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Words and experience matter to surrogates making end-of-life decisions

March 22, 2017

Many people do not prepare advanced directives for their end-of-life medical care, so family members must make treatment decisions on their behalf. A new study in the journal Health Communication reveals that both medical terminology and prior experience can influence how surrogates feel after determining whether to administer life-prolonging measures.

Dr. Dawn Fairlie, Assistant Professor at the College of Staten Island of the City University of New York (CUNY), investigated the relationship between end-of-life terminologies and decisional conflict -- defined as a state of uncertainty about what actions should be taken when they involve risk, loss, regret, or a challenge to our values -- in surrogate decision makers. She simulated a situation in which people were asked to decide whether to provide or withhold cardiopulmonary resuscitation as end-of-life care for a loved one. Divided into two randomized groups, study participants received a survey packet that varied only in the phrases "Do Not Resuscitate (DNR)" and "Allow Natural Death (AND)." While the results revealed no difference in decisional conflict (perhaps because the situation was simulated rather than real), Dr. Fairlie did find that AND respondents perceived their decision as good and were eight times more likely to sign the document than DNR participants.

Since participants who had previously been healthcare proxies expressed less decisional conflict, the results also showed that prior experience is an important aspect of end-of-life decision making. In addition, experienced AND participants were more likely to perceive their decision as good and to be sure of their decision, indicating that they responded more favorably to the words Allow Natural Death. Finally, respondents to the DNR version tended not to sign or to postpone signing the document, and were more likely to withdraw from the study than their AND counterparts.

Dr. Fairlie said, "Using three different words has the potential to decrease suffering in the dying and increase peace of mind for their surrogate decision makers. That's an important finding."

Dr. Fairlie encourages healthcare providers to use AND terminology when discussing end-of-life care, not only to help prevent psychological morbidity in surrogate decision makers, but also as a means to avoid futile treatments and painful life-prolonging procedures and to provide dying patients with the appropriate palliative care.
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