Surrogates reported less stress and greater satisfaction after a nurse-directed discussion on end-of-life preferences, a recent study found.1
Researchers looked at 163 patients and their surrogates at two university medical centers. One group had a nurse-directed discussion on end-of-life preferences, and another group discussed nutrition.
“The group that had the end-of-life discussion was more likely to endorse mutual surrogate decision-making — balancing their own wishes with what the surrogate thinks best,” says Daniel P. Sulmasy, MD, PhD, MACP, André Hellegers professor of biomedical ethics at Georgetown University’s Edmund D. Pellegrino Center for Clinical Bioethics in Washington, DC.
The study built upon prior research demonstrating that only a small minority of patients actually prefer that their surrogates make decisions based on substituted judgment should they lose decision-making capacity.2
Most people prefer a balance between their own preferences and what their surrogates think would be best. Others would totally defer decisions to their loved ones.
“We thought patients and their loved ones should talk about this — not just what they want done, but how they want decisions to be made,” says Sulmasy.
The researchers saw what they expected to see: Surrogate stress diminished significantly with the nurse-facilitated discussion. However, it was somewhat surprising that their sense of caregiver burden increased. “Perhaps this is because it is more difficult to balance one’s own sense of what would be best for the patient with one’s understanding of the patient’s preferences when making decisions,” says Sulmasy.
Nonetheless, surrogates expressed satisfaction with the intervention. “It may be that they sense that assuming this more complex role is worth the effort,” says Sulmasy.
There are two important messages for hospital ethicists. The first is that evidence now suggests that most patients do not want pure substituted judgments when unable to speak for themselves.
Secondly, says Sulmasy, “This study demonstrates that getting surrogates to talk to patients about not just what they want, but how they want decisions to be made, is both feasible and effective.”
1. Sulmasy DP, Hughes MT, Yenokyan G, et al. The trial of ascertaining individual preferences for loved ones’ role in end-of-life decisions (TAILORED) study: A randomized controlled trial to improve surrogate decision-making. J Pain Symptom Manage 2017; 54(4):455-465.
2. Sulmasy DP, Hughes MT, Thompson RE, et al. How would terminally ill patients have others make decisions for them in the event of decisional incapacity? A longitudinal study. J Am Geriatr Soc 2007; 55(12):1981–1988.
• Daniel P. Sulmasy, MD, PhD, MACP, André Hellegers Professor of Biomedical Ethics, Edmund D. Pelligrino Center for Clinical Bioethics, Georgetown University, Washington, DC. Phone: (202) 687-1122. Email: firstname.lastname@example.org.