NEW YORK (Reuters Health) - A new qualitative study suggests that focusing only on creating an advance care directive may get in the way of patients having a goals-of-care discussion with clinicians.
Semistructured interviews with 20 community-dwelling adults who were discharged from one of two urban academic hospitals revealed that many of the patients had created their advance directive (AD) with a lawyer rather than a clinician and often they did not recall the details of the AD, researchers report in JAMA Internal Medicine.
"Advance directives have been known for a long time now to be imperfect tools to improve delivery of end-of-life care," said Dr. Catherine Auriemma of the Palliative and Advanced Illness Research Center at the University of Pennsylvania in Philadelphia.
"However, the truly novel finding from our study is that not only are advance directives imperfect, but they may actually harm patients by both generating overconfidence and inadvertently dissuading patients from having the difficult, but necessary, conversations that would be promoted by high-quality advance care planning."
Dr. Auriemma isn't suggesting that ADs should be done away with.
"But we do need to shift focus away from the product and toward the process," she told Reuters Health by email. "There has been some really wonderful innovation in generating advance directives that move away from legal jargon and help patients to really think through their goals and values on their own time, such as prepareforyourcare.org and ourcarewishes.org."
"While these programs are most certainly improvements over the traditional advance directive included in estate planning bundles, they still tend to elicit preferences at a single point in time and cannot cover all of the possible decisions that a patient or surrogate decision maker might face in the future," Dr. Auriemma added. "We need to shift emphasis to developing and promoting interventions that better prepare patients and their families for future decision making."
To take a closer look at the current situation, Dr. Auriemma and her colleagues conducted a qualitative study using semistructured interviews with 20 English-speaking adults aged 65 or older who had been admitted to a hospital for a chronic medical illness, such as cancer, heart failure or pulmonary disease, and had been discharged before being interviewed. The interviews were conducted by phone and demographic information was self-reported by the participants.
The researchers initially recruited 29 patients whose median age was 72, with approximately half being female and nearly half not identifying as white. Dr. Auriemma and her colleagues focused on the 20 who reported already having completed an AD.
In general, the ADs completed by the participants were generic forms that captured few details. Often the AD had been filled out with the assistance of a lawyer rather than a clinician or family member. Overall, the participants were not able to recall the details of the AD and did not report having revisited the content of their ADs after completing them.
The participants cited the existence of an AD as a reason not to have, or need, a goals-of-care conversation with their clinicians or family.
The new study adds to the past 30 years of research "showing that when a person goes through the process of advanced care planning or completes an AD, their goals are often not achieved," said Dr. Sean Morrison, professor and chair of geriatrics and palliative care at the Icahn School of Medicine at Mount Sinai, in New York City. "Specifically, it doesn't affect the care people receive at the end of life, care that matches their preferences; it doesn't improve decision making or the decision-making process; and it does not improve the quality of care or the quality of life."
"This paper demonstrates that traditional advance directives or the traditional advance care-planning process not only don't achieve their goals, but actually inhibit good decision making at the end of life," he told Reuters Health by phone.
What should be done?
"There should not be a hypothetical conversation, but instead a real conversation with people who are experiencing a real illness," said Dr. Morrison, who was not involved in the study. "The decision shouldn't be about what will be done 10 or 20 years in the future, but right now."
"What I advocate is that everybody designates a healthcare proxy or surrogate who can make decisions when you're not able to do so yourself," he said. "We should be asking, How can we help their surrogates make decisions for them? What kind of information do they need and what are the outcomes they are trying to achieve?"
It's clear that most Americans don't think ADs and advance care-planning discussions are the way to go, Dr. Morrison said.
"Look at the number of people engaged in advance care-planning discussions," he said. "It's never gone higher than 40%. The vast majority don't believe the process is helpful."
"The future is so complex and unpredictable," Dr. Morrison said. "I find many of my patients would like decisions made by their trusted decision maker based on the information available to them when the decision needs to be made. Our focus should be figuring out what information is needed to help them make those decisions and how to be supportive and how to best guide them."
SOURCE: https://bit.ly/3ETduGQ JAMA Internal Medicine, online April 25, 2022.
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