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Faced with a high likelihood of poor outcome treatment choice is difficult and few people are certain about what they would, or would not, want. Recognising this we sought to explore how individuals react to hypothetical choices made on their behalf by surrogate decision-makers.

We used an online survey, using a hypothetical scenario involving a 95% chance of poor outcome and 5% chance of good outcome. There were 510 participants. Most (63%) expressed uncertainty regarding preference for treatment. 37% expressed certainty (12% certainly wanting treatment and 25% certainly not wanting treatment).  Seventy seven percent indicated they would be understanding or pleased if the surrogate chose to treat, while 92% were understanding or pleased with a decision not to treat by a surrogate decision maker.

Patients who had expressed ‘certain’ wishes when presented with the scenario (either certainly wanting or certainly not wanting treatment) were more likely to be angry/upset when surrogates made the opposite decision. Those who had completed an Advance Care Plan (ACP) were more likely to be angry/upset when these wishes were not followed.

This finding suggests it may be unrealistic to expect surrogate decision-makers to identify ‘what the patient would want’ as a binary choice between consenting to treatment or refusing treatment when chances are poor and the decision is difficult.  Asking surrogates to identify choices that they believe would be likely to make the person angry or upset might be more appropriate and more effective.

Most people were understanding of decisions made by surrogates (whether these matched their preference or not). This finding should be used to reassure surrogates who are required to make difficult decisions.

Additionally, factors associated with patient upset/anger at surrogate treatment decisions were identified. This most commonly included those patients who had documented wishes in an Advance Care Plan that was not followed.