Miriam Shapiro, a pediatric intensivist and expert in bioethics, joins parent advocate Kate Detwiler, a Program Manager for Complex Care, to tackle the ethical challenges families face when caring for children with chronic conditions. They discuss insights from a survey analyzing parental stresses and the need for improved resources. The conversation emphasizes collaborative ethics consultations and the importance of including diverse perspectives in healthcare decision-making, pushing for systemic changes that support families in navigating complex medical landscapes.
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Kate's Personal Ethics Challenge
Kate Detwiler shared a personal story of facing ethical challenges without available tools as a parent and healthcare worker.
This experience sparked the research project exploring what ethical resources families actually use and need.
insights INSIGHT
Broader Ethical Challenges Identified
Families of children with medical complexity experience a wide range of ethical challenges, including unexpected ones like participation in school or social activities.
This expands the traditional view of ethics in pediatric care beyond conflict and end-of-life issues.
insights INSIGHT
Residual Distress Widespread
Over half of families remain distressed about many ethical challenges they face, even long after the events.
Residual distress highlights that ethical issues have lasting emotional impacts beyond the immediate decision moment.
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In this Complex Care Journal Club podcast episode, Dr. Miriam Shapiro, Ms. Kate Detwiler, and Dr. Vanessa Madrigal discuss a survey of families with children with chronic conditions about ethical challenges they have experienced in their child's care and sources of support. They describe the residual distress reported by families, implications for clinical practice, and next steps from this work.
SPEAKERS
Miriam Shapiro, MD
Associate Professor, Affiliate Faculty, and Pediatric Intensivist
University of Minnesota Medical School
University of Minnesota Center for Bioethics
Masonic Children's Hospital
Kathryn Detwiler, MBA
Parent Advocate, Parent Researcher
Program Manager, Complex Care
Children's National Hospital
Vanessa Madrigal, MD, MSCE, HEC-C
Associate Professor, Director Pediatric Ethics Program, and Pediatric Critical Care Medicine
The George Washington University
Children's National Hospital
HOST
Kathleen Huth, MD, MMSc
Pediatrician, Complex Care Service, Division of General Pediatrics
Boston Children's Hospital
Assistant Professor of Pediatrics
Harvard Medical School
DATE
Initial publication date: July 7, 2025.
JOURNAL CLUB ARTICLE
Shapiro MC, Detwiler K, Shepard J, Bernhard T, Li X, Boss RD, Madrigal VN. Ethical Challenges in Pediatric Medical Complexity: A Survey of Parents. J Pediatr. 2025 Apr;279:114478. doi: 10.1016/j.jpeds.2025.114478. Epub 2025 Jan 27. PMID: 39864504; PMCID: PMC12013584.
OTHER ARTICLES REFERENCED
Cho HL, Grady C, Tarzian A, Povar G, Mangal J, Danis M. Patient and Family Descriptions of Ethical Concerns. Am J Bioeth. 2020 Jun;20(6):52-64. doi: 10.1080/15265161.2020.1754500. PMID: 32441594; PMCID: PMC7673656.
Pang J, Batson L, Detwiler K, Miller ME, Thorndike D, Boss RD, Shapiro MC. Where do families turn? Ethical dilemmas in the care of chronically critically Ill children. Monash Bioeth Rev. 2024 Jul 8. doi: 10.1007/s40592-024-00201-6. Epub ahead of print. PMID: 38976209.
TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/as/p9cpbchs45rp3xq8p747pv83/July_CCJCP_Shapiro_Madrigal_Detwiler_Transcript_7-2-25
Clinicians across healthcare professions, advocates, researchers, and patients/families are all encouraged to engage and provide feedback! You can recommend an article for discussion using this form: https://forms.gle/Bdxb86Sw5qq1uFhW6.
Please visit: http://www.openpediatrics.org OPENPediatrics™ is an interactive digital learning platform for healthcare clinicians sponsored by Boston Children’s Hospital and in collaboration with the World Federation of Pediatric Intensive and Critical Care Societies. It is designed to promote the exchange of knowledge between healthcare providers around the world caring for critically ill children in all resource settings. The content includes internationally recognized experts teaching the full range of topics on the care of critically ill children. All content is peer-reviewed and open-access thus at no expense to the user. For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu
CITATION
Shapiro MC, Detwiler K, Madrigal VN, Huth K. Families Face Ethical Challenges More Often Than They Change a G Tube: Rethinking Our Care. 7/2025. OPENPediatrics. https://soundcloud.com/openpediatrics/families-face-ethical-challenges-more-often-than-they-change-a-g-tube-rethinking-our-care.
OPENPediatrics 
