End-of-Life Decisions
- LAST REVIEWED: 22 April 2013
- LAST MODIFIED: 22 April 2013
- DOI: 10.1093/obo/9780195389678-0146
- LAST REVIEWED: 22 April 2013
- LAST MODIFIED: 22 April 2013
- DOI: 10.1093/obo/9780195389678-0146
Introduction
End-of-life decisions occur throughout the lifespan and involve many aspects of the dying process. As medical technology continues to advance and produce the ability to prolong life almost indefinitely, individuals and families are asked to make increasingly complex choices about what treatments best correspond to their conceptions of how they wish to die. Discussions may occur around issues of advance care planning (including living wills), use of life-sustaining medical treatments, hospice and palliative care, organ donation, and physician-assisted death. Such discussions may be held with family and health professionals and decisions made about how to handle care at the end of life in advance of a serious, life-limiting illness, and, at the other end of the continuum, when treatment aimed at a curing a serious illness is no longer effective. These discussions take place in a variety of health settings and social workers are often asked to facilitate the process particularly at critical decision points in serious illness. End-of-life decisions create a need for attention to medical aspects as well as to psychosocial consequences. In addition, decisions may be complicated by policy considerations, particularly about including health insurance and federal and state policies governing coverage. Social workers play pivotal roles in ensuring that informed consent has taken place and individuals and families have access to needed resources to improve quality of life at the end of life. They also have a duty to safeguard individuals’ rights to confidentiality and self-determination in end-of-life decisions. Regardless of the setting or immediacy of planning need, working with individuals and families who face end-of-life decisions a high degree of commitment and competency given the profound implications of decisions that affect life and death.
Textbooks
As of the early 21st century, only one textbook, Csikai and Chaitin 2006, has been published that specifically provides a social work perspective regarding end-of-life decisions. This book gives an ethical context and practical approach that social workers can utilize in practice with people facing end-of-life decisions. Case studies are used throughout the text to illustrate complex issues and practice approaches. Social work educators as well as practitioners will find that this book provides essential knowledge about bioethics and its importance in end-of-life decisions. In a text geared toward health care practitioners, Berzoff and Silverman 2004 offers comprehensive coverage to a range of issues encountered by end-of-life practitioners, including end-of-life decisions. The primarily social work chapter authors offer their expertise and practical approaches to be effective in work with people who are dying and their families. Werth and Blevins 2008 provides a good context for examining end-of-life decision making using a psychosocial perspective. This book contains chapters that address communication and end-of-life decisions and uses case narratives that give this book a personal touch. A medical perspective is offered by Quill 2001 in its analysis of medical, policy, and ethical aspects of end-of-life care decisions. A good foundational understanding of the perspectives and values that medical professionals bring into situations involving end-of-life decisions is provided. Lastly, social workers may find content about end-of-life decisions in a few edited social work textbooks that cover related areas where end-of-life decisions, such as in health social work (Gehlert and Browne 2011) and gerontology (Berkman 2006) and encountered. These texts include chapters that focus on end-of-life decisions or settings in which end-of-life discussions and decisions occur, such as hospice, palliative care and long-term care settings. Altilio and Otis-Green 2011 is the most recent comprehensive textbook devoted to palliative social work within which several chapters focus on end-of-life issues and decisions.
Altilio, T., and S. Otis Green, eds. 2011. Oxford textbook of palliative social work. New York: Oxford Univ. Press.
This is a comprehensive text designed for use by educators to prepare future social workers to address issues related to palliative care and direct practitioners as it provides a foundation for practice in this area. The book has a unique emphasis on the collaborative nature inherent in palliative care and, in addition, includes international perspectives.
Berkman, B., ed. 2006. Handbook of social work in health and aging. New York: Oxford Univ. Press.
DOI: 10.1093/acprof:oso/9780195173727.001.0001
A comprehensive compilation of chapters about a wide range of issues facing professionals working directly with older adults and their families or in policymaking or administration or in community agencies. This is a good reference volume for students, practitioners, and academics in the field of gerontological social work. It contains several chapters pertinent to end-of-life decisions.
Berzoff, J., and P. Silverman. 2004. Living with dying: A handbook for end-of-life healthcare practitioners. New York: Columbia Univ. Press.
A comprehensive resource exclusively focused on end-of-life care for healthcare practitioners who work with dying people and their families. It provides theory and evidence-based best-practice techniques including content covering the lifespan and addressing legal, ethical, spiritual, cultural, and social class issues in assessment and intervention in addition to topics related to interdisciplinary teamwork, supervision, and organizational aspects.
Csikai, E. L., and E. Chaitin. 2006. Ethics and end-of-life decisions in social work practice. Chicago: Lyceum.
This text provides a practical ethical base for social workers and connects contemporary concerns regarding end-of-life decisions with the field of bioethics. The authors include case studies to show the complex end-of-life decisions faced by patients, families, and health care workers and methods for dealing with challenging decisions and negotiations between patients, families, and healthcare workers. This text is concise teaching resource that social work educators and students will find useful.
Gehlert, S., and T. A. Browne, eds. 2011. The handbook of health social work. 2d ed. Hoboken, NJ: Wiley.
A handbook designed for health social workers that covers the diverse aspects of working in the field of health care. It provides a foundational guide for practice, policy, and program development in many health social work settings. Chapters on working with older adults, nephrology, end-of-life care, pain and palliative care, and oncology would be most helpful to social workers assisting with end-of-life decisions.
Quill, T. E. 2001. Caring for patients at the end of life: Facing an uncertain future together. New York: Oxford Univ. Press.
DOI: 10.1093/acprof:oso/9780195139402.001.0001
Quill uses his clinical experience caring for severely ill patients and their families to illustrate the challenges and potential of end-of-life care. Communication issues including delivering bad news, discussing palliative care, and exploring the wish to die are discussed. The book is bolstered by Quill’s strong commitment to forthright discussions with patients and families and mutual decision making, and it provides a foundation to understanding decisions from a medical perspective.
Werth, J. L., and D. Blevins. 2008. Decision-making near the end of life: Issues, developments, and future directions. New York and London: Taylor & Francis/Routledge.
This edited text provides a comprehensive overview of developments that have had an influence on decision-making processes within the field of end-of-life care. Underlying issues such as public attitudes and bioethics provide a foundation for exploration of various aspects of end-of-life choices and decision making, including communication, advance directives, and the emergence of hospice and palliative care services. Case studies and first-person stories help with the unique approach of this text.
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