It is clear that the decision to stop life-support for incapacitated and critically ill patients is 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, M.D., M.A.S., 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 approximately a 50 percent 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 percent) 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 percent) of surrogates wanted to share even value-laden decisions with physicians, and five percent 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 Dr. 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," Dr. White continued. For even among those who wished to retain authority, 90 percent wanted the physician's opinion on whether to forego life-sustaining treatment.
"This is a very important piece of research that highlights the fact that family members vary in their desired role in decision-making about withholding and withdrawing life support. This variability runs the full spectrum from wanting responsibility for these decisions to wanting physicians to take this responsibility," said J. Randall Curtis, M.D., M.P.H., immediate past-president of the ATS. "Our goal as physicians should be to match our approach to the individual family members before us. Unfortunately, we have not trained physicians in how to elicit this information from family members. We need to learn how best to elicit this information and to teach ICU clinicians this important skill."
Dr. White did note that in certain cases, physicians' obligations to act for the good of their patients may 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 percent 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 Dr. White. "The challenge for physicians is to tailor their approach to give the family the information and support they need."