Objective, overall: To summarize the issues and research about the family as the patient in end-of-life research and clinical care.
In most health care settings the term “patient” refers to an individual who is receiving health care services (Urdang, 1983). In most early references, the word “patient” refers to one person. In some settings however, the “patient” is a social group such as a family. This is most notable in community health, home health, mental health and hospice settings. Hospice has long accepted the family as the unit of care (Meyer, 2000). In addition, since most hospice care is home based, certain basic assumptions that provide a framework for providing end-of-life care in the home setting have been adopted.
Acceptance of the concept of the family as the unit of end-of-life care in other settings has been growing over the past decade. This examination of the family as the principal recipient of end-of–life care examines the nursing research and a) describes the historical view of “patient” is in various settings, b) defines family in the context of end-of-life care, c) defines the end-of-life period, c) summarizes the perceptions of who is the patient in various end-of-life care settings, based on a systematic review of the current literature and d) raises issues for research and clinical practice.
Providing care for families throughout the end-of-life periods is desired by families, increases the families’ satisfaction with end-of-life services, increases the perception of quality of care, and in some studies has shown improvement in family members well being and adjustment to grief in the bereavement period. Families desire to be included in end-of-life care. If we can examine various ways of preparing families for death and caring for them during the end-of-life period and demonstrate improved health care outcomes of family members, this knowledge would be conceptually and clinically significant across settings in which end-of-life care is performed.
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