In This Article Palliative Care: Evolution and Scope of Practice

  • Introduction
  • Historical Framework
  • Textbooks and Reference Books
  • Journals
  • Organizations
  • Research
  • Assessment and Intervention
  • Social Work Role
  • Vulnerable and Special Needs Populations
  • Disease-Specific Considerations
  • Competencies

Social Work Palliative Care: Evolution and Scope of Practice
by
Terry Altilio, Anna McKinnon, Nansi Rivas, LMSW
  • LAST MODIFIED: 27 June 2017
  • DOI: 10.1093/obo/9780195389678-0253

Introduction

Palliative care is an interdisciplinary specialty that privileges patient-centered, family-focused care and is ideally accessible across ages, settings, and diagnoses. While hospice care is also provided to patients and families of varying ages across setting and diagnosis by an interdisciplinary team, in the United States it is generally available to patients and families with anticipated prognosis of six month or less. Alternatively, palliative care is accessible at any point along the continuum of illness, regardless of prognosis, and is often provided concurrently with disease-modifying or curative therapies. Palliative clinicians often work in collaborative relationships with primary providers toward the shared work of identifying and responding to the goals and needs of patients and their families as illness evolves. Palliative social work brings values and ethics specific to the profession, along with varied skills that begin with a psychosocial-spiritual assessment, that reflect a whole person in environment perspective that naturally coheres with the goals and focus of the specialty of palliative care. As palliative care has evolved to a specialty over the past decades, domains of care, preferred practices, training programs, discipline-specific certifications and competencies, and program certifications have developed, providing definition to the skill sets and program elements that may be expected. The mandate for access to palliative care has been informed by an increasing evidence base that documents the benefit to patients and families, enhanced quality of care, and cost effectiveness. As demand for palliative care increases across countries, diagnoses, and settings, there is a concurrent need to define specialist and primary skills and to create opportunities for practicing health-care clinicians to validate existing skills relevant to palliative practice, and, when necessary, to learn or further integrate palliative principles and practices. This is uniquely relevant to the thousands of social workers who practice across health settings and have a rich opportunity and responsibility to engage their skills in communication, advocacy, family systems, group dynamics, and psychosocial and cultural aspects of experience to enhance patient-centered, family-focused care across ages, settings, and illnesses. It is additionally relevant because the national and international call for palliative care mandates a continuing dialogue within the social work profession related to the imposition of Western values and the need for critical and creative thinking in servicing resource-poor nations.

Historical Framework

The history of palliative care is rooted in the landscape of hospice, as evidenced by the work of such pioneers as Zelda Foster, who in 1965 advocated for open communication with fatally ill patients and is honored as a leader and mentor in Berzoff and Csikai 2007. In the United Kingdom, Dame Cicely Saunders, the founder of St Christopher’s Hospice, published a commentary about the early history of social work in palliative care (Saunders 2001). In 1994 the Open Society Institute launched the Project on Death in America (PDIA) (see Clark 2013), which funded a survey to assess the needs of practitioners and educators (see Christ and Sormanti 2000. PDIA launched a Social Work Leadership Development Award program that funded forty-two social workers whose projects and publications focused on the practice, education, policy, and research aspects of palliative and end-of-life care. In addition, two social work summits were held. The first, in 2002, established priorities in areas of education, practice, policy, and research. The second, in 2005, with international representation from England, Canada, and Singapore, created a strategic plan to further develop palliative care and end-of-life as a specialty focus. The monograph Blacker, et al. 2008 integrates the work of ten social work authors and describes the strategic plan and work of the summits, including reports of the “state of the field” as perceived in 2005. The monograph also recognizes concurrent initiatives such as the Hartford Geriatric Social Work Initiative, which funded training and capacity-building opportunities for social workers specializing in research and education with older adults confronting serious illness and end-of-life issues A social work series, introduced by Christ and Blacker 2005 and published in the interdisciplinary Journal of Palliative Medicine, highlights the actual and potential contributions of social work on micro, mezzo, and macro levels. The four-article series includes Meier and Beresford 2008, which delineates challenges to the integration of social work in the specialty, while the other articles focus on research, policy, and practice. Taylor-Brown and Sormanti 2004, a special issue of Health & Social Work focused on end of life, validates the contributions and potential for social work to enhance care at end of life. Brandsen 2005 looks at the state of social work practice through a literature review conducted through 2004.

  • Berzoff, Joan, and Ellen Csikai, eds. 2007. Special issue: Tribute to Zelda Foster. Journal of Social Work in End-of-Life & Palliative Care 3.1.

    E-mail Citation »

    This issue integrates articles that reflect the personal and professional contributions of a social work pioneer and leader who as early as 1965 advanced the role of social workers as institutional and clinical practice change agents.

  • Blacker, Susan, Grace Christ, and Sallie Lynch. 2008. Monograph charting the course for the future of social work in end-of-life and palliative care: A report of the 2nd Social Work Summit on End-of–Life and Palliative Care. Seattle: Social Work in Hospice and Palliative Care Network.

    E-mail Citation »

    This monograph examines the state of palliative and end-of-life care social work in the context of two summits, the first of which established a priority map that would help inform the second summit. This monograph includes reports of the state-of-the-field presentations in research, practice, policy, and education, the priority map from the first summit, and a table of action items identified in the 2005 summit.

  • Brandsen, Cheryl. 2005. Social work and end-of-life care: Reviewing the past and moving forward. Journal of Social Work in End-of-Life & Palliative Care 2.4: 61–83.

    E-mail Citation »

    Based on a literature review through 2004 addressing social work roles and activities, core principles, and barriers to end-of-life care, the author identifies focus areas, generating empirically based knowledge for practice and policy analysis and developing social work education to needed knowledge and skills.

  • Christ, Grace, and Susan Blacker. 2005. Series introduction: The profession of social work in end-of-life and palliative care. Journal of Palliative Medicine 8.2: 415–417.

    DOI: 10.1089/jpm.2005.8.415E-mail Citation »

    This article introduces readers to a series of articles designed to highlight the history, challenges, and contributions, actual and potential, of social work to palliative and end-of-life care. It provides an overview of social work’s unique macro-, meso-, and micro-level contributions to the field of palliative care.

  • Christ, Grace, and Mary Sormanti. 2000. Advancing social work practice in end of life care. Social Work Health Care 30.2: 81–99.

    DOI: 10.1300/J010v30n02_05E-mail Citation »

    The findings from a practitioner survey, focus groups, and a faculty survey suggests social work knowledge and skills in care of the dying is uneven and not integrated with theory and research. Clinicians felt unprepared by MSW training, unsupported, and without role models. This work informed the Project of Death in America Social Work Leadership Initiative.

  • Clark, David. 2013. Transforming the culture of death in America: The work of the Project on Death in America. New York: Oxford Univ. Press.

    DOI: 10.1093/acprof:oso/9780199311613.001.0001E-mail Citation »

    Authored by a medical sociologist, this book discusses the Project on Death in America, which was instrumental in launching a cohort of social work leaders in the United States.

  • Meier, Diane, and Larry Beresford. 2008. Social workers advocate for a seat at palliative care table. Journal of Palliative Medicine 11.1: 61–74.

    DOI: 10.1089/jpm.2008.9996E-mail Citation »

    Provides a history of challenges in defining the palliative social work role, clarifying primary hospital social work and emphasizing the importance of collaboration within the discipline. Addresses the expert role within a team as specialists in psychosocial care.

  • Open Society Institute. 2004. Transforming the culture of dying: The Project on Death in America, October 1994 to December 2003. New York: Open Society Institute.

    E-mail Citation »

    This report describes the development of the PDIA’s funding initiatives, reflecting the history as well as providing funding recommendations to guide the integration of palliative care into future grant making.

  • Saunders, Cicely. 2001. Critical commentary: Social work and palliative care—The early history. British Journal of Social Work 31:791–799.

    DOI: 10.1093/bjsw/31.5.791E-mail Citation »

    The author, trained as a nurse, physician, and social worker, founded St Christopher’s Hospice in 1967. She provides a perspective on the place of social work in the evolution of hospice and palliative care.

  • Taylor-Brown, Susan, and Mary Sormanti, eds. 2004. Special issue: End-of-life care. Health & Social Work 29.1.

    E-mail Citation »

    A special issue focused on multiple aspects of end-of-life care to inform, validate, and challenge readers to consider how social work can contribute in ways that are compassionate, skilled, and responsive to the many needs of dying individuals and their loved ones.

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