University of South Florida


Doctor holding hands with elderly patient

What happens when families and medical proxies disagree about end-of-life decisions?

According to Dr. Katherine Drabiak, an attorney and USF College of Health professor who specializes in medical ethics, disagreements about end-of-life care are common, pitting family members and medical proxies against each other and posing a myriad of ethical and legal questions.

She examines those questions in a paper cowritten with former USF Morsani College of Medicine student Gregoire Calon, who is now a physician at BayCare in St. Petersburg, Fla.

The paper, “How clinicians can respond when family members question a proxy/surrogate’s judgment and decisional capacity,” was published in November in the journal Clinical Ethics.

“Medical treatment decisions, especially those at the end of life, often involve multiple family members,” Drabiak explained. “Despite this, generally one person is the legal decision-maker (referred to as proxy or surrogate). Especially when the patient cannot speak for himself, these decisions become particularly difficult because there are many people who have conflicting opinions about what treatment option is best for the patient.”

In the paper Drabiak and Calon outline a real-life case in which the physician of a 92-year-old man suffering from COVID-19 and other comorbidities recommended that the patient be removed from life-sustaining interventions and placed on comfort care. His elderly wife agreed. But the adult grandchildren of the patient objected, saying their grandmother had dementia and was not competent to make such a high-stakes decision.

Older man in hospital bed and older woman holding his hand

                                                                                               Photo source: Canva

“In cases where the patient cannot speak for himself (e.g., the patient is unconscious), the law designates a specific person to serve as his medical decision-maker. This person is supposed to make the decisions that the patient would have wanted and advocate for the patient's best interests. Allowing this person to make the decision recognizes the special relationship between the decision-maker and the patient. We like to think that our spouse knows us best and would make the decision that would be aligned with what we want.”

When disagreements arise, Drabiak says the clinician’s role becomes paramount.

“The first step is to clarify questions about the patient's diagnosis/prognosis, expectations for what certain treatments would accomplish and potential concerns,” she said. “Sometimes disagreement arises based on inaccurate information or confusion. Other disagreements stem from genuine differences of opinion about what course of action is better for the patient.”

Things get tricky, however, when a family alleges the proxy making decisions for their loved one is mentally unfit. 

Drabiak notes that many states have laws stating that proxies must demonstrate mental fitness, but how they are assessed is left largely up to the clinician. To help make a judgment, Drabiak points out that physicians have resources. In addition to observing the proxy and asking the family for evidence showing mental incompetency, a clinician can also call in other medical professionals, such as a psychiatrist, to make an assessment. 

“The article provides a framework for clinicians to walk through this process of assessing the capacity of a proxy or surrogate (can this person evaluate and process information?), the legal standard they must meet and how to communicate with the family,” Drabiak said. “In exceedingly rare cases, the care team or a family member may seek to remove the medical decision-maker. And if that’s the case, most states specify a legal process for doing that, which would require going to court.”

Drabiak presented this paper to the palliative care medical community at the AdvocateHealth's Palliative Care Chalk Talks in Milwaukee, Wis., on March 1.

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