Over the last century, some forms of withholding medical care from individuals with disabilities have become less common. For example, surgical procedures, like duodenal atresia repair, which were routine for most children at the time, were withheld from infants with Trisomy 21 prior to the 1970s. In the following decades, the scope of surgeries offered expanded to include cardiothoracic surgery and eventually heart transplantation. Parents of children with disabilities continue to seek treatment for their children that has historically been withheld.
In this month’s Pediatrics Ethics Rounds (10.1542/peds.2024-066985), Dr. Holly Hoa Vo and colleagues present the case of a 2-year-old previously healthy boy who sustained a severe anoxic brain injury due to a submersion injury. While he is unresponsive to external stimuli and ventilator dependent, he has respiratory effort. His parents, having been counseled that he will likely remain minimally conscious or unconscious, are hopeful that he may improve and have requested a gastrostomy tube and tracheostomy with the goal of bringing him home. The home ventilation team, however, determined that he is not a candidate for home ventilation due to concerns about his quality of life and suffering. The authors conclude that withholding this treatment from him is not ethically justifiable. Do you agree?
Ethics Rounds generally consists of a case and 2 or 3 commentaries. The commentaries can differ from one another in terms of perspective and/or conclusion. In this month’s Ethics Rounds, the authors reach similar conclusions from different perspectives. The first commentary argues that long-term mechanical ventilation does not inherently constitute “potentially inappropriate” treatment for children with severe neurological impairment, the second that the determination that the patient is not a candidate may have been influenced by ableist bias, and the third that an interdisciplinary team can support a just, shared decision-making process for long-term ventilation. While I find the authors’ arguments compelling, I recognize that there are other perspectives and/or conclusions. Reader Comments, Letters to the Editor, and Ethics Rounds manuscripts expressing them are welcome.
Caring for children receiving long-term ventilation presents many challenges. These challenges include the shortage or unavailability of home nursing. This makes it difficult to provide equitable care. Equitable provision of care for complex, chronic conditions is an important topic that could also be addressed in Ethics Rounds or Health Policy Articles. I hope that pediatricians—and authors—will continue to engage in these pressing issues.
