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.     

Preferences and Expectations for Delivering Bad News Among Korean Older Adults

ABSTRACT

 The purpose of this study was to explore Korean older adults’ perspectives toward physicians’ disclosure of serious illness to patients. Seventy Korean older adults residing in the community were interviewed in person using a semistructured interview guide. Major themes included conflicting desires among participants to: 1) inform the patient directly, 2) inform the patient indirectly, and 3) inform only the family. Subthemes under the first theme included: a) decision making about treatment, b) planning and preparation for the future, c) need for use of an ethical standard, d) consideration of patient coping responses, and e) disclosure of serious illness as a relational process. Disclosure of bad news is more than revealing or concealing information. Needs and preferences regarding to what extent and how information is delivered differ by culture. Thus, understanding preferred communication pathways for advanced care planning in specific cultural frameworks is important. Future studies using clear concepts and measures about serious illness disclosure can better prepare health care professionals in interacting with those from minority cultures. In addition, studies of those with poor health status from diverse cultural groups may further assist social workers to tailor interventions to accommodate cultural needs and expectations in end-of-life settings.     

Long-Term Planning and Decision-Making Among Midlife and Older Gay Men and Lesbians

Abstract

This article examines the issues of long-term planning and decision-making among midlife and older gay men and lesbian caregivers. Using a qualitative methodology, in-depth interviews were conducted with 19 gay men and lesbians over 50. Participants reported on their long-term planning and decision-making processes. All but four persons reported that their partners had advance directives, but the majority of caregivers did not have advance directives for themselves. Concerns about informal family dynamics and interactions with formal systems were expressed, along with financial and ownership issues. It is important for social workers to intervene across individual, organizational, and community levels in advocacy for the needs of older gay men and lesbian clients.     

Advance care planning throughout the end-of-life: focusing the lens for social work practice

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.     

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.     

Advance Elder Care Decision Making

Abstract

Advances in modern technology have resulted in increasing health care options. Unfortunately, many adults do not think about health and end-of-life decisions until they are faced with a health crisis or long-term care issues. The lack of planning has left many families devastated and overwhelmed by the decisions they face on behalf of their loved ones. Social workers and other professionals are observing family members who are ill-prepared for the decisions they have to make and the roles that they undertake as a result of the failing health of an older relative. The Advance Elder Care Family Planning model (AECFP) is designed to empower families before they face these problems.     

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.     

“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.     

Advance Directives Among Korean American Older Adults: Knowledge,Attitudes, and Behavior

The study objective was to explore knowledge, attitudes, and behavior about advance directives and how cultural values influence these beliefs. Three focus groups with 23 Korean American older adults were conducted. Advance directives were seen as helpful for ensuring that preferences for unwanted end-of-life treatment are honored and for relieving the decision-making burden on family members. However, some viewed completing advance directives as contrary to focusing on living. Culturally competent education about advance directives for Korean American older adults is necessary to help them make informed decisions about end-of-life care and informing family and health care providers of these preferences.     

Care of Older Adults in Iceland: Policy Objectives and Reality

ABSTRACT

We examine the implementation of the Icelandic government's policy on formal care of older adults in Iceland. The policy as expressed in legislation and other policy documents is to ensure access of older adults to the appropriate level of health and social care services. How does the actual level of formal care compare with the policy objectives? Does there exist an implementation deficit, and if so, why? We address the question by analyzing Icelandic and international statistical databases. The findings reveal a gap between the aims of the current policy and its delivery. As elsewhere in the Nordic region, the policy allows for the emphasis to be on home-care services in which the individual's needs are assessed comprehensively. Administrative problems and insufficient resources to better understand and explain the problem are identified. Current steps to address the problem include the necessity of a comprehensive evaluation of the level and quality of elder-care services in Iceland, which would help compensate for the shortcomings of the existing public statistical databases. In future research, it is necessary to analyze how services can be coordinated while increasing responsiveness to the voices of older adults and their relatives on the care of older people.     

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.     

Compassion Fatigue and the Adult Protective Services Social Worker

Compassion fatigue is a relatively new term that describes the symptoms that are experienced by social workers and other helping professionals who work with clients experiencing trauma. This article defines the concept of compassion fatigue and relates compassion fatigue to Adult Protective Services (APS) social workers. It is proposed that APS social workers may be susceptible to the deleterious effects of compassion fatigue due to the nature of their work and environment. Suggestions for avoidance of compassion fatigue are also discussed, including self-care strategies and the need for continuing education regarding this phenomenon.     

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.     

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.     

The Effect of Housing on Perceptions of Quality of Life of Older Adults Participating in a Medicaid Long-Term Care Demonstration Project

Summary

As the nation struggles with the great increase in the numbers of older adults, many questions arise about how to provide housing and long-term care options that will ensure the quality of life of older adults. This study demonstrates that older adults and their families perceive quality of life more positively once moved from a nursing home to an assisted living facility using Medicaid funds. Results of this exploratory study are promising and suggest that having housing options available across the continuum of care with individualized case management offers older     

A green social work perspective on social work during the time of COVID‐19

COVID‐19 has challenged social workers to engage with health pandemics and provide essential services in conditions of uncertainty and high risk. They have safeguarded children, older adults and diverse adults in ‘at risk’ groups under tough conditions mediated by digital technologies, adhered to government injunctions, maintained social and physical distancing under lockdown and worked from home remotely. Social workers and social care workers have risen to the challenges, providing services with inadequate personal protective equipment and limited supervision and support. This article highlights the degraded physical environments, socio‐economic and political contexts that intensify precariousness and constraints that neoliberalism imposed on professional capacity before and during this health pandemic. It provides guidelines to protect practitioners and service users. It concludes that practitioners ought to understand zoonotic diseases, environmental concerns, acquire disaster expertise and training, widen their practice portfolio and value their contributions to this pandemic. Key Practitioner Message: ? Develop technological skills and innovate to support stressed individuals, safeguard children, adolescents and elders and deal with poverty and unemployment; ? Use digital technologies involving peers to explore tricky situations, examine ethical dilemmas through scenario building exercises, and tips for self‐care; ? Contribute to environmental protections that prevent the spread of zoonotic diseases like COVID‐19; ? Seek supervision and support for disaster‐based training from your line manager.     

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.     

“They Don't Want to Hear Us”

Abstract

This study used focus groups to understand Hispanic elders' and adult children's concerns about end-of-life planning. Ten older persons participated in the elders group, and ten adult children in a separate group. Themes in both groups included communication, control, burden, spirituality, religious issues, and importance of family relationships. Communication regarding end-of-life planning was of particular importance to both elders and adult children. The most striking indication of the challenges in communication about end-of-life issues is the insistence by both the elders and the adult children that their children/parents do not want to have these discussions.     

Advance directives among korean american older adults: knowledge, attitudes, and behavior

The study objective was to explore knowledge, attitudes, and behavior about advance directives and how cultural values influence these beliefs. Three focus groups with 23 Korean American older adults were conducted. Advance directives were seen as helpful for ensuring that preferences for unwanted end-of-life treatment are honored and for relieving the decision-making burden on family members. However, some viewed completing advance directives as contrary to focusing on living. Culturally competent education about advance directives for Korean American older adults is necessary to help them make informed decisions about end-of-life care and informing family and health care providers of these preferences.