The effects of race on patient preferences and spouse substituted judgments

Knowledge about the ways in which race affects decision-making at the end of life is minimal, yet this information is critical for providing culturally sensitive care at the end of life. Data matching socio-demographic characteristics of 34 black and 34 white patients with end-stage renal disease and their spouses reveal that there are no significant differences in the preferences to continue dialysis on the part of black and white patients. However, the substituted judgments of black and white spouses differ from one another, with black spouses being more likely to indicate that they believe that the patient would be more inclined to continue dialysis under a host of hypothetical conditions than white spouses. Structural equation modeling analyses revealed that differences in spouse substituted judgments between black and white spouses are explained as a direct function of race differences in perception of patient's health, and caregiver burden, and that indirect effects are associated with spouse's fear of death and participation in religious services. We conclude that these variables rather than race per se explain differences in end of life decision making.