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When Doctors and Surrogates Disagree on Time Left

August 07, 2016

According to the Pew Research Center, 42 percent of Americans have had a friend or relative suffer from a terminal illness.

These situations are fraught with emotion, especially when a friend or family member has to make care decisions for a loved one or hear heartbreaking news about that person’s prognosis.

According to one recent study, there’s a huge gap between how friends and family view their loved one’s prognosis and doctor’s perspective about the same person’s health outcome. 

The study, recently published in the Journal of the American Medical Association, found that more than 50 percent of doctors and patients’ surrogates — or those who are in charge of their care — have different perspectives about whether the patient would live or die.

Researchers from the University of Pittsburgh Medical Center conducted the study to gauge how surrogates process information from their loved one’s doctor. They surveyed 229 people who played this health advocate role for 174 intensive care patients between 2005 and 2009. The surrogates were asked to rate their loved one’s likelihood of survival on a 1-to-100 scale. Researchers then compared their answers to the doctors who were on duty on found that there was a 20-percent gap about 53 percent of the time between doctors and a surrogate’s perspective about the patient’s prognosis. 

Not surprisingly, surrogates were more optimistic, even though doctors were more accurate. About 33 percent of surrogates were more optimistic than doctors even when they clearly understood the prognosis. Seventeen percent were more optimistic even when they misunderstood the information doctors provided. 

There are several reasons surrogates hold onto hope for their loved one. Many participants in the study said they felt an optimistic attitude was a good thing for their loved one, while others indicated that since they knew the patients better than their doctors and how much they had a will to live, they thought their loved one was capable of overcoming the prognosis. Twenty-five percent of surrogates said their religious beliefs caused them to be more optimistic. However, even though doctors maintained what many surrogates would call a less optimistic view of the patient’s health, they were right most of the time. Unfortunately, 40 percent of the 174 intensive care unit patients in the study died. 

It’s only natural that surrogates — and patients themselves — would have a difficult time accepting a prognosis. According to the study’s researchers, more than half of Americans near the end of their lives had difficulty making decisions for themselves about whether to accept treatment that would prolong their life. Many of these people rely on family members or close friends to make these decisions, a huge responsibility that is filled with emotion. In these circumstances, decision making is more difficult and how we receive medical information isn’t as straightforward as you might think. 

What this study shows is that we as doctors need to make an additional effort to regularly check in with surrogate decision-makers of critically ill patients to ensure they truly understand the information we’ve given them. Once we know they have a clear understanding, we can proceed to work with these surrogates to make the best care decisions for patients.

We also should try to understand what’s at the root of this perception gap between doctors and surrogates. If it’s a lack of understanding, then we can address it with more information. If it is a deeply-held belief system, related to religion or because a surrogate believes a patient has intrinsic strength we may not understand, then we need to develop interventions that specifically address these root causes. 

Having doctors and surrogates on the same page is in the best interest of the patient. It’s understandable that friends and family members want to maintain an optimistic view for their loved ones, but when this interferes with decision-making it can affect a patient’s care. However, we can bridge this gap by taking more time to explain — and re-explain — a prognosis to patient surrogates and provide them all the support and resources they need to make the best care decision for their loved one.