Caring for critically ill and dying patients often triggers both professional and personal growth for physician trainees. In pediatrics, the neonatal intensive care unit is among the most distressing settings for trainees. We used longitudinal narrative writing to gain insight into how physician trainees are challenged by and make sense of repetitive, ongoing conflicts experienced as part of caring for very sick and dying babies. The study took place in a 45-bed, university-based NICU in an urban setting in the United (...) States. From November 2009 to June 2010 we enrolled pediatric residents and neonatology fellows at the beginning of their NICU rotations. Participants were asked to engage in individual, longitudinal narrative writing about their “experience in the NICU.” Thematic narrative analysis was performed. Thirty-seven physician trainees participated in the study. The mean number of narratives per trainee was 12; a total of 441 narratives were available for analysis. Conflict was the most pervasive theme in the narratives. Trainees experienced conflicts with families and conflicts with other clinicians. Trainees also described multiple conflicts of identity as members of the neonatology team, as members of the medical profession, as members of their own families, and as members of society. Physician trainees experience significant conflict and distress while learning to care for critically ill and dying infants. These conflicts often led them to question their own morals and their role in the medical profession. Physician trainees should be educated to expect various types of distress during intensive care rotations, encouraged to identify their own sources of distress, and supported in mitigating their effects. (shrink)

This narrative symposium illuminates the problem of clinician moral distress. NIB editorial staff and narrative symposium editors, Cynda Rushton, PhD, RN, FAAN and Renee Boss, MD, MHS, developed a call for stories, which was sent to several list serves and posted on Narrative Inquiry in Bioethics’ website. The request for personal stories from inter–professional healthcare providers asked them to: identify specific clinical situations that give rise to moral distress; discuss the sources of this distress; reflect on how they experienced moral (...) distress—physically, psychologically, socially, or spiritually; assess how they managed their situations; and offer suggestions for avoiding future problems of a similar nature. Twelve stories are found in the print version of the journal and an additional eight supplemental stories are published online only through Project MUSE. The clinicians describe a wide range of experiences with patients, other clinicians, and their own professional and personal identities. Embedded in each of the narratives are deeply felt emotions that accompany their experiences of moral distress. Katherine Brown-Saltzman (a nurse), Alisa Carse (a philosopher), Zhanna Bagdasarov and Shane Connelly (industrial–organizational psychologists), and Nancy Berlinger (a bioethicist) provided commentaries. (shrink)

The number of children with chronic critical illness (CCI) is a growing population in the United States. A defining characteristic of this population is a prolonged hospital stay. Our study assessed the proportion of pediatric patients with chronic critical illness in U.S. hospitals at a specific point in time, and identified a subset of children whose hospital stay lasted for months to years. The potential harms of a prolonged hospitalization for children with CCI, which include over treatment, infection, disruption of (...) family life, and the intensive utilization of resources—combined with the moral distress experienced by the clinicians who care for the children, suggest the need for ethical analysis of this growing issue to identify actions that could be taken at the clinical and health systems levels to reduce the harms associated with prolonged hospital stay.In this article we present three real cases from our study that involved a very long hospital stay. We applied a framework developed by Mackenzie, Rogers, and Dodds to analyze inherent, situational, and pathogenic vulnerabilities to examine the ways that interventions intended to remedy one source of harm for the children in our cohort inadvertently created other harms. We examined the complex ways that children with protracted hospitalization are vulnerable to the choices made by their family and clinicians, as well as by healthcare systems and communities. Finally, we used this analysis to summarize actions and ethical responses to this growing patient population. Such an understanding is essential to making clinical and ethical decisions that arise for children who are at risk for a very long stay in the hospital. (shrink)

Children in foster care are considered a “vulnerable population” in clinical care and research, with good reason. These children face multiple medical, psychological, and social risks that obligate the child welfare and healthcare systems to protect them from further harms. An unintended consequence of the “vulnerable population” designation for children in foster care is that it may impose barriers on tracking and studying their health that creates gaps in knowledge that are key to their receipt of medical care and good (...) outcomes. These gaps in knowledge have implications for justice, beneficence, and maleficence and serve to undermine “protection” of this population. Here we review the challenges of research regarding children in foster care, particularly medically complex children, and offer specific recommendations to include children in foster care in medical research. (shrink)

Approximately one in 10 children in foster care are medically complex and require intensive medical supervision, frequent hospitalization, and difficult medical decision making. Some of these children are in foster care because their parents cannot care for their medical needs; other parents are responsible for their child’s medical needs due to abuse or neglect. In either case, there can be uncertainty about the role that a child’s biological parents should play in making serious medical decisions. Here we highlight some of (...) the ethical challenges inherent in making these decisions for children in foster care, as seen through the lenses of a child welfare provider, an inpatient care physician, and a primary care pediatrician. (shrink)