Consent in intensive care: The concurrence of patients’ and families’ viewpoints. A simulation study

BACKGROUND: Many patients in intensive care cannot communicate their preferences about treatment, therapeutic goals, and expectations of quality of life, and physicians must therefore speak to their families to determine what they would want. We studied the accordance between patients' preferences about intensive care and the worst impairment of quality of life that they would be willing to accept and their families' assessment of these preferences. METHODS: Inpatients on non-intensive-care wards at risk for future need of intensive care and their relatives were separately asked about the patient's wishes concerning eight treatment options and six quality-of-life goals. Degrees of accordance were studied with simple matching and Manhattan Distance Scores, and associations between patient features and degrees of accordance were determined by linear regression analysis. RESULTS: Actual and presumed patient wishes agreed in 82.1% of cases on average. Depending on the measure in question, 1.0% to 8.6% of families wrongly thought that the patient would reject it, and 0% to 6.7% wrongly thought that the patient would accept it. The postulated and actual wishes of the patient about tolerable impairments of quality of life agreed in 86.4% of cases on average. Degrees of accordance were greater when the family members' wishes for themselves more closely resembled those of the patient (adjusted mean differences: 0.52, 95% confidence interval [0.39; 0.65], p < 0.001 and 0.66 [0.51; 0.81], p < 0.001). CONCLUSION: When patients' wishes are misjudged, the treatment they receive may not be in their best interest. Clear communication ahead of time between patients and their relatives, as well as the provision of information on this topic in advance by medical personnel, may lessen uncertainty about future intensive care.