The role of proxies in treatment decisions: evaluating functional capacity to consent to end-of-life treatments within a family context

Psychology as a profession has entered the arena of palliative and hospice care later in the process than other health care professions. Through the use of Familial Advance Planning Evaluations (FAPEs), however, psychologists can assist individuals and families in facing end-of-life transitions in important ways. Hospice and palliative care philosophy treats the patient and family as the unit of care. End-of-life decision-making is therefore a family matter as well as a normative developmental transition. Yet, little is known about the decision-making process. This paper reviews the literature regarding informed consent, advance care planning, and proxy decision-making and outlines a theoretical model for familial decision-making. Previous models of end-of-life capacity evaluations and family assessments are presented and serve as the basis for a comprehensive assessment of familial decision-making at the end of life. Functional capacity evaluations of individuals at the end of life regarding decisions about life-sustaining medical treatments enable both the individual patient and one identified proxy from his or her family to discuss important issues families may face during medical crises at the end of life. The information gleaned from such evaluations has the potential to assist psychologists and other professionals in designing family-specific interventions to reduce caregiving distress, improve quality of life for dying patients, and ease the transition to bereavement for caregivers.