Relatives with decision-making power in health care often have too much self-esteem

(Reuters Health) – People making decisions about loved ones with disabilities tend to believe they know what their loved ones would choose – but the vast majority of replacement decision makers in a recent study were wrong to consider the wishes of their loved ones.

Researchers who interviewed patients and their surrogates separately found that only 21% of patients and surrogate mothers were on the same wave length when it was assessed whether or not specific situations – for example, feeling daily pain, such as a fracture or appendicitis – would be acceptable.

"Patients and their loved ones tend to overestimate how well they have spoken to each other and how much they like to understand what the patient would want in times of advanced illness and to make decisions about these illnesses," he said. 39, lead author of the study, Dr. Terri Fried, professor of medicine at the Yale School of Medicine and attending physician of the VA Connecticut health system. "What is particularly troubling in this study is that we asked them how confident they were and how confident they were."

The problem is that many assume they have clearly expressed their wishes when they have not done so, Fried said. "It's not a conversation that comes naturally," she added. "And people often confuse comments, when they see something on television, with what their loved one would like. So the emergency broadcast may be broadcast and the patient says, "I do not want it to ever happen to me," and the surrogate thinks it means they've had a conversation.

There are consequences for the surrogate who does not really know what her loved one wants.

"It has been found in other studies that after making such decisions, surrogate mothers often felt very heavy and then felt that they did not know enough about the wish the patient to make an informed decision, "said Fried.

Instead of focusing on specific treatments, such as mechanical ventilation, for example, the researchers focused on the results with which a patient might or might not want to live.

These results were: being bedridden and needing help with bathing, dressing, grooming and bathing; be unable to recognize family members daily pain felt like a broken bone or appendicitis.

"It's important to note that the entire telephone survey probably took about 20 to 25 minutes and that the interviewers asked questions about future planning and health care decisions," Fried said. "So if people had questions, the interviewer could clarify anything the respondent does not understand."

As reported in JAMA Internal Medicine, the 349 patients in the study were randomly selected from a list of veterans aged 55 and over living in the community and receiving primary health care through the health system VA Connecticut. In the beginning, patients had to indicate the name of the person they would choose to make medical decisions in case of disability. More than half of the surrogate mothers, 52%, were wives of patients.

The responses of patients and surrogates were in agreement on the individual results between 54 and 59% of the time. But surrogates were right for all three results only 21% of the time. Nevertheless, 75% of the surrogates said they were extremely confident about what the patient's wishes would be. And among those who were extremely confident, only 23% were right in their predictions for the three results.

As the attitude of people can change over time, Fried recommends people not only have a conversation about their wishes, but also to come back regularly to the subject.

Dr. Albert Wu was not surprised by the results. "Americans are not comfortable thinking about death, especially theirs," 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."

Even though it may be difficult to talk about the subject, "it will be a lot harder to have the conversation in times of crisis," said Wu, who was not involved in the new study. "We do not have enough of these discussions and we do not have enough early to know what a loved one wants. If we did, many more people would have the kind of death that everyone really wants: to die in bed without much trouble, surrounded by loved ones. "

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