Children with Chronic Conditions
Clinical Bioethics
Nathalie Gaucher, MD PhD (she/her/hers)
Associate professor
CHU Sainte-Justine
Montreal, Quebec, Canada
Paul Mann, MD
Medical College of Georgia at Augusta University
Augusta, Georgia, United States
Yoram Unguru, MD, MS, MA, HEC-C
Division of Pediatric Hematology/Oncology
The Herman and Walter Samuelson Children's Hospital at Sinai
Marlyse Haward, MD
Clinical Assistant Professor of Pediatrics
Children's Hospital at Montefiore, Albert Einstein College of Medicine, United States
Session
Description: Children with medical complexity (CMC) represent a broad group of patients with high healthcare utilization needs in both home and community settings due to extensive clinical diagnoses, functional limitations, and technological dependence. Many families of CMC live in a state of perpetual crisis, attempting to balance increasingly complicated treatment regimens with severe resource constraints. Home nursing shortages have led to some parents assuming 24/7 primary caregiving roles, imposing severe financial burdens on families from lost wages. Lack of respite care is also contributing to caregiver stress and burnout.
Panelists will examine practical and conceptual ethical challenges arising from this ‘state of perpetual crisis’ and discuss collaborative solutions.
Panel:
Kathryn Detwiler, BS: A parent of a child with complex medical needs and program lead of a pediatric complex care clinic, Ms. Detwiler will expose the barriers to caring for CMC and highlight advocacy opportunities
Rebecca Seltzer, MD, MHS: Dr. Seltzer will discuss the harms of existing gaps in family supports and services for CMC, addressing where responsibility lies and potential paths forward
Nathalie Gaucher, MD, PhD: Dr. Gaucher will examine the unexpected roles of “other” specialists in the care of CMC, and how these specialists can engage in a collective responsibility towards CMC and their families.
Chris Feudtner, MD, PhD, MPH: Dr. Feudtner will explore what constitutes a safe discharge, when ‘good enough’ is sufficient, and the ethical dilemmas that ensue. He will suggest medical and bioethical strategies to move forward.
Speaker: Kathryn Detwiler (she/her/hers) – Children's National Health System
Speaker: Rebecca Seltzer, MD, MHS (she/her/hers) – Johns Hopkins University School of Medicine
Speaker: Nathalie Gaucher, MD PhD (she/her/hers) – CHU Sainte-Justine
Speaker: Chris Feudtner, MD, PhD, MPH, HCEC-C – Children's Hospital of Philadelphia