Environments of Dying, Death, and Caregiving at End-of-Life

Abstract

The process of dying, the provision of care associated with the end of life, and rituals of mourning and memorialization are all profoundly shaped by the physical places and social environments in which death occurs. Matters of dying are not only physical, emotional or spiritual, they are also relational, cultural, and political. Decision making about medical interventions, caregiving, location of death, and burial are complicated by numerous factors. For example, diagnosis and life stage of the dying, patient/caregiver family dynamics, relationships with physicians and nurses, personal beliefs about death and dying, and the ethos of end-of-life care espoused by varying health care systems influence our evaluations of what it means to experience a “good death,” and our bereavement. This special issue of the Journal of Housing for the Elderly includes six empirical articles focused on the environments of dying, death, and caregiving at end-of-life for older adults. The first four articles constitute a collection of papers by researchers at the University of Missouri that are derived from a larger, narrative project addressing older patients’, family caregivers’, and physicians’ perspectives about the process of dying in three different environments: home, nursing home, and hospital. A broad introduction entitled “Place of Death and Dying: Introduction” precedes the four empirical articles that developed from this project. The fifth and sixth articles in this issue constitute original research from others that address dying in residential hospice facilities, and places of burial and memorialization practices, respectively. In the first empirical article, “The Motivations and Consequences of Dying at Home: Family Caregiver Perspectives,” the authors present a rich understanding about the meaning of home in the context of dying. Relational aspects of death and dying, especially relating to family and the co-conspiratorship between family, home, and experiencing a “good death,” are major themes derived from this study. The authors challenge the notion that dying at home is synonymous with dying well, and recommend that practitioners and caregiving families focus less on controlling the physical location of death and instead focus on evoking the “essence of home” regardless of location. The second article, “The Last Habitat: Living and Dying in a Residential Care Facility,” addresses patient and family caregiver perspectives about the phenomenon of dying in a residential care facility or nursing home. Based on the findings, the authors suggest that dying in a nursing home is arguably less dignified and more isolating than dying at home or in a hospital due to the chronic health conditions that typify nursing home residents and the ways nursing homes are physically, financially, and operationally structured. In the next article, “The ‘Medicalized Death’: Dying in the Hospital,” the authors present four cases of caregiver perspectives on dying in the hospital setting. In this study the “good death” vsersus “bad death” debate is central to the caregivers’ stories. Inconsistent with popular thought, the authors found that the hospital is not