What Is Autonomous Decision-Making?

The principle of autonomy in medical ethics refers to the right of each human person to make informed decisions about their care. With the widespread availability of life-saving medicines and technology, individuals today often have the ability — to a great extent, at least — to choose how and under what circumstances they will die. Further, U.S. law guarantees each of us the right to make those choices independently and to have them respected by the healthcare professionals entrusted with our care. A person with advancing cancer, for example, can choose to end curative therapy and enter hospice, even though they may die more quickly as a result of that choice. Similarly, an elderly person who has been hospitalized with pneumonia may choose not to be admitted to the ICU or allow doctors to insert a feeding tube. Conversely, patients have the right, at least in theory, to request life-saving interventions even when healthcare professionals believe they will do little, if any, long-term good. This ability to make informed choices about what treatments we receive and don’t receive is the essence of autonomy and autonomous decision-making. 

The right to choose what happens to one’s own body is central to the guarantee of personal autonomy that is foundational in Western society. From a bioethical perspective, therefore, the role of healthcare providers in the decision-making process is to provide patients with the information they need to make decisions about their care. This includes accurate information about the risks, benefits and alternatives to all proposed treatment strategies (including the option to forego curative treatment in favor of comfort care.) Providers are ethically obligated to respect the patient’s wishes even when they strongly disagree. 

When an individual lacks decision-making capacity (for example, if they are unconscious or too ill to understand what is being proposed) and there is no written advance directive that addresses the situation at hand, that person’s next-of-kin or designated healthcare proxy is legally and ethically empowered to make decisions about their care. This is based on the doctrine of “substituted judgment,” which assumes that a surrogate has the ability (based on prior discussions or knowledge) to act in a way that reflects the patient’s values and goals. And while a rather large body of research suggests that substituted judgment is a flawed concept that rarely achieves that goal, it remains the standard of care throughout the U.S.

Sources

“Substituted Judgment: The Limitations of Autonomy in Surrogate Decision Making”. Journal of General Internal Medicine. https://pmc.ncbi.nlm.nih.gov/articles/PMC2518005/ 

“Ethical Issues Surrounding End-of-Life Care: A Narrative Review”. Healthcare. https://pmc.ncbi.nlm.nih.gov/articles/PMC4934577/ 

“Law for Older Americans”. American Bar Association. https://www.americanbar.org/groups/public_education/resources/law_issues_for_consumers/patient_self_determination_act/