Jahi Mcmath: Lessons Learned Maya Scott, MSW
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Jahi McMath: Lessons Learned Maya Scott, MSW Jahi McMath’s story has been an important reference in medicine and ethics as the landscape abstract of the understanding of death by neurologic criteria is shifting, with families actively questioning the once-firm criterion. Palliative care providers have a role in seeking understanding and collaborating with families and clinical teams to navigate the many challenges that arise when a medical team has determined that a child has died, and their parents disagree. In this case-based narrative discussion we consider the complexity of the family experience of brain death. Seattle Children’s Hospital, Seattle, Washington Ms Scott approved the final manuscript as submitted and agrees to be accountable for all aspects of the work. DOI: https://doi.org/10.1542/peds.2020-0818P Accepted for publication May 18, 2020 Address correspondence to Maya Scott, MSW, Palliative Care Program, Seattle Children’s Hospital, 4800 Sand Point Way NE, MB.5.605, Seattle, WA 98105. E-mail: [email protected] PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). Copyright © 2020 by the American Academy of Pediatrics FINANCIAL DISCLOSURE: The author has indicated she has no financial relationships relevant to this article to disclose. FUNDING: No external funding. POTENTIAL CONFLICT OF INTEREST: The author has indicated she has no potential conflicts of interest to disclose Downloaded from www.aappublications.org/news by guest on September 27, 2021 PEDIATRICS Volume 146, number s1, August 2020:e20200818P SUPPLEMENT ARTICLE I first learned about Jahi McMath as bleeding, was asked to leave. Jahi’s suffocation injury and was admitted her story was unfolding in the news. chart reflected a passive response to to the ICU for multisystem organ It was compelling: a 13-year-old in the concerns of her family. Physicians failure and an anoxic brain injury. Oakland, California, declared brain- were notified, but a watch and wait dead after a tonsillectomy, with approach was used. Just after Palliative care was consulted nearly her family at odds with that midnight, she had a code event, 3 weeks after the initial injury to determination. The headlines were which, in its entirety, lasted .2 hours. work with his family to understand gut wrenching, with media locally, Just 2 days later, she was declared their goals of care. In talking with his nationally, and internationally brain-dead.1 medical team, we learned that his reporting on the case of the family family was active in their resistance It was only in more recent articles who was fighting against the brain to formal brain death studies because describing Jahi being buried “nearly death determination of their they “didn’t believe in it.” 5 years after being declared brain- previously healthy child. ”2 dead that more information about We heard that his family had As a palliative care consultant, I her was published: that purple was a Christian faith background and that consider families and their her favorite color, that she wanted to they were seeing signals that experiences holistically. We work to be a doctor when she grew up, that Jonathan was responding. We learned understand who families are in their she wanted to be married and have that Jonathan’s mother, Tara, would fi world, who they are in our medical twins. It was profound to nd this not engage in a meaningful way world, how they make decisions, and information reported, but it was just with the medical teams that were how their lifetimes of experiences as striking that it was not reported supporting them. Because of this, we guide them in that process. We work previously. Why does it matter that decided to forego many elements of to understand how parents and loved she likes purple? From the 10 000- our initial consultation and try to ones and their deep connection to foot view, maybe it does not, but the engage with her in shorter their children can guide us in elements of her humanity, of her increments. We would not discuss supporting them through what comes personhood, matter so much. This brain death. Instead, we emphasized next: often the series of decisions or understanding guides our language that medical teams ask us to meet and support of her family. We, as circumstances leading up to their families so that we can be a more child’s death. clinicians, are skilled in disassociating neutral-sounding board for all of the the child from the patient. Jahi’s Over the course of my career in medical information, dialogue with family saw their defenseless, purple- palliative care, I have met a number of them as their understanding evolves, loving child needing help. In the families whose children have likely and be a bridge between the family language used to describe her by already progressed to death by and the medical team. Our goal was some of the people charged with neurologic criteria or have some sort not to make gains, but to be caring for her: they saw a corpse. of event when death by neurologic invited back. criteria becomes the primary question. I understand how the JONATHAN As we talked about the joyful and landscape of the understanding of Snapchat-filtered pictures papering The idea that a family could dispute death by neurologic criteria is shifting the room, Jonathan’s family pointed what, in the view of some, is from a family perspective. I also to a photograph of a healthy-looking adefinitive medical diagnosis is have experienced how deeply child, a church friend, and chimed in unfathomable to many clinicians,3 but uncomfortable that is for clinicians that she was pronounced brain-dead it is increasingly common in my and institutions where the once-firm some time ago, but she miraculously practice as a palliative care provider. criterion is being actively questioned survived. They were a prayerful In response, I will present a case from by parents. How do we bridge the family and held a vigil with their my own practice. To respect patient chasm that exists when the medical community before, so why wouldn’tit privacy, this is an amalgamation of community determines a child has work again? They had done their several brain death cases. died, and their parents disagree? research and knew of other cases in Jonathan was a 17-year-old young which the medical community was man who spent a lot of time outdoors wrong in their determination: JAHI MCMATH STORY to escape the stressors of depression patients showing the same signs that Jahi awoke from her surgery and and anxiety (a relatively new Jonathan was showing who were still began to spit up blood an hour later. diagnosis for him), for which he was alive. We thanked them for sharing Her stepfather, advocating for undergoing treatment. He arrived at such an important part of their story, intervention because of the continued our institution with an intentional finally understanding their resistance. Downloaded from www.aappublications.org/news by guest on September 27, 2021 S82 SCOTT There would be no brain death mother, Nailah Winkfield, who spoke favorite Christian song on repeat as testing, they informed us flatly, of the medical team at Jahi’s funeral: the second and conclusive test was because they felt the warmth of his “Stop pulling the plug on your people. completed. No words were spoken. skin and saw the color of a person The doctors – they are not God.”2 She silenced her music, and we who was very much alive, even noting followed her cues that it was time Jonathan’s family asked for outcomes, that if they talked with him and to leave. a prognosis, and for thoughts about touched him, he was able to give what kind of care he would need to a thumbs up. We understood this to In the following days, she no longer get back to normal. This is common in be a Lazarus sign, a common reflex, questioned the validity of the results medicine, with physicians and but also illustrated how confusing it of the examination but described clinicians, often at the request of must be to see such understandable what she saw: her son, who looked families, asked to anticipate outcomes signs from your child and be told that the same as he did on the day he and provide a firm prognosis. And they meant nothing. His family stated arrived at our hospital. He did not sometimes, when those expectations many times that his other organs look like a corpse. His skin was are long surpassed, the parents are were not dying, so how could he perfect, and he was not decaying. understandably and righteously possibly be dead? How could life Ultimately, Tara decided to donate indignant. This survival becomes an ’ support, as they understood his Jonathan s organs, which was the only integral part of the narrative of that ventilator to be, support a dead body? way she could make sense of what family and that child. Their pride in happened. She unpeeled each The medical team noted different their miracle child who is walking photograph from the wall of the ICU fi ndings, including absence of cough despite being told that it would never room where they had held the vigil or gag and the presence of spinal happen or who lives long past what and began her journey back home, fl re exes, which elicited his movement. was supposed to be their last many weeks after the initial suspicion His family heard this information but birthday is common. The pride in of brain death was discussed. felt their evidence was just as strong.