End-Of-Life Care

This research Web page resource focuses on end-of-life care. Although end-of-life care is often closely connected with medical services and facilities, social workers, with our history of home-based and family-oriented services, have been in the forefront of end-of-life services whether through hospice care or in nursing homes, hospitals, and emergency waiting rooms. Social workers advise families about residential alternatives, facilitate links to financial resources such as Medicaid, case-manage the multiple providers in complex situations, and counsel families who at times may be geographically distant from their dying relative.

With the increasing numbers of aging individuals and the increases in life expectancy of the very old, society finds that many of the supportive persons relating to these aging individuals are also elderly. Although end-of-life care is often thought to be synonymous with geriatric services, it also focuses on sudden death, unexpected illness, and anticipated death from illnesses at earlier ages, including childhood. A systemic approach to end-of-life care addresses not only the identified client, but also the family and other caregivers, including the professionals involved.

Life’s ending usually brings about issues of grief and bereavement, and grieving often begins before the actual death of a loved one and continues beyond the death. Increasing attention to end-of-life care also may focus on palliative care and pain management. However, the topic of concern here is primarily focused on that which occurs during the time before death. This Web page provides an overview of social work-related research into issues involved in endof-life care and decision making. A list of Web site resources and social work-related research publications is provided.

NASW is involved in a number of initiatives regarding end-of-life care. A December 2004 Practice Update, Social Workers in Hospice and Palliative Care Settings, provides an overview of social work practice in this arena as well as references and resources. The update cites Csikai and Raymer’s (2003) description of social work competencies: “Specialists in end of life care should possess generalist skills such as resource linkage, case management, and advocacy, as well as advanced skills such as conducting bioethics consultations, assessment and management of pain and suffering; and resolution of ethical problems in end of life care.” The update also calls forth the NASW Code of Ethics obligation to give “particular attention to the needs and empowerment of people who are vulnerable, oppressed, and living in poverty” (NASW Code of Ethics, 1999, p. 1). NASW’s Policy Statement regarding end-of-life decisions is centered on the principle of self-determination. Upholding this principle in times when clients’ decision-making capacity may be severely limited and competing decision-making forces are often involved, can raise many ethical issues. It is at these times that the professional social worker’s access to professional standards of care, guided by an established code of ethics and based on empirical research and grounded practice theory, provides an immeasurable resource to individuals and to society (Social Work Speaks, 2003).

Efforts to Increase Research and to Translate Findings

National Association of Social Workers
In addition to the Practice Update, Ethics Code, and Policy Statement noted above, NASW provides a number of other resources.

NASW Press devoted the entire issue of the February 2004 Health and Social Work journal to end-of-life issues. The following is from the editorial introduction to that issue:

End-of-life care is not a new arena for social workers who historically have provided care for dying individuals and their families in a variety of settings. What is new is that end-of-life care is finally receiving the attention that it deserves. This special issue, which contains seven articles, is testimony to the growing recognition that the final phase of a person's life has enormous implications for the individual, his or her family, and the community and should be addressed and supported by established policies and programs. It also confirms the central role of social work to this specialized field's ongoing development.¹

NASW offers an online continuing education program, Understanding End of Life Care: The Social Worker's Role, through it’s WebEd feature, which can be found at http://www.naswwebed.org/

NASW Standards for Social Work Practice in Palliative and End of Life Care (2003) outlines 11 standards of care. This publication can be found online at http://www.socialworkers.org/practice/bereavement/standards/default.asp or hard copies may be ordered through this site. The Guiding Principles include this perspective:

Social workers have unique, in-depth knowledge of and expertise in working with ethnic, cultural, and economic diversity; family and support networks; multidimensional symptom management; bereavement; trauma and disaster relief; interdisciplinary practice; interventions across the life cycle; and systems interventions that address the fragmentation, gaps, and insufficiency in health care. These are critical areas for implementing change in palliative and end of life care.

Social workers also have expertise in analyzing, influencing, and implementing policy change and development at local, state, and federal levels that can be used to make important improvements in the care of patients living with life-limiting illness and the dying. Social work research in the care of the dying is also developing and addressing many previously overlooked areas of end of life care, such as issues concerning ethnic, cultural, and economic diversity, substance abuse, incarceration, interventions at different life cycle stages, problem-solving interventions, and intervention in community contexts.²

Project on Death in America Social Work Leadership Development Awards
The Soros Foundation Open Society Institute’s Project on Death in America (PDIA) has involved many social workers in generating and translating research. Among the outputs of the PDIA has been the creation of Social Work Leadership Awards to promote innovative research and training projects that reflect a collaboration between schools of social work and practice sites that will advance the ongoing development of social work practice, education, and training in the care of the dying. These awards promote the visibility and prestige of social workers committed to end-of-life care and enhance their effectiveness as academic leaders, role models, and mentors for future generations of social workers. www.swlda.org provides more information on these awards.

In releasing a new publication in October 2004, Transforming the Culture of Dying: The Project on Death in America 1994-2003 , the following announcement addressed the PDIA purpose as

…an ambitious goal: to help transform the experience of dying in the United States . Over the course of nine years, PDIA created funding initiatives in professional and public education, the arts and humanities, research, clinical care, and public policy. PDIA and its grantees have helped build and shape this important and growing field, and have placed improved care of the dying on the public agenda. PDIA’s report… includes specific funding recommendations that focus on areas of special opportunity where philanthropic investment at any level would make a dramatic difference in reducing suffering and allowing people to live out their lives in dignity and comfort. Over the past decade, foundations have had an enormous impact on the development of palliative and end-of-life care services in the United States . Thanks to grantmakers across the country, people with life-threatening illnesses are now more likely to be cared for by healthcare professionals—nurses, clergy, social workers, and doctors—trained in pain management, knowledgeable about advance care planning, and respectful of how religion or culture can affect a patient’s experience of illness and dying. Caregivers and patients are learning that isolation, pain, and inadequate care need not define the dying process. ³

This report includes numerous Web page resources relating to research, education, and policy. Click on the Web site below and scroll to pp. 66 – 67.

Social Work Summit on End-of-Life and Palliative Care
The March 2002 National Social Work Summit on End-of-Life and Palliative Care was convened at Duke University in North Carolina . Implementation of the Summit recommendations combined with output from the PDIA social work leaders produced a scope of practice consensus-building projects, multiple educational programs, five published books currently used as texts in universities and practice sites, over 200 publications, three special series/issues in preparation, and 50 program and research grants. The collective PDIA Social Work Leaders have established palliative and end-of-life care as a specialty area within the social work profession. It is now one of four major initiatives for the profession’s national organizations and is an essential component of all graduate-level social work programs.

http://www.soros.org/initiatives/pdia/articles_publications/publications/transforming provides more information on the Social Work Summit on End-of-L ife and Palliative Care.

National Institutes of Health
The National Institutes of Health (NIH), in announcing a State-of-the-Science Conference on Improving End-of-Life Care on December 6-8, 2004 , provided the following background on this societal issue.

Improvements in medical science and health care have gradually changed the nature of dying. Death is no longer likely to be the sudden result of infection or injury, but is now more likely to occur slowly, in old age, and at the end of a period of chronic illness. As a result, a demographic shift is beginning to occur that will include an increase in the number of seriously ill and dying people at the same time that the number of caregivers decreases. To meet this challenge, the best that science can offer must be applied to guarantee the quality of care provided to the dying.

The 1997 publication of the Institute of Medicine report “Approaching Death: Improving Care at the End of Life” triggered a series of activities to improve the quality of care and the quality of life at the end of life. Notable among these activities, the National Institute of Nursing Research (NINR), part of the National Institutes of Health, began a series of research solicitations that focused on issues related to the end of life. Topics of the NIH initiatives have included: the clinical management of symptoms at the end of life; patterns of communication among patients, families and providers; ethics and health care decision making; caregiver support; the context of care delivery; complementary and alternative medicine at the end of life; dying children and their families; and informal caregiving. Research initiatives by the Robert Wood Johnson and Soros Foundations have also advanced the field. The purpose of this conference is to examine the results of these many efforts and to evaluate the current state of the science.⁴

End of Life References

These references are listed by year of publication, starting from the most recent. They were selected to demonstrate the range of issues relating to end-of-life care. Several articles do not present recent findings, but do present reviews of research and/or discuss the need to further research.

Validation of the Health Care Surrogate Preferences Scale
Julia W. Buckey, Neil Abell. (2004, July). Social Work, 49 (3),432.
Recent advances in health care technology have increased the number of health care decisions made by acute care patients and those who act on their behalf, known as health care surrogates. This study reports on the validation of a new measure, the Health Care Surrogate Preferences Scale. Designed to assess the willingness of adults to perform and convey the duties required to communicate patient preferences, the scale offers a promising tool for use by social workers in health care settings. Development, evaluation, application of the new measure, and future research needs are discussed.

Factors that Influence Consideration of Hastening Death among People with Life-Threatening Illnesses
Elizabeth Mayfield Arnold. (2004, February). Health & Social Work, 29(1), 17.
This study examined factors that contribute to consideration of hastening death among people with life-threatening illnesses. A discriminant function analysis was conducted to determine what factors distinguished between people who had self-identified as either contemplating or not contemplating hastening their deaths. Of the variables examined, depression, social support, and hope distinguished between the two groups. Pain and anxiety appeared to play no role in distinguishing between the two groups. The results are presented and implications for social work practice and research are discussed.

Nurses' and Social Workers' Attitudes and Beliefs About and Involvement in Life-Sustaining Treatment Decisions
Perla Werner, Sara Carmel ,& Hanna Ziedenberg. (2004, February). Health & Social Work, 29, (1), 27.
Data were collected from 213 nurses and 61 social workers at major hospitals across Israel . Whereas nurses reported being more involved in the daily care of terminally ill patients, social workers reported being more involved in discussions with patients and family members. Nurses were more willing than social workers to use artificial feeding and less willing to use mechanical ventilation and CPR for all conditions. Social workers expressed stronger beliefs about their involvement in end-of-life issues. These findings, which reflect the differences in the professional values and experiences of both groups, encourage the use of interdisciplinary teams to improve end-of-life decision making.

Social Workers' Participation in the Resolution of Ethical Dilemmas in Hospice Care
Ellen L. Csikai. (2004, February). Health & Social Work , 29 (1), 67.
A sample of hospice social workers with no direct access to a hospice ethics committee (N= 110) was surveyed regarding ethical issues in hospice care, how the issues were managed, and the extent to which social workers participated in resolution of ethical dilemmas. Common issues discussed were the patients’ medical condition, family involvement, and family denial of terminal illness. Social workers were most involved in traditional social work activities, such as providing knowledge of community resources and patients' psychosocial histories and promoting self-determination in policies.

Oncology Social Workers' Attitudes toward Hospice Care and Referral Behavior
Becker J. E. (2004, February). Health-and-Social-Work, 29(1), 36-45.
Members of the Association of Oncology Social Workers completed a survey, which included the Hospice Philosophy Scale (HPS) assessing the likelihood of the worker referring a terminally ill patient to hospice, and the social worker’s background, experience, and demographics. The respondents held overwhelmingly favorable attitudes toward hospice philosophy and care, yet the average proportion of terminally ill patients whom they referred to hospice was only 49.5 percent. A worker's HPS score was related significantly, although weakly, to the likelihood of referral. A follow-up study was undertaken to determine the reasons for the discrepancy between the workers' self-reported favorable attitudes toward hospice and their relatively low rate of patient referral. The factor identified most frequently was resistance from families because of the requirement that hospice patients discontinued active treatment.

Complexity of Decision-Making in a Nursing Home: The Impact of Advance Directives on End-of-Life Care
Osman, H. & Becker, M. A. (2003). Journal of Gerontological Social Work, 42 (1), 27.
Since the Patient Self-Determination Act became law in 1991, nursing homes routinely address advance directives with all residents. This study investigated the implementation of end-of-life care wishes of residents in one nursing home in Florida . Data were collected from the medical records of residents who died in the facility (n = 75) in one year. Two-thirds of the residents had either completed a living will or designated a health care decision-maker, and 90.7 percent of the residents had do-not-resuscitate orders. Findings suggest that in 94 percent of the cases advance directives were followed, and that professional social work activities contributed to the high rate of compliance.

Death Does Not Become Us: The Absence of Death and Dying In Intellectual Disability Research
Stuart Todd. (2002). Journal of Gerontological Social Work, 38 (1/2), 225.
This paper reviews the issues of death and dying from the viewpoint of sociological research and seeks to identify the ways death and dying have been treated within the research literature on living with intellectual disability. The social issues of death, dying, and bereavement represent important but neglected research areas, and such issues need attention both for practical reform and for deciphering what living with intellectual disability entails. The difficulties which life poses for people with intellectual disabilities may well persist in the times before and after death. As research issues, they offer not only potential practical significance, but also a means of determining the social status and value of people with intellectual disabilities. It is suggested that these issues have been discounted with some important consequences for the way intellectual disability is perceived. Important areas for research in this arena are highlighted.

Euthanasia: Israeli Social Workers' Experiences, Attitudes and Meanings
Ronit D. Leichtentritt. (2002, June). British Journal of Social Work, 32 (4), 397.
Sixteen social workers in Israel were interviewed about their experiences with and attitudes towards various forms of euthanasia, as well as the meanings they ascribe to them. Using phenomenological analysis, seven themes were identified, emphasizing individual, interpersonal, organizational, social, and therapeutic considerations, and suggesting a holistic and integrative structure of the phenomenon. The themes were arrived at by identifying distinctions and similarities between different forms of euthanasia. Two themes suggesting similarities were revealed: “diminishing the value of life” and “a call for help.” Three themes were found to distinguish between passive euthanasia (withholding and withdrawing life-sustaining treatment) and active forms (active euthanasia and assisted suicide): “legality,” “social acceptance,” and “concern for the sick and dying.” The last two themes distinguished between withholding treatment and assisted suicide, on the one hand, and withdrawing treatment and active euthanasia, on the other: “the involvement of others as executor” and “the publicity of the act.” Further research and training is required to better inform social workers in this ethical area. Given their unique position, social workers should participate in legal, social, and therapeutic discussions concerning end-of-life decisions for the benefit of clients, their families, and health-care providers.

Social Work Gerontological Assessment Revisited
Barbara J. Berkman, Peter Maramaldi, Emily A. Breon, & Judith L. Howe. (2002). Journal of Gerontological Social Work, 40 (1/2), 1.
Research has learned much in the past 40 years about the factors critical in a gerontological social work assessment. However, assessment must be constantly readdressed, because the context of health care changes and the research technology that enables the study of factors critical to the assessment process become more sophisticated. This paper presents the evolution of assessment research and identifies critical assessment factors as related to the changing social work practice in the context of the country's changing health care environment.

A Qualitative Inquiry into the Psychosocial and Spiritual Well-Being of Older Adults at the End of Life.
Doctoral Dissertation. University of Kansas , PhD, Aug. 2002.
A qualitative study based on interviews with 16 terminally ill older adults with a high level of quality of life and their caregivers was conducted to examine the meaning of psychosocial and spiritual well-being during the final months and the process to attain it. Six primary contributing components to their psychosocial and spiritual well-being were identified: (1) a sense that life has been complete and fulfilling, (2) a comforting physical environment, (3) meaningful relationships, (4) pursuing activities of interest, (5) spiritual transcendence, and (6) hopes for the future. The findings highlight different ways that these elders grounded their resiliency: confrontation with mortality, relationships with others, environmental resources, creation of life narratives, balanced perspectives of their illnesses, and spirituality. The author urges the profession to envision social work with terminally ill older adults beyond a viewpoint of coping and adaptation. Implications link the re-conceptualization of quality of life and identified areas of resiliency.

Analyzing End-of-Life Care Legislation: A Social Work Perspective.
Roff, S. (2001).Social Work in Health Care, 33(1), 51-68.Several policy approaches are currently being considered in an attempt to organize a national response to the crisis surrounding quality end-of-life care. Recent health care efforts aimed at supporting individuals facing advanced illness are marked by debate over assisted suicide, untimely referrals to hospice care, inconsistent adherence to advance directives, and substantive amounts of unrelieved pain in the end of life. Social workers require a clear understanding of the current political and social climate if they are to navigate the ethical dilemmas as they are presented in end-of-life care. This article discusses recently proposed policy response to the various political and social controversies surrounding end-of-life care for individuals facing advanced illness. The analysis suggests criteria for evaluating end-of-life policy in general and offers a framework for evaluating proposed legislation. Suggestions for making end-of-life policy more effective and areas for future research are proposed. Finally, the implications of this policy analysis for social work are delineated.

Values Underlying End-of-Life Decisions: A Qualitative Approach
Leichtentritt, R. D & Rettig, K. D. (2001, August). Health and Soci al Work, 26(3), 150-159.
The purpose of the study discussed in this article was to reveal the values that would receive priority attention when considering end-of-life decisions. Nineteen elderly Israelis and their 28 family members participated in individual interviews that were analyzed using a hermeneutic phenomenological method. Analysis of the transcripts indicated that participants considered a unique set of value priorities that raised different considerations in each of four domains of life: physical-biological, social-psychological, familial, and societal. Three transcendent values crossed all four life domains: dignity, quality of life, and quality of death. These value considerations are useful information for social workers who consult patients and family members at times of end-of-life decisions.

Death and Dying and the Social Work Role
Katharine Hobart. (2001). Journal of Gerontological Social Work, 36 (3/4), 181.
Hobart examines social work's expanding role in death and dying discussions with clients. In a variety of settings, particularly within health care, social workers are educating clients about advance directives as well as being involved in end-of-life medical decision-making discussions. The author explores some of the issues that have been identified through research as part of this complicated process.

Advancing Social Work Practice in End-of-Life Care
Christ, G. H & Sormanti, M. (1999). Social Work in Health Care, 30(2), 81-99.
Insufficient training of health professionals has often been cited as a major barrier to improving the system of care for dying patients and for the bereaved. Although specific problems have been identified for physicians and nurses, the problems of social work in this substantive area have only recently been explored. This study used a practitioner survey, focus groups, and a survey of social work school faculty to broaden the information base. Results suggested that, not unlike the professions of medicine and nursing, social work knowledge and skill development in the care of the dying is uneven and not integrated sufficiently with theoretical concepts and research. Social workers felt unprepared for this work by their master's level training and unsupported by continuing education programs. They recognized few social work scholars who could function as role models by providing comprehensive training, knowledge building, innovation, and advocacy. A program for leadership development was created to test new approaches to professional development in the care of the dying and the bereaved.

Standardized Screening of Elderly Patients' Needs for Social Work Assessment in Primary Care: Use of the SF-36
Barbara Berkman, Susan Chauncey, William Holmes, Ann Daniels, et al. (1999, February). Health & Social Work, 24 (1), 9.
Fewer hospitalizations and decreased lengths of stay in the hospital have resulted in an increased need for extensive support services and continuing care planning for elderly people in primary care. Early identification of elderly patients needing community and hospital non-medical services is necessary so that timely, appropriate services can be delivered. This study addresses the issue of whether a standardized health-related quality of life questionnaire, the SF-36, can be used independently as a screen predicting primary care elderly patients' needs for social work assessment. In addition, the question of what scales on the SF-36 a social worker would use to screen patients in need of assessment is explored.

What Families Know about Funeral-Related Costs: Implications for Social Work Practice Mercedes Bern-Klug, David J. Ekerdt, & Deborah Schild Wilkinson. (1999, May). Health & Social Work, 24 (2), 128.
This study was undertaken to determine the knowledge and experience level of people responsible for funeral and cemetery arrangements and to investigate factors affecting familiarity with final costs. Results reported here suggest that social work's role be expanded to provide basic information about local final arrangement (funeral and burial) options and costs. Survey responses from 163 survivors of older adults in Kansas City showed that adult children play an important role in the final arrangements of a parent and that half the survivors responsible for final arrangements had no idea what to expect in terms of costs.

Factors that Influence Elders' Decisions to Formulate Advance Directives
Moore, Crystal Dea & Sherman, Susan R. (1999). Journal of Gerontological Social Work ,31 (1-2), 21.
Twenty low-income community-dwelling seniors participated in interviews regarding end-of-life decision-making related to the completion of advance directives such as living wills and health care proxies. The participants overwhelmingly evaluated the completion of advance directives as positive.

Preserving End-Of-Life Autonomy: The Patient Self-Determination Act and The Uniform Health Care Decisions Act.
Galambos, C. M. (1998, November). Health-and-Social-Work, 23(4), 275-281.
As medical technology continues to advance and health care choices become more complicated, the preservation of end-of-life autonomy is an increasingly important issue faced by various client populations. This article examines two legislative efforts aimed at preserving end-of-life autonomy, the Patient Self-Determination Act and the Uniform Health Care Decisions Act. The enactment of both acts will provide a more comprehensive approach to advance directive planning. The article advocates for passage of the Uniform Health Care Decisions Act in all 50 states. Implications for social work practice are discussed from a research, community action, and clinical perspective.

Early Release as an End of Life Option for Prisons
Griffin , L. W & Rohrer, G. E. Arete (1994, Fall). 19(2), 1-14.
This article reports the findings of a national study that examined the delivery of prison health care to the increasing numbers of inmates likely to experience terminal illnesses while incarcerated. Data for the study were collected from 50 states, the Washington , D.C. Department of Corrections, and the U.S. Bureau of Prisons. Results indicate that corrections facilities use a wide variety of health care settings, which range from the prison hospital to community hospitals, to treat terminally ill inmates. Living wills, health care powers of attorney, and No Code/Do Not Resuscitate orders are options available in most prison medical settings. A noteworthy finding was that 85 percent of the nation's correctional facilities make use of early release or parole as an end–of-life option. Implications for social work practice and policy are presented.

Perceptions of Parental Competence While Facing the Death of a Spouse
Siegel, K., Raveis, V. H., Bettes, B., Mesagno, F. P., Christ, G., & Weinstein, L. (1990, October). American Journal of Orthopsychiatry, 60(4), 567-76.
The death of a parent in childhood constitutes a profound psychological trauma that threatens children's normal emotional and social development. Healthy parents' perceptions of their competence to meet children's needs during the terminal illness of the other parent were measured on five major domains of parent-child relationships and parental functioning central to children's healthy development. Significant declines from pre-illness competence were perceived, of which the greatest were emotional sensitivity and responsiveness and ability to set limits and impose discipline. Implications for the development of preventive intervention strategies are discussed.

¹Health-and-Social-Work. 29(1): 46-54, Feb 2004.
²Retrieved from http://www.socialworkers.org/practice/bereavement/standards/default.asp on 10/15/04
³Retrieved from http://www.soros.org/initiatives/pdia/articles_publications/publications/transforming_20040922 on 10/8/04.
⁴Retrieved on 10/7/04 from http://consensus.nih.gov/ta/024/endoflifeintro.html#geninfo