We are pleased to publish the first issue of volume seven of Narrative Inquiry in Bioethics (NIB). The new cover art on issue 7.1 symbolizes change at NIB. This is the first issue supported by Heidi Walsh as Managing Editor and by Cynthia McKenna as Communications Director (and the graphic artist behind the new cover art). Editors Ana Iltis and James DuBois wish to thank Susan DuBois for more than six years of service in these roles. She led the day-to-day efforts to develop and support a new journal during a challenging time in the publication industry. She played an essential role in the publication of NIB’s first 18 issues, in the development of NIB VOICES, and the creation of the Foundation for Narrative Inquiry in Bioethics. On behalf of the NIB Editorial Office and the Johns Hopkins University Press Journals Division, we extend to Susan deeply heartfelt thanks. Susan will remain active as an Officer of the Board for the Foundation for Narrative Inquiry in Bioethics.
The narrative symposium in this issue details the first–hand experiences of individuals and teams who have engaged in community–academic partnerships. The narrative symposium editors, Emily Anderson and Kevin Valadares, along with the editorial office, wrote the call for stories and invited Gianna McMillan, BJ Crigger, Rebecca Dresser, and Nina Tumosa to write the four commentary articles on these narratives. The commentary authors offer expertise that include patient and research subject advocacy, bioethics, and the use of narratives to explore legal and ethical issues in medicine, human subjects research, and public health.
The research article in this issue written by Amy E. Caruso Brown, Manika Suryadevara, Thomas R. Welch, and Ann S. Botash, “Being Persistent without Being Pushy: Student Reflections on Vaccine Hesitancy,” explores medical students’ perceptions of provider–parent visits in which they observed a provider discussing vaccine hesitancy with a parent. Only four of the interactions ended in parents agreeing to vaccinate, though most of the students reported that communication between the provider and parent was positive. As pediatric educators, the authors discuss how including information and communication strategies regarding vaccines “in the educational curriculum of providers at all levels,” could optimize vaccine acceptance.
This issue of NIB includes four case studies. The first, “To Enroll or Not to Enroll? A Researcher Struggles with the Decision to Involve Study Participants in a Clinical Trial that Could Save Their Lives,” was written by Roberto Abadie. This case study takes readers through the experience of a community health investigator who received an invitation to enroll IV drug users into a clinical trial of an experimental drug being tested to treat Hepatitis C. The author elaborates on the ethical tensions that he confronted between “doing good” and “avoiding harm” and takes readers through his decision–making process.
Lori Roscoe’s case study, “Sometimes Those Hoofbeats Are Zebras: A Narrative Analysis of a Missed Diagnosis”, highlights the case of a young female patient who was severely misdiagnosed. The case study discusses how physicians are trained to make the most logical diagnosis rather than suspect [End Page v] rarer ones. It also examines ethical issues and communication problems, including the difficulty that nurses or family members may have in questioning a physician’s diagnosis and treatment plan.
Colleen Gallagher, Elijah Weber, and Nisha Rathi provided a case study titled, “Reframing Medical Appropriateness: A Case Study Concerning the Use of Life-Sustaining Technologies for a Patient with Profoundly Diminished Quality of Life”. This case explores quality–of–life determinations and a situation in which the medical team and spouse of an unresponsive, terminally ill cancer patient disagreed about plans to transition the patient to end-of-life care. The case study discusses the ethics involved with determining medical appropriateness when carrying out or discontinuing life-sustaining interventions.
The final case study for the issue by Johan Christiaan Bester, Martin Smith, and Cynthia Griggins is titled, “A Jehovah’s Witness Adolescent in the Labor and Delivery Unit: Should Patient and Parental Refusals of Blood Transfusions for Adolescents be Honored?” The authors discuss the ethical conflicts and issues raised in the case of a pregnant 15-year-old who was admitted to labor and delivery to be induced at 41–weeks gestation. Due to her family’s religious beliefs, she and her parents were adamant that they would not consent to blood transfusions, even in the case of a life-threatening hemorrhage. This case examines the difficulties that health care providers face when their obligation to “provide benefit and limit harms” conflict with patient and family values. The case raises such questions as, should parents have the parental authority to refuse life–saving interventions for their minor children and do minors have sufficient decisional capacity to make health care decisions when coercion by parental pressure and family convictions are likely?
News about Narrative Inquiry in Bioethics
For a list of current Calls for Stories and Author Guidelines, please visit www.nibjournal.org. We need the assistance of our readers to identify authors who will address controversial topics in healthcare as they report on their experiences, cases, or research projects. [End Page vi]