A new Yale-led study indicates that older adults frequently do not clearly communicate their end-of-life preferences to “surrogates,” loved ones selected to make health care decisions on their behalf.
The study, which was published in the journal of the American Geriatrics Society on March 20, involved 350 veterans and the person each would select as their surrogate decision maker, according to the study paper. The researchers interviewed the veterans and surrogates separately to evaluate how well surrogates knew the end-of-life goals of their pair. The researchers measured whether both individuals in the pair agreed that the veteran had communicated his or her preferences and the surrogates’ ability to accurately predict different elements of veterans’ preferred end-of-life care, based on theoretical treatment outcomes.
“Appointment of a health care proxy alone does not [ensure] that the proxy is prepared for surrogate decision making,” the paper stated. “These findings reinforce recommendations that [advance care planning] is not complete without communication between patients and their surrogates.”
Nevertheless, even in pairs that reported such communication, 70 percent of surrogates did not know patients’ preferences, according to the research.
The researchers assessed surrogates’ knowledge by asking them to predict whether veterans would want treatment even if that treatment could cause pain or impact the patients’ cognitive abilities or physical state. If the surrogate correctly predicted the veterans’ wishes in all three measures, the researchers considered that surrogate to be knowledgeable. According to the study paper, the researchers also asked pairs whether the veteran had completed a living will or health care proxy and whether the pair had discussed quality versus quantity of life.
The pairs of veterans and surrogates, also called “dyads,” either agreed that communication had not occurred, agreed that communication had occurred or disagreed about whether or not communication had occurred, according to the study paper. The surrogates in dyads that disagreed were least likely to accurately predict the veterans’ wishes, with only 15 percent of surrogates in these groups accurately predicting all three measures.
According to the Centers for Disease Control and Prevention, most Americans would prefer to die at home, but only about a third of adults have set their preference out in writing.
The National Institutes of Health recommends that in choosing a medical proxy, patients consider individuals who “share their views and values about life and medical decisions.”
Some organizations, such as The Conversation Project, provide tools to help facilitate discussions about end-of-life care. Their website explains that “too many people are dying in a way they wouldn’t choose, and too many of their loved ones are left feeling bereaved, guilty and uncertain.” Another project, the PREPARE website, “uses videos and stories to teach people how to identify their values and goals for medical care and to make medical decisions.”
The study’s findings indicate that even pairs who agree about participation may need additional support for advance care planning to succeed.
The proportion of Americans aged 60 and older will reach 26 percent by 2050, according to the U.S. Department of Health and Human Services.