A mixed methods investigation of end-of-life surrogate decisions among older adults

Abstract

Background: A large number of end-of-life decisions are made by a next-of-kin for a patient who has lost their decision-making capacity. This has given rise to investigations into how surrogates make these decisions. The experimental perspective has focused on examining how the decisions we make for others differ from our own, whereas the qualitative perspective has explored surrogate insights into making these decisions. Methods: We conducted a mixed methods study to bring these two perspectives together. This is crucial to comparing decision outcomes to the decision process. We asked older adult partners to make end-of-life decisions for each other. They then took part in a semi-structured interview about their decision process. Transcripts were analysed using thematic analysis. Results: 24 participants took part in the study. Surrogates were more likely to take a life-saving treatment at the risk of a diminished quality of life for their partner than for themselves. This was consistent with their transcripts which showed that they wanted to give their partner a better chance of living. Although there was evidence of surrogate inaccuracy in the decision task, participants overwhelmingly reported their intention to make a decision which aligns with the substituted judgment standard. However, uncertainty about their wishes pushed them to consider other factors. Conclusions: Taking a mixed methods approach allowed us to make novel comparisons between decision outcome and process. We found that the intentions of surrogates broadly align with the expectations of the substituted judgment standard and that previous discussions with their partner helps them to make a decision.