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August 26, 2016
Lecture Explores Family Decision-Making at End of Life

Dr. Marie Nolan (l) accepts plaque from NINR director
Dr. Patricia Grady.
Dr. Marie Nolan (l) accepts plaque from NINR director Dr. Patricia Grady.

Dr. Marie Nolan recently presented the second of this year’s four NINR Director’s Lectures. Her talk, “Reframing Shared Decision-Making at the End of Life,” detailed her research on patient and family decision-making in the face of critical illness.

Nolan’s preliminary work revealed that many patients with terminal illness wanted to share decision-making about treatments with family members, even when the patients had the capacity to make their own decisions. Also, in contrast with the view that advance care planning should focus more on patients’ autonomy and preferences for specific treatments, Nolan’s team found that many patients—if they were to become unconscious—preferred that their physician rely on their family members’ judgements about what would be best for them rather than their own stated preferences for specific treatments. Given these insights, Nolan and her team decided to focus on how patients wanted their decisions made at the end of life.

One of her first studies examined patients with cancer, heart failure and amyotrophic lateral sclerosis. Although Nolan and her team thought that patients would want to give up more decision control to the family as patients’ illnesses advanced, patients’ preferences for a style of decision-making that was independent, shared or reliant on the family remained stable even as the patient’s health declined. The implications of the research showed that end-of-life discussions about how patients want decisions about treatments to be made can begin early on, not just when a patient is nearing death.

Two intervention studies conducted by Nolan’s team helped patients and their family member surrogates with the difficult task of making these end-of-life decisions. The Tailored End-of-Life Decision-Making Intervention increased support for shared decision-making, helped with surrogate-patient agreement and surrogate decision satisfaction and decreased surrogate decision distress. A preliminary study of the Implantable Cardioverter Defibrillator (ICD) Tailored Intervention supported education and decision-making surrounding the deactivation of ICDs at the end of life when repeated shocks become uncomfortable for patients. Most patients did not know deactivation of the ICDs was an option or why it would be necessary. When fully informed about the option for deactivation, patients and family members did develop a plan.

Nolan is professor and executive vice dean at Johns Hopkins School of Nursing and holds a joint faculty appointment in the Johns Hopkins Berman Institute of Bioethics. She has also served on NIH advisory panels regarding end-of-life care research.

The NINR Director’s Lecture Series is designed to bring the nation’s top nurse scientists to NIH to share their work and interests with a trans-disciplinary audience. Nolan’s lecture is available at https://www.youtube.com/watch?v=hVBhRy3a2HQ.

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