Shared priorities for the end-of-life period

Abstract

This study investigated end-of-life priorities of terminally ill patients and their intimate associates. A primary goal was to reduce the number of items in an existing instrument measuring survivors' evaluations of the quality of dying and death. Three Seattle-area patient samples (chronic obstructive pulmonary disease patients, hospice patients, and participants in an efficacy trial of complementary comfort care) and their significant others provided priority rankings of 26 experiences at end of life. Two items represented top priorities for all subgroups: time with family/friends and pain control. Clustered multivariate probit regression models suggested only a few significant differences between participant groups in priority rankings: higher education increased the priority placed on having available means to hasten death, cancer patients and persons in the hospice sample (likely those experiencing disproportionate pain) assigned pain control higher priority than other groups, persons in the clinical trial (which included massage as an intervention) assigned higher priority to human touch, and racial/ethnic minorities emphasized the importance of having funeral arrangements made. In the clinical trial sample (the most recently interviewed), the importance attributed to taking care of health care costs increased over time. If researchers were to use a reduced set of the 17 items mentioned among the top five priorities by at least 10% of the sample, none of the items that varied significantly between subgroups or over time would be eliminated. This change would reduce respondent burden in future investigations, simplify analyses aimed at identifying domains underlying the dying-and-death experience, and exclude the top-priority item of fewer than 4% of respondents.