Synopsis
Parents’ requests for a gastrostomy, tracheostomy, or assisted ventilation for children with profound disabilities may raise ethical concerns about children’s interests, parental decision-making, and health care costs. The underlying concern for some relates to the perceived quality of life for such children. Clinicians should make efforts to appreciate the family’s perspective regarding children with profound disabilities who require respiratory and nutritional medical support. Finding opportunities to learn about the families lives outside of the health care setting can facilitate a deeper understanding of what it means to live with a child who has profound disabilities. In conversations with families, referring to interventions as futile and conditions as lethal will obscure the value-based nature of these decisions. Respiratory and nutritional interventions are not clearly against the interests of most children. Health care costs are a serious societal issue; however, the costs associated with profound disabilities are not the most significant contributor. Societal decisions not to provide life-sustaining health care to children with profound disabilities would require a public process. Clinicians may have personal views regarding decisions for their own family or for their vision for society, however, they also have professional obligations to families who have different values. It is important to present balanced information and support parental decision-making so parents may decide to forgo or use life-sustaining interventions according to their values and goals.
Speaker
Benjamin S Wilfond MD is the director of the Treuman Katz Center for Pediatric Bioethics and a pulmonologist at Seattle Children’s Hospital. He is professor and chief of the Division of Bioethics, Department of Pediatrics and an adjunct professor in the UW Department of Bioethics and Humanities, University of Washington School of Medicine. He has close to 30 years’ experience on institutional review boards, data monitoring committees, and bioethics consult services. His scholarship focuses on ethical and policy issues related to the boundaries between research and clinical care. His current projects address genomic testing for reproductive purposes, decision-making about children with disabilities, ethics consultation for clinical research, and informed consent about research on medical practices.