When it comes to making health decisions for an older adult, what health surrogates don’t know can be harmful, according to new research. While 75% of surrogates feel extremely confident in their knowledge of a loved one’s preferences, only 21% of them actually know what the older patient would want in the event of a serious illness, the researchers said.
The study, led by Yale Professor of Medicine Dr. Terri Fried, was published in JAMA Internal Medicine.
The research team recruited 349 patients aged 55 and older from the VA Connecticut Healthcare System, as well as their health surrogates. In telephone interviews, the researchers asked patients to rate as acceptable or unacceptable three health states that could result from treatment of a serious illness. Those health states were: severe physical disability causing them to be bedbound; severe cognitive disability, rendering them unable to recognize family members; and severe daily pain. Separately, the surrogates were asked the same question.
Health surrogates were also asked about their confidence, on a scale of 1 to 5, in their knowledge of what the patient preferred in terms of those health states.
The study found that three quarters of the surrogates rated themselves as “extremely confident” in their knowledge of what health states the patient would find acceptable in the event of a serious illness. Yet, only one in five actually knew what the patient wanted. Even when researchers considered surrogates’ ratings on each individual health state, only between 54% and 59% of surrogates knew the patient’s view of the health state, and extremely confident surrogates were no more likely to know these wishes than those who were less confident.
The findings underscore the urgent need for changes in how long-term care decisions — which often involve the older adult filling out forms on their own — are made. “Advance care planning cannot focus on the patient alone,” said Fried. “The health care agent has to be brought into the conversation.”
Fried also noted that older adults and their health surrogates may need guidance from health professionals in discussing treatments, outcomes, and preferences. “Patients and surrogates need help to see the importance of more communication,” she said. That help might include, for example, an intervention such as a formal assessment of surrogates’ knowledge of their relative’s preferences in terms of specific health consequences. “That could increase the motivation for having the conversation.”
Other study authors are Maria Zenoni, Lynne Ianonne, and John O’Leary.
The study was supported by the U.S. Department of Veterans Affairs Health Services Research and Development Service, and the Claude D. Pepper Older Americans Independence Center at Yale School of Medicine.