ABSTRACT
Critically ill patients are often unable to make decisions about life-sustaining treatments and surrogate decision-makers are relied upon. However, it is unclear how accurately the surrogates' decisions reflect patients' intentions and expectations. We interviewed 36 pairs of patients and their appointed surrogate decision-makers about their decisions regarding nine treatments in each of three scenarios. The scenarios were persistent vegetative state, coma with likely neurological damage and chronic disease with dementia. The patients were interviewed 24 hours after they had undergone elective surgery under general anaesthesia. The surrogates were interviewed separately by the same interviewer. There was poor agreement between decisions made by the patients and their surrogates. The patients' and surrogates' summary scores (median (interquartile range) [range]) for treatments were 0 (0-4) [0-9] vs 8 (0-9) [0-9] for the vegetative state scenario, 3 (0-9) [0-9] vs 9 (0-9) [0-9] for the coma scenario and 3 (0-9) [0-9] vs 9 (4-9) [0-9] for the chronic disease scenario. The significantly higher surrogate scores suggest that the surrogates' decisions would have resulted in the patients having far more treatment than the patients would have wanted. In our participants, there was poor agreement between the decisions made by surrogates and patients. Further study is needed on measures such as facilitated discussions, advance directives and the difficulties that surrogates face, in order to improve the accuracy of surrogates' decisions and respect of patients' autonomy.
