Wishes of the Dying Often Misunderstood
Close relatives of terminally ill people can accurately say what treatment their incapacitated loved ones would want only about two-thirds of the time, a study suggests.
Faced with questions such as whether to insert a feeding tube in a comatose patient, or to perform cardiopulmonary resuscitation if a patient’s heart stops, about a third of the spouses, siblings and adult children did not make the choices the patients would want.
That holds true even when patients have a living will. “Having the piece of paper doesn’t make a difference,” said Dr. Daniel P. Sulmasy, lead author of the study published in the Annals of Internal Medicine of the Philadelphia-based American College of Physicians.
“Talking is the most important thing. Talking about what you want helps the loved one to understand what it is you would want.”
Researchers interviewed 250 terminally ill people being treated as outpatients at hospitals in Washington and Baltimore. They separately questioned the person likely to act as legal surrogate in the event a patient became unconscious or mentally incapacitated.
Patients were asked about specific treatments they would or would not want under three scenarios: permanent unconsciousness, a coma with less than a 1% chance of recovery, and an incurable brain disease such as Alzheimer’s that would leave them mentally impaired.
On average, the surrogates accurately described the patients’ preferences 66% of the time.
Their accuracy was better in the permanent coma scenario than in the hypothetical situations involving severe dementia and coma with a small chance of recovery.
Surrogates also did better at predicting patient choices for procedures such as the use of ventilators and CPR, said Sulmasy, director of Georgetown University’s Center for Clinical Bioethics in Washington. “You live with a person, you know them, but maybe you don’t,” he said.
Choices matched more often when both patient and surrogate had at least a high school education, when they had spoken about such issues, when the patient expected to die within 10 years, and when the sick person had private insurance.
In general, relatives who chose incorrectly were no more likely to err on the side of giving treatment than on the side of withholding it.
The results could help doctors treating incapacitated patients.
“Our study helps clinicians know when to raise their index of suspicion that a patient’s loved one may not be representing the patient’s true preferences,” the study said. “Under these circumstances, the clinician may wish to take additional steps, . . . probing more deeply or involving other relatives.”
An ethics expert who was not part of the research team, Dr. Arthur Caplan, director of the University of Pennsylvania’s Center for Bioethics, called the findings “very troubling.” “The real world is messy, complicated, and it’s likely that the performance is going to be worse than what the study found,” he said.
