![]()
Introduction
We are in the midst of transformative change in the palliative and end-of-life care fields. In this book, we describe a paradigm shift that involves a movement away from a highly medicalized, technocratic focus on disease diagnosis and treatment of illness and toward a more humanistic approach to relational care needs in the context of lived communities of persons with shared goals, meanings and cultural practices. This conceptual framework requires a careful balance among three factors: personal decision making by and among seriously ill individuals and families, universally recognized rights to health and health care, and the goals of justice and efficiency in general health care systems. Such a balance demands the most rigorous examination of our moral relationships and ethical principles of self- and community governance to assure a humane society in which values of equity, adequacy, and decency are honored.
This book grows out of the November 2009 Conference of the Collaborative for Palliative Care of Westchester County and the New York State Southern Region (āthe Collaborativeā). It was originally published as Volume 7, No. 1 (January-March 2011) of the Journal of Social Work in End of Life and Palliative Care. Selected contributions from this conference and by Collaborative members who participated in the conference planning have been included in this book. These contributions reflect several overarching themesācollaboration, ethics, decision making, pain and suffering, spirituality, costs, and an ecological turn to interprofessional social work.
The Collaborative is a consortium of about 50 public and private organizations and volunteers dedicated to improving care of the seriously ill through education, research and advocacy, and has been recognized nationally as a leader in palliative care education. It has assumed a leading role in shaping this important public discourse and vision for our future health care as we start the second decade of this millennium.
This book fills a serious gap in the health care literature on palliative and end-of-life care by emphasizing the integrative role of social work in palliative systems of care. Social workers serve multiple roles in facilitating access to and delivery of health care as clinicians, trustees and fiduciaries, counselors, negotiators and mediators, care coordinators, advocates, researchers, educators, ethics committee members, and change agents for progressive social action. In carrying out these responsibilities in consonance with their professional ethical code, social workers are well-equipped to act as interdisciplinary team leaders, and provide social, emotional and spiritual support to patients, families and their colleagues in the health professions in navigating the complex health systems, especially in serious illness and at the end of life. Social workersā sensitivity and attunement to the social ecology of health, well-being and decision making in which seriously ill patients and their caregivers are embedded heighten their capacities for empathy and humanistic care.
The development of the Collaborative and the critical role it has played in building community assets to improve palliative and end-of-life care are described in the opening chapter of this book. Dobrof and colleagues discuss the importance of grassroots leadership in the founding of the Collaborative and the defining of its mission. The strong transdisciplinary character of the project is highlighted, as well as the focus on bridging policy, practice and research. The authors also provide information about the diverse types of work in which the Collaborative is engaged, and report on results from an evaluation of the Collaborativeās development process. The members of the Collaborative have made a clear commitment to professional education and training to improve the quality of palliative and end-of-life care for persons who are seriously and terminally ill. Each of the chapters in this book is devoted to a priority area identified by the Collaborative for professional education and training.
One key area is pain management and the relief of suffering. The articles by Morrissey and by Stanley and Hurst, in particular, build on this seminal work.
In her writing on the phenomenology of pain and suffering, Morrissey provides an interdisciplinary perspective on expanding consciousness of pain and suffering as a basis for a more humanistic, person-centered practice with older adults at the end of life. Drawing on phenomenological methods and thinkers, Morrissey elaborates a humanistic framework for approaching the complexity of pain and suffering with a specific focus on agency, obligation, and ethical choice in end-of-life decision making, In an area that has been understudied, Morrissey describes suffering as radically different in character than other illness experiences.
Stanley and Hurst examine narrative methods for understanding the meaning of illness, suffering, and death in end-of-life and palliative care, and for understanding the ways in which both patients and families and health professionals can find meaning in their own experience in the face of serious illness. Like Morrissey, Stanley and Hurst explore narrative methods as an alternative to the scientific, explanatory paradigm for understanding human experience. They discuss narrative competence skills of attention, representation and affiliation, and suggest how they may be used to approach the seriously ill and dying patient and create a sense of community.
A second area is developing inter-professional educational programs in advance care planning and end-of-life decision making. Social work professionals, physicians, nurses and lawyers have supported the need for ongoing training in this area, especially in view of changes in law and regulation. Several articles in this volume make important contributions to this body of knowledge.
In view of the importance of education and training for social workers in end-of-life planning, Bomba and colleagues provide a comprehensive overview of an evidence-based model of shared medical decisionāmaking in New York State called Medical Orders for Life-Sustaining Treatment (MOLST). The MOLST Program is based upon a national paradigm called Physician Orders for Life-Sustaining Treatment or POLST. Very little has been written in the social work literature on this important paradigm. The MOLST Program and its development and implementation in New York are discussed in the context of landmark state enactments formally recognizing family health decision making and mandating end-of-life counseling for terminally ill patients. The key role of social work in effective communication and conflict resolution at all stages of process in working with patients and families is discussed. Data are also reported on an evaluation of an interprofessional ethics training curriculum.
Bullock adds a critical component to the study of advance care planning and end-of-life decision-making by identifying the important role of cultural and racial variations in attitudes, values, and outlooks. Drawing on transcripts of focus groups and individual interviews, Bullock identifies core value and belief differences among Black and White community dwelling residents that influence end-of-life planning and decision making in areas such as spirituality and religion. Bullock also recommends education to strengthen cultural competency, a core social work value, in end-of-life and palliative care.
Finally, a third major focus of collaboration for professionals in end-of-life care has been interfaith practice and the issues of religion and spirituality. This is explored in the chapter by Kenneth J. Doka, well known for his work on counseling, bereavement and spirituality near the end of life, and his focus on assessment and intervention is essential to social work practice.
We close this book with an Afterward in which we reflect on the vexed issue of health care costs in end-of-life and palliative care. In this analysis we focus on legal, organizational and communication barriers to reasonable end-of-life care decision-making that inhibit just and appropriate efforts to contain health care costs. In particular, we underscore the challenges involved in evaluating marginally beneficial treatments at the end of life. We believe that cost-containment and the respect for individual rights and dignity of dying patients need not be incompatible. One key to humane policy and practice is to provide timely information concerning palliative care planning and options and to overcome the remaining barriers to access to high quality palliative care services. In this effort, social work in collaboration with other health care professions and community leaders has a vital role to play.
It is our hope that this book will stimulate continued discussion among social work professionals and colleagues in other disciplines about compelling concerns in ethical end-of-life decision making for those who are seriously ill and the professionals who serve them.
Mary Beth Morrissey and Bruce Jennings
![]()
Building on Community Assets to Improve Palliative and End-of-Life Care
Judith Dobrof
Cancer Support Team, Mamaroneck, New York, USA
Janna C. Heyman
Fordham University Ravazzin Center on Aging, West Harrison, New York, USA
Reva M. Greenberg
Collaborative for Palliative Care, Scarsdale, New York, USA
In this article, the authors describe the development of a multidisciplinary, interfaith, grassroots community group of professionals and laypersons who have created a replicable model to enhance palliative and end-of-life care. The Collaborative for Palliative Care leverages existing community assets and capacities within the health and social service programs of Westchester County, New York, resulting in a unique public-private partnership. It has played a critical role in changing the culture of care for residents of Westchester who are faced with the challenges of serious and terminal illness.
From its inception, the Collaborative for Palliative Care has taken a leadership role in raising awareness of the benefits and challenges of providing quality care for the seriously and terminally ill. With its mission of educating professionals, patients, and family caregivers, the Collaborative has been a forum that provides leadership as well as identifies and supports leaders in the health care community who are developing innovative palliative care programs and services for individuals and families.
Development of the Collaborative
The idea for a community effort to strengthen palliative and end-of-life care in Westchester County, a suburb just north of New York City, emerged from the 2003 āElderboomā conference in which participants focused on the aging of Westchesterās population and the need for enhanced health care services for individuals with serious and terminal illnesses. In that same period, the Westchester County Department of Senior Programs and Services developed a report in preparation for the 2005 White House Conference on Aging that recommended: (a) increasing efforts to better coordinate health care services for those with serious illness; and (b) a strengthening of services focused on advocacy and practical help for patients and families in relationship to pain management and end-of-life decision-making. A partnership was formed that recognized the need to develop an interdisciplinary and interfaith county-wide committee to continue working on palliative care and end-of-life concerns. The demand for better health and psychosocial care of the seriously ill was on the rise in the County, as well as nationally, as individuals, families, and professionals were faced with complex health-related issues.
Therefore, over a span of 4 years and three conferences, the Collaborative has become a leader in educating the community on palliative and end-of-life care. Conference titles and number of attendees are listed in Table 1. Initially, a small group of approximately 10 professionals met to explore how they could work on these issues; however, today the Collaborative is composed of over 40 community and governmental organizations. This diverse group includes, among others, the areaās five hospice organizations, many of the hospitals and home care agencies in Westchester, community-based nonprofits, and concerned citizens who are interested in raising awareness of the benefits of quality palliative care.
Table 1 Collaborative Palliative Care Conferences |
October 2006 |
Can We Talk? Westchesterās First Interdisciplinary and Interfaith End-of-Life Conference
175 attendees |
April 2008 |
Stand by Me: The Palliative Care Concept and Approaches
250 attendees |
November 2009 |
A Team of Partners in Palliative Care: Challenges and Choices in Ethics of Care at End of Life
475 attendees |
April 2011 |
Carpe Diem: The Impact of Palliative Care on Practice, Policy and Essential Conversations
425 Attendees |
Collaborative membership continues to grow as it leads annual conferences, offers community educational programming, advocates at a state and national level and, in general, highlights the importance of quality care for seriously and terminally ill individuals. Although it has grown in size, it remains a grassroots initiative, focused on bringing together people of diverse professions, interests, and backgrounds who work together to enhance health care in the Westchester community. Its mission is the following:
The Collaborative for Palliative Care is a broad-based consortium of community organizations and volunteers dedicated to improving care of the seriously ill through creating, supporting and mobilizing education, research, and advocacy for compassionate palliative and end-of-life care.
We provide opportunities for individuals, professionals, caregivers, families and friends across multiple delivery systems to share information and resources and build knowledge and capacities.
We aim to continue development of information platforms through an annual conference, community satellite programs, the Internet[;] and alliances with research, educational, and service institutions to enrich the quality of life for people facing chronic and life-limiting illnesses.
The Role of Leadership in Enhancing Care
As a grassroots group developed from the interests of professionals in the health and social service communities, the Collaborative grew through a model of āasset-based community developmentā (Kretzmann & McKnight, 1993). By focusing on the āgifts, skills and capacitiesā (p. 3) existing in the community, the Collaborativeās founders began a process of identifying the established community leaders who could begin the work of developing an educational forum focused on palliative and end-of-life care. Thus, the founders initially invited executive directors, administrators, and program directors of nonprofit and government agencies, practitioners and academicians well-known for their expertise, as well as others interested in palliative and end-of-life care. Over time, these early members invited others to join and the Collaborative expanded to include other organizations such as those that are faith-based or focused on advocacy. In addition, members identified physicians, nurses, social workers, lawyers, and other practitioners āon the front linesā who offered palliative care or other services to seriously ill individuals. The Collaborative grew from a group of formal community leadersāthose that were recognized for their leadership in the area of palliative careāto one that was also comprised of practitioners and administrators at all levels of the hierarchy in their respective organizations that were taking the initiative to improve the quality of care for the seriously ill.
Collaborative members recognized the benefit of including m...
