Treatment at the end of life

End-of-life care has gained recognition as an important interdisciplinary clinical domain during the past three decades largely because scientific and medical advances have changed the nature of dying in the US. Advances in the treatment of life-limiting ilness have typically focused on medical issues and on treating the physical symptoms that accompany the final stage of a terminal illness. However, because the lengthening life span has made more choices available at the end of life, there is also greater need for evidence-based psychosocial treatment to diminish some of the prolonged emotional, psychological treatment to diminish some of the prolonged emotional, psychological, social, and spiritual distress that accompanies dying. Both terminally ill older adults and their caregivers can be helped by interventions that address the need for information, education, preparation, communication, emotional support, and advocacy. This paper preents a review of evidence-based psychosocial treatments at the end of life for both older adults and their caregivers.     

Family-centered care: a resource for social work in end-of-life and palliative care

Recent trends in medicine reflect an attempt to be more patient-centered and while this is progress from the disease- or provider- focused model familiar in healthcare, the experiences and contributions of family as caregivers continue to be overlooked in some settings. The family-centered care model, developed most notably in pediatrics, but emerging in HIV, cancer, and aging, is presented as a resource to increase family involvement at the end of life. In this paper, family-centered care is defined, caregiving trends including support needs of formal and informal caregivers are discussed, and barriers to family-centered services are identified. Reintroducing family into the focus of care at the end of life is the primary goal of this paper. The family- centered model of care offers an appropriate framework for understanding the value of family in end-of-life care and fits well with social work perspectives that understand individuals in the context of their family system and greater environment.     

Results of a nationwide hospice and palliative care social work job analysis

The role of the hospice and palliative social worker is often ambiguous and misunderstood by colleagues and fellow team members. One reason for this is the lack of identified, clearly delineated roles, skills, and tasks employed by these specialty social workers in their daily work. This article summarizes the first nationwide job analysis of hospice and palliative social workers. A contextual, cross-sectional survey design was used to identify current and relevant job tasks from practicing hospice and palliative social workers. A sample of 482 social workers representing 46 states responded to a survey that included demographic questions and ranking of 152 tasks and importance to the position. Tasks were categorized into four broad categories: assessment and reevaluation; planning and intervention; death, grief, and bereavement; and professionalism; which includes subcategories consisting of multiple tasks and skills. Respondents identified performing a psychosocial assessment from a patient/family centered care perspective, assessment of the patient’s current and desired quality of life and of coping skills as the tasks most important to their role. This outline of the role of the hospice and palliative social worker was then used in the development of an evidence-based certification exam that may be required of those who want to receive specialty certification in the field.     

Unmet needs at the end of life: perceptions of hospice social workers

Among persons at the end of life, it is important to understand whether the needs of patients are being adequately addressed. In particular, in hospice settings where the emphasis is on comfort care and quality of life, we know little about the presence of unmet needs. The purpose of this study was to examine the experiences of hospice social workers in working with hospice patients who had unmet needs at the end of life. Surveys were mailed to hospice social workers (N = 212) in two Southeastern states with a response rate of 36%. Results revealed that hospice social workers perceived patients to experience a wide variety of unmet needs-more commonly at the time of admission than during subsequent patient interactions. The most common unmet need reported at both times was a decreased ability to participate in activities that make life enjoyable. In situations where unmet needs exist, social workers reported that the most common perceived reasons were patient- related psychosocial issues and family conflict/issues. Additionally, a variety of interventions were used to address unmet needs, but a large number of barriers appear to impact outcomes in the cases. Results suggest that hospice patients experience a number of unmet needs, many of which are potentially treatable problems and concerns. Hospice professionals must continue to seek ways to assess and intervene effectively with patients who have unmet needs.     

Social work practice in palliative and end-of-life care: a report from the summit

In 2005 a Social Work Summit on End-of-Life and Palliative Care was hosted by the National Association of Social Workers (NASW) with support from the Project on Death in America (PDIA) and National Hospice and Palliative Care Organization (NHPCO). Building on the work of a first summit held in 2002, work groups focused on practice, research, policy, and education with "State of the Field" presentations used as a point of convergence for setting priorities and developing action plans. This article describes a process of document selection and review which was designed to isolate aspects of social work practice and to determine concordance with domains and guidelines detailed in the interdisciplinary consensus document, Clinical Practice Guidelines for Quality Palliative Care, a publication of the National Consensus Project for Quality Palliative Care (http://www.nationalconsensusproject.org). In addition, a group of documents written by colleagues in medicine and nursing were chosen for evaluation as they reflect the emerging and valued incorporation of palliative care principles into specialties such as pediatrics and intensive care. This second review was focused on determining the nature and scope of social work presence and participation and on understanding if the role of the profession was clearly articulated in these specialty areas. This article discusses the historical context and relevant findings that may contribute to the growth of the profession in this rich and burgeoning specialty.     

Community care for adults with severe mental disorders in rural China: A case study

In China, family care is the dominant form of care for people with mental disorders. Since 2004, the government has been developing a community‐care model that places more responsibility on community organisations and the local governments at the provincial, municipal and county levels for the provision of formal care. As a large number of people with severe mental disorders live in rural China, this case study was conducted in a rural county in order to examine the development of community care. It was found that, although family care remains dominant, families’ need for formal care is increasing. Community services have improved, but their development is constrained by several contextual and micro factors. In this study, it is argued that the community‐care model introduces a process of reconfiguration of the relative responsibility for care among the family, social organisations and the government, but progress depends on further administrative and fiscal reforms.     

Pediatric palliative and end-of-life care: the role of social work in pediatric oncology

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 pediatric 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.     

Working with advanced dementia patients in a day care setting

Alzheimer's disease and most other causes of dementia are regressive by nature. As such one can expect patients with such types of mental impairment to gradually decline in function and ability to participate in day care activities. This paper attempts to show that with the right kind of orientation, staff can "tune into" the more advanced dementia patients, find the key to their personal needs, desires and remaining abilities and design a program that allows them not only to continue to participate in a social and therapeutic framework, but also to gain some meaningful human contact and quality of life despite their cognitive deterioration.     

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.     

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.     

Comfort and confidence levels of health care professionals providing pediatric palliative care in the intensive care unit

Most childhood deaths that occur in the hospital happen in the pediatric intensive care unit. Providing pediatric palliative care in the intensive care unit comes with unique challenges due to the acute care, curative and often medically aggressive focus of these settings. In this study, 190 PICU health care professionals reported on their comfort and confidence in providing palliative care. Findings indicate that professionals report only a moderate level of comfort and confidence in this type of care in the pediatric ICU. For physicians and nurses, comfort and confidence was significantly higher for those who had practiced 8 years or more. Practitioners reported less comfort in providing psychosocial care. Implications for the social work role on the interdisciplinary team and suggestions for future research are discussed.     

Shaping the future of social work in end-of-life and palliative care

The second Social Work Summit on End-of-Life and Palliative Care was held from June 1 to June 3, 2005. Sixty representatives of more than 35 social work and other professional organizations with a commitment to improve care for the terminally ill, dying, and bereaved, attended and formulated key priority directions and initiatives that will further the field.     

Social workers' use of spiritual practices in palliative care

Numerous studies have examined client use of spiritual and/or religious practices to cope with illness and adversity. This study explores social workers' use of spiritual practices as reflected in their work with palliative care clients. Survey results (n = 327) indicated significant relationships of spiritual practices such as yoga, prayer and meditation to working with palliative care clients. The total number of these approaches is predicted by factors such as theoretical orientation and the social workers' own struggles with palliative care and other issues. Our study supports the need for additional investigation of spiritual issues in practice.     

Voices of resilience: older adults in hospice care

Terminally ill older adults have the capacity to live well in the context of dying. Having negotiated a lifetime of challenges, they have resources to demonstrate resilience and achieve wholeness in life's final phase, but research has not adequately investigated this process. This qualitative research study considered the paths to resilience used by 30 older adult hospice clients in Kansas and Illinois. Responses were coded using the grounded theory method of Strauss and Corbin (1990) where data drives interpretation and text is coded into categories. Results centered on four themes that included: (1) a redefinition of self; (2) use of religion/spirituality or openness to uncertainty; (3) maintenance of social investments; and (4) guarding independence even as the scope of life contracted. Results imply that attention should be paid to building environments of wellness. This may be accomplished paradoxically through facilitating continuity of client interests and yet opportunities for creativity and growth as well. Listening with a healing stance and cultivating a habit of being fully present in interactions with clients assist in this process.     

All aboard: advancing the social work research agenda in end-of-life and palliative care

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

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 adults the hope for "quality living".     

The relationship between adverse childhood experiences,health and life satisfaction in adults with care experience: The mediating role of attachment

Adverse childhood experiences (ACEs) are associated with a plethora of negative outcomes. Research has also found that adults who were separated from parental care and lived in alternative care settings during childhood have high levels of ACEs and are more likely to have poor outcomes. A growing body of research has supported the importance of attachment as a mechanism underlying the relationship between ACEs and adult wellbeing. However, little work has examined the role that attachment may play in the outcomes of adults who resided in residential and foster care during childhood. The current study examined the role of attachment avoidance and anxiety in the associations between ACEs and mental health, physical health, and life satisfaction in a sample of 529 adults with alternative care experience from 11 nations. Attachment avoidance partially mediated the relationship between ACEs and life satisfaction, mental health, and physical health. Attachment anxiety partially mediated the relationship between ACEs and life satisfaction and mental health, but not physical health. Taken together, the present study suggests that both attachment anxiety and avoidance play important, but unique, roles in understanding the relationship between ACEs and health and wellbeing for adults with care experience. Implications and limitations are discussed.