Grant: Operating Grant

Lack of appetite (anorexia) and profound weight loss (cachexia)are common among advanced cancer patients. These symptoms can be very distressing for family members who sometimes respond by trying to force feed patients. In contrast, clinicians typically do not endorse aggressive nutritional intervention for anorexia and cachexia, opting instead to let patients decide what, when, and how much to eat. Some family members equate clinicians' non-aggressive response to these symptoms as tantamount to nutritional neglect of the patient. Not surprisingly, nutritional care issues at the end of life are a common source of tension and conflict in the relationship families have with clinicians. In order to work effectively with families around nutritional care issues, clinicians must first understand why family members believe anorexia and cachexia are occurring, and what constitutes an appropriate therapeutic response. This understanding is referred to as an explanatory model, and provides a framework for explaining why people respond in the ways that they do when making sense of illness. The explanatory model that informs clinicians' understanding of, and thus responses to anorexia and cachexia are found in biomedical literature. However, no research has been conducted explicating family members' explanatory models of these symptoms. We hypothesize that the tension and conflict that occurs between family members and clinicians about how to manage anorexia and cachexia is a function of divergent explanatory models. In order to work effectively with family members, clinicians must first understand the explanatory models that families hold. We propose to interview fifty family members of terminal cancer patients to explicate their explanatory models. Such understanding will provide the foundation from which meaningful educational and psychosocial interventions for families can be developed and tested, thereby improving the care of family members of the terminally ill.