Families Face Ethical Challenges More Often Than They Change a G Tube: Rethinking Our Care

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OPENPediatrics

500 episodes

1 month ago

In this Complex Care Journal Club podcast episode, Dr. Jody Lin discusses a qualitative study of shared decision-making for neuromuscular scoliosis surgery in children with medical complexity. She describes a broad range of family values and preferences that may guide decision-making, implications for clinical practice, and next steps from this work.‌ SPEAKER Jody Lin, MD, MS Pediatric Hospitalist Assistant Professor of Pediatrics Division of Inpatient Medicine University of Utah 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: December 8, 2025. JOURNAL CLUB ARTICLE Lin JL, Devereaux T, Simon TD, Kaphingst KA, Zhu A, Narayanan U, Berry ABL, Eppich KG, Stoddard G, Smith JT, Andras L, Heflin J, Keenan HT, Asch SM, Fagerlin A. Caregiver Values and Preferences Related to Surgical Decision-Making for Children with Medical Complexity. J Pediatr. 2025 Jan;276:114366. doi: 10.1016/j.jpeds.2024.114366. Epub 2024 Oct 19. PMID: 39428089; PMCID: PMC11645212. OTHER ARTICLES REFERENCED Courageous Parents Network. Scoliosis and spine / spinal surgery: facts and decision-making. https://courageousparentsnetwork.org/guides/decision-making-around-spinal-fusion-surgery/. Accessed November 14, 2025. Lin JL, Clark CL, Halpern-Felsher B, Bennett PN, Assis-Hassid S, Amir O, Nunez YC, Cleary NM, Gehrmann S, Grosz BJ, Sanders LM. Parent Perspectives in Shared Decision-Making for Children With Medical Complexity. Acad Pediatr. 2020 Nov-Dec;20(8):1101-1108. doi: 10.1016/j.acap.2020.06.008. Epub 2020 Jun 12. PMID: 32540424; PMCID: PMC7655593. Lin JL, Cohen E, Sanders LM. Shared Decision Making among Children with Medical Complexity: Results from a Population-Based Survey. J Pediatr. 2018 Jan;192:216-222. doi: 10.1016/j.jpeds.2017.09.001. Epub 2017 Nov 6. PMID: 29102046; PMCID: PMC5732902. Lin JL, Tawfik DS, Gupta R, Imrie M, Bendavid E, Owens DK. Health and Economic Outcomes of Posterior Spinal Fusion for Children With Neuromuscular Scoliosis. Hosp Pediatr. 2020 Mar;10(3):257-265. doi: 10.1542/hpeds.2019-0153. PMID: 32079619; PMCID: PMC7041549.‌ TRANSCRIPT https://cdn.bfldr.com/D6LGWP8S/at/xcz7qm4n2b9rn636rrnq/Jody_Lin_Final_transcript_12-4-25.pdf. 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 Lin JL, Huth K. Exploring What Matters: What Families Value in Complex Surgical Decision-Making. 12/2025. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/exploring-what-matters-what-families-value-in-complex-surgical-decision-making.

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Families Face Ethical Challenges More Often Than They Change a G Tube: Rethinking Our Care

OPENPediatrics

27 minutes 29 seconds

6 months ago

Families Face Ethical Challenges More Often Than They Change a G Tube: Rethinking Our Care

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