Dame Cicely Saunders (1918–2005) was the founder of the modern hospice and palliative care movement. As a nurse, social worker, and eventually a physician, she developed a systematic approach to studying the symptom management needs of the terminally ill.
Mary Raymer and Dona J. Reese
Hospice social workers are essential members of the interdisciplinary team that provide biopsychosocial and spiritual care to terminally ill patients and their significant others during the last 6 months of life. Hospice philosophy emphasizes symptom control, quality of life, patient self-determination, and death with dignity. Hospice social workers must be skilled in providing evidence-based interventions including direct client services; collaboration with the interdisciplinary team; community outreach; developing culturally competent services; and advocating for policy change on the organizational, local, and national levels.
The ability of medical technology to prolong life over the past century has forced an examination of the experience and care of the dying. Many diseases that once were expected to follow a sloping illness trajectory with predictable deterioration and ultimately death are now more commonly experienced as chronic illnesses. They require more medical and other resources and challenge the family's ability to cope for much longer periods. The knowledge, value, and skill base of social work, and its broad range of practice sites make it uniquely suited to contribute to the movement to improve the care of the dying. The Social Work Hospice and Palliative Care Network were formed in 2007 to advance and give voice to social work's expertise in this area and to promote its development in practice, education, research, and policy.
Linda P. Darrell
The perspective of end-of-life care has changed over the years. People are living longer, fuller lives due to advanced medical care and technology along with an increased interest in healthier lifestyles. The focus of end-of-life care has expanded to include accidental and sudden, unexpected death, chronic illness, anticipated death from longevity, and illnesses impacting children. An expanded perspective of end-of-life care must account for the challenges and changes of service delivery within a multi-cultural 21st-century milieu. The significance of advanced medical technology and improved lifestyles is an important component of a primary multidisciplinary assessment to understand the impact of such a life-altering occurrence as end-of-life care. Equally as important is a culturally inclusive perspective to accommodate the significance of longevity due to improved lifestyles, advanced medical technology, ethnicity, spirituality, and racial awareness. This article will explore the multiple concerns surrounding end-of-life care issues from an expansive worldview.
The term survivor has been applied to people who have endured diverse traumatic or life-threatening experiences ranging from sexual abuse to airplane crashes and wars. In the past 25 years, the term has also been applied to those diagnosed with cancer, an illness that once claimed the lives of most who were diagnosed with it, but which many now survive because of treatment advances. This entry addresses the social-work profession’s involvement with cancer survivorship as one example of survivorship. Social workers encounter cancer survivors in every practice arena, including hospitals and palliative-care programs as well as schools, correctional facilities, and mental-health clinics. They conduct research and provide education about the psychosocial impact of cancer and also provide counseling and advocacy. With their focus on strengths and resilience and their range of skills and knowledge about the biopsychosocial impact of life-threatening and traumatic experiences, social workers are uniquely positioned to assist survivors in adjustment to survivorship and in restoring well-being through micro, mezzo, and macro systems interventions.
Terry Altilio and Dana Ribeiro
Palliative care is a burgeoning specialty in medicine, nursing, social work and chaplaincy which privileges patient-centered, family-focused care provided across settings. Rather than a singular focus on a disease or an organ of the body, clinicians serve persons with serious illness with an approach that honors the whole person, their priorities, values and goals. In contrast to hospice care, palliative care is accessible at any point along the continuum of illness and is often provided concurrently with disease-modifying or potentially curative therapies as in the treatment of many persons with various cancers. Palliative care clinicians often work in interdisciplinary teams who collaborate with primary teams such as oncology or cardiology to identify and respond to the physical, psychological, social and spiritual needs of patients and their families. Palliative care programs are extending beyond the confines of acute care settings to venues such as outpatient clinics, home and extended care facilities. Signal events have contributed to the history, evolving role and presence of social work in this specialty. Palliative social work brings values and skills that reflect a whole person in environment perspective that is elegantly congruous with the palliative approach to care.
Ellen L. Csikai
As medical technology advances producing the ability to prolong life almost indefinitely, individuals and families are asked to make increasingly complex choices about what treatments best correspond to their conceptions of how they wish to die. These decisions create a need for attention to medical aspects as well as psychosocial consequences. Social workers play pivotal roles in ensuring access to needed information and resources and in safeguarding individuals' rights to self-determination in end-of-life decisions. This entry discusses issues related to advance care planning, the process of end-of-life decision making, and social work roles with individuals, families, and health care providers.
Sadye L. M. Logan
Elizabeth J. Clark (1944–2020) was an author, speaker, and hope advocate. She was a healthcare professional who worked extensively with cancer survivors, those facing life-challenging illnesses, and those struggling with loss and grief. Clark grew up in Lock Haven, Pennsylvania. She earned multiple degrees from the University of Pittsburgh, the University of North Carolina, and Wartburg College. She served as chief executive officer of the National Association of Social Workers (NASW) for over a decade and was a member of the Academy of Certified Social Workers (ACSW), the National Academies of Practice (NAP), and the international work group on Death, Dying and Bereavement.