Bioethics News

Reframing Shared Decision Making at the End of Life

Lecture explores family decision-making at the end of life.


Via NIH Record


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.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.