Identifying the Best Approach to Patient-Centered Decisions About Serious Illness Care: What's Autonomy Got to Do With It?

Propelled in large part by the American zeitgeist of self-determination, patient autonomy replaced beneficence as the primary ethical principle guiding medical decision making in the United States during the last century. This autonomy-driven model assumes an informed patient who fully understands the implications of available treatment choices and can identify those most aligned with their values and goals. Furthermore, this model tends to assume the internal consistency of and ability to accurately identify such values and goals for patients’ current and future selves. However, there is increasing recognition that this conceptualization of patient autonomy is intricate and fallible, owing largely to the complex interrelationships among human cognition, emotions, and behavior, especially in the context of serious illness. We need to improve our understanding of the best approaches for guiding patients and their families to the right decisions for them in the context of serious illness—those decisions that best match their individual values and goals. Rubin and colleagues1 report an elegant and innovative randomized clinical trial using psychological experimentation with hospitalized patients to compare intuitive vs deliberative approaches to medical decision making. Participants consisted of 199 hospitalized patients aged 60 years or older with serious illness who were asked to express their treatment preferences for a series of hypothetical, albeit relevant, clinical scenarios using either intuitive or deliberative decision making. In the intuitive group, patients were subjected to a cognitive load (remembering a series of numbers) and instructed to provide their treatment preferences immediately based on instinct. In the deliberative group, patients were not subjected to a cognitive load and were instructed to think critically about their answers, take a full minute before answering, and explain why they made their decisions. Patients in both groups chose very similar treatments, reported very similar decisional certainty, and were equally likely to have their treatment choices match their stated personal values. This experiment provides persuasive evidence that encouraging hospitalized patients to deliberate on life-sustaining treatment decisions does not change the content or improve the quality of their decisions. The one potentially important exception is that patients in the deliberative group were more likely to endorse a palliative philosophy for goals of care, but this did not translate to different treatment choices. The study seems adequately powered to exclude moderate or large differences in decision making with deliberation—at least deliberation for 1 minute. It is possible that these patients had already formed decisions about intensity of care as more than half endorsed having a living will or engaging in prior discussions about end-of-life care, or that longer deliberations are necessary. However, these limitations seem unlikely to explain the absence of any important effect of deliberation on treatment decisions. Instead, this study raises the question of whether such complex medical decisions are always made with an intuitive approach and that additional efforts to promote deliberation, such as decision aids, may be doomed to fail the mission of changing decisions inherently anchored to initial instinctual responses. This study also raises the important question of how to best facilitate informed decisions for seriously ill patients on their medical care that are in line with their individual values and goals. There are several important knowledge gaps that need to be addressed to understand the appropriate role + Related article