For critically ill patients who lack capacity, shared decision-making is key to ensuring treatments reflect their values and preferences. But a recent study indicates that most family-physician conferences in the intensive care unit (ICU) fail to consider what matters most to patients when a specific decision is at hand.
An accompanying commentary recommends an approach that emphasizes discussions about treatment alternatives that go beyond patients’ attitudes toward dying and prolonged life-support to consider other outcomes, such as physical and cognitive impairment.
The AMA Code of Medical Ethics provides additional guidance on shared decision-making, such as opinion 2.1.2, “Decisions for Adult Patients Who Lack Capacity,” to help physicians engage patients whose capacity is impaired, including when the patient has designated a surrogate to make decisions on his or her behalf.
The study, published in JAMA Internal Medicine, was based on audio-recorded conferences between surrogates and clinicians of nearly 250 critically ill adults with a diagnosis of acute respiratory distress over a three-year period.
Researchers found that, among the conferences that addressed a decision about goals of care, more than one-quarter contained no discussion of the patient’s values and preferences, and less than half specifically deliberated about how the patient’s values applied to the decision. In addition, only about one-third included end-of-life considerations, such as physical, cognitive and social functioning.
Trouble spotting, relating values
The accompanying commentary, by Terri R. Fried, MD, of the Clinical Epidemiology Research Center at the Veterans Affairs Connecticut Healthcare System, notes several reasons for these shortcomings. She has conducted research on shared decision-making and advance care planning.
“First, many of the statements counted as representing patients’ values were instead descriptions of the patient’s health status prior to the current illness episode and therefore did not provide any information about the patient’s views regarding the acceptability of this status,” wrote Dr. Fried, professor of medicine (geriatrics) at Yale School of Medicine.
“This finding serves as a reminder that ensuring clinicians think about the care of patients in the context of their lives outside of the hospital is necessary but not sufficient for improving decision-making.”
Second, Dr. Fried wrote, even if statements more explicitly represented what mattered to the patient, the surrogate and the physician may have struggled to apply them to the treatment decision at hand. The study found that only about 8% of deliberations resulted in clinicians’ explicitly basing recommendations on statements about patients’ values and preferences. It did find that lengthier deliberations were more likely to result in a patient-centered treatment recommendation.
Where to begin
The author recommended starting conversations by bringing the surrogate’s attention to the decision to be made and explaining that the decision involves more than one reasonable alternative.
“It is in the description of the outcomes that clinicians meet a critical information need of surrogates,” the Dr. Fried wrote. “Although clinicians tend to focus their description on the characteristics of the treatment or the process of care, patients tend to make their decisions on what the treatment will do to or for them, or the outcome of care.”
Length of life, after all, might not be the most important thing to patients, so these descriptions should include the likelihood of physical and cognitive disabilities, ongoing symptoms, the ability to live independently and the need for ongoing care.
“This explicit presentation of outcomes clarifies the different trade-offs among the alternatives, which, in turn, can help surrogates understand the relevance of the patient’s values and goals and focus on the ones that best inform the decision,” the author said.
A recent issue of AMA Journal of Ethics® (@JournalofEthics) features a case and commentary—“What should physicians do when they disagree, clinically and ethically, with a surrogate’s wishes?”—that provides guidance to facilitate common ground and alleviate moral distress when discussing the appropriateness of aggressive treatments in ICUs.