A web-based decision tool failed to help family members, physicians, and other decision makers agree on treatment goals for patients on life support, or improve patient outcomes, according to results of a randomized trial.
Although patient surrogates who completed the decision aid showed better understanding of information conveyed by clinicians than control surrogates not exposed to the decision aid, both groups maintained expectations for their loved ones’ survival that were significantly more optimistic than those of clinicians or evidence-based clinical prediction models, reported Christopher E. Cox, MD, of Duke University in Durham, North Carolina, and colleagues.
The decision aid also failed to improve the surrogates’ psychological outcomes 3 and 6 months later, and the aids did not affect patient survival, hospital length of stay, or duration of mechanical ventilation, they wrote in the Annals of Internal Medicine.
Roughly 400,000 patients in the U.S. annually are subject to prolonged mechanical ventilation, with healthcare costs exceeding $35 billion, Cox’s group wrote.
Patients on life support typically lack the capacity to make critical decisions regarding life-prolonging therapy and comfort-focused care, so these decisions are left to family members or other close surrogates.
“Although experts encourage shared decision making for such preference-sensitive choices of a treatment plan that is most consistent with a patient’s values, clinicians often do not adequately elicit patient treatment preferences, provide guidance about the surrogate’s role, disclose likely long-term outcomes, and discuss the option of comfort care,” Cox and colleagues wrote. “As a consequence, family members struggle to make good surrogate decisions in the setting of heightened emotional distress and conflicting priorities.”
“Ineffective communication can result in the default provision of aggressive life support, which may conflict with patient preferences and lead to psychological distress among family members,” they noted.
While decision aids could, in theory, help guide care decisions in the mechanical ventilation setting, no previous clinical trials have examined their use in an acute care or ICU population, the researchers wrote.
Their multicenter trial examined the efficacy of a personalized, web-based decision aid designed to support surrogates and clinicians in shared decision-making for patients on prolonged mechanical ventilation.
“It was conceptually grounded in the Ottawa Decision Support Framework, which addresses how to support individual decision needs by highlighting options and risks, identifying uncertainty and clarifying health-related values,” the researchers wrote, adding that the aid was further constructed using guidelines from the International Patient Decision Aids Standards Collaboration and was written at a sixth-grade reading level.
The study’s primary outcome was improved concordance on 1-year survival estimates, measured with the clinician-surrogate concordance scale (range, 0 to 100 percentage points; higher scores indicate more discordance). Secondary and additional outcomes assessed the experiences of surrogates (psychological distress, decisional conflict, and quality of communication) and patients (length of stay and 6-month mortality).
The researchers enrolled 277 patients, 416 surrogates, and 427 clinicians. Concordance improvement did not differ between intervention and control groups for a mean difference in score change from baseline of 1.7 percentage points (95% CI 8.3-4.8 percentage points, P=0.60).
The authors also reported that surrogates’ postintervention estimates of patients’ 1-year prognoses did not differ between intervention and control groups: median 86.0% versus 92.5% (P=0.23) and were substantially more optimistic than results of a validated prediction model at a median 56.0% and physician estimates at a median 50.0%.
Also, 82 intervention surrogates (43%) favored a treatment option that was more aggressive than their report of patient preferences.
Although intervention surrogates had greater reduction in decisional conflict than control surrogates for a mean difference in change from baseline of 0.4 points (95% CI 0.0-0.7 points, P=0.041), other surrogate and patient outcomes did not differ.
In an accompanying editorial, Aaron Tannenbaum, MD, and Scott Halpern, MD, PhD, both of Perelman School of Medicine at the University of Pennsylvania in Philadelphia, wrote that surrogate overoptimism about patient outcomes “may stem more from beliefs than knowledge.”
“Whether and how these beliefs are mutable may represent the true lynchpin to aligning expectations and enhancing the quality of surrogate decision making,” they wrote.
The editorialists highlighted the fact that 43% of surrogates rejected their own assessment of their patient’s treatment preferences, more often opting for survival-based treatment than comfort-based treatment.
“Although studies have shown that seriously ill patients often prefer function over longevity and rate certain states of debility as worse than death, surrogates may struggle to acknowledge such values,” they wrote. “If so, decision aids that provide more information and encourage greater deliberation may be insufficient. Indeed, the value of deliberation in clinical decision making is itself unsubstantiated.”
They conclude that while “Knowing may indeed be half the battle … future work that goes beyond decision aids will be needed to truly improve preference-sensitive decision making.”
The study was funded by the NIH.
Cox disclosed no relevant relationships with industry. Co-authors disclosed support from the NIH, the National Heart, Lung, and Blood Institute, and Biomarck Pharmaceuticals.
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Primary Source
Annals of Internal Medicine
Secondary Source
Annals of Internal Medicine
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