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. their child is balanced with a healthy They had experience and faith dose of “I told you so” and often I have thought about Jonathan and backing them up. They also had their impacts the ability to hear new Tara and the other families that I have own data: other cases and a member prognostications. If we were wrong met along their journey to of their own community who proved before, what makes us right this time? understanding and accepting brain everyone wrong. Tara asked us why Families can perceive this cycle as death. I have wondered how a family people expected her to be sitting a medical team underestimating, not that felt so certain that Jonathan bedside and sobbing. She was not believing in, or giving up on their would wake up with a wry smile and mourning. Jonathan was right here. child: a judgement on the child’s return to himself could move through She asked aloud where Jonathan worthiness to live and the child and their resistance from not allowing for would go for care after the hospital. family’s determination to fight against brain death testing to then donating the odds. his organs. Was it the element of PROGNOSIS AND UNCERTAINTY OF uninterrupted time to process the Essentially, the way we frame RECOVERY initial trauma and see no miracle prognostications with families can improvement that allowed Tara to let Each time another person tried to create a profound sense that the line him go? Jahi’s brain death testing fi discuss neurologic testing with Tara, between ghting for their child and began just days after her surgery and she became more steadfast in her protecting their child from us code event. Jahi’s mother said, “[Y]ou resolve that Jonathan would be okay. becomes blurred. need to step back and let God have ’ Jonathan s family described their some time to heal my daughter.”4 sense that each new provider was SPACE AND TIME coming in to “take a swing at it” The voices of Tara and Nailah, despite and that we as an institution were Ultimately, Tara walked out of the being separated by miles and years, “playing God.” Playing God meant room and said she was ready for the seemingly were asking for the same that we could be the arbiters on neurologic tests to begin. Everyone thing. Did the introduction of a legal Jonathan’s status as a living being, was a bit surprised, maybe even Tara progress in the early stages of their that our limited view as medical staff herself. She was admittedly shocked trauma drive their efforts? I believe with a concrete and often unmovable when the first test was complete, in uninterrupted time is essential in definition of life prevented us from disbelief that the signs they so badly cases like these. However, time is not connecting to the voice she was wanted to see were absent. A day enough. Navigating the complexity of listening to, their higher power. This later, Tara sat in a chair at the foot of brain death, especially when there is echoes the perception of Jahi’s the bed and listened to Jonathan’s a traumatic element to the injury,

Downloaded from www.aappublications.org/news by guest on September 27, 2021 PEDIATRICS Volume 146, number s1, August 2020 S83 requires medical institutions and They were agreeable in their firm care for myself, and a child of aging clinicians to use a trauma-informed stance and unemotional in their adults, I have unlearned the stories of approach to care combined with delivery. It mirrored the calm and Tuskegee, the data on health limitless compassion and empathy. passive communication culture of our disparities, and the narratives of Trauma-informed care means institution. Would the outcome be families in my community, but that is acknowledging the ongoing trauma of different had we done things not so. the family and responding to their differently? Did we do anything new? The painful reality is that my personal grief and trauma appropriately.5 This And now, would Jahi McMath’s family and professional experiences have work requires a multidisciplinary have walked a different pathway with reconfirmed the sense of team who can acknowledge the grief her had the team caring for her hypervigilance that I see in many associated with an ending no one was responded to their anger, grief, and families that I support. It is painful to expecting and the ability to say, “I’m denial and approached them consider the reality of the flaws of the sorry,” and mean it. Families benefit differently? With these questions in system that we rely on, even more so enormously from the empowerment mind, I return to the words of those when that consideration asks us to that comes from telling their stories, closest to Jahi: her family. Her evaluate our own biases. sharing their beliefs and hopes, and grandmother, Sandra, asked, “If the being heard and taken seriously. hospital had been more It is important to consider the ways in compassionate, would we have fought which we, as providers and staff, so much?”6 reinforce the fears people have about OTHER CLINICIAN’S DISTRESS us. Nailah Winkfield said, about the I have wondered how ICU and THE MCMATH EFFECT AND LOSS OF care Jahi received, “It was like he neurology clinicians who walk with TRUST thought we were dirt.… No one was families facing this diagnosis far more listening to us.”1 These words are “ ”7 frequently than I do felt when The McMath Effect, the rejection of staggering but serve as a reminder of asked to effectively avoid the topic. a brain death determination by my point. The way families Exasperated? Likely. Frustrated families, has been written about in experience care at our institutions and even disrespected? Potentially. the years after her brain death profoundly affects the way they make Concerned about allocation of limited determination. Families are more medical decisions for their children. and precious ICU resources? aware than ever that they can refuse This is evidenced by my own Definitely. We asked to set aside the brain death testing or refuse to accept experience working with families discussion about the validity of brain the results. Religious leaders and who feel marginalized or voiceless in death testing and focus on the only family and community members fi the machine of their child’s care. More thing we could do, which was to implore their loved ones to ght, to than one family, when considering figure out how to minimize the have faith, and to remain steadfast. In organ donation after a brain death additional trauma to Jonathan’s many other circumstances, clinicians diagnosis, have asked me which floor family, and see if time and support are asking families to do this very the child is on whom we are giving would allow for more clarity. thing. Yet we, as clinicians, wonder why family members, as the organ to, having heard that How did the bedside nurses, with nonclinicians, feel they have enough “harvesting organs for transplant” each titration of medications and information and the right to question drives a brain death diagnosis. Once, introduction of antibiotics, feel? The a clinical diagnosis, or in this case, the a family whom I met while their child question they began to ask, “What am legal definition of death. “It’s like they was on extracorporeal membrane I doing to this patient?” was so don’t trust us,” many people say. oxygenation at the age of 19 recalled different from the nursing ethos, the misguided efforts to place their My hope is that each family that which asks, “What can I do for this child in foster care while she was in walks into a hospital seeking care for patient?” I imagine those same the NICU and the trauma that medical concerns leaves feeling questions were present for the remained. Their ability to process a sense of trust in medicine. bedside nurses in Oakland who were new changes and trust diagnoses was Unfortunately, that is not always the caring for Jahi as the chaos around clouded by those memories, and their case. Families come with generations her swelled. resolve to fight was strengthened by of histories, personal experiences, their history. Did Jonathan’s family’s politeness or and narratives that reinforce the whiteness factor into the way they untrustworthiness of medicine, my As a palliative care consultant, I have were approached? They were not family included. I want to say that as been in many rooms, behind closed staging protests outside of the doors a medical social worker, a parent of doors, when discussing the attempts of our institution, like Jahi’s family. a patient, a participant of medical to explain brain death and have heard

Downloaded from www.aappublications.org/news by guest on September 27, 2021 S84 SCOTT that although there are potentially forgetting that the words we use do declared-dead-Oakland-13055330.php. ancillary studies to aid in diagnosis, not die with our patients. Accessed May 14, 2019 they should not be offered because 3. Joffe AR, Anton NR, Duff JP, Decaen A. A My hope is that even in our a “whiff” of blood flow on the scan survey of American neurologists about would only introduce doubt that the frustration as providers with how ’ brain death: understanding the diagnosis was correct. It could only Jahi s McMath story played out and conceptual basis and diagnostic tests muddy the picture for the family, regardless of how you view brain for brain death. Ann Intensive Care. prolonging what we knew to be death, we can step back and 2012;2(1):4 remember that Jahi McMath is inevitable: the withdrawal of life- 4. Swan R. Family says Jahi McMath, on sustaining treatment and the death of not just a lesson learned but ’ life support since being declared their child. So if death by neurologic someone s child. She was a daughter brain-dead in 2013, has died. San criteria is muddy for us, how can we who loved the color purple and Francisco Chronicle. June 29, 2018. expect a family who has experienced dreamed of being a doctor and Available at: https://www.sfgate.com/ the trauma of their child going mothering twins. Her humanity bayarea/article/Family-says-Jahi- into a surgery, and then later should always be a central part of the McMath-on-life-support-since-13035873. php. Accessed May 13, 2019 exsanguinating, to find it to be clear? discussion. 5. Withers M. Trauma-informed care and Families are desperate for their ’ ACKNOWLEDGMENTS why it matters: how we re falling short doctors to be wrong, and in my in treating trauma victims and what we experience, when the doctors are not Thank you to Dr Aaron Wightman for can do to fix it. Psychology Today. July 6, wrong, and their child is dying or his thoughtful mentorship. Thank you 2017. Available at: https://www. already has died, they are desperate to Seattle Children’s Division of psychologytoday.com/us/blog/modern- for there to be some meaning in all of Bioethics and Palliative Care. Finally, day-slavery/201707/trauma-informed- care-and-why-it-matters. Accessed this, some legacy that matters. thank you to the families that shared October 30, 2019 their stories so generously. 6. Nabi J. “No one was listening to us.” CONCLUSIONS Lessons from the Jahi McMath Case. REFERENCES 2018. Available at: https://www. Severe brain injury and brain death is 1. Aviv R. What does it mean to die. The thehastingscenter.org/no-one-listening- a tragedy. The families whom we New Yorker. January 29, 2018. Available us-lessons-jahi-mcmath-case/. Accessed meet in these cases will start and end at: https://www.newyorker.com/ May 17, 2019 each day with the pain of their loss. magazine/2018/02/05/what-does-it- 7. Meyers C, Schneider P. McMath saga They will also recall those of us who mean-to-die. Accessed May 13, 2019 shows why reporters need to be clear did or did not see the humanity of 2. Swan R. Oakland teen Jahi McMath laid about ‘brain death’ cases. 2018. their child as they navigated this to rest nearly 5 years after being Available at: https://www. journey. When we leave the person declared brain-dead. San Francisco centerforhealthjournalism.org/2018/09/ out of the medical story, or separate Chronicle. July 7, 2018. Available at: 04/mcmath-saga-shows-why-reporters- the person from their death, we are https://www.sfgate.com/bayarea/ need-be-clear-when-covering-brain- forgetting the human story and article/Nearly-5-years-after-being- death-cases. Accessed October 19, 2019

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