Autopsy recruitment program for African Americans

A specialized brain autopsy recruitment program was implemented within the context of advance medical directives and end-of-life treatment decisions. The program was implemented within the framework of a larger study. The purpose of the program was to (1) improve the rate of consent for brain autopsy among African Americans diagnosed with stroke and dementia, and (2) obtain more empirical information on the underlying reasons for the low response rate (4%) in this minority group. A convenience sample of 133 patient and family caregiver pairs was selected for participation. Face-to-face, open-ended interviews were conducted to ascertain reasons for autopsy preferences and to identify respondents interested in the postmortem procedure. Preferences for brain autopsy were ascertained and individuals interested in the procedure were subsequently followed through death or over the 2 1/2 year course of the study. Brain necropsies were conducted on patients requesting the examination. Thirty-six (36) patient and family pairs consented to the procedure, 16 were indecisive and 81 refused. Factors influencing decisions included existing attitudes toward autopsy, family agreement regarding the procedure, and assurance that funeral arrangements would not be delayed. Ninety deaths and two autopsies were conducted before implementation of the specialized recruitment program, yielding a 2.22% completion rate, and 34 deaths with 10 postmortems conducted within the time frame of the recruitment study, yielding a 29% autopsy completion rate. Fisher exact test (p < 0.0001) revealed a significant difference in the proportion of autopsies completed before and after implementation of the specialized recruitment program. Findings strongly suggest that culturally sensitive recruitment programs may increase the rate of autopsy request made by African American caregivers for relatives diagnosed with dementia and stroke. To obtain a higher rate of consent than that obtained in the general population, the program must contain ethnically sensitive recruitment strategies.