Tracheostomies and Assisted Ventilation in Children With Profound Disabilities: Navigating Family and Professional Values

Abstract

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.

Update on Ethical Issues in Pediatric Dialysis: Has Pediatric Dialysis Become Morally Obligatory?

“…Given that families of these children must live with the experience of these decisions for many years, their preferences should be given special privilege within the decision-making process (11). As a result, in situations of disagreement between providers and families, a family's wish to pursue life-sustaining therapy should be accepted (11).…”

“…Given that families of these children must live with the experience of these decisions for many years, their preferences should be given special privilege within the decision-making process (11). As a result, in situations of disagreement between providers and families, a family's wish to pursue life-sustaining therapy should be accepted (11). This argument is based on the concept of relational potential developed by Arras, who argued that rather than focusing on interests of the child alone, we ought to consider whether a child has the capacity to form relationships with others and whether there are people who value those relationships (12).…”

Children and Young Adults Who Received Tracheostomies or Were Initiated on Long-Term Ventilation in PICUs*

“…However, these dependencies and their associated care needs can also impact their families and the healthcare system (2–5). Determining which children are appropriate candidates for tracheostomies or long-term ventilation (LTV) can sometimes be controversial, especially when the children have profound disabilities and/or life-limiting conditions (6–7). Because children who require these interventions are often survivors of critical illness, they are often initiated in intensive care settings, such as pediatric intensive care units (PICU).…”

Child Abuse, Incarceration, and Decisions About Life-sustaining Treatment

“…Others ultimately pursue more aggressive medical interventions. 2 Diekema and Wilfond 3 support a compassionate approach to parental decisionmaking in these contexts, allowing for significant latitude in decisions the medical team might not agree with even when neurodevelopmental impairments may be profound. Wilkinson 4 suggests a thoughtful assessment of the benefits and burdens of continued medical intervention before considering whether it may be appropriate to withhold or withdraw life-sustaining therapies.…”