Editors’ Note

We are pleased to publish the second issue of volume 5 of Narrative Inquiry in Bioethics (NIB).

The narrative symposium in this issue looks at the world of intersex people. The narrative symposium editors, Georgiann Davis and Ellen Feder, in concert with NIB’s editorial staff, wrote the call for stories and invited the commentators. The symposium is unique in that many authors quote from their own journals and their medical records. The symposium offers personal stories from people diagnosed intersex. It brings to light the myriad issues they face including: unusually frequent examination of their genitalia as young children and teens; having their diagnosis withheld and being denied access to their medical records; being told there were no other people like them to connect with (a connection most found very important once they were able to make it); and feelings of having a gender identity forced upon them through surgery and hormone treatments without consulting their own understanding of self. Georgiann Davis, who shares with readers that she is intersex, wrote the introduction. Arlene Baratz and Katrina Karkazis, Ellen Feder, Joel E. Frader, and Lih–Mei Liao wrote the four commentary articles—their collective expertise in pediatrics, social sciences, psychology, ethics, and stakeholder and parent perspectives, bring a welcome range of viewpoints to this topic.

The research article in this issue asks, how do African American patients and lay caregivers evaluated their hospice experiences? “African Americans and Hospice Care: A Narrative Analysis” written by Patrick J. Dillon and Lori A. Roscoe explores this topic by analyzing 39 in–depth interviews with 26 participants, they organize patients’ and caregivers’ stories into three general categories: narratives of satisfaction, narratives of regret, and narratives of ambivalence. The authors make use of these categories to help in understanding hospice experiences and improve end–of–life care for African American populations.

There are four case studies in this issue. Two of which come from our case study partners. Margot M. Eves and her co–authors sent a case from Cleveland Clinic. While Craig M. Nelson’s case comes from Kaiser Permanente.

The first case study by Margot M. Eves, Phoebe Day Danziger, Ruth M. Farrell, and Cristie M. Cole, readers must struggle with the question, how do clinicians guide patients in making value–laden decisions without imposing their own values? In this case the authors draw from the experiences of a pregnant woman, diagnosed with cervical incompetence at 22 weeks gestation, and her caregivers. They describe a strategy aimed at illuminating how caregivers might consider the patient’s perspective.

“Military Health Care Dilemmas and Genetic Discrimination: A Family’s Experience with Whole Exome Sequencing” written by Benjamin M. Helm, Katherine Langley, Brooke B. Spangler, and Samantha A. Schrier Vergano. In their narrative, they wrestle with the fact that The Genetic Information Nondiscrimination Act of 2008 (GINA) excludes protections for members of the military. What should happen when members of the military are told that whole–exome sequencing show potential life threatening secondary findings?

Craig M. Nelson’s case study, “The Enduring Case”, asks the reader to consider how should clinical ethicists behave when serving an incapacitated patient whose family is unfamiliar with the patient’s medical wishes? He explores the case of an incapacitated 90–year–old man whose family was unsure of his wishes for medical intervention, a case that was complicated by its lengthy duration, grown medical concerns, and changes in the care team.

How should surgeons approach situations in which they are consulted for operative interventions that they do not want to provide? Anji Wall explores this question in her case, “The Surgeon as Stakeholder: Making the Case Not to Operate”. In the case she describes the clinical encounter between an endocrine surgeon and an 83–year–old cancer patient who wants an operation that the surgeon is reluctant to offer because of high operative risk to such a frail patient.

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For a list of current Calls for Stories and Author Guidelines, please visit www.nibjournal.org.