Proxy Decision Makers May Have Lasting Emotional Burden

Knowing the patient's treatment preferences helps ease long-term negative emotions

THURSDAY, March 3 (HealthDay News) -- Surrogates who make treatment decisions for incapacitated adults often suffer a negative emotional effect that may last months, or sometimes even years, according to a literature review published in the March 1 issue of the Annals of Internal Medicine.

David Wendler, Ph.D., of the National Institutes of Health in Bethesda, Md., and Annette Rid, M.D., of the University of Zurich in Switzerland, conducted a review of studies assessing how surrogates are affected by making treatment decisions for adults unable to do so independently. The researchers included 11 studies that used quantitative methods and 29 studies that provided qualitative data about a total of 2,854 surrogates. Most of the information was collected months to years after the surrogate had made treatment decisions, which were primarily end-of-life decisions.

The researchers found that, as a result of making treatment decisions, at least one-third of the surrogates experienced a negative emotional burden. These negative effects were substantial, typically lasting months, and sometimes years. Most commonly, surrogates reported stress, guilt about the decisions they made, and doubt about whether they had made the correct decisions. Some studies reported positive effects on surrogates, most commonly supporting the patient and feeling a sense of satisfaction. Knowing the patient's treatment preference was frequently reported as reducing the negative effect on surrogates.

"Clinicians should be aware of the potential sources of burden on surrogates and consider ways to mitigate them. Future research should attempt to identify possible ways to reduce the burden on surrogates," the authors write.

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