ABSTRACT
Introduction Historically, families were primarily shaped by the experience of death of family members. In the United States, as the advent of end-of-life care increased life expectancy, the beneficent and often paternalistic voice of medicine began to progressively drown out the voices of patients and families whose values suggested that there may be fates worse than death (Field & Cassel, 1997). Over the course of the last few decades, recognition of the interdependence and mutual influence between the patient and the family as a whole progressively disappeared in institutionalized medicine (Nelson & Nelson, 1995). This holistic perspective of the family’s role at the end of life has been replaced, to a large extent, with an instrumental view of the family’s sole purpose as service to the individual, rather than also bearing in mind the ways in which individuals within a family collectively contribute to the entire family system. The institution of the family has lost its decision-making voice within the institution of medicine (a term used interchangeably with the health care system), and is now seen primarily as a substitute voice for a dying individual when the patient is unable to speak for him or herself (Nelson & Nelson, 1995; Winzelberg, Hanson, & Tulsky, 2005).
