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.     

Caregiving Youth Knowledge and Perceptions of Parental End-of-Life Wishes in Huntington’s Disease

Knowledge of patient end-of-life (EOL) wishes and discussions are vital for family caregivers, including children and youth who may be in caregiving roles (“young carers” or “caregiving youth”). However, little is known about caregiving youth awareness and perceptions of EOL issues. This study sought to explore caregiving youth knowledge of EOL wishes and their willingness for EOL discussions. Face-to-face interviews with 40 caregiving youth ages 10–20, who have a parent with Huntington’s disease (HD), provided information about their knowledge of the presence of their ill parent’s living will (LW) and durable power of attorney for health care (DPAHC), and willingness to talk with the parent about EOL choices and possibility of death. Less than one-half of the participants were aware of the parent’s LW or DPAHC. Content analysis revealed themes in reasons to want or not want EOL discussion with the parent: respect for the parent’s wishes, caregiving youths’ opinion not valued, and avoidance of EOL issues. Themes also included reasons to not want discussion with the parent about possibility of death: protecting the parent, parent in denial, parent not ready, and realization of the terminal outcome. Findings suggest HD patients and their caregiving youth need support for open EOL discussions, and could benefit from educational programs and support groups around EOL issues.     

Comfort with discussions about death,religiosity, and attitudes about end‐of‐life care

In end‐of‐life (EOL) care research, death anxiety and religiosity are often overlooked. Terror management theory (TMT) may provide a useful conceptual model with which to examine how comfort discussing death and religiosity influence attitudes related to EOL care. A telephone‐based survey was conducted among community‐dwelling adults in the Unites States. Via random sampling, with over‐sampling of Hispanics/African Americans, 123 completed survey interviews (response rate = 46%) were analyzed. Respondents were more likely to have better attitudes toward EOL care if they were older or white, religiously active, and comfortable with the subject of death. Religiosity and comfort discussing death were correlated with each other and remained significant predictors of attitudes about EOL care even without demographic covariates. Findings suggest that promoting an open dialogue about mortality may improve attitudes about EOL care and utilization of palliative care services. The study also provides evidence about the utility and applicability of TMT for EOL care.     

Detained and Dying: Ethical Issues Surrounding End-of-Life Care in Prison

Prisons are increasingly being called upon to provide end-of-life (EOL) care within the restrictive correctional environment. Several relatively recent phenomena have brought medical ethics to the forefront of prison EOL care—including aging behind bars, a paradigm shift in prison culture, the increasing rate of in-prison deaths, and the corresponding prison hospice movement. This article examines prominent ethical issues that emerge for prison personnel who are tasked with providing care to terminally ill offenders by presenting three offender composite characters that exemplify dying offenders and emergent ethical issues surrounding their care. Identification and critical analysis of these ethical issues demonstrate the need for strong commitment to ethical practice and highlights specific issues for prisons to examine in their own EOL care practice.     

Social work involvement in end of life planning

This cross sectional study examined the factors associated with social workers' involvement in end-of-life (EOL) planning using a random sample of NASW members in health and aging. Of the 390 social workers who worked in EOL planning, the majority were involved in health care proxy discussions and counseling with patients. Respondents tended to see barriers to proxy completion as client-related. However, some system barriers were correlated with overall involvement. Factors that predicted social workers' involvement with the health care proxy included age, attitudes, perceptions of barriers, and perceived physician support. Social workers need to attend to the systems in which they operate as well as to client concerns.     

Driving outcomes: learning to drive,resilience and young people living in residential care

There are continuing concerns about the experiences offered to older adolescents being looked after (‘in care’) in the UK and, especially, to care leavers. Questions are asked about the limitations of State care compared with normal family life. This paper reports on an initiative to provide driving lessons to a group of six young men living in residential homes in one city. It links with resilience theory – how individuals can have relatively good outcomes despite early adversity. A qualitative study was undertaken to explore the effects of the initiative, including individual interviews with young men, heads of homes in which they lived and children's services managers. The overall results indicated that the initiative was very worthwhile. The lessons were a significant part of young people's lives. Possible effects on young people were divided into personal, instrumental and social. Benefits were reported from all parties concerning young people's self‐esteem and self‐confidence, as well as in forging close relationships with supportive adults. Driving would not be seen as a panacea for complex personal histories and structural problems, yet this small experiment suggests that driving lessons could be of disproportionate benefit and there is a moral obligation to provide them in any case.     

Adults who grew up in care: constructing the self and accessing care files

Past research on care leavers has, understandably, tended to focus on those who are in their mid‐ to late‐teens or early 20s. This reflects the profound impact of central and local government policy on those young people. It also reflects their prominence in contemporary analyses of most of the indicators of social exclusion among young people in the UK – unemployment, homelessness and lack of educational qualifications among them. However, some issues affecting adults who grew up in care apply across the life course. One such issue is the access that former care adults have to their child care files. Indeed, as we shall see, this issue has particular importance for many older adults (in their 30s and upwards). Policy and practice in this field has changed significantly during the past 20 years and there is a growing awareness of the needs of former care adults in this area. Access to such files can be a significant element in the process of seeking to address identity concerns centring around family and childhood experiences. This paper explores some of these identity concerns and analyses how access to care files both reflects such concerns and attempts to address them.     

Gay,Lesbian, and Bisexual Elders

Abstract

Although the Gay, Lesbian, and Bisexual (GLB) senior population is growing, there has been little attention given to identifying and understanding the needs and concerns of this growing population. This paper will present results from a series of focus groups and in-depth interviews with GLB elders from three select areas in the Midwest. Content analysis of the expressed beliefs, attitudes, and opinions from participants revealed that there were seven major areas of importance for GLB elders (physical health, legal rights, housing, spirituality, family, mental health, and social networks). The needs, concerns, range of issues, common issues, opinions, and attitudes expressed across the three focus groups are discussed and recommendations are provided.     

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.     

Partnership and the limits of procedure: prospects for relationships between parents and professionals under the new Public Law Outline

April 2008 saw the introduction of a new Public Law Outline (PLO) that aims to improve judicial case management of Public Law Children Act cases. The PLO is a response to concerns about the rising number of care proceedings, associated costs, and the difficulties of achieving case resolution given this volume. Based on an ethos that care proceedings should be avoided wherever possible, the new approach to case management, which places significant emphasis on pre-proceedings work and the effective engagement of parents, can be seen to reinforce the 'no order principle' enshrined in the Children Act (CA) 1989. Focusing specifically on relationships between parents and professionals, this paper provides a critical discussion of the potential of the PLO to further promote consensual practices with parents. Discussion traces the introduction of the concept of partnership within the CA 1989, provides a review of the evidence to-date of effective partnership working, before considering the prospects for the PLO with respect to parental engagement. A number of key contextual obstacles are highlighted that will inevitably undermine the aspirations of the new outline, and a more general observation is drawn about the limits of procedure in effecting change in complex social issues.     

Revisiting children 'home on trial' in the context of current concerns about the costs and effectiveness of the looked-after children system: findings from an exploratory study

Statute and practice relating to s.31 part IV of The Children Act 1989 allow children subject to care orders to be placed at home with their parent(s). It is not uncommon for the courts to accept a plan for children to return home at the final hearing of care proceedings at which full care orders are granted. In such instances, children retain looked‐after status but, in terms of their day‐to‐day care, are looked after by parent(s). Whilst there are a small number of studies conducted in the 1990s relating to children ‘home on trial’, there is a much more limited recent literature. It is important to revisit this population of children, given current concerns about the burgeoning costs of child care proceedings and the looked‐after children system (LAC). This paper reports on a small‐scale exploratory study in one north‐west local authority area. Consisting of a file study and interviews with parents and professionals, the study examines the factors that contributed to initial removal of children to public care, the impact of the LAC system for children ‘home on trial’, stability of placements at home, as well as issues to do with the discharge of care orders. Particular attention is drawn to lone father headed households, a social group over‐represented in our sample. The study aims to inform further multi‐location studies.     

“Unexpected and Distressing”: Understanding and Improving the Experience of Transferring Palliative Care Inpatients to Residential Care

The survival of patients with advanced cancer, coupled with the increased presence of end-stage chronic illnesses in an aging population, is leading to a demand in palliative care. Due to the ongoing need for acute-pain and symptom control in hospice/palliative care units, few are able to offer long-stay admission for those whose symptoms have stabilized. When a patient no longer requires specialist palliative care services, transfer from an inpatient palliative care facility may then be necessary. A core component of the role of palliative-care social workers involves working with patients and their families/carers when the care pathway shifts and the option of residential aged care facility (RACF) needs to be considered. This research explored several issues, including the impact of this transition on the patient and their families and on the interdisciplinary health care team treating the patient. An investigation was undertaken to identify concerns and barriers regarding the transition from hospice care to RACF and opportunities were highlighted to improve clinical practice in this area. A tripartite approach was adopted conducting face-to-face interviews with patients, their families/carers, and health care professionals. Members of the interdisciplinary team were interviewed and social workers working in similar inpatient palliative-care facilities undertook telephone interviews to gauge their experiences. A thematic analysis discerned a number of themes highlighting the impact of this transition on key stakeholders and incorporated recommendations to improve or best manage this process. The research has highlighted the difficulties that patients/families encounter in this transition, as well as the emphases of protecting the integrity of the patient and family. This is achieved by holding open and ongoing dialogue, particularly through family meetings and working in collaboration with the patient, the family, and the team. Understanding the experience and impact of this transition on key stakeholders is helpful in building up a knowledge base and to ensure a more effective relationship occurs. This research incorporated the voices of terminally ill patients, families, and members of the health care team in order to understand their views and recommendations for best managing the transition from a hospice/inpatient palliative-care facility to a RACF. This enables their input to have some real impetus in clinical practice and service delivery.     

Hoops Group: Group Work with Young "Street" Men

This paper presents the "hoops group," a basketball group for young "street" men. The purpose of this presentation is: (1) to further the discussion of services developed for group empowerment for homeless persons, (2) to present a case example of services to this population, and (3) to further the conceptualization using McGrath's (1991) construct of group functions. This article maintains that groups developed around activities in which individuals feel competence (in this case, playing basketball) are ideal in developing a collective identity and facilitating therapeutic gains.     

Health Self-management Among Older Prisoners: Current Understandings and Directions for Policy,Practice, and Research

The population of aging prisoners has increased significantly over the past several decades, resulting in concerns about the criminal justice system’s ability to address the needs of prisoners and parolees with chronic health conditions. This is troubling, given the health disparities among incarcerated populations. Health self-management has become a strategy within the community-based health care industry to improve health services and outcomes while reducing health care costs for nonincarcerated individuals with chronic conditions. However, to date little research has focused on the practice or promotion of health self-management among current and former incarcerated populations. This article highlights current understandings about chronic health self-management among older prisoners and parolees, with an emphasis on the potential benefits and current challenges in promoting their health self-management practices. Finally, specific recommendations are made for promoting health self-management for these populations through social work practice, policy advocacy, and research to achieve goals in improving health outcomes and reducing healthcare costs.     

Aging and social welfare in transition: the case of the United States

In the United States at the end of the twentieth century, government policies regarding elderly people appear to be in transition. In part this reflects the traditional American ambivalence between radical individualism and collective assistance - especially in the form of tax-supported public welfare provided through government agencies - for those unable to earn or save for their own support. But in part this reflects new concerns about the growth of welfare "entitlements" for elderly people and the presumed "generational inequity" of public support for the aged at the expense of funds for children and young families. We review 1) the changing demography of the United States elderly population, 2) the complex and ambivalent history of welfare policy in the United States and 3) the evidence for tensions and conflicts between older and younger Americans in the context of politicized "generational inequity" debates, with special attention to changing government health care policies. We conclude that in American society, particularly in terms of federal assistance to the aged, there is considerable public support for current policy measures, and - contrary to the predictions of many - it is not likely that there will be dramatic policy changes in the near future.     

Improving homeless persons' utilisation of primary care: lessons to be learned from an outreach programme in The Netherlands

Elissen AMJ, Van Raak AJA, Derckx EWCC, Vrijhoef HJM. Improving homeless persons' utilisation of primary care: lessons to be learned from an outreach programme in The Netherlands Faced with rising homelessness, countries around the world are in need of innovative approaches to caring for those without shelter, who, more often than not, suffer from severe health problems. We conducted a case study of an innovative Dutch Primary Care for the Homeless (PCH) programme to gain insight into clients' demographic characteristics, health problems and service use, and to develop an explanation for its success in increasing the latter. Our analyses are based on a combination of quantitative and qualitative data. The results of the study suggest that the success of the PCH programme can be explained by the providers' pragmatism and will to adapt their mode of care provision to the behavioural patterns and needs of their homeless clients.     

The Effect of Financial Incentives and Access to Services on Self-funded Admissions to Long-term Care

With the growth in the numbers and proportion of older people in the population the funding and incentive structures around long‐term care are of international concern. A study of the circumstances of self‐funded admissions to care homes allowed the comparison of self‐funders with publicly funded admissions to care homes in the UK, the influences on self‐funders in their decision to move into a care home and resources on which they were able to draw. These findings contribute to our understanding of the impact of current policy on self‐funders and our thinking about the way that future policy and practice changes could improve the way we use society's resources in the provision of long‐term care.     

Policy transfer,social pedagogy and children's residential care in England

Much concern has been expressed about the quality of care and poor outcomes for looked‐after children (‘children in care’) in England, especially regarding residential homes. This paper builds on a recent evaluation of the piloting of the continental European model of social pedagogy (SP) in English residential care. It does three things: it considers the theoretical social policy literature on policy transfer and its implications; discusses European residential care for children and the discipline of SP; and reflects on these debates and the situation of children's residential care in England. The paper concludes that there are some major hurdles to a widespread implementation of SP in England. This particularly concerns the differing social, professional and political context of children's residential services across neighbouring countries.     

The Ventilator Support of Patients with Neuromuscular Disorders

ABSTRACT

Health Professionals caring for patients with Mycosis Fungoides are often impressed by the wide variety and magnitude of the psychological and psychosocial issues centered around disfigurement. I will present an overview of Mycosis Fungoides and conclude with a recent case study that exemplifies these concerns and issues.