Managing in the Trenches of Consumer Care: The Challenges of Understanding and Initiating the Advance Care Planning Process

To better understand how community-based long-term care providers define advance care planning and their role in the process, we conducted 8 focus groups with 62 care managers (social workers and registered nurses) providing care for Ohio's Medicaid waiver program. Care managers shared that most consumers had little understanding of advance care planning. The care managers defined it broadly, including legal documentation, social aspects, medical considerations, ongoing communication, and consumer education. Care managers saw their roles as information providers, healthcare team members, and educators/coaches. Better education, resources, and coordination are needed to ensure that consumer preferences are realized.     

Advance Care Planning in the Delivery of Adult Protective Services

ABSTRACT

In ensuring the safety and protection of older adults from abuse and exploitation, adult protective services (APS) workers face a variety of situations involving serious illness and end-of-life conditions. Many older adults encountered in APS will present with one or more chronic conditions that may warrant discussion of advance care planning with clients and their families. This study surveyed APS workers (n = 508) in 21 states regarding encounters with end-of-life situations and the practice of future care planning. Results revealed that three-fourths of APS workers encounter clients with serious illnesses and about two-thirds do discuss planning in advance for care. More than one-half of the respondents indicated client incapacity and refusal to address future care needs as barriers to discussing planning in advance for care. Recommendations to enhance advance care planning among APS workers are discussed.     

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.     

A Time and Place: The Role of Social Workers in Improving End-of-Life Care

Americans are living longer, but dying after a prolonged period of management of multiple chronic illnesses and functional disabilities. Despite waves of public and professional activity targeted toward improving care for the dying and supporting the families, gaps in care and challenges in end-of-life care persist. Contentious issues such as the so-called “death panels” or physician payment for discussion of advance directives and care wishes at the end of life; aid in dying; and regarding individuals who actively choose death (case of Brittney Maynard) are continually debated in the public media. Progress toward improvement in the experience of dying remains incremental and change has been slow. With the release of a second Institute of Medicine (2014 Institute of Medicine (IOM). (2014). Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: National Academy Press. [Google Scholar]) report devoted to what it means to die in America in the 21st century, momentum and opportunity for change may increase. If this is to happen, social workers will need to deliver the range of biopsychosocial care that patients and families so desperately need. However, holistic care of the individual will only improve, if the nation also addresses ongoing systemic problems in financing, policy, and service delivery in end-of-life care.     

The Influence of Sociodemographic and Psychosocial Factors on Advance Care Planning

This study investigated sociodemographic and psychosocial factors that enhance or impede the completion of advance care planning, analyzing data from the Health and Retirement Study. The analytic subsample included the panel participants who died between 2006 and 2010 and who had answered the psychosocial and lifestyle questionnaire when they were alive. Multinomial logistic regression was executed to answer the research question (N = 1,056). The study found that persons who were older, who were women, who identified themselves as White, and who had higher levels of income and education were more likely to be motivated to complete advance care planning. Having greater sense of control was found to weaken the adverse relationship between being African American and the completion of advance directives. Having cancer, suffering from the illnesses for longer periods of time, and having experience of nursing home institutionalization also predicted the completion of advance care planning. Implications include incorporating a culturally tailored approach for racial/ethnic minorities and using advance directives that are clear and easily understood. In addition, future research needs to include a larger minority population and examine the extent to which variations between racial/ethnic groups exist in relation to advance care planning.     

Barriers Associated with the Implementation of an Advance Care Planning Program in a Prison Setting

Advance care planning is considered a best practice within health care. However, the extent to which planning occurs within prison settings is unknown. Through the course of implementing an advance care planning (ACP) program for aging and dying offenders at a medical classification center, multiple barriers were identified that need to be addressed systemically to ensure the medical wishes of offenders were known and honored. This article will outline the barriers and the steps that were taken to create systems change to promote and sustain advance care planning.     

Advance Care Planning with Residents in Nursing Homes in Singapore

With an aging population, the government is allocating more resources in the care of the elderly. Hospitalization may not be a natural desire of the sick nursing-home resident. Advance care planning is explored as a strategy to promote the right site of care, defined here as the most appropriate place that patients can receive treatment by medically competent teams at the lowest possible cost (Khaw, 2007). Advance care planning, when practiced with residents in nursing homes, comes with unique challenges, which this paper will illustrate. This paper also presents the multiple roles of a social worker in advance care planning and concludes with factors that contributed to effective advance care planning facilitation.     

End-of-Life Preparations among Lesbian,Gay, Bisexual,and Transgender People: Integrative Review of Prevalent Behaviors

Proactively making end-of-life (EOL) preparations is important to ensure high quality EOL care. Critical to preparation is the discussion of preferences with one’s primary health care providers. Lesbian, gay, bisexual, and transgender (LGBT) people often experience discrimination from health care providers that will detrimentally affect their ability to communicate their care preferences. Structural barriers, such as those based on sexual orientation and gender identity, may impede timely and quality care when one is most in need. The aim of this study was to examine the prevalence of EOL preparatory behaviors among LGBT people, with particular focus on transgender individuals. Eight survey instruments with 30 prevalence estimates found in the literature were analyzed. EOL discussions between LGBT people and their primary health care providers were rare (10%). Transgender people were found to be even less prepared for EOL; they were 50–70% less likely than their LGB counterparts to have a will, a living will or to have appointed a healthcare proxy. A need exists for future mixed-methods research focused on LGBT populations accompanied by the cultural sensitivity needed to ensure their wishes are honored at the EOL.     

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.     

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.     

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.     

Beliefs,Death Anxiety,Denial, and Treatment Preferences in End-of-Life Care

Abstract

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.     

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.     

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.     

Allowing Family to be Family: End-of-Life Care in Veterans Affairs Medical Foster Homes

The Medical Foster Home program is a unique long-term care program coordinated by the Veterans Health Administration. The program pairs Veterans with private, 24-hour a day community-based caregivers who often care for Veterans until the end of life. This qualitative study explored the experiences of care coordination for Medical Foster Home Veterans at the end of life with eight Veterans’ family members, five Medical Foster Home caregivers, and seven Veterans Health Administration Home-Based Primary Care team members. A case study, qualitative content analysis identified these themes addressing care coordination and impact of the Medical Foster Home model on those involved: (a) Medical Foster Home program supports Veterans’ families; (b) Medical Foster Home program supports the caregiver as family; (c) Veterans’ needs are met socially and culturally at the end of life; and (d) the changing needs of Veterans, families, and caregivers at Veterans’ end of life are addressed. Insights into how to best support Medical Foster Home caregivers caring for Veterans at the end of life were gained including the need for more and better respite options and how caregivers are compensated in the month of the Veteran’s death, as well as suggestions to navigate end-of-life care coordination with multiple stakeholders involved.     

Family Caregiving and the Site of Care: Four Narratives About End-of-Life Care for Individuals with Dementia

Little is known about end-of-life care for individuals with Alzheimer’s disease and other dementias. Four case studies are presented, using data collected by qualitative interviews conducted with family caregivers who were closely involved with end-of-life care for relatives with dementia. The case studies are formatted in two pairs, with one reflecting two deaths occurring at home and the other pair representing two deaths in the nursing home. The cases reveal a range of end-of-life experiences, suggesting that there is not just one “good” path. The extent of care needed, the responsiveness of the individual, the health of the caregiver(s), and the residence and support situations, can all intersect in a variety of ways that make no one scenario the answer for all. Although most people say they would prefer to die at home, in some situations the nursing home can be a satisfactory choice, particularly if hospice is involved. These narrative case studies give the reader insight into the variety of the end-of-life experiences and suggest the environment should be considered as part of the care provision.     

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.