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 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.     

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.     

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.     

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.     

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.     

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.     

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.     

Social workers' personal death attitudes, experiences, and advance directive communication behavior

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.     

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.     

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.     

Preparation of youth in congregate care for independent living

This paper reports on findings from a qualitative study that focused on the quality and adequacy of preparation of youth in congregate care for independent living. This study, conducted in New York, NY, USA, explored the extent to which youth feel prepared to leave care and the opportunities they are given to participate in planning and decision‐making regarding issues that personally affect their future. Interviews were conducted with professionals and young adults who had exited foster care after placements in congregate care settings. Both professionals and young adults stated concerns about the quality of independent living preparation. Many young adults stated that they were not ready to live independently and expressed concerns about failure of staff to begin preparing youth sufficiently in advance of their discharge dates. Young adults also reported limited opportunities to participate in the planning and decision‐making processes affecting them. Recommendations for improvement of independent living preparation are proposed.     

Developing a Palliative Radiation Oncology Service Line: The Integration of Advance Care Planning in Subspecialty Oncologic Care

Within radiation oncology, there is often minimal attention on radiotherapy with palliative benefits due to the overlying focus on curative treatments. Historically at the University of Pennsylvania, advanced-stage patients are cared for by cancer site-specific teams rather than a more rapid treatment service model that focuses on patients’ symptom needs and larger clinical issues within a palliative framework. Thus, the University of Pennsylvania created a designated palliative radiation oncology team to focus on the complex medical and relational issues of metastatic cancer patients. Social workers play a critical role in patient and family conversations about advance directives, care needs, and end-of-life goals and fears as treatment regimens and outcomes continue to unfold. The palliative radiation oncology social worker developed and instituted a new, formalized assessment tool called the “palliative radiation oncology psychosocial care plan” in the electronic medical record. A retrospective analysis of 26 palliative radiation oncology patients under treatment between February and August 2016 was conducted. Of these patients treated with palliative radiation, 19% completed an advance directive after the social work intervention. This model highlights advance care planning as a best practice and encourages end-of-life discussions as a routine part of the oncology workflow.     

Planning for future research participation: Ethical and practical considerations

This paper addresses the concept of advance planning for future research participation during episodic or permanent decisional incapacity. First, the concept and its historical origins are described. Second, the concept's ethical justifications are presented. Third, commentary raising ethical and practical concerns about advance research planning is discussed. The paper concludes with the author's views on advance research planning and on the relevant recommendations of the National Bioethics Advisory Commission.     

Does Volunteering Experience Influence Advance Care Planning in Old Age?

Advance care planning (ACP) increases the likelihood patients will receive end-of-life care that is congruent with their preferences and lowers stress among both patients and caregivers. Previous efforts to increase ACP have mainly focused on information provision in the very late stage of life. This study examines whether a relationship exists between volunteering and ACP, and whether this relationship is associated with social support. The sample comprises 877 individuals who were aged 55+ in 2008, and were deceased before 2010. The sample is derived from seven waves (1998–2010) of data from the Health and Retirement Study. Logistic regression results showed that overall ACP and durable power of attorney for health care (DPAHC) were both higher (OR = 1.61 and 1.71, respectively) for older adults with volunteering experience in the past 10 years than those without such experience. Available social support (relatives and friends living nearby) was not associated with the relationship between volunteering and ACP. Other factors related to ACP included poorer health, death being expected, death due to cancer, older age, and being a racial minority. Involving older people in volunteer work may help to increase ACP. Future research is encouraged to identify reasons for the association between volunteering and ACP.     

The living-dying interval in nursing home-based end-of-life care: family caregivers' experiences

Guided by concepts from the living-dying interval ( Pattison, 1977 ) this study sought to explore family members' experiences with a dying nursing home resident. In-depth interviews were conducted with 31 caregivers of residents who had died. Interviews were audiotaped and transcribed. Themes that illuminated families' experiences on the living-dying interval were: an acute medical crisis (trigger events, accumulation of stressors, level of care crisis); the living-dying phase (advance care planning, hospitalization, end-stage decisions); and the terminal phase (beginning of the end, awareness of dying). The results illustrate critical periods for social work intervention with families of dying nursing home residents.     

Linguistic competence/language access services (LAS) in end-of-life and palliative care: a social work leadership imperative

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.     

Making a connection: school engagement of young people in care

Intervention to improve educational attainment for children in out‐of‐home care is increasingly being recognized as important for their well‐being and future opportunities. This paper reports on a mixed method study of the school engagement or connectedness of young people in care. The study comprised a survey of 202 young people in care in Queensland, Australia, and a matched comparison group of young people not in care, plus interviews with a subset of 65 young people in care who were surveyed. Both the school environment and the perceived levels of support influenced school engagement, with those who were assisted by carers and caseworkers more likely to be positively connected with school. These young people perceived education as a pathway to achieving work and life goals. The findings suggest that active and focused attention on young people's school engagement should be part of case planning and monitoring as it offers an additional strategy for improving their educational experience.