NR (as he is named in UK court documents) was born in 2020 with a malformed brain. He had, callosal agenesis, cortical dysgyria, dysplastic basal ganglia, a cleft lip and palate, and anopththalmia (no eyeballs). He was not expected to survive.
Such babies can surprise us. He received expert neonatal care and, after six months in the NICU, was discharged home at age 6 months. While at home, his parents would take him to parks and swimming pools. Videos from that time show him smiling and chuckling when cuddled by his father. He was relatively stable until age 3 when he was admitted to hospital with severe infections. Subsequently, he developed respiratory failure and mechanical ventilation was started. By April, 2024, he could not be weaned from the ventilator. The doctors and nurses recommended stopping his ventilator and providing palliative care. One testified that “NR is unlikely to derive any benefit from continued life sustaining treatment in the absence of any discernible evidence of clinical improvement.” Another believed that the burdens of continued life-sustaining treatment “far, far outweigh” any benefits. The doctors consulted the hospital ethics committee which agreed with the doctors that further treatment was not in NR’s best interest.
NR’s parents disagreed. They told the judge that they consider NR to be a gift from God whose life is meaningful and has given meaning to the their lives and the lives of many other people. They acknowledged that, as a severely disabled child, NR would never have the range of experiences that a child without his disabilities could have. Still, they said, they thought he benefitted from, and returned, their unconditional love. They thought it would be both unethical and psychologically devastating to stop his ventilator and let him die.
In April, 2024, Judge Nigel Poole of London’s High Court heard the case. He said, “The key question is whether it is in NR’s best interests to continue invasive ventilation and other life sustaining treatments.” After hearing testimony from doctors, nurses, NR’s parents, and a court-appointed guardian, and after visiting the hospital to see the child himself, he ruled that continued mechanical ventilation was not best for NR. He wrote, “(NR) will never be able to live outside the critical care unit, he will never live at home, and there is no hope for any progress in his underlying conditions.” He agreed with the clinicians that “it would not be in NR’s best interests for life sustaining treatments to continue to be provided.”
NR was transferred to hospice. At the hospice, he was extubated on May 8, 2024. To everyone’s surprise, he was able to breath for himself. He was discharged home in early June with supplemental oxygen provided through a nasal cannula. He is fed through a jejunal tube. He can sit in a chair, supported. He was again able to go to the park with his parents where, according to them, he can enjoy the sun on his face and feel the wind in his hair.
A few months later, the parents returned to court and asked that NR’s court-ordered DNR be rescinded. Judge Poole was puzzled by NR’s improvementd, “It remains unexplained how NR has managed to confound the expectations of all medical professionals who assessed him and treated him prior to his extubation on 8 May 2024.” He seemed flummoxed about how courts should, in the future, deal with evidence of dismal prognoses offered by doctors. “A prediction should not be disregarded simply because it may prove to be wrong. However, confident predictions are sometimes confounded and the Court must be vigilant and humble in the face of apparent certainty.”
This is not the first time that patients have confounded doctors’ expectations. In 1977, doctors confidently predicted that Karen Ann Quinlan would die quickly if her ventilator was removed. The ventilator was stopped and Karen lived for another 9 years. Doctors in Texas predicted that Tinsley Lewis could not survive and sought a court-order to withdraw life-support. She survived and was alive at home on her 4th birthday. Boutillier reported that, of 164 babies who had life-support withdrawn and were expected to die, 21% survived to discharge and most were still alive two years later. Meadow and colleagues also showed that doctors’ predictions of mortality were often wrong. Jahai McMath was declared brain dead. The State of California issued a death certificate. Years later, she was still alive.
These facts lurk behind legal cases such as the one involving NR. In such cases, both doctors and judges assert a degree of certainty that is impossible given the well-known facts about the difficulty of prognostication in complicated cases. We never know, with certainty, that someone will die after the withdrawal of life-support.
Such uncertainty does not mean that life-support should never be withdrawn. In fact, most deaths in NICUs and other hospital venues follow decisions to withdraw life-support. Acknowledgement of uncertainty should lead to humility an making such decisions and a deeper understanding of the psychological and spiritual needs of families facing such decisions. Such decisions will get tougher, rather than easier, as we develop new therapies that might make past methods of prognostication obsolete.
Today’s best analyses of such struggles, uncertainties, and decisions come not from doctors or judges or bioethicists but from parents and artists and who explore the issues in fiction, film, memoir, and drama. They deepen our understanding of what it means to care for loved ones in the liminal spaces between life and death.
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