Restoring humanity, if but for a moment: Exploring how one bioethics service works to represent the unrepresented at end of life.

Abstract: In 2015, the New York Family Health Care Decisions Act, which governs decision making for patients without legally assigned surrogates, added a provision allowing medical centers to enroll unrepresented patients in hospice care. Among the law’s requirements is approval of hospice placement by an ethics review committee (ERC). The law provides no guidance as to the structure or process of such ERCs.
As director of a bioethics service at a large teaching hospital, I have led more than 200 ERCs to review hospice enrollment for unrepresented patients. Little is known about most patients we consider. Some come to us from nursing homes, where they have had no visitors or family contact in years. Some are i without documentation and without identifiable family. Many have severe dementia, extensive mental illness, debilitating chronic illnesses, or have been non-communicative for years. By the time our service is consulted, the life narrative of these patients has often been erased. They have become bodies without stories. Our service is called upon to guide end-of-life decisions for these patients, a profound responsibility. In response, our service has worked to create an ethics review process that itself honors the patient, even when we possess only fragments of their stories. Attendees will engage with two examples of ERCs where members had to decide between potentially life-extending treatment and hospice for a patient whose values where unknown. Through these cases, I will show how our process aims to restore the humanity of these patients, if only for a moment