(Reuters Health) – People who are trusted decision making for inferior loved ones tend to think they know what their…
(Reuters Health) – People who are trusted decision making for inferior loved ones tend to think 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 only 21 percent of patients and surrogates were on the same side when assessing specific situations – for example, feeling daily pain, like a cracked leg or appendicit – would be acceptable.
“Patients and their loved ones usually tend to overestimate how well they have spoken to each other and how well they dearly understand what the patient wants in circumstances of advanced disease and make decisions about these diseases,” said the lead author of the study, Dr. Terri Fried, Professor of Medicine at Yale School of Medicine and a present doctor at the VA Connecticut Health Care System. “What is particularly disturbing in this study is that we asked how safe they were and their confidence was high.”
The problem is that many people assume they have made their wishes when they have not said it, Fried said. “It’s not a conversation that comes naturally,” she added. “And people often mistake to give comments when they watch something on TV, as what their loved one wants. So some ER views may be on and the patient might say” O gee, I do not want it to ever happen ” and the surrogate believes it means they’ve had a conversation. “
There are consequences for the surrogate who does not really know what their loved one wants.
“It has been found in other studies that, after making such decisions, surrogates often felt very stressed and felt that they did not know enough about the patient’s desire to make an informed decision,” Fried said.
Instead of focusing on specific treatments, such as mechanical ventilation, researchers focused on outcomes that a patient may or may not want to live with.
These results were: Bedbound and require help with bathing, dressing, grooming and toileting; not being able to feel Again family members Daily pain feels like a broken leg or appendicit.
“It is important to note that the whole phone survey probably took about 20-25 minutes and interviewers asked questions about planning for the future and health care decision,” explains Fried. “So about people had questions the interviewer could clarify something that the respondent did not understand. “
As reported in JAMA Internal Medicine, Va The 349 patients in the study were randomized from a list of military veterans 55 and older who received primary care through the VA Connecticut Healthcare System. At the beginning, patients were asked to give the name of the person they would choose to make medical decisions if they were inability. More than half of the surrogate, 52 percent, was the patient’s spouses.
Patients and surrogates responded to individual results between 54 and 59 percent of the time. But surrogates got it right for all three results only 21
percent of the time. In spite of this, 75 percent of the surrogates themselves estimated that what the patient’s wishes would be. And among those who were very confident, only 23 percent were correct in their prediction for all three results.
As people’s attitudes can change over time, Fried recommends that people not only have a conversation about their wishes but also regularly return to the subject.
Dr. Albert Wu was not surprised at the results. “The Americans are not comfortable thinking about death, especially their own,” said Wu, an internist and professor in health policy and management at Johns Hopkins Bloomberg Public Health School. “And I think we are very uncomfortable with these conversations.”
It can be difficult to talk about the subject, “it becomes much harder to get the conversation in a 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 soon enough to learn what a loved one wants. If we do, many more would have the kind of death that everyone really wants: to die in bed without too much pain surrounded by your loved ones. “
Source: bit.ly/2TLZczV JAMA Internal Medicine, Online November 26, 2018.
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