Family perspectives on the hospice experience in adult family homes

Growing numbers of terminally ill older adults receive hospice services in adult family homes (AFHs); however, little is known about the provision and receipt of end-of-life care in such environments. This article reports findings from a qualitative exploration of family members' perspectives of the hospice experience in AFHs. Analysis of data obtained during interviews of 15 residents' family members exposed significant challenges associated with transition to an AFH, highlighted the importance of AFH and hospice staff in family members' assessment of overall quality of care, and emphasized the critical nature of communication in AFH settings.     

End-of-life care and social work education: what do students need to know?

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.     

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.     

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.     

“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.     

The Stigma Experienced by Terminally Ill Patients: Evidence From a Portuguese Ethnographic Study

The aim of this study was to offer an understanding of the ways in which terminally ill patients may face discrimination due to their visibly altered body. An ethnographic approach was adopted and fieldwork was conducted over 10 months in 2 inpatient hospice units in Portugal. Participant observation was complemented by 50 in-depth interviews with terminally ill patients, family members, and hospice staff. The stigma experienced by terminally ill patients derived mostly from the behavior of peers, extended family members, and friends toward their visibly altered body. There was no evidence that these patients were discredited by their immediate family when they became visibly unwell; unlike what has been reported in previous studies. This finding could be related to the strong familial culture of Portuguese society.     

Live Discharge from Hospice and the Grief Experience of Dementia Caregivers

When an individual has dementia, family members are involved in many care transitions in their roles as caregivers. One such transition is the ‘live’ discharge from hospice services. This occurs when an individual no longer meets eligibility criteria. This can be difficult for caregivers who have been anticipating an end to understand in the context of their grief process. This qualitative study (N = 24) explored the experience of caregivers of adults with dementia, including Alzheimer’s disease, who experienced a ‘live’ discharge from hospice. Specifically, the experience of grief is examined. Results from this study highlight the complexity of caring for someone with a terminal disease and the grief experience in end-of-life care as caregivers struggle to understand the individual’s terminal prognosis as temporary. This is further complicated for caregivers who must resume caregiving responsibilities or assume a new caregiving role after experiencing a loss of hospice services. Finally, hospice social workers are well positioned to offer emotional and other concrete support to caregivers who experience a ‘live’ discharge.     

Physician-Assisted Suicide and Midwest Social Workers: Where Do They Stand?

ABSTRACT

Physician-assisted suicide (PAS) is explicitly legal in five states and by court decision in one. Legislative bills have been introduced in other states including Minnesota, Iowa, and Wisconsin. This quantitative study was designed to understand Midwest, hospice and palliative care at end-of-life social workers’ attitudes toward PAS, preferred terminology, perception of preparedness for the implementation, and awareness of PAS legislation in their state. Sixty-two social workers from Minnesota, Iowa, and Wisconsin completed an anonymous online survey. The results indicated that over one-half of the participants supported PAS legislation and is consistent with previous research on social workers across the country. While there was a range of perceived preparedness for implementation, a majority felt moderately to very prepared. Professional and personal values as well as professional experience influenced their perceived preparedness. Few social workers had accurate awareness of PAS legislation in their state or had attended workshops/events for further education or as a policy advocate. To practice competently and advocate at all levels of practice, hospice and palliative care at end-of-life social workers’ need to understand their own attitudes and values toward PAS and pursue additional education around this ethical issue.     

The Grief Experience of Prison Inmate Hospice Volunteer Caregivers

Correctional institutions are obligated to provide end-of-life care to a population with complex medical needs. Prison hospices are increasingly being formed to address this demand. Few empirical studies have examined the impact of caring for dying inmates on the hospice inmate volunteers, who, in several prison health care systems, provide direct care. In this study, experiences of the inmate hospice volunteers with death were investigated to illuminate their grief processes. Understanding the bereavement needs of hospice volunteers and how prison hospice volunteers navigate grief and remain committed to providing excellent hospice care can inform the grief processes and practices of hospice care professionals.     

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.     

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.     

Facilitating forgiveness and peaceful closure: the therapeutic value of psychosocial intervention in end-of-life care

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.     

Hospice and Latinos: a review of the literature

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.     

Understanding Quality-of-Life While Living with Late-Stage Lung Cancer: An Exploratory Study

U.S. Veterans have a higher prevalence of advanced lung cancer and poorer survival outcomes compared to the general population; yet, no studies exist which specifically explore the psychosocial and existential quality-of-life (QOL) of late-stage lung cancer among this population. This article presents the perspectives of older veterans (N = 12) living with late-stage lung cancer who were receiving chemotherapy, routine hospice care, or both concurrently. Based on individual interviews, themes associated with loss of functionality, close relationships, and communicative acts contributed to veterans’ perceptions of diminished or enhanced QOL while living with advanced disease. An overarching theme, loss of the person I know myself to be, suggests that personhood is an important concept to consider in QOL assessment. While findings suggest that the experiences of older Veterans with late-stage lung cancer are similar to other populations of lung cancer patients, and persons with incurable cancer in general, further research regarding the influence of veteran identity at end-of-life is warranted. Further research is needed which explores the influence of a whole person approach to QOL during life-limiting illness and end-of-life decision-making, particularly while receiving late-stage cancer-directed therapy.     

Using the End of Groups as an Intervention at End-of-Life

SUMMARY

Support groups are an effective therapy at end-of-life. Patients with life-threatening illness and caregivers of the terminally ill have benefited from the mutual aid process provided by groups. Mutual aid is fostered by talking about feelings and developing group cohesion. Difficulty discussing the multiple issues of loss faced at end-of-life, including death and dying, can stifle sharing and impede this process. Group endings offer a unique opportunity to symbolically introduce these topics. This article explores the utilization of the group developmental stage of termination when facilitating groups for this population.     

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.     

Conversations at the end of life:the challenge to support patients who consider death with dignity in Oregon

Oregon's Death with Dignity Act (ODWDA) has been in effect for eight years. The United States Supreme Court recently decided that Oregon's law did not violate the Controlled Substances Act. Other states may consider a law similar to Oregon's through legislative process or ballot measures. Although social work is not mentioned in the law, our profession interfaces with the terminally ill, particularly in hospice. Eighty-seven percent of those who have used the law were enrolled in a hospice program. As a pilot project, this article explores conversations that the authors have had with patients, families, team members and health systems in hospices and oncology settings under Oregon's unique environment. The following four themes emerged from these conversations: (1) mental health, education, choice; (2) team concerns; (3) family issues; and (4) values, ethics, restricted conversations and professional struggles.     

Conversations at the End of Life

Abstract

Oregon's Death with Dignity Act (ODWDA) has been in effect for eight years. The United States Supreme Court recently decided that Oregon's law did not violate the Controlled Substances Act. Other states may consider a law similar to Oregon's through legislative process or ballot measures. Although social work is not mentioned in the law, our profession interfaces with the terminally ill, particularly in hospice. Eighty-seven percent of those who have used the law were enrolled in a hospice program. As a pilot project, this article explores conversations that the authors have had with patients, families, team members and health systems in hospices and oncology settings under Oregon's unique environment. The following four themes emerged from these conversations: (1) mental health, education, choice; (2) team concerns; (3) family issues; and (4) values, ethics, restricted conversations and professional struggles.