Research says instructional directives may have psychological benefits, but a new study also found they don’t improve the accuracy of surrogate decision-making.AMERICAN MEDICAL NEWS, Professional Issues (March 19,2001)
Advance directives provide comfort, not necessarily goal
Research says instructional directives may have psychological benefits, but a new study also found they don’t improve the accuracy of surrogate decision-making.
By Vida Foubister, AMNews staff
When William M. Tierney, MD, was diagnosed with non-Hodgkin’s lymphoma last year, he filled out an advance directive for the first time.
Dr. Tierney, professor of medicine at Indiana University School of Medicine in Indianapolis, said he was glad that his oncologist suggested it. “I feel comforted that I’m not going to be a burden to my family,” he explained.
Just as Dr. Tierney found talking about end-of-life preferences with his physician to be beneficial, so did the elderly and chronically ill patients who participated in a study he led.
Patients who discussed advance directives with their physicians were more likely to rank those visits as excellent than patients who didn’t receive such counseling as part of their primary care, according to his findings, published in the January Journal of General Internal Medicine.
“If you talk to your patients about these things, you fundamentally change the relationship that you have with your patients,” Dr. Tierney said.
But does he expect those discussions to make a difference in the care either he or those patients ultimately receive? The answer is no.
“There are very few direct benefits,” he admitted. Interventions fail to improve accuracy As it turns out, Dr. Tierney’s expectations appear to be on the mark.
A recent study that for the first time looked retrospectively at the effect of such interventions found that neither the advance directives themselves nor discussions among patients and their surrogate decision-makers about them improve the accuracy of substituted judgment.
Surrogates without such information accurately predict patients’ desire to receive life-sustaining treatment about 70% of the time, according to the Feb. 12 article in the Archives of Internal Medicine.
“In the past 15 years there’s been a huge national push to encourage people to complete instructional advance directives like living wills,” said Peter H. Ditto, PhD, associate professor of social ecology in the Dept. of Psychology and Social Behavior at the University of California, Irvine. “The assumption is that they communicate your wishes from one person to another.”
Dr. Ditto and his colleagues evaluated the effectiveness of four different interventions. The 401 outpatient-surrogate pairs who participated in the study were either given no direction about the patient’s wishes or given one of two different advance directives with or without the opportunity to discuss the directive.
One of the advance directives, called the health care directive, “thinks the way doctors think,” Dr. Ditto said. It gives elaborate disease scenarios and asks a person to indicate which treatments he or she would want under the circumstances.
The other, a valued-life-activities directive, attempts to speak to laypeople in their language. It asks them to think about activities that make life worth living and to determine which ones are essential to continue living.
“It doesn’t talk about diseases and treatments at all,” said Dr. Ditto, who developed the directive through his research. “It just says, ‘Here are the things that are so important to me in my life that if I couldn’t do them, I wouldn’t want to live anymore.’ “
The results unequivocally demonstrated that none of the interventions worked. “Neither document helped surrogates,” he said. “Even when it was supplemented with discussion, they still weren’t any better at predicting the patient’s wishes than were people who didn’t talk about it at all.”
Advance directives’ benefit
Both Dr. Ditto’s and Dr. Tierney’s studies, like several others, found that patients feel better after having discussed advance directives. Dr. Tierney believes that this indirect benefit gives advance directives value. “What they do is create an opportunity for me to sit down with my patients and have some really meaningful discussions about what they want done,” he said.
Although Dr. Ditto agrees that those discussions, and the increase in patient and surrogate comfort he observed, are both positive outcomes, he questions the wisdom of advocating instructional directives as a means of improving end-of-life medical care.
“One of the reasons [directives] may make people feel better, and this is what we find in our study, is they make people think they understand each other better. In a sense, the comfort is built on an illusion,” he said.
These observations leave the medical profession with two options, according to Daniel P. Sulmasy, MD, PhD, chair of the John J. Conley Dept. of Ethics at Saint Vincents Hospital and Medical Center in New York City.
“One is to say we really need to do a better job of improving the accuracy of substituted judgments,” he said. “The other is to really take a hard look at the fundamental moral presuppositions of the whole movement. Among the first things we could question is whether we’re demanding an accuracy that is not possible.”
Two studies Dr. Ditto is completing found that there’s substantial instability in people’s care preferences both over time and after hospitalization.
“The whole notion of advance directives is really that people can project themselves into the future and make valid decisions for themselves when they’re going to be in a totally different situation than they are now,” he said. “Because their wishes seem to bounce around over time and they change depending on how they feel, it seems to suggest that people are going to have real difficulty doing what it is that advance directives ask them to do.”
Psychological vs. direct benefit
Two recent studies find that the psychological benefits of advance directives outweigh any real improvement in the accuracy of surrogates’ substituted judgment.
Participants: 686 patients age 75 or older or between 50 and 74 years with serious underlying disease and their 87 primary care physicians (57 residents, 30 faculty general internists)
Measure: Patient satisfaction with primary care physicians and visits with and without end-of-life discussions.
Finding: 51% of patients who had discussed advance directives with their physicians at a previous visit rated their care as excellent, compared with only 34% of those who did not have such discussions.
Participants: 401 outpatients 65 or older and their self-designated surrogates (62% spouses, 29% children)
Measure: Surrogates’ ability to predict patients’ preferences for four life-sustaining medical treatments in nine scenarios.
Finding: Neither advance directives, nor discussion of directives, significantly improved the accuracy of surrogate substituted judgment. But the discussions produced a sense of “mutual understanding and comfort with end-of-life decision-making.”
Patient-physician source: Tierney et al., Journal of General Internal Medicine, January
Patient-surrogate source: Ditto et al., Archives of Internal Medicine, Feb. 12