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: [email protected]

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.