.04 Per Unit $129.50 Per Year $1,554.00 Per Unit $145.00 Per Year $1,740.00 Per Unit $90.10 Per Year $18.02 Per Unit $76.50 Per Year $918.00 Life Time Cost $1,128.24 $9,324.00 $10,440.00 $180.20 $5,508.00 Comment Kmart $16.00 Rite-‐Aid $17.00 Walgreens $17.00 CVS $14.00 Kmart $166.00 Walgreens $119.00 CVS $103.00 Rite-‐Aid $130.00 Walgreens $145.00 Kmart $148.00 Rite-‐Aid $74.00 Walgreens $43.00 CVS $41.00 39 Nurse Life Care Plan Recommendations without Heart Transplant Cl Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 10 years (2021) Date Prepared: April 7, 2015 Medications (cont’d) Recommendations warfarin (Coumadin) 5 mg 1 tablet/day (generic) warfarin (Coumadin) 1 mg 1 tablet/day (generic) Vitamin D3 1,000 IU 2x/day (OTC) Indication Prevent Blood Clots Duration Frequency/Replacement UCR Begin/End Per Unit 2015-‐2021 $24.75 Per Year Monthly $297.00 Life Time Cost $1,782.00 Prevent Blood Clots Per Unit $22.00 Per Year $264.00 $1,584.00 Per Unit $5.98 Per Year $71.76 $430.56 Supplementation 2015-‐2021 2015-‐2021 Monthly Monthly Unit is equal to monthly cost. Costs obtained from www.goodrx.com Prepared by Nancy Zangmeister RN, CRRN, CCM, CLCP, MSCC, CNLCP Comment Dose is dependent on INR level Rite-‐Aid $36.00 Walgreens $21.00 CVS $19.00 Kmart $23.00 Dose is dependent on INR level Kmart $20.00 Rite-‐Aid $30.00 Walgreens $20.00 CVS $16.00 OTC 40 Nurse Life Care Plan Recommendations without Heart Transplant Cl Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 10 years (2021) Date Prepared: April 7, 2015 Future Medical Care Routine Recommendations Indication Duration Begin/End Frequency/Replacement UCR Per Unit $135.92 Cardiologist 2015-‐2021 Every 3 months Follow-‐up (99213) Per Year $543.68 Per Unit Adjust $25.06 INR Blood Draw Coumadin 2015-‐2021 Monthly (85610) Per Year Level $300.72 Per Unit Blood Draw 2015-‐2021 Monthly $19.28 Venipuncture (36415) Per Year $231.36 Per Unit Complete Monitor 2015-‐2021 Every 3 months $71.34 Metabolic Panel Health Per Year (CMP) (80053) $285.36 Per Unit Complete Blood Monitor 2015-‐2021 Every 3 months $40.49 Count (CBC) Health Per Year (85025) $161.96 Costs obtained from Medical Fees 2015 for Mr. Smith’s geographical area (75%). Monitor LVAD, Assess Cardiac Health Prepared by Nancy Zangmeister RN, CRRN, CCM, CLCP, MSCC, CNLCP Life Time Cost $3,262.08 Comment $1,804.32 $1,388.16 $1,712.16 $971.76 41 Nurse Life Care Plan Recommendations without Heart Transplant Cl Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 10 years (2021) Date Prepared: April 7, 2015 Future Medical Care Routine (cont’d) Recommendations Indication Duration Begin/End Frequency/Replacement UCR Per Unit $156.17 2015-‐2021 Every 3 months Per Year $624.68 Per Unit $135.92 Dermatologist Monitor Skin 2015-‐2021 Annually to LE (99213) Per Year $135.92 Per Unit Monitor $927.37 Bone Density Every 2 years to LE Bone 2015-‐2021 (78320) (3 to LE) Per Year Integrity $ Per Unit Monitor $135.92 Epileptologist Annually for 2 years Seizure 2015-‐2021 (99213) (2 to LE) Per Year Disorder $ Per Unit Monitor $45.31 Electrocardiogram Heart 2015-‐2021 Every 3 months to LE (93010) Per Year Function $181.24 Costs obtained from Medical Fees 2015 for Mr. Smith’s geographical area (75%). B-‐Type Natriuretic Peptide (BNP) (83880) Monitor Heart Function Prepared by Nancy Zangmeister RN, CRRN, CCM, CLCP, MSCC, CNLCP Life Time Cost Comment $3,748.08 $815.52 $2,782.11 $271.84 $1,087.44 42 Nurse Life Care Plan Recommendations without Heart Transplant Cl Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 10 years (2021) Date Prepared: April 7, 2015 Future Medical Care Routine (cont’d) Recommendations Echocardiogram (93306) Indication Duration Begin/End Monitor Heart 2015-‐2021 Function Frequency/Replacement Every 3 Months to LE Chest X-‐ray (71010) Monitor 2015-‐2021 Every 3 Months to LE Pulmonary Health Costs obtained from Medical Fees 2015 for Mr. Smith’s geographical area (75%). Prepared by Nancy Zangmeister RN, CRRN, CCM, CLCP, MSCC, CNLCP UCR Per Unit $944.72 Per Year $3,778.88 Per Unit $72.30 Per Year $289.20 Life Time Cost Comment $22,673.28 $1,735.20 43 Nurse Life Care Plan Recommendations without Heart Transplant Cl Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 10 years (2021) Date Prepared: April 7, 2015 Transportation Recommendations Mileage Reimbursement (154.80 miles round trip) (0.56/mile) Parking Garage Fee Handicap Parking Permit (Placard) Indication Duration Frequency/Replacement Begin/End Reimbursement to 2015-‐2021 appointments Parking to attend appointments Disability Parking 2015-‐2021 2015-‐2021 Every 3 months to LE Every 3 months to LE Every 5 years (2 to LE) Prepared by Nancy Zangmeister RN, CRRN, CCM, CLCP, MSCC, CNLCP UCR Life Time Cost Comment Per Unit $86.69 Per Year $346.76 $2,080.56 Per Unit $6.00 Per Year $24.00 Per Unit $0.00 Per Yer $0.00 $144.00 $0.00 Travel from Linesville, Pennsylvania to Cleveland, Ohio 44 Nurse Life Care Plan Recommendations without Heart Transplant Cl Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 10 years (2021) Date Prepared: April 7, 2015 Annual & Lifetime Costs UCR Category Annual Costs Projected Evaluations Supplies Medications Future Medical Care Routine Transportation Totals Prepared by Nancy Zangmeister RN, CRRN, CCM, CLCP, MSCC, CNLCP $53.98 $1,549.16 $5,938.49 $6,533.00 $370.76 $14,445.39 Life Time Costs $323.88 $9,294.96 $35,703.02 $42,251.95 $2,224.56 $89,798.37 45 Nurse Life Care Plan Recommendations with Heart Transplant Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 20 years (2031) Date Prepared: April 7, 2015 Projected Evaluations Recommendations Indication Pre-‐Transplant Team Evaluation* Evaluate Readiness for Transplant Physical Therapy Evaluation and Re-‐evaluation (97001, 97002) Determine Need for Therapy Duration Begin/End 2016 2016-‐2031 Frequency/Replacement UCR Life Time Cost $30,539.00 Once Per Unit $30,539.00 Per Year $ Per Unit $98.33 Per Year $98.33 $1,650.40 97001 $175.45 97002 $98.33 One Evaluation and Re-‐evaluation Annually to LE Comment *Pre-‐transplant evaluation includes: Surgeons, transplant nurse, nurse practitioner, cardiologists, transplant coordinator, psychologist, social worker, dietician, pharmacist, financial coordinator, physical therapist, and other physicians. Cost obtained from Cleveland Clinic financial office (basic charge) Wait time for transplant at Cleveland Clinic is typically 36 months Costs obtained from Medical Fees 2015 for Mr. Smith’s geographical area (75%) 46 Nurse Life Care Plan Recommendations with Heart Transplant Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 20 years (2031) Date Prepared: April 7, 2015 Projected Therapeutic Modalities Recommendations Physical Therapy (97110) Indication Maintain Strength and Endurance post-‐ transplant Duration Begin/End 2016-‐2031 Frequency/Replacement Allow for 60 sessions over LE UCR Per Unit $193.77 Per Year $ Life Time Cost $11,626.20 Comment Cost is for 45 minute session. Additional therapy to be determined at annual re-‐evaluation Cardiac rehabilitation for a minimum of 3 months is recommended after heart transplant. Periodic physical therapy sessions are recommended for increased strengthening, endurance, and physical mobility. Cost obtained from Medical Fees 2015 for Mr. Smith’s geographical area (75%) 47 Nurse Life Care Plan Recommendations with Heart Transplant Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 20 years (2031) Date Prepared: April 7, 2015 Medications Recommendations Indication Duration Frequency/Replacement Begin/End Prevent Immunosuppressant Rejection of 2016-‐2031 Medications Heart Calcium Carbonate/Vitamin D 500 mg Magnesium Oxide 400 mg Clindamycin 300 mg Monthly Supplement 2016-‐2031 Monthly Supplement 2016-‐2031 Antibiotic prior to Dental Work 2016-‐2031 Monthly 2-‐4 tablets 2x/year to LE Costs obtained from www.goodrx.com for Mr. Smith’s zip code. UCR Per Unit $4,982.00 Per Year $59,784.00 Per Unit $3.00 Per Year $36.00 Per Unit $8.39 Per Year $25.17 Per Unit $0.22 Per Year $0.88 Life Time Cost $896,760.00 Comment See below for list of medications $540.00 $377.55 $26.40 OTC Cost is for 120 tablets 48 Nurse Life Care Plan Recommendations with Heart Transplant Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 20 years (2031) Date Prepared: April 7, 2015 According to Cleveland Clinic Heart Transplantation guidelines, the following immunosuppressant medications can be used post-‐ transplantation: Immunosuppressant Medication Cyclosporine Dose Administration Route Possible Complications 3-‐6 mg/kg/day Oral or intravenous Tacrolimus 0.05-‐0.15 mg/kg/day Oral or intravenous Azathioprine 1-‐2 mg/kg/day Oral or intravenous Mycophenolate mofetil 2000-‐6000 mg/day Oral or intravenous Sirolimus 6 mg, then 2 mg/day Oral Corticosteroids (methylprednisolone maintenance dose of prednisone) 0.0-‐0.1 mg/kg/day Oral or intravenous Renal effects, hypertension, gingival hyperplasia, hirsutism, tremor, headache, paresthesia, flushing Renal effects, hypertension, tremor, headache, tremor, paresthesia, glucose intolerance. Macrocytic anemia, leukopenia, pancreatitis, cholestatic jaundice, hepatitis Gastrointestinal distress, leukopenia Hypertriglyceridemia, thrombocytopenia, leukopenia Cushingoid habitus, glucose intolerance, hyperlipidemia, hypertension, cataracts, myopathy, osteoporosis 49 Nurse Life Care Plan Recommendations with Heart Transplant Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 20 years (2031) Date Prepared: April 7, 2015 Future Medical Care Routine Recommendations Indication Duration Begin/End Frequency/Replacement UCR Per Unit $71.34 1st Year Allow 13 for year 1 $927.42 Complete Allow 4 year 2 Monitor 2nd Year Metabolic Panel 2016-‐2026 Allow 3 year 3 Health $285.36 (CPM 80053) Allow 2 years 4-‐10 3rd year $214.02 Years 4-‐10 $856.08 Per Unit $40.49 1st Year Allow 13 for year 1 $526.37 Allow 4 year 2 Complete Blood Monitor 2nd Year 2016-‐2026 Allow 3 year 3 Count (CBC 85025) Health $161.96 Allow 2 years 4-‐10 3rd year $121.47 Years 4-‐10 $485.88 Costs obtained from Medical Fees 2015 for Mr. Smith’s geographical area (75%) Life Time Cost Comment $2,282.88 $1,295.68 50 Nurse Life Care Plan Recommendations with Heart Transplant Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 20 years (2031) Date Prepared: April 7, 2015 Future Medical Care Routine (cont’d) Recommendations Indication Monitor Health Duration Begin/End 2016-‐2026 Frequency/Replacement Allow 13 for year 1 Allow 4 year 2 Allow 3 year 3 Allow 2 years 4-‐10 UCR Per Unit $88.69 1st Year $1,152.97 2nd Year Lipid Panel (80061) $354.76 3rd year $266.07 Years 4-‐10 $1,064.28 Per Unit $37.60 1st Year Allow 13 for year 1 $488.80 Monitor Allow 4 y ear 2 Magnesium 2nd Year Health 2016-‐2026 Allow 3 y ear 3 (83735) $150.40 Allow 2 years 4-‐10 3rd year $112.80 Years 4-‐10 $451.20 Costs obtained from Medical Fees 2015 for Mr. Smith’s geographical area (75%) Life Time Cost Comment $2,838.08 $1,203.20 51 Nurse Life Care Plan Recommendations with Heart Transplant Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 20 years (2031) Date Prepared: April 7, 2015 Future Medical Care Routine (cont’d) Recommendations Indication Duration Begin/End Frequency/Replacement UCR Per Unit $871.46 1st Year $11,328.98 Immunosuppressant Allow 13 for year 1 Drug Levels (80158, Monitor Allow 4 year 2 2nd Year 80197, 83789, Safe 2016-‐2026 Allow 3 year 3 $3,485.84 80180, 80195) Levels Allow 2 years 4-‐10 3rd Year $2,614.38 Years 4-‐10 $10,457.52 Per Unit $19.28 1st Year Allow 13 for year 1 $250.64 Allow 4 year 2 Monitor 2nd Year Urinalysis (81015) 2016-‐2026 Allow 3 year 3 Health $77.12 Allow 2 years 4-‐10 3rd Year $57.84 Years 4-‐10 $231.36 Costs obtained from Medical Fees 2015 for Mr. Smith’s geographical area (75%) Life Time Cost Comment $27,886.72 $616.96 52 Nurse Life Care Plan Recommendations with Heart Transplant Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 20 years (2031) Date Prepared: April 7, 2015 Future Medical Care Routine (cont’d) Recommendations Indication Duration Begin/End Frequency/Replacement UCR Per Unit $45.31 1st Year Allow 13 for year 1 $589.03 Electrocardiogram Monitor Allow 4 year 2 2nd Year (EKG) Heart 2016-‐2026 Allow 3 year 3 $181.24 (93010) Function Allow 2 years 4-‐10 3rd Year $135.93 Years 4-‐10 $543.72 Per Unit $72.30 1st Year Allow 13 for year 1 $939.90 Monitor Allow 4 year 2 Chest X-‐ray 2nd Year Lung 2016-‐2026 Allow 3 year 3 (71010) $289.20 Health Allow 2 years 4-‐10 3rd Year $216.90 Years 4-‐10 $867.60 Costs obtained from Medical Fees 2015 for Mr. Smith’s geographical area (75%) Life Time Cost Comment $1,449.92 $2,313.60 53 Nurse Life Care Plan Recommendations with Heart Transplant Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 20 years (2031) Date Prepared: April 7, 2015 Future Medical Care Routine (cont’d) Recommendations Indication Post-‐Transplant Laboratory Studies Monitor Health Duration Begin/End 2027-‐2031 Frequency/Replacement Annually to LE UCR Per Unit $553.34 Per Year $553.34 Per Unit $135.92 1st Year $1,766.96 Allow 13 for year 1 2nd Year Allow 4 year 2 $543.68 Cardiologist Monitor Allow 3 year 3 2016-‐2031 (99213) Health Allow 2 years 4-‐10 3rd Year Annually years 11-‐15 $407.76 Years 4-‐10 $1,631.04 Years 11-‐15 $679.60 Costs obtained from Medical Fees 2015 for Mr. Smith’s geographical area (75%) Life Time Cost Comment $2,213.36 Lipids (80061) AgbA1C (83036) CRP (86140) BNP (83880) Troponin (84484) EKG (93010) $5,029.04 54 Nurse Life Care Plan Recommendations with Heart Transplant Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 20 years (2031) Date Prepared: April 7, 2015 Future Medical Care Routine (cont’d) Recommendations Indication Endomyocardial Biopsy (93505, 88307) Monitor for Rejection of Heart Endomyocardial Biopsy (93505, 88307) Monitor for Rejection of Heart Duration Begin/End 2016 2017-‐2031 Frequency/Replacement UCR Per Unit Allow 16 for year 1 $2,825.98 (1st month weekly, 2nd Per Year month every 2 weeks, 3-‐ $45,215.68 12 every 3-‐4 weeks. Per Unit $3,470.00 As needed Per Unit $5,371.41 2016 Allow 1 post-‐transplant Per Year $5,371.41 Per Unit Right & Left Heart Monitor $5,371.41 Catheterizations Cardiac 2017-‐2031 Annually Per Year (93461) Function $5,371.41 Costs obtained from Medical Fees 2015 for Mr. Smith’s geographical area (75% Right & Left Heart Catheterizations (93461) Monitor Cardiac Function Life Time Cost $45,215.68 Comment After the first year, the frequency of the biopsies is determined by the rejection history Cost not calculated. For information purpose only $5,371.41 $7,999.74 55 Nurse Life Care Plan Recommendations with Heart Transplant Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 20 years (2031) Date Prepared: April 7, 2015 Future Medical Care Routine (cont’d) Recommendations Indication Duration Begin/End Frequency/Replacement Venipuncture (36415) Laboratory Allow 13 for year 1 Allow 4 year 2 Allow 3 year 3 Allow 2 years 4-‐10 Annually years 11-‐15 UCR Per Unit $19.28 1st Year 2016-‐2031 $250.64 2nd Year $77.12 3rd Year $57.84 Years 4 -‐10 $231.36 Years 11-‐15 $96.40 Per Unit Echocardiogram Monitor Heart 2016-‐2031 Allow 1 after transplant, $1,236.81 (93306) Function then yearly as needed Per Year Costs obtained from Medical Fees 2015 for Mr. Smith’s geographical area (75%) Life Time Cost Comment $713.36 $1,236.81 56 Nurse Life Care Plan Recommendations with Heart Transplant Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 20 years (2031) Date Prepared: April 7, 2015 Future Medical Care Routine (cont’d) Recommendations Indication Duration Begin/End Frequency/Replacement Coronary Angiogram (75574) Monitor Coronary Artery Disease 2016-‐2031 Annually Intravascular Ultrasound (75945) Monitor Heart Vessels 2016-‐2031 As needed UCR Time Cost Comment Per Unit $1,884.62 Per Year $1,884.62 Per Unit $707.58 $28,269.30 One 6-‐8 weeks post-‐transplant and then annually Not included in totals. For informational purposes only Mr. Smith may or may not undergo this test 57 Nurse Life Care Plan Recommendations with Heart Transplant Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 20 years (2031) Date Prepared: April 7, 2015 Acute Surgical Interventions Recommendations Indication Duration Begin/End Frequency/Replacement Heart Transplant (Surgery, Treatment for 2016 Anesthesia, Heart Failure Hospital Stay, etc.) Estimated cost obtained from financial coordinator at Clinic. Once UCR Per Unit $775,000.00 Per Year $ Time Cost Comment $775,000.00 58 Nurse Life Care Plan Recommendations with Heart Transplant Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 20 years (2031) Date Prepared: April 7, 2015 Transportation Recommendations Mileage Reimbursement (154.80 miles round trip) (0.56/mile) Parking Garage Fee Handicap Parking Permit (Placard) Indication Duration Frequency/Replacement Begin/End Reimbursement to 2016-‐2031 appointments Parking to attend appointments Disability Parking 2016-‐2031 2016-‐2031 Allow 13 for year 1 Allow 4 year 2 Allow 3 year 3 Allow 2 years 4-‐10 Annually years 11-‐15 Allow 13 for year 1 Allow 4 year 2 Allow 3 year 3 Allow 2 years 4-‐10 Annually years 11-‐20 Every 5 years (2 to LE) UCR Life Time Cost Per Unit $86.69 1st Year $1,126.97 2nd Year $346.76 3rd Year $260.07 Years 4 -‐10 $1,040.28 Years 11-‐15 $433.48 Per Unit $10.00 Per Year $ Per Unit $0.00 Per Yer $0.00 Comment Travel from Home $3,207.53 to Clinic $280.00 $0.00 $130.00 $40.00 $30.00 $120.00 $50.00 59 Nurse Life Care Plan Recommendations with Heart Transplant Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 20 years (2031) Date Prepared: April 7, 2015 Housing/Child Care Recommendations Indication Hotel Stay Housing Daily Meals Food Hotel Stay Post-‐Transplant Housing Duration Frequency/Replacement UCR Begin/End Per Unit 2016 7-‐14 days $185.00 Per Year $2,590.00 Per Unit 2016 7-‐14 days $71.00 Per Year $994.00 Per Unit 2016 4 – 6 weeks $185.00 Per Year $7,770.00 Daily Meals Food 2016 4-‐6 weeks Child Care Attend to Children 2016 8 weeks Per Unit $142.00 Per Year $5,964.00 Per Unit $13.00 Per Year $13,312.00 Life Time Comment Cost Intercontinental Hotel 877.707.8999 $2,590.00 While Mr. Smith is in the hospital Government per $994.00 diem rate Mr. Smith will need to live near the $7,770.00 hospital for 4-‐6 weeks after transplant $5,964.00 Unit Cost is equal to hourly rate $13,312.00 16 hours/day during school days, 48 hours on weekend 60 Nurse Life Care Plan Recommendations with Heart Transplant Client: Timothy Smith Diagnosis: Heart Failure Life Expectancy: 20 years (2031) Date Prepared: April 7, 2015 Lifetime Cost Projection URC Category Projected Evaluations Therapeutic Modalities Medications Future Medical Care Routine Future Surgical Intervention Transportation Housing/Child Care Totals Annual Totals $98.33 $59,846.05 $104,025.90 $3,577.56 $167,547.84 Life Time Totals $32,189.40 $11,626.20 $897,703.95 $135,935.74 $775,000.00 $3,577.56 $30,630.00 $1,866,662.85 Review of the Life Care Plan for Lucy Adams November 9, 2010 This report has been prepared as a response to the Life Care Plan submitted for Ms. Lucy Adams, a 58-year-old woman who sustained an incomplete spinal cord injury at C5-6 on January 10, 2002, at age 50, resulting in quadriplegia. To simplify comparison, the sections in this report follow the outline given in the Life Care Plans prepared by Anna M. Monroe SCM OT(C) dated November 18, 2004 and August 28, 2008, presented by the plaintiff’s attorney, Ms. Mary P. Jefferson. It is noted that Dr. Madison, Ms. Monroe, and Ms. Lincoln are treating Ms. Adams and that Ms. Monroe is the owner of a medical supply concern with billing to this patient’s account. The following records were used and referenced in the preparation of this report: Ms. Monroe Life Care Plans 11/18/2004, 8/28/2008 Ms. Monroe Occupational Therapy Report 2/13/2009 Dr. M. George Washington Expedited Medical Report Addendum 1/10/2005 Mary Lincoln Physiotherapy Report 6/7/2006 Assorted 2002-2005 Receipts for drugs and supplies, unlabeled Ms. Lincoln Physical Therapy Evaluation 2/26/2009 Ms. Lincoln Addendum letter to Atty Jefferson 6/19/2009 Dr. Madison Record review and examination 4/15/2010 Ms. Jefferson Initial Filing AA Johnson Ltd. Quotation Ref# AA4350/RR 10/21/2010 ABC Rehab Quotation for selected items 11/9/2010 THIS REPORT IS ATTORNEY INTERNAL WORK PRODUCT AND NOT TO BE PRODUCED IN EVIDENCE. Lucy Adams November 9, 2010 Re: Life Expectancy According to statistics compiled from the UN and other sources, Island life expectancy is comparable to 95% of US life expectancy 1; in Ms. Jefferson’s Initial Filing, Dr. George Madison, therein identified as a psychiatrist but actually a physiatrist with a specialty in pain management, opined that Island citizens enjoy a level of health that brings them to high levels of life expectancy. The most recent US National Vital Statistics Reports indicate that the life expectancy for a black woman of age 57-58 is 24.2 more years,2 to age 82. Ninety-five per cent of this figure is 77.9 years, 19.9 more years from now. The Island Statistical Service reports that life expectancy for a 58-year-old female is 27.8 more years, 3 to age 86.8. In the Initial Filing, Dr. Washington is quoted in 2004 as estimating Ms. Adams’ life expectancy to be decreased by 13 years, although his source is not quoted and normal life expectancy is not given. Applying Dr. Washington’s estimate of a decrease of thirteen years to the above statistics, life expectancy would be between 6.9 and 14.7 more years, an average of 10.8 years from now. The Initial Filing cites Dr. Madison in 2010 variously opining that life expectancy is 20-25 years, to age 78-83. He cites Ms. Adams’ general good condition, attitude, and lack of ongoing complications, and references statistics from the National Spinal Cord Injury Statistical Center (NSCISC). However, according to the NSCISC, for persons with a C5-8 SCI without ventilator dependence and who survive at least one year post injury sustained at age 50, life expectancy is 15.7 years after injury, i.e., to age 65.7, 7.7 years from now.4 A second table notes that for a person with this level injury who has attained the age of 55-60 regardless of age at injury, life expectancy is between 13.1 and 10.1 years, respectively.5 These tables are appended on page 16 of this report. Therefore an estimate of 20-25 more years is not supported by this source. This range is also congruent with Dr. Washington’ estimate of a decrease of 13 years. 1 Wolfram Alpha database, 2010 2 National Vital Statistics Reports, Vol. 58, No. 10, March 3, 2010, http://www.cdc.gov/nchs/fastats/lifexpec.htm, table 9, retrieved 3/26/2010 3 Personal communication from Smith J, statistician, Socio-Economic Statistics Division, Island Statistical Service, 10/13/2010 4 National Spinal Cord Injury Statistical Center, Birmingham Alabama, Table 12, February 2010 5 NSCISC, ibid., Table 13 2 Lucy Adams November 9, 2010 The use of the life expectancies in the tables in this report are for comparison only and is not meant to imply agreement with a particular life expectancy. On costs: Each item is listed in the order given in the Monroe life care plans submitted, with subsequent columns giving discussion on the appropriateness or other features of each item. The next columns give the annual cost proposed by Monroe and the actual appropriate cost supported by standards of care, research into current costs, and other factors as given in the discussion. The final columns give one-time costs. While there are many duplicated items or items that are completely inappropriate, note that this plan prepared by a non-nurse ignores some required items for care, such as pain medications, and adds several which are not in use and have not been for some years. Refer to the discussions as noted in the tables to clarify these discrepancies. When costing out large items with known replacement intervals, it is often not appropriate to give an “annual” cost when working with life expectancy. For example, an item which costs $1000 and must be replaced every five years for a person with a life expectancy of 13 years from now must be costed thus: • • First purchase, year 0 (now) Second purchase, end of year 5 • • Third purchase, end of year 10 (last purchase, will outlast life expectancy) Total cost for life expectancy, $3000 If one were to calculate this item at $200/year and multiply that times 13 years, the total of $2600 would not cover the required time period. However, if the item were already in use, having been bought two years before today, (year -2) costing hence is properly done thus: • First purchase, end of year 3 • • Second purchase, end of year 8 (last purchase, as life expectancy ends at end of year 13) Total cost for life expectancy, $2000 In this example, if one were to calculate this item at $200/year and multiply that times 13 years, the total of $2600 would be excessive for the required time period. 3 Lucy Adams November 9, 2010 Durable medical equipment comes all of a piece. One cannot purchase one half of a year of a bed and it is meaningless to budget for it in that manner. If the above replacement comes due at one year before life expectancy, the replacement in full is indicated. Therefore only annual amounts for goods or services which are provided truly annually, e.g., medications, disposable supplies, medical office visits, and nursing hours, should be costed on an annual basis. For comparison, the summary table below gives an annual total from the tables using the methodology used by Monroe for all items, but these should properly be recalculated in their entirety for all durable goods taking into account what is already in use. Costs noted here are from suppliers as given. If Monroe’s costs are lower, they are used. If other supplier’ costs are lower, they are used as noted. Occasionally one-time costs are given instead of an annual cost; in all cases these are less than annual replacement over many years. Re suppliers: Re Mrs. Anna Monroe, Occupational Therapist, research reveals that Mrs. Monroe is the Managing Director of Island Rehab, “ … leading supplier of rehabilitation and home care products in Island,” (according to their Website at www.xxxxxxxx.com/.htm). They are representatives for Invacare, a well-known line of rehabilitation products, and won the Growth Award for Latin America and South America from Invacare Corporation in 20xx. As noted in individual line items in the charts, some prices were obtained from another Invacare dealer, AA Johnson Ltd., Christ Church, Island; ABC Rehab; and from Clinton Medical Supply, XYZ Medical Centre, St. Anselm. All prices included in the Review are based on today’s Island dollars (ID) and are obtained from suppliers, facilities, pharmacies, vendors, and providers as available. Prices should be assumed to be negotiable. Equipment maintenance varies with individual needs and frequency of equipment use. Costs do not reflect inflationary trends of the health care industry. Allowances for inflation and any medical care cost trends should be determined by a qualified Economist. This report may be amended or supplemented upon receipt of additional medical records or evaluations. Opinions expressed are held to a reasonable degree of professional certainty. 4 Lucy Adams November 9, 2010 This Review cannot guarantee absence of errors and omissions, nor can it guarantee particular outcomes with suggested interventions. The author reserves the right to amend or supplement it upon receipt of additional medical records, evaluations, or billings. Summary of Total Annual Costs by Modality Annual Costs One-Time Costs Monroe Howland Monroe Howland MD specialty care $20,598 $2,906 PT/OT $20,800 $400 Medications $4,570 $175 $45,968 $3,481 $800 Wheelchair $4,790 $2,029 $1,272 Supplies $26,085 $1,640 Medical Care TOTAL $800 Medical Equipment Therapeutic exercise equipment TOTAL $11,979 $18 $10,609 $150 $42,854 $3,687 $10,609 $1,422 Diagnostic Testing $3,100 $972 $96,000 $39,805 $26,000 $0 $13,000 $0 $135,000 $39,805 $226,922 $47,945 $10,609 $2,222 Future Domestic and Nursing Care and Assistance Home nursing Housekeeping Driving TOTAL GRAND TOTAL Note that Ms. Adams is likely receiving medications which Monroe did not include in her plan. If desired, refer to previous draft of 11/9/2010 for gabapentin and NSAID costs to include. 5 Lucy Adams November 9, 2010 Cost Projections by Modality Future Domestic and Nursing Care and Assistance Note: The NSCISC gives hours of care for a C6 level of injury living alone thus: personal care, 6 hours per day and homemaking (including meals and home management), 4 hours per day. Interquartile range is 8-24 hours with a median of 17 hours; note that this would be for a complete (ASIA A) SCI and Ms. Adams has an incomplete (ASIA D) injury. Assumption is that patient is appropriately able to direct her own care if needed, which is reasonable given Dr. Madison’ description. Twelve hours per day of unlicensed care, plus family involvement, is generous. Consortium for Spinal Cord Medicine, Outcomes Following Traumatic SCI: Clinical Practice Guidelines for Health-Care Professionals, pp 13-20, Washington DC, Paralyzed Veterans of America, 1999, in Life Care Planning and Case Management Handbook, 3rd ed., Weed RO and Berens DE, CRC Press, Boca Raton FL, 2010 NSCISC = National SCI Statistical Center, University of Alabama Birmingham Department of Physical Medicine and Rehabilitation Annual Item (Monroe) Practical nurse, 24 hrs/day, $8000/ month Housekeeper, 7 days/week, $500/ week Driver, 3 days/ week, $250/week TOTAL Costs One-Time Costs Monroe Howland Monroe According to Dr. Washington, 24-hour care is not indicated at this point. Many more severely-affected persons with SCI do not need 24-hour licensed care. 8-12 hours per day of care from a certified nursing aide would be appropriate, with family assistance, and supervision from an RN monthly. According to Clinton Medical Supply in St. Anselm, average wages for home nursing in Island are: • RN, $25 - 40/hour ID (av. $32) • nursing aide, $8-10/hour ID (av. $9) Therefore, 12 hours per day of personal care would cost $108 x 365 days = $39,420, plus 12 hours per year RN supervision = $385 $96,000 $39,805 I am not familiar with Island law in this respect; however, if there are adults living in a home, it is reasonable to expect that they would perform these duties as need for them is not dependent on presence or absence of her injury. See Note above, in which four homemaker hours is included in the total home care hours; this assumes patient is living alone without family members. $26,000 $0 I am not familiar with Island law in this respect; however, if there are adults living in a home, it is reasonable to expect that they would perform these duties using the family vehicle. No indication that Ms. Adams would need transportation in this range. $13,000 $0 $135,000 $39,805 Discussion (Howland) Howland 6 Lucy Adams November 9, 2010 Home Care Equipment Wheelchair Needs/Mobility/Maintenance Chair model is not specified by Monroe. Unknown when present chair was purchased so replacement date cannot be used. Fitting changes may be indicated with weight change, can be evaluated annually. The wheels will likely need to be replaced every 2 years (not noted by Monroe). A specialty wheelchair cushion lasts approximately one year when used daily, not two years as noted by Monroe. The chair will require repairs every 1-2 years and replacement every 5-7 years. Note that it would have been appropriate for Monroe to include vehicle modifications, e.g., a carrier installed on a tow-ball, to carry the power chair after Ms. Adams is seated in the vehicle (she is noted to be able to do transfers), or modifications to a van to allow her to roll in and tie down. It is not appropriate to include the full cost of a van; average cost of a vehicle should be subtracted from any vendor estimate, since it is assumed that everyone has a car. Van replacement is estimated at ten years; modifications, e.g., lift and tie-downs, can be moved to a new vehicle without replacement. Annual Item (Monroe) Costs One-Time Costs Monroe Discussion (Howland) Monroe Howland Power chair Brand and features not specified. However, a representative power chair is the Invacare 51LXP, $10,117 ID with battery and charger from AA Johnson; an unspecified model from ABC is $7893 (without charger). A chair should be replaced every five to seven years (average 6). Wheelchair should be fitted by a seating specialist, not a vendor or caregiver. Has a chair now; document date of purchase and do not count costs against annual sum until this one needs replacement. Charger does not need annual replacement. $2,400 $1,686 Extra battery (First year cost $0) Battery = $799 from AA Johnson, $753 from ABC, does not need replacement annually. One time cost. See also comment above. $325 $0 Maintenance Should be included in wheelchair clinic annual eval by certified seating therapist, not vendor $450 $0 Roho cushion and rigidizer Roho DuroGel-Foam cushion, $111 ID, should be replaced annually. Rigidizer is part of wheelchair options and is a one-time cost, $52 per AA Johnson; cushion is $447 from ABC. $500 $111 Incontinence cushion covers (2) Not indicated; diapers, disposable pads will serve this function, cover is impervious $100 $0 Wheelchair fleece liners (2) Two liners is reasonable for skin protection, replacement every two years as they will not be in constant use. ABC price, $85 $400 $85 Acrylic lapboard With wheelchair, lap tray, $162 USD / $324 ID, seven years. ABC price, $430/7 = $61 $115 $47 Manual transport chair Inexpensive manual chair for emergency transport only, no replacement anticipated due to low use, $421 per AA Johnson $200 $0 Howland $799 $52 $421 7 Lucy Adams November 9, 2010 Annual Item (Monroe) Maintenance Discussion (Howland) Minimal maintenance beyond normal household capabilities (lubricating bearings, tightening bolts, etc.) TOTAL Costs One-Time Costs Monroe Howland Monroe $300 $100 $4,790 $2,029 Howland $1,272 Supplies Note also that Ms. Lincoln, in her addendum letter to Atty. Jefferson, opines that since Ms. Adams will not be able to be independent in the kitchen or bath, the long list of items for independent function given in the plan are not appropriate. Objects falling under this category, or objects found in any home and/or not related to injury include: shower grab bars, pull-down toilet safety bars, shampoo assist, toenail scissors, button hook and scissors pull, rocker knife, T-handle knife and carry case, can opener, jar opener, pan handle stabilizer, cooking utensils, cutting board, spreading board, electric chopper, and roller knife. As these were not included in the summary from Atty Jefferson I do not include them here. Home modifications for kitchen accessibility and independence are likewise not indicated according to Ms. Lincoln’s addendum. Annual Item (Monroe) Costs One-Time Costs Monroe Discussion (Howland) Monroe Howland “Routine supplies: incontinence pads, lotions, disinfectants” Billing documentation for current use needed, otherwise not substantiated. Also subtract Nizoral cream, $840, seen under Medication, not related to injury. Incontinence pads at $370 for box of 150 at AA Johnson, assume 3 /day, 8 boxes per year, $2900. Disinfectants in addition to normal household cleaning supplies already in use are not needed for home care. $2,400 accept “Disposables (diapers, urinary condom catheters, urine bags, tubing)” According to reports received, Ms. Adams does not have an indwelling catheter and is successfully managing her bowels using a commode chair (supra). Condom catheters are not used by females. Four adult diapers per day, on average, is reasonable, cost $3080 ID per Monroe LCP 2004 (Monroe gives cost of $1540 ID / yr for 2 a day, total amounts unchanged in 2008 plan) $5,000 $1,540 Wound care supplies No documentation of any wounds found. Several mentions that skin is without wounds. $6,000 $0 Antibiotics Billing to establish history is not presented. Duplicate in Medications $2,000 $0 Howland 8 Lucy Adams November 9, 2010 Annual Item (Monroe) Discussion (Howland) Costs One-Time Costs Monroe Howland Monroe Medication related to head injury Billing to establish history is not presented. According to Madison MD 2009 evaluation, none in use. No current head injury sequelae documented. $5,000 $0 Therapeutic pressure gradient support hose Should have two pair per year. AA Johnson has these for $57 / pair; ABC, for $99 / pair $40 accept Indwelling urinary catheters No indwelling catheter by documentation $350 $0 Catheterization kits No indwelling catheter by documentation, no cath kits needed (also no RN to change caths every 3 weeks, see Domestic Care) $610 $0 Leg bags No indwelling catheter by documentation, so no need for drainage bag $780 $0 Bedside urine bags No indwelling catheter by documentation, so no need for drainage bag $260 $0 Knee-high therapeutic pressure gradient support hose Duplication of hose above $1,080 $0 Ball-style right finger wrist splint Not indicated by Madison MD evaluation $140 $0 Functional right wrist splint Not indicated by Madison MD evaluation $140 $0 Serial splinting right wrist and fingers Duplication of splints above $450 $0 Bilateral anklefoot orthoses (AFO)/bed use Madison MD evaluation indicates these are not necessary as no weightbearing is expected. $80 $0 Bilateral anklefoot orthoses (AFO)/custom Duplication of item above, not indicated $480 $0 Supportive footwear (laced trainers) Since Ms. Adams will not be bearing weight and walking, shoes will not wear out rapidly, so replacing shoes more often than annually is not indicated. Shoes are cosmetic only, no support required for non-weightbearing. Soft slippers would be more appropriate and decrease the risk of pressure injury. $975 $100 Howland 9 Lucy Adams November 9, 2010 Annual Item (Monroe) Bilateral back slabs Costs One-Time Costs Monroe Discussion (Howland) Monroe Howland Duplication, because power chair includes seating support and cushion rigidizer. Madison MD evaluation notes neurological preservation of trunk stability for upright seated posture. $300 $0 $26,085 $1,640 TOTAL Howland Medical Care/Follow up Annual Item (Monroe) Urology, 2/yr Discussion (Howland) Annual urological exam is reasonable. Check cost for office visit with MD office. Receipts indicate cost in the $150 range for MD office visits. Costs Monroe Howland $300 $150 Neurology, 2/yr Not indicated. Neurological status is stable. Neurological monitoring is part of primary care. $1,000 $0 Physiatry, 4/yr Twice annual is reasonable to oversee condition and suggest changes in plan, if any. Check cost for office visit with MD office. Receipts indicate cost in the $150 range. $800 $300 Home care physician/ primary care, 6/yr Office visit twice yearly is appropriate; allow two extra visits every two years, yielding three visits per year on average. Check cost for office visit with MD office. Receipts indicate cost in the $150 range. $900 $450 Ophthalmology Annual ophthalmological exam is a normal expense for someone who needs glasses, not related to injury. $650 $0 Gynaecology Every woman should have routine gynaecological screens. Not related to injury. $300 $0 Psychiatry, 12/yr Ms. Adams has never been described as depressed; is noted as “wear(ing) a constant smile” in Initial Filing. Dr. Madison notes no depression history or present condition. Allowance for periodic counseling might be appropriate, but there is no evidence at all that ongoing counseling is indicated at this point. $1,800 $100 One-Time Costs Monroe Howland 10 Lucy Adams November 9, 2010 Annual Item (Monroe) Discussion (Howland) Costs Monroe Howland $173 $0 Registered Nurse, once per 3 wks “Change catheter and catheter kit” Ms. Adams has not had an indwelling catheter for several years. RN monthly to supervise unlicensed personnel in home is reasonable. Cost listed above under Domestic Nursing. Podiatrist every 6 weeks SCI patients can experience foot problems. Feet can be monitored for lesions daily during bathing by unlicensed personnel and by RN at monthly visit. Twice-annual visit is reasonable for nail care. Assuming $675 is accurate for eight visits per year, each visit is $78. $675 $156 No history to support this much hospital admission. It might be reasonable to assume one admission every two years for infection according to Dr. Washington; he also felt costs of $2000 per day were excessive. Allowed for five inpatient days every two years at $700/day. $14,000 $1,750 $20,598 $2,906 Acute Hospital Care TOTAL One-Time Costs Monroe Howland $0 $0 Physical and Occupational Therapy Annual Item (Monroe) Physical therapy Occupational therapy TOTAL Costs One-Time Costs Monroe Discussion (Howland) Monroe Howland Howland No frequency given. At eight years post injury, Ms. Adams should be completely transitioned to home care with maintenance range of motion and stretching directed by patient and performed by unlicensed personnel or family members with supervision from licensed personnel twice yearly after four visits, once weekly, at discharge home. Cost for one supervisory PT visit per receipts = $100 ID per visit. $10,400 $200 $400 No frequency given. At eight years post injury, Ms. Adams should be completely transitioned to home care with assistance for ADLs directed by patient and performed by unlicensed personnel or family members with supervision from licensed personnel twice yearly after four visits, once weekly, at discharge home. Cost for one supervisory OT visit per receipts = $100 ID per visit. $10,400 $200 $400 $20,800 $400 $800 11 Lucy Adams November 9, 2010 Medication Annual Item (Monroe) Discussion (Howland) Costs One-Time Costs Monroe Howland Monroe Influenza vaccination Recommended for all citizens, not related to injury, routine care $75 $0 Pneumovax Recommended for disabled to decrease chance of pneumonia. Cost needs to be verified. Clinics may offer low-cost or free immunizations to elderly or disabled citizens. $75 $75 Colace No medications for bowels noted in Dr. Madison’ evaluation $180 $0 Nizoral cream Unrelated to injury if used for routine fungal/ yeast infection as indicated on packaging (not a prescription item) $840 $0 Antispasmodic medication None presently in use per Dr. Madison’ evaluation $2,400 $0 Antibiotics Duplicate entry from “Supplies.” No billing history or medical indication for routine use of antibiotics. It might be reasonable to assume one course of antibiotics per year for urinary tract infection. Cost needs to be verified but average cost in USD would be <$50. $1,000 $100 $4,570 $175 TOTAL Howland Laboratory, Imaging, Investigation Annual Item (Monroe) MRI Costs One-Time Costs Monroe Discussion (Howland) Monroe Howland At 8 years post injury Ms. Adams’ injury is stable. There is no indication for annual MRI absent acute symptoms. It might be reasonable to allow for one MRI per 8 years in case this occurs. $1,600 $200 Renal ultrasound This is standard of care for every 1-2 years. Cost needs to be verified and prorated for 18 months. Assuming this cost is accurate, prorated annual cost would be $225. $300 $225 Cystogram This is standard of care for every 1-2 years. Assuming this cost is accurate, prorated annual cost would be $187. $250 $187 Urodynamic study At this point Ms. Adams’ status is stable. This is standard of care for every 1-2 years. Assuming this cost is accurate, prorated annual cost would be $300 $400 $300 Howland 12 Lucy Adams November 9, 2010 Annual Item (Monroe) Discussion (Howland) Costs One-Time Costs Monroe Howland Monroe Routine urinalysis One UA annually is reasonable to check for renal function in the presence of risk for infection. Cost needs to be verified. Routine UA is $30 USD = $60 ID $200 $60 Pap smear Routine care, not related to injury. $150 $0 Mammogram Routine care, not related to injury. $200 $0 $3,100 $972 TOTAL Howland Therapeutic Exercise Equipment Annual Item (Monroe) Costs One-Time Costs Discussion (Howland) Monroe Howland Monroe Howland Access to a heated pool at a facility two or three times per week, or membership in a health club with similar facility, would be appropriate if available. According to telephone survey, no fitness clubs in area have a warm pool for handicap access. Range of motion exercises can be done by unlicensed personnel and should be done at least daily in a warm shower (at home). $0 $0 $10,609 $0 Pump maintenance Annual, $500; weekly cleaning, $50 for total given $3,000 $0 Active/passive trainer “Exercises paralyzed and innervated muscles, maintains cardiovascular health” Not indicated, passive exercise does not increase heart rate, provide increased vascular resistance, or make paralyzed muscles active, thus does not promote CV health. Passive range of motion exercises by unlicensed personnel will fulfill this need because, lacking enervation, paralyzed muscles cannot actually “exercise.” $2,200 $0 Tilt table and accessories “Prevent osteoporotic changes and maintain lower extremity vascular health” Osteoporotic changes in lower extremities would be addressed by weight bearing, which cannot occur due to permanent contractures according to Dr. Madison. There is no evidence of arterial disease in her legs; venous circulation is accomplished by active muscle movements, not upright posture. This is the indication for support hose, already included. $2,600 $0 Pool 13 Lucy Adams November 9, 2010 Annual Item (Monroe) Costs One-Time Costs Monroe Discussion (Howland) Monroe Howland Electric table exercise mat “Balance, range of motion” Trunk balance is adequate according to Dr. Madison, due to retained functional neurological level. Range of motion is passive by assistive personnel and active by Ms. Adams with supervision and encouragement by them. No special equipment needed for this. $2,600 $0 Standing frame and accessories Contractures prevent standing and weightbearing, not indicated $1,000 $0 Dumbbells, 2 each, 2#, 3#, 5#, 10# Ms. Adams cannot lift more than small amounts of weight (assessed at strength 3 / 5 in left arm, 1- 2 /5 in right by Dr. Madison). Cannot grasp dumbbell in right hand anyway. See below. $66 $0 Strap-on weight cuffs, 2#, 5#, 10# Two cuff weights (one 2# and one 5#) would be reasonable. These could be used for arms and legs in sequence. Replacement not likely for life expectancy. Available at AA Johnson for $145 ID for both; from ABC for $88 $17 $0 Theratubes with handles “Proprioceptive and weight training” Ms. Adams’ proprioception (sense of where her body parts are in space) is neurologically stable 8 years post injury and will not change with any kind of exercises. Weight cuffs and maximizing her active exercise in transfers, bathing, dressing, and activities will serve as an acceptable home program for maintaining strength, as increases in strength are not likely at this point. (ABC charge is $15) $63 $0 Over-door pulley “For shoulder ranging” Not indicated, not necessary, duplicates range of motion by assistive personnel during bathing, dressing, and other activities. $20 $0 Gymnastic balls, 3 sizes, plus ball pump “Balance and strengthening exercises” Not indicated. Ms. Adams permanently lacks joint mobility and proprioception needed for standing; truncal control is stable, as noted above. $93 $0 Hand exercise balls and hand gripper “hand strengthening” See below. Duplicates putty. $78 $0 Therapeutic putties This is reasonable and safer than hard objects to use for independent hand exercises. This is a reasonable cost. (ABC cost $12 x 4 = $48) $18 $18 Howland $88 14 Lucy Adams November 9, 2010 Annual Item (Monroe) Costs One-Time Costs Monroe Discussion (Howland) Monroe Howland Hot/cold packs “Therapy for spasming muscles” Dr. Madison notes increased tone in legs with movement but no spasms. Medication for spasticity was discontinued years ago. Most households have an ice bag that can also be used with hot water for comfort. ABC cost, one-time purchase, $62 $35 $0 Hand massager and batteries “Stimulates flaccid muscles” This can be done by assistive personnel in conjunction with daily bathing and applying moisturizers to skin. Paralyzed muscles without enervation do not respond to massage by strengthening or becoming mobile and are not stimulated by massage, though local blood flow may increase. $75 $0 Lower leg splints, full arm splints “Reduce muscle spasticity” Spasticity will not be reduced by splinting and is often increased; prescribed medications for spasticity discontinued years ago, contractures are permanent according to Dr. Madison, range of motion and positioning will be adequate. Also duplicate item for AFOs, under Supplies. $94 $0 Vinyl-covered arm support “Elevates hand and arm in exercises” Can be done by assistive personnel during range of motion exercise, bathing, and dressing; no hardware needed for this $20 $0 $11,979 $18 TOTAL Howland $62 $10,609 $150 Grand Totals are summarized at the beginning of this report on page 5. Thank you for the opportunity to review this case. Please feel free to contact me at any time with questions or additional information. Cordially, Wendie A. Howland RN-BC MN CRRN CCM CNLCP LNCP-C Certified Nurse Life Care Planner Principal, Howland Health Consulting, Inc. 15 Lucy Adams November 9, 2010 16 Position Statement Education and Certification for Nurse Life Care Planners Status: Original Statement Authored by: American Association of Nurse Life Care Planners (AANLCP®*) and the Certified Nurse Life Care Planner (CNLCP®**) Certification Board *AANLCP® is a registered trademark of the American Association of Nurse Life Care Planners ® **CNLCP® is a registered trademark of the CNLCP Certification Board Purpose: This position statement serves as a resource for current, as well as prospective nurse life care planners, for identifying, exploring and promoting educational opportunities and nurse life care planning certification (CNLCP®). Statement of AANLCP® and CNLCP® Certification Board Position: The American Association of Nurse Life Care Planners (AANLCP®) and the CNLCP® Certification Board affirm that nurse life care planning is a nursing specialty practice that all nurse life care planners should actively promote through education and the attainment of certification. The American Nurses Association (ANA) recognizes that “all nursing practice, regardless of specialty, role, or setting, is fundamentally independent practice” (ANA Scope and Standards, 2010, p.24). Additionally, the registered nurse is responsible for assessing individual competence and is committed to the process of lifelong learning. Registered nurses develop and maintain current knowledge, skills and abilities through formal academic programs and continued education and seek certification when available in their areas of practice. As independent practitioners, registered nurses are individually accountable for all aspects of their practice (ANA Social Policy, 2010, p.30-31). The activities in which individual registered nurses engage in the total scope of nursing practice are dependent upon each individual’s education, experience, role, and the population they serve. (ANA, Scope and Standards, 2010, p.2) The primary role of the nurse life care planner is to develop a client specific lifetime plan of care utilizing the nursing process. The plan contains an organized, comprehensive, and evidenced based approach that estimates current and future healthcare needs. Also included, are the associated costs and frequencies of items and services, which can be utilized as a guide in various applicable sectors (e.g., private, medical-legal, case management). This specialty practice predates formalized training programs, certification and/or the formation of specialty organizations. It evolved from the case management, rehabilitation nursing and insurance sectors where the importance of proactive collaboration and coordination of continuum of care needs for the ill and injured were first recognized and implemented. Expanded knowledge regarding these needs emerged from consultation with interdisciplinary medical/ancillary teams, attorneys, and through participation in educational endeavors (e.g., seminars etc.) pertaining to the long-term treatment needs of the chronically Adopted by AANLCP® Executive Board and CNLCP® Certification Board on June 6, 2014. ill and catastrophically injured. Formalized educational programs/courses followed and now serve as the basis for training resources for nurses entering this specialty. Initial Education Numerous educational opportunities are available to nurses who are interested in entering the field of nurse life care planning. A structured introduction to the specialty practice of nurse life care planning is highly recommended. Various comprehensive courses are available. Continuing Education The AANLCP® annual conference, webinars, and the AANLCP® Journal of Nurse Life Care Planning provide educational opportunities for continued development of expertise within this nursing specialty. Ongoing education relevant to the field of nurse life care planning is considered a key element in the recertification process. While AANLCP® and the CNLCP® Certification Board do not recommend, nor endorse any one particular educational program, the following criteria should be considered when choosing life care planning educational endeavors: Educational Programs Universities, colleges, and for-profit, as well as not-for-profit organizations offer life care planning education. In assessing the value of any given program, the reputation and accreditation of the sponsoring institution should be considered along with the program’s course content. Nurse life care planning educational opportunities should be grounded in nursing science, which utilizes essential elements of the nursing process, critical thinking, and evidence-based practice. Advanced educational courses, which include application of clinical practice guidelines, outcomes evaluation and contribution to nurse life care planning research, should be considered as well. Program Directors and Instructors AANLCP® and the CNLCP® Certification Board recommend that nurse life care planning education programs be developed and presented by nurse life care planning educators in collaboration with other specialty practitioners such as physicians, therapists, attorneys, etc. The qualifications of the program directors and instructors should include a solid knowledge base in the application of the nursing process. Of further importance is actual nurse life care planning experience that incorporates the nursing process, the ability to articulate and substantiate care plan recommendations, and a proven track record within the specialty field of life care planning. Curriculum AANLCP® and the CNLCP® Certification Board recommend that A Core Curriculum for Nurse Life Care Planning and the CNLCP® Examination Content Outline (www.ptcny.com/PDF/CNLCP.pdf) be utilized as the framework for educational programs, as well as use of current resources in course material (e.g., peer-reviewed journal articles, medical and nursing texts). Courses of study vary in length; and, nurses are encouraged to choose a course of study that meets their professional needs and goals. Adopted by AANLCP® Executive Board and CNLCP® Certification Board on June 6, 2014. Certification In 1999, AANLCP® established the American Association of Nurse Life Care Planners Certification Board to develop and administer the Certified Nurse Life Care Planner (CNLCP®) certification exam. In 2009, The Certified Nurse Life Care Planner (CNLCP®) Certification Board was incorporated as a separate entity and is recognized by the AANLCP® as the Association’s certifying body. The goal of the CNLCP® Certification Board is to promote a level of expertise and professionalism in nurse life care planning. Nurse life care planners must meet the specified educational and nursing requirements in order to be eligible to earn the CNLCP® designation through examination or reciprocity. As with many clinical nursing certification programs, the CNLCP® credential is designed for those nurses who have demonstrated experience and knowledge within the specialty. Achieving CNLCP® certification is an expected goal for those who are committed to professional practice. Many life care planning educational programs offer a certificate of course completion; and, in some cases, evidence of having passed an examination relevant to the course material. Such certificates should not be confused with the nurse life care planner certification (CNLCP®) offered by the CNLCP® Certification Board, which is affiliated with the AANLCP®. Accreditation The CNLCP® Certification Board is in the process of obtaining accreditation through the Accreditation Board for Nursing Specialty Certifications (ABNSC, formally known as the American Board of Nursing Specialties or ABNS). Summary/Conclusion Nurse life care planning is a well-recognized specialty practice within the field of nursing. Standards regarding entry into this specialized field, certification and ongoing education opportunities are essential. Educational programs developed and taught by experienced nurse life care planners/educators, currently practicing in this specialty field, are preferable. AANLCP® supports certification through the CNLCP® Certification Board. This position statement is the outcome of extensive discussions and dialogue about the AANLCP® Scope and Standards of Practice and the AANLCP® Code of Ethics. Adopted by AANLCP® Executive Board and CNLCP® Certification Board on June 6, 2014. Resources: American Association of Nurse Life Care Planners, Standards of Practice, 2008, Salt Lake City, UT. American Association of Nurse Life Care Planners, Scope of Practice, 2011, Salt Lake City, UT. American Nurses Association, Nursing Scope and Standards of Practice, 2010, Silver Spring, MD. American Nurses Association, Nursing’s Social Policy Statement, 2010, Silver Spring, MD. Adopted by AANLCP® Executive Board and CNLCP® Certification Board on June 6, 2014. Adopted by AANLCP® Executive Board and CNLCP® Certification Board on June 6, 2014.
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