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.
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.
| Original language | English |
|---|---|
| Article number | 44 |
| Pages (from-to) | 44 |
| Journal | BMC Palliative Care |
| Volume | 19 |
| Issue number | 1 |
| DOIs | |
| Publication status | Published - 2 Apr 2020 |
Bibliographical note
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Keywords
- End-of-life
- Mixed methods
- Self-other differences
- Substituted judgment standard
- Surrogate decision-making