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Introduction
Mercedes Bern-Klug
This book is dedicated to the idea that people who live in nursing homes can thrive even as they approach the end of their lives. Not only can nursing home residents thrive, but nursing homes should be designed to maximize the human potential for thriving. Excellent physical care is necessary, but it is not enough. In order for people to thrive in any setting, psychological and social needs must also be met.
The book is based on the understanding that more effort is needed to improve the quality of life in America's nursing homes; psychosocial issues are a key component of quality of life; palliative care is a philosophy of care that emphasizes quality of life and psychosocial issues; all nursing home residents deserve access to excellent palliative care, whether or not they are recognized as "dying" per se; and social workers have skills that can help transform the nursing home setting into a palliative-care setting that honors psychosocial, including spiritual needs and thus honors the whole person. Maximum quality of life cannot be achieved if psychosocial concerns go unaddressed.
While all nursing home staff members have a hand in identifying and addressing psychosocial issues, this book invites social workers to demonstrate leadership in nursing home palliative-care needs. The book chapters can be used to help prepare nursing home social workers for an active role in transforming the nursing home setting into one in which palliative care and psychosocial care are enhanced. This book builds on the work of many practitioners, scholars, and organizations devoted to improving care for people approaching the end of life, including the Institute of Medicine's Committee on Care at the End of Life and their report "Approaching Death: Improving Care at the End of Life" (Field and Castle 1997); the Institute for the Advancement of Social Work Research's final report and blueprint for action, "Evaluating Social Work Services in Nursing Homes: Toward Quality Psychosocial Care and its Measurement" (Vourlekis, Zlotnik, and Simons 2005); the Social Work Hospice and Palliative Care Network, "Charting the Course for the Future of Social Work in End-of-Life and Palliative Care"; the National Association of Social Workers (NASW), "Standards for Social Work Services in Long-Term Care Facilities" (NASW 2003) and the "NASW Standards for Practice in Palliative and End-of-Life Care" (NASW 2004); the National Commission for Quality Long-Term Care's series of reports; and the National Consensus Project for Quality Palliative Care. The latter developed "Clinical Practice Guidelines for Quality Palliative Care" (2004) which articulated eight domains of quality palliative care. These domains were developed to apply across disciplines, settings of care, and age groups. The evidence upon which the domains were developed derives mainly from the nursing and medical literatures. In this book, we examine key concepts from these eight domains as they apply to how social workers can help to address psychosocial issues facing older adults in the nursing home setting. The eight domains of quality palliative care include:
1. Structure and processes of care2. Physical aspects of care3. Psychological and psychiatric aspects of care4. Social aspects of care5. Spiritual, religious, and existential aspects of care6. Cultural aspects of care7. Care of the imminently dying patient8. Ethical and legal aspects of care
The book has been organized as a step toward building social work capacity in palliative psychosocial care in the nursing home setting. The underlying assumption is that social workers' effectiveness in extending the reach of palliative care in nursing homes -- either through direct practice, administration, supervision, policy practice, or research -- benefits from a broad overview of the issues that affect interdisciplinary nursing home practice. The first chapters build understanding in these areas. The book then turns to the situation facing residents, families, and staff as the end of life draws near and highlights ways in which nursing home social workers can apply their knowledge and skills to enhance the experience of living and dying. The book concludes with a chapter on future challenges and opportunities likely to affect the nursing home setting, with an eye toward the specific issue of psychosocial care at the end of life.
Specifically, chapter 1 (written by the editor) provides a review of key conceptual developments in understanding end-of-life and palliative care vis-à-vis the nursing home setting and provides definitions of key concepts used in the book. These concepts include the idea of dying trajectories, the palliative-care framework, an explanation of psychosocial issues, and an overview of the practice of nursing home social work. In chapter 2, the nurse-scholars Dr. Sarah Thompson (a former hospice nurse) and Lisa Church describe the relationship among structure, process, and outcome in terms of quality of care and then apply these concepts to the nursing home setting. Their chapter includes material related to the quality psychosocial care. In chapter 3, Mike Klug, with a background in legal and technical writing related to Medicare, provides a brief explanation of nursing home care financing as a backdrop to explaining the Medicare hospice benefit, a program that can connect residents and families with additional resources at the end of life.
After providing a brief overview of the development of nursing homes, chapter 4 (written by the editor) provides background information on the characteristics of contemporary U.S. nursing homes and of the residents who receive care there. In chapter 5, the palliative-care physician Ann Allegre provides an explanation of medical concerns affecting many nursing home residents as the end of life draws near. Her chapter was written to be accessible to readers with little or no medical background. In chapter 6, the former nursing home social worker and current gerontological social work scholar Dr. Jean Munn describes the psychosocial needs of nursing home residents with advanced chronic illnesses and discusses social work interventions to address these concerns. The social worker's role with the family is the focus of chapter 7. It is written by Dr. Patricia Kolb, gerontological social worker and sociologist, who devotes part of this chapter to the need for cultural competence when working with families at the end of life in the nursing home setting. In chapter 8, the physician and public-health scholar Dr. Charles Gessert and the bioethics attorney Don Reynolds present an introduction to ethical issues as a backdrop to their argument that we need to reconsider the meaning of the principle of autonomy when dealing with people with advanced chronic illness. Especially when working with residents affected by cognitive impairment, they explain that taking a "best interest" approach toward end-of-life decision making can help support the family as medical interventions are considered.
Chapter 9, written by the social worker Peggy Sharr and the editor has two sections. In the first, Sharr discusses the importance of rituals and rites of passage related to the death of residents and weaves in examples of what practicing nursing home social workers report their nursing homes are doing to honor the death of residents. In the second, the editor provides information and ideas that social workers can use to help residents and families understand funeral-related options and costs in their local area. In chapter 10, the issue of bereavement among staff members, including the social worker, is addressed by the social workers Sara Sanders and Patti Homan. Dr. Sanders, a former hospice social worker and current gerontological scholar who works in the area of dementia, and Dr. Homan, grief and loss program director, build a case for prevention of burnout and compassion fatigue for nursing home staff members. The last chapter (written by the editor) looks toward the future and speculates on factors that will compete to enhance or diminish the experience of living and dying in the nursing home in the coming decades. Together, these chapters have been designed to broaden and deepen the practice of nursing home social work and to extend the reach of palliative care, especially palliative psychosocial care, to people facing advanced chronic illness in nursing homes.
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