While conducting a study on advance care planning, Lauren Jodi Van Scoy, MD, and colleagues had to determine if the patient’s caregiver had made a surrogate decision. The research team thought this would be fairly straightforward. “But we quickly learned that determining if a real-life scenario fit the definition of a surrogate decision was debatable,” says Van Scoy, co-director of the Qualitative and Mixed Methods Core at Penn State College of Medicine.
Researchers often could not reach a consensus on whether a specific decision qualified as a true surrogate decision. For example, when families reacted to medical emergencies by calling 911, researchers questioned if that constituted a true surrogate decision, since it determined whether the patient would receive medical treatments when the 911 team arrived and delivered care.
“We realized that if we couldn’t figure it out for ourselves, how would surrogates themselves know what ‘counts’ as a surrogate decision?” Van Scoy asks.
Van Scoy and colleagues decided to find out more by asking surrogate decision-makers about how they viewed their role. (Learn more here.) Researchers interviewed 36 surrogates who had made a decision on behalf of a patient with severe illness. Perceptions of what it meant to make a surrogate decision varied substantially. “Surrogates don’t always think about decision-making roles in the same way as we might in medicine, research, or ethics,” Van Scoy explains.
Surrogates often conflated surrogacy with advocacy. For clinicians, knowing this up front is important to prepare surrogates to make ethical decisions. “Being more clear about what we mean when we talk about ‘surrogate decisions’ may help improve the way advance care planning interventions are delivered and understood,” Van Scoy says.
Ariel Clatty, PhD, a clinical ethicist at the UPMC Presbyterian Shadyside Hospital, says surrogates typically view their role as speaking on behalf of the patient. In contrast, clinicians view the surrogate’s role as speaking in the “patient’s voice,” as if the patient was in the room speaking for themselves. “The problem lies when the patient’s surrogate does not voice the opinions of the patient, and, rather, voices their own opinion of the situation,” Clatty says.
There also is the problem of surrogates seeking to overturn a patient’s living will or advance directive because of secondary gain or not wanting to allow the patient to die. “This causes strife between the patient’s surrogate and the clinician teams in finding consensus at the end of life,” Clatty adds.
Ethicists can help prevent such conflicts by elucidating the patient’s values and aligning what the surrogate perceives as those values with clinical care. “The goal is to drive care through the lens of the patient, who is not able to speak for themselves,” Clatty says.
Surrogates view their role as speaking on behalf of the patient; clinicians view the surrogate’s role as speaking as if the patient was in the room advocating for themselves. The problem arises when the surrogate does not voice the opinions of the patient, instead voicing their own opinion of the situation.
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