(Reuters Health) - People entrusted with decision-making for incapacitated loved ones tend to believe they know what their loved ones would choose - but the vast majority of surrogate decision-makers in a recent study were wrong about loved ones’ wishes.

Researchers who interviewed patients and their surrogates separately found that just 21 percent of patients and surrogates were on the same page when it came to rating whether specific situations - for example, feeling daily pain, as with a broken bone or appendicitis - would be acceptable.

“Patients and their loved ones actually tend to overestimate how well they’ve talked to each other and how well the loved ones understand what the patient would want under circumstances of advanced illness and making decisions about those illnesses,” said the study’s lead author, Dr. Terri Fried, a professor of medicine at the Yale School of Medicine and an attending physician at the VA Connecticut Health Care System. “The thing that’s particularly disturbing in this study is we asked how confident they were and their confidence level was high.”

The problem is that many assume they’ve made their wishes clear when they haven’t, Fried said. “It’s not a conversation that comes naturally,” she added. “And people often mistake passing comments, when they see something on TV, as what their loved one would want. So some ER show might be on and the patient might say ‘O gee, I don’t want that to ever happen to me,’ and the surrogate thinks that means they’ve had a conversation.”

There are consequences for the surrogate who doesn’t really know what their loved one wants.

“It’s been found in other studies, that after having to make such decisions, surrogates often felt very burdened and afterwards felt like they didn’t know enough about the patient’s wishes to make an informed decision,” Fried said.

Instead of focusing on specific treatments, like mechanical ventilation, for example, the researchers focused on outcomes that a patient might or might not want to live with.

Those outcomes were: being bedbound and requiring assistance with bathing, dressing, grooming and toileting; being unable to recognize family members; daily pain feeling like a broken bone or appendicitis.

“It’s important to noted that the whole telephone survey probably took about 20 to 25 minutes and interviewers were asking questions about planning for the future and health care decisions,” Fried explained. “So, if people had questions, the interviewer could clarify anything the responder didn’t understand.”

As reported in JAMA Internal Medicine, the 349 patients in the study were randomly selected from a list of community-dwelling military veterans aged 55 and older who were receiving primary care through the VA Connecticut Healthcare System. At the outset, the patients were asked to provide the name of the person they would choose to make medical decisions if they were incapacitated. More half of the surrogates, 52 percent, were patients’ spouses.

Patients’ and surrogates’ responses were in agreement on single outcomes between 54 and 59 percent of the time. But surrogates got it right for all three outcomes just 21 percent of the time. Nevertheless, 75 percent of surrogates rated themselves as extremely confident that they knew what the patient’s wishes would be. And among those who were extremely confident, just 23 percent were correct in their prediction for all three outcomes.

Because people’s attitudes can change over time, Fried recommends people have not just one conversation about their wishes, but also to return regularly to the topic.

Dr. Albert Wu wasn’t surprised by the findings. “Americans are not comfortable thinking about death, especially their own,” said Wu, an internist and professor of health policy and management at the Johns Hopkins Bloomberg School of Public Health. “And I think we are very uncomfortable having these conversations.”

While it may be difficult to talk about the topic, “it will be much more difficult to have the conversation at a time of crisis,” said Wu, who was not involved in the new study. “We don’t have enough of these discussions and we don’t have them soon enough to learn what a loved one wants. If we were to do so, a lot more people would have the kind of death everyone really wants to have: to die in bed without too much pain surrounded by your loved ones.”

SOURCE: bit.ly/2TLZczV JAMA Internal Medicine, online November 26, 2018.