Variable Responses Among Pediatric Intensivists to Parental Requests for Medical Interventions in Patients Determined to Be Dead by Neurological Criteria

Background: The case of Jahi McMath has challenged the concept of death by neurologic criteria (DNC) in the pediatric population. Amid the emerging controversies surrounding DNC, there have been instances where families request tracheostomy and gastrostomy placement even after declaration of DNC. Data examining how pediatric intensivists navigate such dilemmas is scarce.

Methods: The study was IRB approved. We conducted semi-structured group interviews in which participants reflected on common ethical dilemmas. Group interviews were recorded, transcribed, and independently coded. From this data, we created a case-based ten-question survey with multiple choice answer options along with free text which was disseminated nationally. One case centered on paths forward when parents request placement of tracheostomy and gastrostomy tube for their child who has been declared DNC, the analysis of which is presented here.

Results: 299 partial and complete replies (approximately 32% response rate) were compiled. Of these, 7% of participants selected the first answer choice: explain to the patient’s parents that ongoing support is medically inappropriate and you will unilaterally remover therapies over their objections. 31% selected the second option: explain to the parents that ongoing support is medically inappropriate and attempt to petition the court to remove therapies over their objections. 4.5% selected the third option: explain that ongoing support is medically inappropriate, place a DNR order over their objections, and continue the current level of treatment until the patient ‘naturally’ sustains cardiac arrests and dies. 18% selected the final answer choice: continue therapies and arrange for tracheostomy and gastrostomy tube placement per the parents’ wishes. 39% chose to write in a difference response from those offered via multiple choice, with the most common themes being transferring the patient to another hospital or obtaining an ethics consult.

Conclusion: This study highlights the lack of consensus on how best to navigate cases where families request surgical interventions to achieve chronic physiologic stability outside of an intensive care environment in the setting of DNC. The divergent approaches highlight the ethical controversy practitioners face when placed in such positions.