Beliefs, death, anxiety, denial, and treatment preferences in end-of-life care: a comparison of social work students, community residents, and medical students

This study examined cultural and religious beliefs, death anxiety, denial, and medical treatment preferences in end-of-life care in a sample of social work students, community residents, and medical students in a mid-western city of 49,000. Results indicated that most social work students, community residents, and medical students preferred palliative as opposed to life-prolonging care during terminal illness. The three groups differed in cultural and religious beliefs and all three reported a moderate amount of death anxiety. Students reported less denial of terminality than community residents. Implications for personal and professional preparation to provide end-of-life care are discussed.     

Facilitating Forgiveness and Peaceful Closure

Abstract

The importance of addressing psychosocial concerns with dying patients is pivotal to facilitating peaceful closure in end-of-life care. The social worker's role in recognizing and providing skilled, psychosocial intervention with patients and families in hospice programs is significant. In this article, the literature in this area is examined and a case example of a hospice patient's need for closure and the responsive social work intervention for the patient in his moment of death is provided. The case offers social work knowledge and skills and demonstrates the therapeutic benefit of addressing psychosocial needs in end-of-life care. The importance of targeted training and continued skill development for social workers in end-of-life treatment settings is emphasized.     

End-of-Life Care and Social Work Education

Summary

Social workers are major service providers to people who are facing end-of-life issues including the terminally ill and their families. Yet, exemplary models for social work education and intervention methods are limited in rural states. A statewide survey conducted in Kentucky found only two social work courses dedicated to end-of-life care currently being offered by accredited undergraduate and graduate institutions. Another statewide survey found that many hospice social workers are relatively inexperienced and have a need and desire for more education on death, dying and loss. Also, unique cultural, economic and geographic areas, such as Appalachia are enigmas when it comes to the provision of end-of-life care. This partnership provides a varied perspective on delivery of end-of-life care services with an emphasis on social work interventions and education.     

The Attitudes of Social Work Students Toward End-of-Life Care Planning

This study examined the attitudes of social work students toward end-of-life care planning, as well as their degree of willingness to engage in this area of social work practice. Factors associated with their attitudes were measured through structured surveys completed by 102 social work students (N = 102) at a school of social work in the southeast. Results indicated that these social work students tended to have positive attitudes toward end-of-life care planning in general. Moreover, these attitudes were positively associated with preference for pain relief treatment, higher levels of comfort when discussing death, more emphasis on self-determination, and apprehension of conflicts of self-determination. The results of this study underscored the increased societal need for recognition of personal preferences in end-of-life care, higher levels of comfort when discussing death, and an increased commitment of social workers' to maintaining the ethical principle of the client's right to self-determination in end-of-life planning. While this is not surprising, it points to a continuing need to re-assess where the field stands in its preparation of social work professionals who will work closely with people who are dying and their families.     

Zelda Foster and Her Contributions to Social Work in End-of-Life Care

ABSTRACT

This article is both a memoir of one social worker's professional collaboration with Zelda Foster and a tribute to Zelda's legacy in the form of an educational resource on end-of-life care. It reviews achievements of Zelda Foster in social work practice and teaching related to death and dying. Resources presented in this article were supported by the Soros Foundation's Project on Death in America, a funded grant project to which Zelda contributed. The end-of-life care education, training and informational tools discussed in this article are examples of ongoing efforts in the social work profession to improve the lives of the dying and bereaved.     

Hospice and Latinos

Abstract

Research on hospice use by Latinos, although increasing since the late 1990s, remains sparse. This article presents a review of the recent available literature on this topic within the past 15 years. The main aspects discussed are access to hospice care and various factors that researchers suggest affect Latino utilization of hospice care. These factors include beliefs about health care, death and end-of-life care, lack of insurance, lower referral rates by health care professionals and the hospice caregiver requirement. Overall, Latinos underutilize hospice but the reasons remain unclear. No evidence exists to indicate that Latinos are dissatisfied with services once they receive them. Also, no evidence exists to indicate they want services but cannot obtain them. Implications for social work practice and research are discussed.     

Advance Care Planning Throughout the End-of-Life

Abstract

Advance care planning throughout the end-of-life is an increasingly important aspect of professional practice with older adults and their families. As the nation's population continues to live longer, more and more people will experience years of functional and cognitive decline prior to death. This article discusses the growing importance of advance care planning using a long-range, holistic perspective of examining care needs throughout the end of life. End-of-life care is conceptualized by three trajectories of decline leading to death, with about two-thirds of all older adults succumbing to four key conditions: congestive heart failure, emphysema, frailty, and dementia. Research regarding the advance care planning needs of older adults with the key conditions is presented. Further research is needed to enhance social work practice in this area.     

Educating Our Future Colleagues: Creating an MSW Palliative Care Practicum

As the number of older adults and those with chronic medical conditions continues to rise, the need to train social work students in palliative and end-of-life competencies becomes critical. To address this growing need, the social work team at a large urban academic medical center in the Midwest developed an MSW concentration practicum in palliative and end-of-life care. During the practicum, students receive immersive training in palliative care social work values and the skills required for these specialized assessments, interventions, and evaluations. Their training culminates in their participation on an interdisciplinary team to provide psychosocial support to patients and families receiving palliative and end-of-life care throughout the medical center. This article describes the curriculum, practice immersion, training manual, teaching modules, and structure of student supervision which is applicable to and adaptable for other palliative care social work field instructors.     

End-of-Life Conversations and Hospice Placement: Association with Less Aggressive Care Desired in the Nursing Home

Education about end-of-life care and treatment options, communication between family and health care providers, and having advance directives and medical orders in place are important for older adults with chronic, progressive decline and end-stage disease who spend their last days in the nursing home. This study used retrospective data (6 months before death) of long-stay nursing home decedents (N?=?300) taken from electronic health records to capture the end-of-life experience. Findings showed for almost all decedents, Do Not Resuscitate and Do Not Intubate orders were in place, and just over one-half had Do Not Hospitalize and No Artificial Feeding orders in place. A small proportion had No Artificial Hydration or No Antibiotic orders in place. Overall, there was congruence between documented medical orders and treatment received. Findings showed that use of hospice and discussions about particular life-sustaining treatments each had significant associations with having less aggressive medical orders in place. These results can inform best practice development to promote high quality, person-directed, end-of-life care for nursing home residents.     

Professional Social Work Education in End-of-Life Care

Abstract

Social work education in both BSW and MSW level courses is missing vital content about end-of-life care, palliative care, and bereavement. End-of-life care training opportunities through continuing education programs have also been limited. This deficit is significant because a vast number of social workers are already confronted with end-of-life issues on a daily basis in a variety of practice settings. Through the Project on Death in America, Social Work Leadership Development Awards initiative, many programs and models for professional social work education and training in end-of-life care have been developed and are presented in this article. These include: end-of-life care courses, symposia, training manuals, certificate programs and fellowships. Although the curricula continue to be refined, many of these programs are available to practitioners to advance their knowledge and skills and their curricular models are available to social work educators for possible replication.     

Pediatric Palliative and End-of-Life Care

Abstract

Pediatric oncology social workers are often engaged in the psychosocial care of dying children and their families. Despite their participation on the interdisciplinary team, the role for social work in pe-diatric palliative and end-of-life care has not been clearly defined. This survey of 131 pediatric oncology social workers identified current and best social work practices for care of children and their families at the end of life. Implications for practice, education, and research are discussed.     

A Good Death for Residents of Long-Term Care

Abstract

Little research has been done on the topic of end-of-life care in long-term care settings to identify important themes regarding end-of-life care structures, processes, and outcomes. This study utilized data gathered in a stratified, random sample of 437 family members of residents who died in 31 nursing homes (NHs) and 199 residential care/assisted living facilities. Structural components of care including staffing adequacy, training, and consistence as well as facility environment and size were important factors for family members interviewed. “Being there” and manner of care delivery (e.g., staff attitudes/empathy) were major elements in the process of care. These factors were mentioned more than direct care, Hospice, or resident preferences. Family members identified themes of [dying at] home and being comfortable and clean as important outcomes of care. These identified structural components, processes, and outcomes have implications for the role of social workers in these settings despite that social work support is notably absent in these findings.     

Setting an Agenda for Social Work in End-of-Life and Palliative Care

Abstract

This article describes leadership efforts within social work to promote, enhance, and shape the future of social work practice, education, and research in end-of-life and palliative care. The background and outcomes of the Project on Death in America, Open Society Institute's Social Work Leadership Development Award Program, and the 2002 Social Work Leadership Summit on End-of-Life and Palliative Care are reviewed.     

Social Work and End-of-Life Care

Abstract

This paper reviews the professional literature with respect to the social work profession's involvement in end-of-life care. The search process was conducted by entering key words in various combinations to electronic databases. Eligible articles were required to address one of the following: roles and activities of social workers in providing end-of-life care; core principles valued by social workers in the provision of end-of-life care; and barriers to provision of effective end-of-life care. The literature from 1990 through July 2004 was searched most rigorously. Based on this review, suggestions for where the profession of social work should focus its energies are offered. These key areas include focusing on generating empirically-based knowledge for practice and policy analysis and developing a system of social work education that addresses the unique knowledge and skills needed to participate in end-of-life practice as competent and informed professional practitioners. Current initiatives with regard to critical areas are summarized.     

Developing Practice Tools for Social Workers in End-of-Life Care

Abstract

This article describes the National Association of Social Workers' (NASW) strategies for providing social workers with important practice and policy information about palliative and end-of-life care. With funding from a Soros Foundation's Project on Death in America grant, NASW developed practice standards, a Web-based continuing education course, and drafted a new policy statement to guide social workers in end-of-life care practice. The article provides an in-depth view of the development and scope of these resources for professional social workers.     

“Res Ipsa Loquitur” … It Speaks for Itself … Social Work—Values,Pain, and Palliative Care

Abstract

Despite the mandated and moral imperative to advance linguistic competence in all health care contexts, leadership that addresses this area of practice and study in end-of-life and palliative care is not readily obvious. Because social work is ideally suited to lead efforts to advance linguistically-accessible end-of-life and palliative care, social workers are encouraged to assume the challenge. This article focuses on topics that are elementary yet central to discussions on language diversity and leadership initiatives to advance language access in end-of-life and palliative care contexts: importance and function of language, extent of language diversity, inequity related to language diversity, mandates and standards related to language access, and approaches and competencies that contribute positively to language access.     

Social Workers' Personal Death Attitudes,Experiences, and Advance Directive Communication Behavior

Abstract

This research surveyed 29 social workers to examine their personal death attitudes and experiences in relation to their advance directives communication practice behavior. The study measured death attitudes on 5 dimensions: fear, avoidance, neutral, approach, or escape acceptance of death. Participants' personal experiences with terminal illness and death were also assessed. Advance directive communication practices were operationalized as 7 phases: initiation of the topic, disclosure of information, identification of a surrogate decision-maker, discussion of treatment options, elicitation of patient values, interaction with family members, and collaboration with other health care professionals. Findings suggest that social workers' advance directive communication behavior differs by practitioners' death attitudes and experiences. Implications for social work education and professional development are discussed.     

All Aboard

Abstract

Social workers in all practice areas have the potential to contribute to the National Agenda for Social Work Research in Palliative and End-of-Life Care. The purpose of this article is to invite social work practitioners and researchers to identify research needs and work with others to address them. We offer a conceptualization of the broad scope of social work's involvement in end-of-life issues, and articulate the difference between end-of-life care and end-of-life issues in social work. Suggestions are offered to advance the national research agenda.     

Differences by Race in Social Work Students’ Social Distancing,Treatment Options,and Perceptions of Causes of Mental Illness

ABSTRACT

Research has shown that racial and cultural differences are related to the degree of social distancing associated with mental illness, beliefs about what causes mental illness, and what treatment options are best; however, there is little information on how this may manifest in social workers’ perceptions of these issues. This cross-sectional survey analyzed the differences in perceptions by race of 835 students enrolled in social work classes in the United States. Results indicated that individuals who self-identify as African American/Black expressed the greatest social distance concerning mental illness. Whites were most likely to endorse the use of medication and were least likely to normalize mental illness. The most frequently endorsed mental health provider varied according to racial/ethnic groups. Our findings show that future research may be needed to further investigate the conceptualization of the role of social work among different groups. The need for self-reflection and keeping biases in check are discussed as implications for social work practice and education. Suggestions for working with diverse clients, including religious diversity, are offered as well.