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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
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WebMD Health News
Reviewed by Laura J. Martin, MD

March 1, 2011 -- Family members and others who act as surrogates, making treatment decisions for incapacitated loved ones, are sometimes affected adversely for months or years, according to a new review of published studies.

''Making these decisions has a profound effect on at least a substantial minority of surrogates, and it's often negative," says researcher David Wendler, PhD, head of the unit on vulnerable populations at the National Institutes of Health.

Guilt, stress, and doubt about whether the right decision was made are often reported by these surrogates, he found.

That's understandable, he says, because of two factors: "The vast majority of these were life-and death decisions," he says. And most surrogates did not have specific instructions in the form of an advance directive to be sure they were doing what their loved one wanted.

''It's more likely to be much more stressful and much more likely there will be regret, remorse, and second-guessing if the surrogates don't have a sense of how the patient wants to be treated," Wendler tells WebMD.

Those loved ones who had instructions from the patient about how they wished to be treated did much better, Wendler says. "When they have this information, they feel they are 'channeling' the wishes of the patients," Wendler tells WebMD.

Wendler reviewed 40 previously published studies, and his findings are published in the Annals of InternalMedicine.

Difficult Decisions by Surrogates

Wendler searched medical literature databases, gathering studies done before July 2010. He then focused on the 40 studies that included data from 2,854 surrogates, more than half of whom were family members of the incapacitated patients.

The surrogates were surveyed several months to years after making treatment decisions. Most of the studies focused on end-of-life treatment decisions, such as deciding whether to start or withdraw life-sustaining treatments. 

Comments from the surrogates reflect the difficulty, with many saying it was the hardest thing they ever did.

"In end-of-life cases, if you decide to put them on a ventilator you will later think, 'Oh, I tortured them,'" Wendler says. "If you don't, you'll think you should have."

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.'''

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