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

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 necessarily considered an undesirable place for a loved one to spend his or her final hours. However, despite the caregivers’ abilities to recognize the benefits of having hospital staff available to support a loved one’s dying process, the narratives in this study suggest that guilt feelings are common among caregivers whose loved ones inevitably died in a hospital setting as opposed to the home.

The fourth article, “Care Pathways for the Dying Patients: Physician Perspective,” provides readers with a history on hospice and palliative care in the United States, followed by a unique perspective on death and dying based on in-depth interviews from two palliative care physicians. In this article the authors provide a provocative and thorough critique of the policies and practices associated with physician training and care surrounding the end of life.

In the fifth article, “Magic Happens Here: Environmental Serenity in Residential Hospice Care,” the authors address a less common setting for death and dying: the residential hospice facility. Based on interviews with 40 professionals from eight hospice residences, and a visual content analysis of 187 photographs of internal and external hospice environments, the authors conclude that by practicing a philosophy of care that is patient-family centered, flexible, and comfort focused, residential hospice care centers are uniquely positioned to provide a sense of environmental serenity for families and patients during the end-of-life process. In their discussion the authors argue that this sense of quiet serenity eases distress associated with the dying process and helps create positive memories of the experience that facilitate adaptation in bereavement.

In the final article, “Connections to Place in the Memorialization Practices of Older Adults and Their Families,” the authors conducted a thematic analysis to investigate bereaved family members’ perceptions about decisions and meaning surrounding places of burial and memorialization for their older deceased family members. In this article, the authors grapple with the importance of place-making and place attachment to burial or memorialization sites of loved ones. They found that places of burial or memorialization have a reciprocating influence on fostering both attachment to place and feelings of connection to the deceased.