This chapter offers some understanding of how mutual help groups come about, what they do for those who participate, and the kind of settings in which they take place with a special focus: when there is a death in the family. The Widow-to-Widow program stood out as an interesting experiment focusing on the value of help from one widow to another widow. There were very few groups at the time that were based on the assumption that help from people sharing common problems was very valuable. Alcoholics Anonymous was the best known. The literature on mutual help and bereavement concentrates on the formal encounters. However, it is the informal encounters that need to be encouraged; in many ways they are the major influence on the way a community responds to grief and helps bereaved persons. Death, dying, and grieving must be part of community discourse.
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Modern hospice and palliative care is approaching a significant anniversary: In 2017 it will be 50 years since the founding of St Christopher’s Hospice. The hospice movement grew very slowly in its early decades, whereas during the last 20 years it has gained acceptance and is now viewed as an essential part of any complete health care system. The most common need for palliative care is cardiovascular diseases followed by cancer, respiratory disease, and a long list of other noncommunicable diseases. This chapter focuses on the global need for hospice and palliative care and the growing efforts to address the economic, political, and cultural challenges of bringing effective end-of-life care to the millions in need around the world. The National Hospice and Palliative Care Organization (NHPCO) is the largest membership organization for hospice and palliative care providers in the United States.
Over the years, health care professionals from many disciplines have contributed to the knowledge base supporting palliative and end-of-life care. This chapter presents a brief description of the nurses who led the development of nursing as a profession as a context for other nursing leaders who contributed to the science and practice of palliative and end-of-life care. It describes nurse leaders whose sustained work influenced end-of-life care in seven major areas: uncovering and combating the conspiracy of silence, making meaning for children and adults as they live with the chronicity of a life-threatening illness, promoting team-based collaborative approaches to care, managing pain and symptoms of children and adults, integrating bereavement as part of patient-centered and family-focused dying care, conducting research, and educating nurses to improve care of people at the end of life.
Like birth, death is a family affair. Whether death is familiar or a feared and unaccustomed event, the death of a loved one has always impacted the family as key caregivers to the dying and eventually those most affected by bereavement. This chapter traces the central elements of the family-centered model of care, from the early work that laid a foundation in the twentieth century to recent studies that have consolidated this approach, before considering the challenges that can limit further development and the hopes for future expansion. It considers the empirical work that initiated family-centered care in bereavement, the tension between approaches focused on deficits versus those built on resilience, and the outcomes of interventions using family therapy. Irrespective of the training and experience of a family therapist, the existential themes in end-of-life and bereavement care are challenges for therapists.
While the home is generally reported to be the preferred setting to receive end-of-life care, and despite it being the wish of a majority of patients to die at home, hospitals are the place where most people die. A chain of events triggered by a panel discussion on death and dying in February 1973 at a local church led to Dr. Mount’s development of a palliative care service pilot project at the Royal Victoria Hospital, a McGill University-affiliated institution. The conclusions of this project were clear: the medical, emotional and spiritual needs of the terminally ill and their families were generally neglected in the delivery of health care. In many countries, the development of hospital-based palliative care services has been largely influenced by the fee-for-service system, a system that very often fails to provide support for the interdisciplinary team beyond physician reimbursement.
This chapter provides a brief history of suicide, describes the dimensions of the problem internationally and in the United States, and highlights approaches designed to aid in understanding, preventing, and intervening in suicidal behavior. The ways in which societies have reacted to self-killing has changed across times and cultures. In the United States, the first suicide prevention center was established in Los Angeles in 1958 with a 5-year grant from the U.S. Public Health Service. The center had three major goals: to save lives, to serve as a major public health agency for the community, and to carry out research on suicide. The most common treatment of overtly suicidal people in the recent past has been to treat them with antidepressants with or without talk therapy. It is much more powerful to consider cases holistically by exploring with them their current dimensions of environmental, psychological, cognitive, biological, and spiritual thinking.
This chapter explores the development of thinking about the ethics of care of the dying and the bereaved within the broader contexts of the history of thinking about the responsibilities of physicians and the emergence of medical/health care ethics in the last several decades. It discusses the history and substance of four fundamental principles recognized as central to a principle-based approach to health care ethics, introduces the idea of respect for persons as the basis for understanding end-of-life ethics as encompassing not only life and death decision making but all aspects of caregiving, and contrasts the principle-based approach with a narrative-based approach to an ethics of care at the end-of-life. Codes of ethics from the 1970s onward have added respect for the patients’ autonomy to the duties of nonmaleficence and beneficence. Nurses, social workers, and others have defined their roles, in part, as advocates for patients.
Like a tornado that sweeps through a community, a suicide can leave in its wake a wide swath of psychological wreckage: shock and confusion, horror, profound guilt, anger and blame, and, of course, sorrow. This chapter offers some background on the impact of suicide, and the domain of postvention. It identifies many of the key figures and landmark intellectual events in the development of suicide postvention in the United States. The chapter discusses current interventions for survivors across different therapeutic modalities, including organizational postvention, and group, family, and individual therapies. There is a cultural shift going on in the United States in which suicide is coming “out of the closet” and increasingly viewed as an important public health problem. The most common form of intervention for suicide survivors is individual grief therapy, with a significant number of survivors seeking mental health consultation at some point in their recovery process.
The earliest American death workers had been members of other trades or occupational groups, and “undertaking” was largely a part-time job. In colonial America, most of the activities following a death were carried out by family members or friends. Funeral customs in the early years of the 20th century were tinged with Victorian era and post-Civil War practices. Infant, child, adolescent, and younger adult mortality was common and especially powerful influences on the emerging practices of that era. Funeral directors have been held to higher professional standards and have striven for more professionalism within the industry. An increasing number of professionals in the field are going on to graduate work or training in fields such as aftercare specialists, bereavement counselors, and as funeral celebrants. Many baby boomers may want a unique funeral experience. As they grew older, baby boomers increasingly questioned the traditional funeral.
This chapter reviews the process of mourning and how thinking about people’s adaptation to loss has developed over the past 100 years. Any survey of this type would obviously begin with Sigmund Freud, the father of psychiatry. Many of Freud’s patients also showed grief symptoms that resembled symptoms of depression. Freud saw grief as necessary after losing a loved one to death. In the 1960s, John Bowlby began publishing groundbreaking work on attachment theory. Attachment theory has provided a key foundation for much of our thinking on bereavement, grief, and mourning, and continues today. Therese Rando is a Rhode Island psychologist whose clinical practice and research have long focused on bereavement. The chapter also looks at the various theories of grief that have been proffered over the past 100 years is a bit like the fable of the blind men and the elephant.