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What ethical considerations should guide the design and evaluation of systems of care for children with medical complexity? There are inevitable tradeoffs that any complex health care system must confront when attempting to achieve multiple worthy goals, from benefitting individual patients and families and securing fair distribution of benefits across populations, to operating in a manner that is transparent and free from conflicts of interest. 

Discussing the article, Ethical Framework for Risk Stratification and Mitigation Programs for Children with Medical Complexity, the panel shared recommendations that help ensure programs for children with medical complexity avoid potentially ethically problematic situations and practices. 

This article is part of a supplement to Pediatrics entitled, “Building Systems that Work for Children with Complex Health Care Needs.” 

Webinar Recording


Chris Feudtner, MD, PhD, MPH

Director, Department of Medical Ethics, and Attending Physician, Complex Care Service, Children’s Hospital of Philadelphia

Dr. Chris Feudtner is a pediatrician, clinical investigator, and ethicist at The Children’s Hospital of Philadelphia and the University of Pennsylvania who focuses on improving the lives of children with complex chronic conditions and their families. Over the years, he has conducted a wide variety of research projects and been involved in developing clinical programs while also taking care of pediatric patients, including providing palliative care, as well as providing clinical ethics consultations.

Grace Oei, MD, MA

Director of Clinical Ethics, Loma Linda University Health, Attending Physician, Division of Pediatric Critical Care, Loma Linda University Children's Hospital

Dr. Grace Oei is a pediatric critical care attending physician at Loma Linda University Children’s Hospital and an assistant professor of pediatrics with the Loma Linda University School of Medicine. She is also the Director of Clinical Ethics at Loma Linda University Health where she leads the clinical ethics consult service. Dr. Oei’s academic and clinical interests include clinical ethics, moral development, process improvement, and pediatric pain and sedation, particularly in the ICU.   

Chaplain Mark Bartel, M.Div, BCC

Manager, Spiritual Care, Arnold Palmer Medical Center

Chaplain Mark Bartel is the manager of Spiritual Care at Arnold Palmer Medical Center in Orlando, Florida. He is a past president of the Pediatric Chaplains Network and co-editor of “Paediatric Chaplaincy: principles, practices and skills.” He is a founding faculty member of the Pediatric Chaplains Institute and sat on the Secretary’s Advisory Committee on Infant Mortality at the US Department of Health and Human Services. He is board certified through the Association of Professional Chaplains.

Christopher Stille, MD, MPH

Professor of Pediatrics and Section Head, General Academic Pediatrics, University of Colorado School of Medicine, Children's Hospital Colorado

Dr. Christopher Stille is professor of pediatrics and section head of General Academic Pediatrics at the University of Colorado School of Medicine and Children's Hospital Colorado. The primary focus of his research has been improving communication and coordinated care for CYSHCN between primary care clinicians, subspecialists, and family members. He has led projects funded by the U.S. Maternal and Child Health Bureau, the Robert Wood Johnson Foundation, and local and regional funders to pursue this investigation.

Related Grants

Findings from a survey of California-based caregivers that asked them about their experiences receiving peer support for caring for children and youth with special health care needs.

This policy brief by the National Alliance to Advance Adolescent Health looks at what happens when low-income youth and young adults with chronic conditions and disabilities age out of the Title V Program for Children and Youth with Special Health Care Needs and provides policy recommendations.