Definition of Social Work

Numerous formal definitions of social work have been proposed. One of these, from the International Federation of Social Workers, follows:

However, at present, there is no established definition of palliative care social work. A patient’s experience of serious life-threatening or debilitating illness is influenced by at least three domains that are a target for professional social work: personality and coping, family system patterns, and practical resources. The palliative care social worker needs to be expert at assessing and implementing approaches within a systems perspective to maximize the well-being and functioning of the patient/client and the family in all these domains. In addition to providing patient care, social workers discover new knowledge through research, develop educational programs, and advocate for social change that furthers skilled and respectful care for all members of a diverse society. The social worker may take on varied roles, as noted in Table 40-1 .

Psychosocial Context of Palliative Care

Social workers meet the needs of patients and their informal caregivers by supporting efforts to maximize their well-being, independence, and problem-solving abilities. Attachment, commitment, challenge, loss, grief, death, reintegration, resolution, and growth characterize the continuum of the human experience throughout life. It is within the psychosocial context, not the disease, that people live their lives. In a study that reviewed the patient’s perspective at the end of life, patients with chronic obstructive pulmonary disease, cancer, or acquired immunodeficiency syndrome were asked what their physicians could do to improve the quality of care they provided. For all three diseases, the importance of emotional support, communication, accessibility, and continuity was emphasized. These are all essential elements of the psychosocial domain. A number of studies across chronic diseases have recently demonstrated the effectiveness of self-management involving education, problem-solving, and social support. People need to feel participatory and to feel that they have been heard. Social work stresses the importance of assessing the person-in-context and establishing a therapeutic alliance.

Palliative care needs differ by socioeconomic group. Most individuals (70%–80%) in industrialized nations will die in their later years from a known chronic, degenerative disease that may last for years. In the Unites States, especially for the rural and urban poor, coping with loss and bereavement may be disproportionately experienced as a consequence of violence. Sudden, violent loss requires specialized support and management, and the psychosocial interventions, where and when they exist, are highly condensed. Other clearly definable disenfranchised segments of society, including the elderly, must also bear the unequal and added burden of having to understand and navigate a patchwork health care system that is poorly organized, reactive, inefficient, and sometimes unable to meet their needs. Social workers help provide services independent of socioeconomic group. They are often engaged in the tasks of helping people access the system who are having difficulty doing so. This is true in palliative care no less than other aspects of medicine. Some of the many settings in which social workers practice are set out in Table 40-2 .

Social workers do not see their patients/clients as separate and distinct from the social milieu in which they exist. Social workers help people to solve problems and to make hard decisions, often in the face of great uncertainty. Social workers serve as the connective tissue of the health care and social systems by supporting, advocating, informing, educating, sensitizing, counseling, and synergizing all available resources and inherent strengths to the benefit of the patient, family, and society. Social workers have an ethical duty to go beyond direct services to patients and families, a responsibility that always includes awareness of the greater good to society. Social workers need to see challenges and opportunities from a systems perspective because the focus of the intervention may just as easily be on the individual, the institution, or both simultaneously.

People with chronic life-threatening illness and their committed family members are generally not in a position to find the time, focus, energy, or resources to fight for structural systems change. So, although many of the barriers to living a meaningful life are not caused by the individual, the individual must ultimately manage the problem within existing systems. Social workers aim to promote self-reliance and independence while ensuring that a realistic assessment of the situation is made and clearly communicated. Social workers, regardless of the practice setting, value and actively work to promote social justice. Palliative care highly values and maximizes the benefits of the supportive social milieu of the patient and family in a way that modern medicine has long forsaken. It is not by accident that palliative care services are often provided in the home. The home is the territory of the patient and the family. Palliative care provides an opportunity to change not only how health care is practiced but also how society as a whole treats its ill members.

People receiving palliative care are usually facing and must learn to live with increasing levels of loss—loss of function, dreams, relationships, and more. The degree of physical deterioration, the number of internal resources, and social support factors are key interacting variables in how people manage challenge and live meaningful lives. Within the context of palliative care, social workers are attuned to the potential meanings ascribed to the inherent sense of loss related to chronic debilitating illness and how it is manifested at all developmental stages. For example, social workers are aware that Medicare recipients with life-threatening illness are more likely to access higher-quality medical centers and to spend less time in the hospital if they are married (compared with Medicare recipients who are widowed). People who are married are less likely than unmarried people to spend the end of their lives in a nursing home. Because men often die at least 5 years earlier than women, at the end of life women are at risk of being unmarried and alone. People are particularly vulnerable at the end of life, given the myriad complex demands related to the need to understand medical information, important decisions that must be made, and the implications of these decisions for the person and the family. Although managing the demands of chronic illness is a challenge to all patients and families, certain factors significantly increase vulnerability. Being financially disadvantaged is one of the most important risk factors for inadequate medical care and premature death.

Losing control over matters that are most important to people, such as an emotional connection to the person they knew, may be exacerbated by the presence of unmanaged psychiatric symptoms. According to the Institute of Medicine’s report of 2001, “A major problem in palliative care is the under recognition, under diagnosis, and thus under treatment of … significant distress … ranging from existential anguish to anxiety and depression”. Psychiatric symptoms of depression, anxiety, and delirium in the chronically ill and in the final stages of life are frequently overlooked, and problems in the spiritual, psychosocial, and existential suffering domains are virtually ignored. Psychosocial concerns of the dying patient include not prolonging death; maintaining a sense of control; minimizing family caregiving burdens; and strengthening ties. When patients’ priorities are not followed, emotional distress will also be experienced by the family caregivers.

Family caregivers experience many mini-losses on multiple levels and for extended periods in the face of serious debilitating illness. The accumulation of assaults on their integrity can undermine the ability to respond in an adaptive manner. The family caregivers of people with advanced disease can also be affected by the caregiver’s own disabling psychiatric problems, although fewer than half these caregivers ever access mental health services. Social workers are trained to identify psychiatric and social problems and they usually have more communication with the families than the rest of the health care team. In cancer settings, social workers are estimated to provide approximately 75% of the mental health services overall. Because families know the patient best, they are able to see changes that a busy physician may not perceive. Patients and family members are also more likely to share information about emotional and family problems with the social worker because they perceive this to be a social work function and also because they do not want to “bother” the doctor with their personal problems. Patients and families perceive the delineation of duties in their own minds and act accordingly. These perceptions are reinforced by the environment and by the attitudes of health care professionals. Social workers may also have the time, interest, and training to talk about emotions, family problems, and psychosocial concerns that some physicians and nurses do not. Ultimately, managing the sense of loss and sadness inherent in having a serious chronic illness or intractable noxious symptoms comes down to trying to put a life into an overall context and staying connected to loved ones even as the reality of separation and loss becomes evident. Within this context, loss is an ongoing process of not being able to control those things that are most valued.

Social work focuses on the strengths of individuals, families, and systems to find resources to manage challenges of loss. By analogy with the traditional pathology and physiology models that focus on the origin of disease and care, the psychosocial model is interested in the genesis of processes that maximize the inherent strengths of people and their systems. Seeing people as part of a social system generates many opportunities for assistance, support, and problem solving. Social workers are best known for their practical problem-solving skills and their ability to identify, link, and actively engage supportive resources.

Credentialing

Medicine has recently made significant progress in credentialing in palliative care. At present, there is no formal process to credential, board certify, or license social workers specifically in palliative care, but this may be changing. As with other professions, there is an increasing consensus that credentialing in palliative care is necessary. Social work organizations and other interprofessional organizations are invested in ensuring the quality of services provided by psychosocial professionals within palliative care. In addition, educational material in the form of comprehensive books and journals focusing on social work competencies in palliative care are now available. The National Association of Social Workers (NASW) in the United States now has online courses on care at the end of life available to its membership of more than 160,000. There are now many conference-based opportunities for social workers to gain knowledge and skills in palliative care.

Most social workers have a 2-year master’s degree from an accredited school of social work. Bachelor’s degrees in social work (BSW) are also awarded and are especially helpful in underserved areas where masters in social work (MSW)–educated social workers are not available. Increasingly, the doctorate in social work will be favored, especially in academic medical institutions. Because social work is present in so many settings, schools of social work are hard pressed to prepare social workers for all the specialty areas. However, palliative care has gained momentum in universities in recent years, and training for social workers in this area has improved significantly.

Social workers differ from other professions in that so many social workers come to the field in the middle of their careers or in midlife. Some of these social workers have experienced significant loses in their own lives and know how to support people as they manage the emotional and practical aspects of healing. The wisdom, maturity, and experience that social workers bring to palliative care offer a great resource for them and for the people they serve.

Social Work Values in Palliative Care

In 1993, the NASW produced the “Client Self-Determination in End-of-Life Decisions,” a policy statement that delineated the needed role of social workers in ensuring that the client’s rights are respected, that clients are fully informed, and that quality of life be valued as an end in itself. In 2003 the NASW reinforced in further policy statements the natural synergies and values between palliative care and social work.

In their 1999 position paper on euthanasia, the Association of Oncology Social Work supported a person’s right to make informed choices, including through open discussion, information gathering, and advocating for best services available, while at the same time clearly limiting the level of social work participation. AOSW does not support assisting in hastening death. Inherent in these statements is the acknowledgment that to begin to address the needs of the chronically ill and the dying, social workers are frequently put in emotionally laden situations of great ambiguity, without adequate training, and within a health care system in dire need of reform. In 1999, a survey supported by the Project on Death in America documented the lack of training opportunities in palliative care for social workers, including education, clinical care, and research.