Too much hope can extend end-of-life suffering

Hope sign

Family members and friends who make decisions for critically ill patients often have significantly different and overly optimistic beliefs about their loved one’s prognosis—which can color decisions about end-of-life care.

“It isn’t a bad thing for a patient’s family and friends to have hope that they will recover,” says Douglas B. White, professor in the critical care medicine department at the University of Pittsburgh and director of the department’s program on ethics and decision-making and lead author of the study that is published in the Journal of the American Medical Association.

“However, it is problematic when those overly optimistic expectations result in more invasive treatments in dying patients and delayed integration of palliative care that can alleviate suffering.”

[Patients, caregivers differ on end-of-life care]

Between 2005 and 2009, researchers surveyed 229 people who had agreed to be the “surrogate decision-maker” for hospitalized patients in four intensive care units at the University of California, San Francisco Medical Center, where White was a faculty member. These surrogates were typically family members or friends of the patient. They also surveyed physicians caring for the patients for which the surrogates were making decisions.

Surrogates and doctors were both asked to estimate the chances that the patient would survive hospitalization on a scale of 0 (no chance of survival) to 100 (definite survival). They did not know each other’s answers.

In 53 percent of cases, the answers differed by more than 20 percent. The surrogates were usually more optimistic than the doctors, however the doctors’ estimates of the patient prognosis were ultimately far more accurate.

The surrogates were then asked to guess how the patient’s doctor answered. Generally, the surrogates would guess somewhere in between their estimate and the doctor’s real estimate, which shows they understood they were being more optimistic than what the doctor had been communicating to them.

[How should paramedics handle end-of-life care?]

Surrogates explained their optimism in several ways, most notably if they maintained hope, then the patient would do better than expected. They also said they knew the patient better than the doctor and believed the patient had strengths the doctor didn’t know about. In some case, optimism was grounded in caregivers’ religious beliefs.

“As doctors, we want to provide the best possible care for our patients. In critically ill patients, that means we must do a better job communicating with the people who are making decisions for our patients,” White says.

“Given the results of this study, we’re working to develop and test interventions both to improve the comprehensibility of the prognosis doctors give to surrogates and to better attend to the emotional and psychological factors that may influence the surrogate’s expectations for their loved one’s outcome.”

Other researchers from the University of Pittsburgh, the University of Washington, the University of California, San Francisco, and Statistics Collaborative in Washington DC are coauthors of the study, which was supported by the National Institutes of Health.

Source: University of Pittsburgh

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