"I don't want to die like that ...": the impact of significant others' death quality on advance care planning

Abstract

Purpose of the study: I examine whether 5 aspects of a significant other's death quality (pain, decision-making capacity, location, problems with end-of life care, and preparation) affect whether one does advance care planning (ACP). I also identify specific aspects of others' deaths that respondents say triggered their own planning.

Design and methods: Data are from the New Jersey End of Life study, a survey of 305 adults age 55+ seeking care at 2 major New Jersey medical centers. I estimate multivariate logistic regression models for a subsample of 253 participants who recently lost a loved one and provide descriptive findings from an open-ended question regarding the motivation for one's ACP.

Results: Multivariate analyses revealed "positive" role model effects; persons who witnessed significant others' deaths that occurred at home, were free of problems associated with end-of-life care, and where advance directives were used are more likely to make end-of-life preparations. Open-ended data showed that 19% cited others' deaths as the main trigger for their own planning, with most citing negative factors (pain, connection to machines, coma) that they hoped to avoid.

Implications: Practitioners should encourage patients to use conversations about others' deaths as springboards for discussions about one's own end-of-life care, and to engage in ACP together with family. Implications for health care reform are highlighted.

Figure 1.

Of those doing advance care planning (n = 138), percentage reporting main reason why done at that time.