Ethical Challenges in Pediatric Medical Complexity: A Survey of Parents

Miriam C Shapiro; Kathryn Detwiler; Jennifer Shepard; Talia Bernhard; Xiaobai Li; Renee D Boss; Vanessa N Madrigal

doi:10.1016/j.jpeds.2025.114478

Ethical Challenges in Pediatric Medical Complexity: A Survey of Parents

J Pediatr. 2025 Jan 24:114478. doi: 10.1016/j.jpeds.2025.114478. Online ahead of print.

Authors

Miriam C Shapiro¹, Kathryn Detwiler², Jennifer Shepard³, Talia Bernhard⁴, Xiaobai Li⁵, Renee D Boss⁶, Vanessa N Madrigal⁷

Affiliations

¹ Department of Pediatrics, University of Minnesota, Minneapolis, MN; Center for Bioethics, University of Minnesota, Minneapolis, MN. Electronic address: mshapiro@umn.edu.
² Department of Pediatrics, Children's National Hospital, Washington, DC.
³ Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, MD.
⁴ Ethics Program, Children's National Hospital, Washington, DC.
⁵ National Institutes of Health, Bethesda, MD.
⁶ Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, MD; Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD.
⁷ Department of Pediatrics, Children's National Hospital, Washington, DC; Ethics Program, Children's National Hospital, Washington, DC.

PMID: 39864504
DOI: 10.1016/j.jpeds.2025.114478

Abstract

Objective: To understand parents' experiences of ethical challenges in the care of children with chronic and serious medical conditions and what resources they access for support.

Study design: We recruited English-speaking parents of children with complex and serious medical conditions via family advocacy groups to complete an electronic survey from October 2022 through February 2023. We queried respondents' experiences with specific ethical challenges in the care of their child, whether their concerns persisted, and what resources they accessed. Respondents also reported demographics, educational backgrounds, financial resources, and their child's medical needs.

Results: 218 parents completed surveys. Parents reported experiencing each of the 15 presented ethical challenges with varying frequency. More than half of parents reported residual distress in 6/15 ethical challenges. Demographic variables (gender, relationship status, time since medical challenge, and ethnicity) were not associated with level of distress related to ethical challenges. When facing challenges, respondents most commonly communicated with family members, friends, doctors, and other parents of children with medical problems, accessed the internet, and relied on their instincts or prayer/meditation.

Conclusions: Parents of children with medical complexity experience ethical challenges in the care of their children, although covering a broader range of experiences than typically considered by clinicians to have ethical dimensions. Many of these challenges leave residual distress. The resources that families report accessing to navigate these challenges are ones that typically do not have training, background, or specificity to medical ethics.

Keywords: Children with medical complexity; bioethics; decision-making.