- Editors’ Note
We are pleased to publish the second issue of volume nine of Narrative Inquiry in Bioethics (NIB). This symposium includes 12 personal narratives from healthcare professionals who provide care in rural and prairie communities. Three additional narratives are available in the online supplement. Ann Freeman Cook and Helena Hoas have spent more than 20 years conducting bioethics research in rural and prairie communities and served as the narrative symposium editors for this issue. Cook and Hoas, along with the NIB editorial staff, wrote the call for stories and invited Jacqueline J. Glover and Lisa M. Lee to write commentary articles on these narratives. The symposium editors also provided a commentary for the issue. The commentary authors are experts in health care delivery challenges, rural and clinical bioethics, and bioethics education.
This issue includes two research articles and two case studies. The first research article was written by Eva De Clercq and Jürg Streuli and is entitled “Special Parents for ‘Special’ Children? The Narratives of Health Care Providers and Parents of Intersex Children.” The authors conducted 19 semi-structured interviews with health care providers and parents of intersex infants or infants with DSD (differences or disorders of sexual development). The study sought to confront a paradox—though medical guidelines suggest a cautious approach when it comes to surgical interventions in these cases, little evidence exists that surgical interventions are delayed in most countries. By sorting narratives from the interviews into sociologist Arthur Frank’s narrative “types” (i.e., restitution, chaos, and quest), the researchers aimed to uncover the sociocultural narratives that influence the patients’ and caregivers’ views of illness.
The second research article, “Patient Experiences with the Use of Telephone Interpreter Services: An Exploratory, Qualitative Study of Spanish-Speaking Patients at an Urban Community Health Center,” was written by Maria Garcia-Jimenez, Alessandra Calvo-Friedman, Karyn Singer, and Michael Tanner. The researchers recruited Spanish-speaking patients with limited English proficiency (LEP) who had used telephone interpreter services (TIS) in a clinical encounter in the last twelve months to better understand patient experiences with TIS. The study is important because LEP is one of the leading contributors to racial and ethnic health disparities.
The first case study in this issue was written by Nico Nortjé and is entitled “Speaking for Our Father.” The case is about a man diagnosed with cancer of the tongue. His wife of 40 years recently died after battling cancer herself. After his wife’s death, the man discussed with his adult sons that he believed not enough had been done to try and cure their mother and that if ever he was in the same situation, the man would not give up so easily. The man undergoes treatment for his cancer and suffers complications that put him in the ICU. He is intubated but able to communicate by writing on a whiteboard. Still recovering from the grief and trauma of losing their mother, the sons face the hard choice of adhering to their father’s living will, which indicates that he would like to exhaust all possible [End Page v] treatments, or following a written bedside decree communicated to the nurses that he is finished fighting. The father’s mental status worsens before the sons are able to verify his wishes. The two brothers cannot agree whether to follow the living will or take to heart this new decree. An ethicist is called in by the health care team and seeks to understand the right course of action based on three strong principles the father holds: courage, honor, and pride.
The second case study “Getting to the Heart of the Matter: Navigating Narrative Intersections in Ethics Consultation” was written by Leslie A. Kuhnel. The author describes the web of narratives uncovered during a particular ethics consultation. A young single mother and athlete adamantly refuses surgery after suffering multiple heart attacks. She is determined to “be strong” and return home to her daughter. The doctor, acutely aware of the risks (and unwilling to compromise his professional integrity) insists on the necessity of the surgery. Finally, the ethics consultant admits to her own sticking points...