Journal Shares Difficult Stories

Since its inaugural issue in 2011, Narrative Inquiry in Bioethics has sought to bring the stories of real people to the forefront of the discussion on important issues in medical ethics today. Now halfway through Volume 8, the journal continues this mission with two different looks at access to medical information and dealing with atypical medical encounters. Heidi Walsh, NIB's managing editor, and Mary Click, the journal's communications coordinator, joined us for a Q&A about these two recent issues as well as trends in publication and plans for the future. 

The first two issues of the most recent volume have covered a wide variety of topics. What stands out to you the most from these issues?

The first issue of volume eight “Doctor in the Family: Stories and Dilemmas Surrounding Illness in Relatives,” details physicians’ experiences navigating both their personal and professional roles when family members or close friends have been ill. The authors describe various ways they’ve helped loved ones through an illness or diagnosis, ranging from supporting the loved one emotionally to going with them to appointments, to treating family members—something they are technically not allowed to do. The stories in 8.1 show how difficult it is to maintain professional boundaries when a child or parent is sick and you have insight into their condition or the healthcare system they are navigating.  

For each symposium, we include several expert commentaries. One commentator, Joanna Weinberg, discussed another theme largely overlooked in the narratives—the privilege of having a doctor in the family, a privilege that often means good health insurance, quicker appointments, and a readily available medical-jargon translator. 

Upon learning of her mother’s terminal cancer diagnosis, the editor of this symposium, Dr. Lauren Smith, wrote in her introduction to the issue, “I immediately faced the grim reality that I would be lucky if my mother survived a year…hope evaporated.” For many authors in the issue, being aware of all the worst-case scenarios and understanding the survival rates pilfered their optimism. They sought to be helpful in the way a physician would—they spoke to colleagues about their loved one’s diagnosis, sought advice on treatments or providers, and read the latest studies on new therapies. The authors were often acutely aware of the likely outcomes, and this prevented them from feeling the inspirational pull of hope, that optimism which keeps us moving forward and which pulls us back from despair in times of trouble. 

The second issue, “Healthcare Challenges Faced by Adopted Persons Lacking Family Health History Information,” is a very different topic. However, the two issues deal with similar themes—access to information, for one, as well as navigating atypical medical encounters. Having genetic-relative health-history information helps physicians identify individuals who are at higher risk for developing certain diseases and can result in highly effective disease prevention for those at risk. Many of the authors of this issue expressed feeling embarrassed or ashamed of not knowing this information when asked. Authors mentioned the discomfort of an initial doctor’s visit, when the author had to leave the family health history completely blank. Most doctors were unsure how to proceed—order extra testing, to be safe? Would insurance cover it, without family health history to justify it? Some of the authors, unsatisfied with their sparse knowledge or the uncertainty of DNA testing like 23-and-Me, sought their birth families in order to discover more about their health history. 

What trends are you seeing in the types of content submitted to the journal?

We have been surprised by the variety of narratives, and grateful for how generously people have shared very personal stories. Several of our issues have focused on contentious topics, and have needed a wide breadth of storytellers to be representative. In their correspondence with the editorial office, many of the authors express gratitude for being given the opportunity to share their story. 

We have expanded our case study partnerships this year and are receiving many submissions from authors of the narratives, research articles, and case studies from outside of the U.S. We are now able to offer authors of case studies and research articles publication online ahead of print. The first research article we were able to do this for was written by authors in the Netherlands who wrote about a concern that was rather novel. The piece discusses how services like laser hair removal, Botox injections and chemical peels, which are provided in beauty salons, overlap with medical care. The authors brought up valid concerns about informed consent, confidentiality, and vulnerable populations. The piece was popular with reviewers and we were enthusiastic about including it in the journal. 

NIB is now halfway through its eighth volume. What have been the most important lessons learned in that time?

It can be difficult to find authors for some of the symposia topics. It has been essential to find the group of people to whom author Malcolm Gladwell refers in his book The Tipping Point as the connectors. These people make change through connecting people. We find people who are advocating or telling their story, typically on social media, to consider writing a piece for NIB about their experience. We ask if they would connect us to others who may also have a story to share. Often people don’t realize or think that anyone would be interested in hearing their story unless you explicitly ask them to share it, and then they’re sincerely grateful for the opportunity and recognition of their experience. 

What can we look forward to in upcoming issues of the journal?

The third issue in volume eight will be “Living with Chronic Pain in the Midst of the Opioid Crisis”—it will be a multi-faceted picture of chronic pain, desperation, addiction, political pressure, and responsible drug use. We also have issues in the pipeline on topics that include Citizen Science and Rural Healthcare, and we are currently recruiting stories from parents for an issue called “Little Teeth, Big Problems,” about attaining oral healthcare for children. You can visit our website at nibjournal.org to explore past and upcoming issues. 
 

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