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Stressful Choices for Surrogate Treatment Decision Makers

Study Shows Long-Term Emotional Impact for People Who Make Treatment Decisions for Ill Loved Ones

Difficult Decisions by Surrogates continued...

The emotional conflicts felt by the surrogates after the decision, he says, may be linked to whether the loved one had instructions or at least a conversation about how the family member felt about treatments, he says.

But most people, Wendler says, don't have an advance directive. "About one-fourth of people fill out an advance directive," he says, citing a survey done in 2006 by the Pew Research Center for the People and the Press.

Those who did, however, saved their loved ones who had to make treatment decision much angst, Wendler says.

"The chances there are going to be guilt and bad feelings on the part of the surrogate often depend on whether they have information from the patient about how they want to be treated," Wendler says.

It's not foolproof, he says, but it does help. "At least in some of the cases, when the surrogate felt confident about what the patient wanted, they will say things like, 'I felt good, I had the opportunity to protect my dad from things he didn't want.'''

Second Opinion

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.

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