People who are in charge of making decisions about incapacitated relatives tend to believe they know what they would prefer to their relatives, but the majority of decision surrogates in a recent study were not aware of the wishes of their relatives.
Researchers who interviewed patients and their substitutes separately found that only 21% of patients and surrogates were on the same page when it comes to assessing whether specific situations – such as a sense of daily pain such as broken bone or appendicitis – would be acceptable.
"Patients and their relatives tend to overestimate how well they have spoken to each other, and how close the family understands what the patient would like in circumstances of advanced disease and decision-making for these diseases," said lead author of the study, Dr Terry Fried , a professor of medicine at the Yale Medical School, and a physician in the VA Connecticut health care system. "What is particularly worrying in this study is that we asked how confident they are and the level of trust is high."
The problem is that many believe they have clarified their desires when they are not, said Fried. "This is not a conversation that comes naturally," she added. "And people often make a mistake in receiving comments when they see something on TV as what their beloved man wants." So something can happen that can happen and the patient says, "Oh I do not want that to happen to me, "and the substitute thinks it means there is a conversation.
There are consequences for the deputy who does not really know what the loved one wants.
"In other studies, it has been found that once they have to make such decisions, substitutes often feel very busy and then feel they have not known enough about the patient's desire to make an informed decision," Fried said.
Rather than focusing on specific treatments, such as mechanical ventilation, researchers have focused on the results the patient may or would not want to live with.
These results were: to be in bed and need help with bathing, dressing, care and toilets; unable to recognize family members; daily pain, feeling like a broken bone or appendicitis.
"It is important to note that the whole telephone survey may have taken about 20-25 minutes and interviewers ask questions about future planning and healthcare decisions," Fried said. – So if people had questions, the interviewer could clarify everything he did not understand.
As reported in JAMA Internal Medicine, 349 patients in the study were randomly selected from a list of veteran veterans of 55 years of age and older living in the community who received primary care through the VA Connecticut health system. From the outset, patients were asked to provide the name of the person they would choose to make medical decisions if they were incapacitated. More than half of the substitutes, 52 percent, are spouses of patients.
Patient and surrogate responses have agreed on a one-time result between 54 and 59% of the time. But surrogates managed to achieve all three results in only 21% of the time. However, 75 percent of the substituents have appreciated themselves as extremely confident that they know what the patient's wishes will be. And among those who are extremely confident, only 23% are correct in their forecasts for the three results.
As people's attitudes may change over time, Freed recommends that people have not just a talk about their wishes but also return regularly to the topic.
Dr. Albert Wu is not surprised by the findings. "Americans are reluctant to think of death, especially for their own," says Wu, an intern and professor of health policy and management at the Johns Hopkins Bloomberg School of Public Health. "And I think we're very inconvenient to have these conversations.
Although it may be difficult to talk about the topic, "it will be much harder for the conversation to be in a time 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 them enough soon enough to learn what a loved one wants." If we were to do it, many more people would have such deaths that everyone really wants: to die in bed without much pain surrounded by your relatives.
SOURCE: bit.ly/2TLZczV JAMA Internal Medicine, online 26 November 2018.