Surrogate decision-makers want full authority
Speaking out on withdrawing life support
The decision to stop life-support for incapacitated and critically ill patients is, for surrogate decision-makers, often fraught with moral and ethical uncertainty, and long-term emotional consequences. But as difficult as these decisions are, more than half of surrogate decision-makers prefer to have full authority over the choice than to share or cede that power to physicians, according to a recent study out of the University of Pittsburgh School of Medicine.
"This report suggests that many surrogates may prefer more decisional control for value-laden decisions in ICUs than previously thought," said Douglas B. White, MD, MAS, associate professor and director of the Program on Ethics and Decision Making in Critical Illness at the University of Pittsburgh.
The study, a prospective cohort study that included 230 surrogate decision-makers, was published online in advance of the print publication of the American Thoracic Society's American Journal of Respiratory and Critical Care Medicine.
The researchers identified surrogate decision-makers for incapacitated adult patients who require mechanical ventilation and had APACHE II scores of 25 or more, indicating that they were very ill and had about a 50% chance of dying during this hospitalization. The surrogates completed two hypothetical vignettes regarding treatment choices to be made for their loved ones. In one scenario, the question was whether to withdraw life support in the case that the patient had "no hope for recovery"; in the other scenario, the question was about a decision to use one antibiotic or another in treating the patient and asked to select their preferred degree of control over the decision.
The researchers found that more than half (55%) of surrogate decision-makers preferred to retain control over "value-laden" decisions such as whether and when to withdraw life support. Surrogate overwhelmingly wanted more control over the value-laden decisions that the technical decision regarding antibiotic choice. However, a significant portion (40%) of surrogates wanted to share even value-laden decisions with physicians, and 5% wanted to cede that authority to the physician entirely. A significant factor in determining the extent to which surrogates wished to retain control over life-support decisions was their trust in the physician overseeing care. Men and Catholics were less likely to want to give up their decision-making power.
"We found substantial variability in the role surrogates prefer in making value-sensitive life support decisions for incapacitated, critically ill patients," said White, who is also a critical care physician at University of Pittsburgh Medical Center. "Surrogates with low levels of trust in the treating physicians were more likely to prefer to retain final authority over value-laden life support decisions. These results indicate the need for a conceptual distinction between physicians sharing their opinion with surrogates and physicians having final authority over those decisions."
For even among those who wished to retain authority, 90% wanted the physician's opinion on whether to forego life-sustaining treatment.
This critical research highlights that family members have varied positions about their role to make decisions about life support, says J. Randall Curtis, MD, MPH, immediate past-president of the American Thoracic Society. "This variability runs the full spectrum from wanting responsibility for these decisions to wanting physicians to take this responsibility," Curtis says. The physician should match his or her approach to the individual family member that they are speaking with, he says. "Unfortunately, we have not trained physicians in how to elicit this information from family members," Curtis says. "We need to learn how best to elicit this information and to teach ICU clinicians this important skill."
White did note that in certain cases, physicians' obligations to act for the good of their patients might supersede the desires of the surrogate decision-makers to retain authority. "However," he noted, "this step shouldn't be taken without justification because of the ethical and practical complexities it raises."
While more research is needed to understand and elucidate the nuances that go into informing the decisional authority desired by surrogate decision-makers, this study does point out that 95% of all surrogates wish to have some, if not all, authority over value-laden decisions.
"This research makes clear that the vast majority of surrogates in ICUs want to be active participants in these difficult decisions," said White. "The challenge for physicians is to tailor their approach to give the family the information and support they need."