Tracheostomies and assisted ventilation in children with profound disabilities: navigating family and professional...

Parental requests for gastrostomies, tracheostomies, or assisted ventilation in children with profound disabilities raise ethical concerns about children's interests, parental decision-making, and health care costs. The underlying concern for many relates to the perceived value of these 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 family members' lives outside of the health care setting may 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. Even for children with a limited life span, life-sustaining interventions may be important for the child and family. 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, clinicians 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.