The means by which a society cares for its most vulnerable should be a seemingly straightforward matter, but in practice it never truly is. Take for instance the endlessly complex and sensitive circumstances that surround the issue of end-of-life care. Families, physicians, and religious leaders have long found the topic of end-of-life to be particularly vexing. Up to the early nineteenth century, those in the last stages of life would frequently be attended to by a vigil by family members and clergy. During the Industrial Age, however, attitudes changed. In crowded cities, the threat of epidemics led authorities to discourage or even prohibit lengthy vigils.
Over time, as medical advances and specialist medical centers lead to greater possibilities for extending life, more people spend their last days in hospitals, often in the hope of extending life. The question of whether one can die with dignity with tubes in one's throat is preferable to a solemn death in hospice supplies an emotional and spiritual foundation to a perplexing contemporary conundrum.
Through a more contemporary lens, the notion of whether families or physicians should determine the correct course of medical care for those with terminal conditions is an unresolved tinderbox at the intersection policy, faith, and politics. In the United States, the patient, or the family, makes the ultimate decision of when to stop medical care. In the United Kingdom, on the other hand, the law favors a standard of best medical practices regardless of the family's wishes. The tragic case of Charlie Gard concretely illustrates this latter principle.
Charlie Gard was born on August 4, 2016. Within weeks of his birth, his parents, Connie Yates and Chris Gard, noticed that Charlie had difficulty lifting his head. After complications (including failure to gain weight) developed he was taken to London's Great Ormond Street Hospital, where he remains. The infant was diagnosed with infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS), an extremely rare inherited condition where the mitochondria within the body’s cells cannot generate energy. Death occurs within months; there is no cure. Presently, Charlie is deaf, cannot grasp objects with this little fingers, has frequent, serious seizures, and can only breathe with the assistance of a ventilator.
Desperate for any avenue of treatment, Connie Yates contacted an American neurologist who said there was a "theoretical possibility” for treatment. The therapy proved to be ineffective and Charlie experienced numerous seizures, indicating severe epileptic encephalopathy (and, thus, brain damage). The doctors at Great Ormond concluded that any further treatment would be futile and would be likely to prolong Charlie's pain. As a result, Ms. Yates' appeal for treatment was rejected.
In February 2017, the Court of Appeal rejected an appeal for any further treatment. Then the hospital petitioned the High Court to discontinue artificial ventilation and only administer palliative care. The court heard expert testimony indicating that Charlie no longer had a sleep/wake cycle, indicating severe brain damage, and that his seizures indicated death was six to nine months away. Even the American neurologist said the treatment was "very unlikely" that Charlie would improve, and that the "cultural difference" in treatment between the United States and England was the only difference in approach, as "anything" would be tried in the United States, even without rigorous clinical trial. The neurologist, who acknowledged never having seen Charlie, could only state: “I would just like to offer what we can." Perhaps, he offered, some upper body strength might and reduced time on ventilators might be achieved, although there would be no structural repair to the brain. Charlie's parents denied that brain damage was that severe, although they acknowledged that his quality of life was not worth sustaining if no improvement could be achieved.
In April, the High Court decided in favor of the hospital, arguing that it was in the best interest for Charlie to stop subjecting him to further pain (which he could not react to). The Court acknowledged the decision was "the darkest day" for the parents and indicated "my heart goes out to them." Yates and Gard then tried to get the Court of Appeals to reverse the High Court decision on the grounds that they had presented a viable treatment that was ignored and that treatment could only be rejected if it resulted in "significant harm." In May, the Court rejected this appeal, and on June 8 the Supreme Court also rejected their appeal. Finally, in late June 2017, the European Court of Human Rights affirmed that the hospital could remove artificial breathing support.
But Charlie's parents did not give up. Since the Court’s decision, they have raised about $2 million to bring Charlie to the United States, where he would receive treatment. And in early July 2017, both Pope Francis and President Donald Trump expressed support for Charlie's parents. Bambino Gesú Children's Hospital (operated by the Vatican), offered to coordinate with international experts to provide the experimental treatment. Great Ormond Street Hospital rejected this offer, insisting it would disconnect life support. Later that month, the Gards delivered a petition with 350,000 signatures to the hospital, requesting that they allow Charlie to be taken abroad for further experimental treatment, and another court hearing will be held July 10 to determine if previous decisions should be overturned. Meanwhile, in the United States, while President Trump offered no specific help, several Republicans in Congress plan to introduce a bill to make Charlie Gard an American citizen so he can receive treatment in the United States. Now ”An American doctor who specializes in conditions such as that affecting Charlie Gard will be traveling to Britain next week to assess the critically ill child.”
This case is tragic for many reasons: of course, for the baby’s suffering, for making public a family's anguish, for the doctors who are held in suspicion for their intents, and for the ensuing political circus that inevitably rises from the vacuum of no-easy-solution to a complicated ethical scenario. Dr. Robert D. Truog, the Francis Glessner Lee Professor of Legal Medicine and Director of the Center for Bioethics at Harvard Medical School, noted that the "tragedy" inherent in the Charlie Gard case is that he “is dying and there is nothing to stop that, and for a parent that is the worst thing in life.” Yet, Dr. Truog is critical of those who raise false hopes:
What the family needs is to come to terms with this and not to be fighting it. The efforts from the Pope and Trump are feeding into their denial about what is going on with their child, and that is neither helping them nor the child.
Cases like Charlie Gard’s, as heartbreaking as they are, force us to reevaluate our relationship between our highest ethics and the realities of scarcity. Yet, when a politician calls for the protection of a single individual—think back to the debate surrounding Terry Schiavo—instead of calling for more healthcare access for all, we should question their value systems. We may look at the Gard case and conclude that physicians and courts should not have the final decision in end-of-life cases. But, as Dr. Truog acknowledged, medical advances themselves have created a massive problem, since people are now too willing to trust that some medical advance will prolong the life of a family member: "A family who can't accept the limits of medicine… is the number one cause of ethical conflicts today in American hospitals."
Every human life matters as human dignity is truly infinite, but let us not be susceptible to voices that shine a light on an individual at the expense of the overall population. If the case of Charlie Gard is indicative of anything, it’s that we, as a society, need to look within ourselves and decide how best we want to protect the medically vulnerable. At present, many are slipping through the cracks. Let us work to improve our systems of care, and our empathy for those suffering. If we gave these untold populations even a modicum of the attention as Charlie Gard is receiving, we could save countless lives and healthcare access probably wouldn’t be as big or as divisive an issue as it is currently.
It is never easy to talk about issues pertaining to the death of a child, but, right now, it is necessary. As a parent, I know I would want to do everything possible both to save the life of a child as well do I could to reduce suffering, but we must also zoom out to expand our empathic consciousness to the systemic level. While all lives naturally possess an equal amount of dignity, ignoring the medical struggles of millions in favor of obsessing over a single person or family is a disservice and a distraction towards bigger considerations for society as a whole. Future policies on end-of-life care should include input from patients, medical professionals, spiritual counselors, and the community; to be sure, no one wants to feel powerless while their loved ones die. But we shouldn’t let these cases needlessly divert our attention. There are millions of people without access to quality healthcare who need their advocates as well.
Rabbi Dr. Shmuly Yanklowitz is the President & Dean of the Valley Beit Midrash, the Founder & President of Uri L’Tzedek, the Founder and CEO of The Shamayim V’Aretz Institute and the author of ten books on Jewish ethics. Newsweek named Rav Shmuly one of the top 50 rabbis in America and the Forward named him one of the 50 most influential Jews.