Doing Everything: Treating Legal Fears near the End of Life
A firm legal ( Meisel, 1992) and ethical ( Hastings Center, 1987) position has developed in the United States over the past quarter century in favor of shared medical decision making, including but not limited to ( Wolf & Becker, 1996) decisions regarding the critically ill and dying. This position is premised on a process of communication and negotiation over time taking place among the mentally capable patient, family members and significant friends, physician, and other members of the health care team (President's Commission, 1982; Cummins, 1992; Miller Coe, & Hyers, 1992). Such a process best embodies the important value of individual patient autonomy ( Gauthier, 1993).
Recent studies have scientifically documented through health services research techniques what health care providers, patients, and families have long known by instinct and personal observation ( Quill, 1995)--namely, that medical care near the end of life too often deviates widely from the clinical, emotional, and indeed ethical ideal. In the early 1990s, the Robert Wood Johnson Foundation headquartered in Princeton, New Jersey, lavishly funded the Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatment (SUPPORT), designed to increase understanding of the process of hospitalized dying and to devise interventions--that is, improved communications, clarification and coordination of patient and family pref