Abstract
EOL communication involving individuals, families, and health care providers is recognized as critical to reducing unwanted, aggressive end-of-life (EOL) treatment and providing high-quality EOL care. Research, however, has focused largely on doctor-patient communication. This study addressed the topic of individual-to-family communication. It used a mixed-methods design, with questionnaires (N=364) providing the quantitative data and focus groups (7 groups of 5–7 people each) drawn from the quantitative sample providing explanatory qualitative data. The quantitative analysis showed that 31% of the sample had not discussed their (EOL) treatment wishes with family members. In addition, 75% of the sample was female, 25% was Black and 23% was Hispanic. A logistic regression model was used to identify factors associated with whether a family conversation had occurred. We found that controlling for demographics and health, being Hispanic was associated with 67% lower odds of having the conversation (CI 0.13–0.82, p=.02). A lower level of family involvement with everyday health care decision-making was associated with 59% lower odds of having the EOL-care conversation (CI 0.27–0.60, p<.001). Also a low knowledge of palliative care was associated with 59% lower odds of having the conversation (CI 0.21–0.75, p=.004). The qualitative analysis identified several thematic obstacles to holding the conversation, including resistance and separation of family members, beliefs that the conversation is unnecessary, and fears of discussing death, in addition to a lack of awareness of tools to promote EOL-care conversations. Further analysis of these results could lead to the development of interventions to promote family EOL-care conversations.