Abstract

In lieu of an abstract, here is a brief excerpt of the content:Whose Voice Matters? The Role of Ethics Consultation in Supporting the 16-Year-Old Healthcare Decision-Maker of a Critically Ill NeonateMichelle ProngEditor’s Note. The details of the patient case presented below have been modified to protect the family’s privacy. Despite these modifications, the author has made every effort to preserve the story’s clinical, social, and ethical nuances.The patient was born at 31 weeks with Trisomy 13 and lived her entire life in the NICU. She was born to a 16-year-old mother (who I will call M.H.) as the result of an unintended pregnancy. This child was just about a month old when I became part of her care team. The patient was born with a severe congenital heart defect that our pediatric cardiac surgery team—as well as surgical teams at multiple other academic children’s hospitals—determined to be inoperable. Because of her severe heart defect, she required significant respiratory support throughout her life and continuous IV medications to keep her organs perfused.When I came on service, M.H. visited irregularly and depended on her mother (the patient’s grandmother, who I will call D.R.) for transportation. Social work had arranged for M.H. to have daily transportation to the hospital after school and work; however, M.H. was denied the opportunity to spend the night with her infant. It was against hospital policy for minors to stay overnight as visitors, and additional visitation guidelines related to COVID precautions were also in place at the time. As her biological mother, M.H. was designated as the patient’s healthcare decision-maker. The inability for M.H. to stay overnight on the basis of her age despite being the patient’s parent and healthcare decision-maker generated significant moral distress for several members of the care team. The social dynamic between M.H. and D.R. was such that D.R. was far more participatory in rounds and goals of care conversations, and M.H. was almost always reserved and withdrawn. On multiple occasions, different team members attempted to have conversations directly with M.H. She either was not engaged in the conversation, would answer with short phrases, or, when D.R. was present, would defer to D.R. to speak for her.Throughout the patient’s life, D.R. seemed to be the driving force behind most treatment and goals of care decisions. In multiple conversations I had with the family, both one-on-one with M.H. and jointly with M.H. and D.R., it was made clear that they wanted “everything done” and were hopeful for “a miracle.” D.R. emphasized that she didn’t want anyone to “give up” on the patient and wanted to exhaust all possible options for a cure. Overall, our team had become increasingly concerned that the medical decision makers for this patient did not comprehend the very poor prognosis of her congenital cardiac anomaly, either with or without surgery. As the medical team, we would be subjecting this child to harm that would be unlikely to change her prognosis. [End Page 19]Our NICU team, as well as various other teams, discussed the case repeatedly without a resolution that felt satisfactory. A complicating factor for this particularly socially and ethically challenging case was that the team turned over relatively frequently during the patient’s long-term stay, making it difficult for each successive team to understand what had already been done for this patient and her family. We decided to seek help from the Clinical Ethics Consulting (CEC) service. My expectation for the CEC service was that the consultant would help our team think differently about both the clinical and social elements of the situation and help us come to a resolution since we could not figure out a good solution on our own.Our consult question for the CEC was fourfold: 1) Did the patient’s mother meet criteria for an emancipated minor (to get around the visitation policy), 2) Is M.H. the appropriate healthcare decision maker given her lack of engagement in goals of care conversations and perceived understanding of the severity of her...