The Trouble with Families: Toward an Ethic of Accommodation

Abstract

Although some clinicians are extraordinarily sensitive to the legitimate roles of patients' families in medical crises, a persistent tendency to equate families with trouble is evident in both the literature and the practice of medicine. Some negative presumptions about families derive from western medicine's almost exclusive focus on the individual patient in codes of ethics, training, and practice. Modern bioethics has reinforced this individualistic approach. Physicians' primary responsibilities are unequivocally to their patients, but a complete understanding of the patient's personhood must include consideration of the significant persons who help define the patient's core identity. One source of tension between professionals and families lies in differing perceptions of the roles that family members should play and how they should play them. Members of a family may act as advocates, provide or manage care, serve as trusted companions on the journey through illness and death, and make decisions on behalf of an incompetent patient. Each role presents potential conflicts. Other sources of conflict include disagreement within a family; challenges to physician authority; fear of litigation; and differing religious, ethnic, or cultural traditions. An ethic of accommodation emphasizes the need to negotiate care plans that do not compromise patients' basic interests but that recognize the capacities and limitations of family members. Family caregivers want understandable and timely information, better training, compassionate recognition of their anxiety, guidance in defining their roles and responsibilities, and support for the setting of fair limits on their sacrifices. Health care professionals can better meet these needs through education and skills acquisition, the establishment of partnerships with families, and regular dialogue and communication.