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.     

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.     

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.     

Home-Based Palliative Care Study

Abstract

Purpose: To examine differences in site of death and costs of services by primary diagnosis for patients receiving home-based palliative care as compared to usual care at the end of life verity of illness, service use, and site of death.

Design and Methods: A nonequivalent group design was employed with 298 terminally ill patients diagnosed with cancer, CHF, or COPD enrolled. The treatment group received an interdisciplinary home-based palliative care program and the comparison group received usual Kaiser Permanente services. Data collected included patient demographics, se-

Results: Among all diseases, patients enrolled in palliative care were more likely to die at home. Enrollment in palliative care was significant associated with cost reductions for patients with cancer, COPD, and CHF. No significant difference was found between diagnostic groups in terms of magnitude of cost savings.

Implications: Provision of interdisciplinary home-based palliative care at end of life can effectively increase the likelihood of dying at home for patients with CHF, COPD, and cancer while realizing significant COSt savings.     

Beliefs,Death Anxiety,Denial, and Treatment Preferences in End-of-Life Care

Abstract

This study examined cultural and religious beliefs, death anxiety, denial, and medical treatment preferences in end-of-life care in a sample of social work students, community residents, and medical students in a mid-western city of 49,000. Results indicated that most social work students, community residents, and medical students preferred palliative as opposed to life-prolonging care during terminal illness. The three groups differed in cultural and religious beliefs and all three reported a moderate amount of death anxiety. Students reported less denial of terminality than community residents. Implications for personal and professional preparation to provide end-of-life care are discussed.     

Social Workers' Use of Spiritual Practices in Palliative Care

Abstract

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.     

Setting an Agenda for Social Work in End-of-Life and Palliative Care

Abstract

This article describes leadership efforts within social work to promote, enhance, and shape the future of social work practice, education, and research in end-of-life and palliative care. The background and outcomes of the Project on Death in America, Open Society Institute's Social Work Leadership Development Award Program, and the 2002 Social Work Leadership Summit on End-of-Life and Palliative Care are reviewed.     

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.     

“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 Integration of Health and Social Care: The Lessons from Northern Ireland

Mechanisms for the integration of social services with health have come to dominate the debate on providing a more seamless provision of health and social care. Working together at the health and social care interface has been strongly promoted and endorsed in government documents since the late 1990s. Moves towards integration have been treated with suspicion and scepticism in the academic literature, with many authors highlighting the many barriers and challenges presented by this method of working. Yet these proposals do not represent a paradigm shift in culture in all parts of the United Kingdom, as Northern Ireland has had an integrated health and social care system for over thirty years. Based on an empirical study of senior health care professionals in Northern Ireland, this study identifies and discusses the key issues associated with integration. It concludes that the experiences in Northern Ireland have to date been overlooked or misrepresented and could prove extremely valuable in gaining an understanding of the challenges and benefits of integrated arrangements.     

The Attitudes of Social Work Students Toward End-of-Life Care Planning

This study examined the attitudes of social work students toward end-of-life care planning, as well as their degree of willingness to engage in this area of social work practice. Factors associated with their attitudes were measured through structured surveys completed by 102 social work students (N = 102) at a school of social work in the southeast. Results indicated that these social work students tended to have positive attitudes toward end-of-life care planning in general. Moreover, these attitudes were positively associated with preference for pain relief treatment, higher levels of comfort when discussing death, more emphasis on self-determination, and apprehension of conflicts of self-determination. The results of this study underscored the increased societal need for recognition of personal preferences in end-of-life care, higher levels of comfort when discussing death, and an increased commitment of social workers' to maintaining the ethical principle of the client's right to self-determination in end-of-life planning. While this is not surprising, it points to a continuing need to re-assess where the field stands in its preparation of social work professionals who will work closely with people who are dying and their families.     

Family-Centered Care

Abstract

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.     

“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.     

Reflective Debriefing: A Social Work Intervention Addressing Moral Distress among ICU Nurses

ABSTRACT

Health-care workers may experience moral distress when they are unable to act as they believe is ethically appropriate in their clinical work. A social worker-facilitated protocol called Reflective Debriefing was developed and tested for alleviating moral distress through regular debriefings with nursing staff on an intensive care unit (ICU). Forty-two ICU nurses completed a Moral Distress Scale-Revised (MDS-R) at the beginning and end of a 6-month period, during which time regular debriefings were offered. The overall level of moral distress on the ICU surveyed was found to be low to moderate. The top three most frequent situations causing moral distress reported by most nurses in this study were related to the provision of nonbeneficial care in the ICU. Participants reported gaining the most benefit from feeling empowered to constructively confront other staff members about truth-telling in giving a prognosis. Nurses’ overall response to the intervention was positive, with 100% of participants requesting to continue the Reflective Debriefing sessions either on a monthly or on an as-needed basis. The response to the intervention emphasized the importance of interprofessional collaboration to successfully combat moral distress among health-care workers and may protect them from burnout, detachment, and even quitting their profession.     

Integrating Health and Social Care at the Micro Level: Health Care Professionals as Care Managers for Older People

A common problem in the provision of coordinated long‐term care is the separation of health and social care. The present government has been increasingly concerned with promoting convenient, user‐centred services and improving integration of health and social care. One arrangement that could contribute to this for some older service users is for health care staff to act as care managers, coordinating the provision of both health and social care. This paper presents the findings of a survey of arrangements in place in local authorities for health staff to work as care managers for older people. This was designed to provide details about the range and scope of care management activities undertaken by health care professionals. Key areas of enquiry included: which kinds of health care staff undertook care management and in what settings; how long the arrangements had been in place and how widely available they were; whether there was a distinction between the types of cases and care management processes undertaken by health care staff compared with their social service department counterparts; and what management and training arrangements were in place for the health care staff.     

Moving Toward Medicare Home Health Coverage for Persons with Alzheimer's Disease

ABSTRACT

Medicare home health care policy does not incorporate research evidence of effective palliative home care interventions for Alzheimer's disease and dementia patients and caregivers. This article examines the dissonance between the needs and burdens of Alzheimer's disease patients and caregivers, research results on medical and palliative care interventions, and medicalized public policy in the Medicare home health benefit. The article asserts existing research establishes a prima facie case exists for the federal government to fund a Medicare Palliative Home Care for Alzheimer's disease demonstration project. The article cites the success of the Medicare Hospice Demonstration project and Hospice Medicare Benefit in reducing costs and improving client quality of life as precedent and a model for Alzheimer's disease. Other research implications are identified.