Editors' Note

We are pleased to publish the second issue of volume ten of Narrative Inquiry in Bioethics (NIB), which includes the symposium, "Living with Alzheimer Disease and Other Types of Dementia: Stories from Caregivers." We had a great response to the call for narratives for this symposium topic. Twelve stories appear in print, and 12 more are available in the online supplement. The stories are from people who are currently caring or have cared for a family member or close person with Alzheimer Disease (AD) or other types of dementia. Jessica Mozersky and Dena S. Davis served as symposium editors for this symposium. The two symposium editors, along with the NIB editors, wrote the call for stories and invited Judith Schwarz, Carol Levine, and Nancy S. Jecker to write commentary articles on these narratives. The three are experts in end-of-life choices, policy and family caregiving, and individual and societal aging, respectively. Most people caring for older adults in the US are family members, friends, or other informal caregivers. The narratives in the symposium reveal that caregivers undergo great emotional, financial, and physical stress. The stigma associated with dementia and AD amplifies the burden that is placed on informal caregivers, sometimes causing them shame or embarrassment, social isolation, and delays in seeking support for themselves. These narratives provide an opportunity to better understand caregiver needs, suffering, benefits, and joys, as well as to explore ways in which we can support caregivers and people with dementia and Alzheimer disease.

Loren Wilbers wrote the research article in this issue. "'Deserving Patients' or 'Potential Addicts?' Narrative Analysis of an FDA Hearing on Prescription Opioid Labeling," explores how institutional narratives told in a United States Food and Drug Administration public hearing influenced a label change intended to reduce the prescribing of opioids to people with chronic non-cancer pain. The author draws on a social constructionist framework, which proposes that narratives play an essential role in influencing public policy.

The first case study in this issue comes from one of our case study partnerships at Kaiser Permanente and is titled, "An Ethics of Unknowing: Discerning Ethical Patient-Provider Interactions in Clinical Decision-Making." Author Deborah L. Kasman uses examples from her own breast cancer journey to explore uncertainty in medical decision-making. She claims that while resources exist for coping with (and reducing) uncertainty for physicians, these systems have not addressed the compounded uncertainty in the patient-doctor relationship. Dr. Kasman presents a guide on how physicians can tell their patients, "I don't know," while continuing to participate in a constructive and ethical healing relationship.

The second case study written by Ian J. McCurry, Jason Han, and Andrew Courtwright is titled, "How Should Physicians Manage Neuro-Prognosis with ECPR?" This case study reviews the case of the patient Ms. S, a former lung cancer patient who reported to the hospital after experiencing shortness of breath. Her health worsened, and, following the deterioration of her cardiovascular status, her healthcare team made the decision to use extracorporeal cardiopulmonary resuscitation (ECPR), which restores blood flow to the body and brain. Before the completion of this emergency procedure, Ms. S had approximately 30 minutes of hemodynamic arrest, leading to serious concern regarding her neuro-prognosis. Because data on the use of such procedures without sedation is very limited, the use of sedation was considered the only safe option in Ms. S's case. Five days of this resourceintensive therapy passed before Ms. S was decannulated and weaned off the sedative, allowing for an accurate neuro-prognosis. It was then clear that Ms. S had only basic brain function, and her family made the decision to withdraw life-sustaining interventions. The case explores the challenges of neuroprognostication and end-of-life decisions in the case of ECPR.

News about Narrative Inquiry in Bioethics

NIB is pleased to announce a new call for stories, "Living with Mental Health Challenges: Personal Stories of Recovery from Across the Globe." This forthcoming issue is supported by a grant from the Open Society Foundation, which will help us to produce an open-access NIB Voices edition. For a...