Stressful Choices for Surrogate Treatment Decision Makers
Study Shows Long-Term Emotional Impact for People Who Make Treatment Decisions for Ill Loved Ones
Wendler's findings make sense to Daniel Sulmasy, MD, PhD, the Kilbride-Clinton Professor of Medicine and Ethics at the University of Chicago, who has also published on the topic.
Focusing on surrogates' stress is relatively new, he says. "For the last 30 years in bioethics, we have been emphasizing the autonomy of the patients, not recognizing that the person in most of the tough situations [regarding decisions about treatment for incapacitated persons] is not the patient but the surrogate,'' Sulmasy tells WebMD.
"We've almost acted as if the surrogate is a passive conduit of the patient's preferences instead of a real human being often bearing a very close relationship with the person about whom the decisions are being made."
As a result, he says, "it should not be surprising to us that this is stressful. What may be more surprising is, it's taken a while to look at it."
Sulmasy has also found that those who have an advance directive in place "or at least a conversation about their wishes" spare their surrogates much stress.
''Being a surrogate can be as stressful as having your house burn down," Sulmasy says, citing research which found the stress scores of those who were a surrogate were sometimes similar to scores of those who had had a house fire.
''We need to do more research about trying to make it easier for family members," he says. That should include giving doctors and other health professionals more guidance about how to approach surrogates, how to talk to them, and when, he says.
The findings point to a need for more people to fill out advance directives that spell out their wishes about treatments they do and don’t want, Wendler says.
The National Hospice and Palliative Care Organization offers information about advance directives, including state-specific information.