By Ann Neumann
But, fundamentally, choosing against a life-sustaining measure because it is unduly burdensome or futile with the foreseeable consequence of an earlier death is not the same thing as declining or discontinuing care to directly facilitate dying. The former is a choice for a different kind of life, however long it lasts, and the latter is a choice for death. —O. Carter Snead, director of the Center for Ethics and Culture and professor of law at the University of Notre Dame, in an op ed, “Why the Pope is Fighting for Charlie Gard,” for CNN on July 13, 2017
With the death of an 11 month-old child last month, another cycle of life-and-death spectacle left the world stage. They called themselves the “C Team”: Connie Yates, the desperate grieving mother with no flesh between her bones and her draping press conference clothes, a cascade of hair to her unnursed breast, a fair curtain covering one eye; Chris Gard, the crusading father, a dark warrior with a cloth monkey in the breast pocket of his ill-fitting, armor-like suit, protectively leading his wife by the hand into a wad of press or a tangle of London traffic; and Charlie, universal infant, innocent, white, golden haired and bright, “our angel,” our future, our hope—whom we were all asked to bludgeon or protect.
A fantastical tragedy (like so many other tragedies of young women and babies before it, Karen Ann Quinlan, Nancy Cruzan, Terri Schiavo, Jahi McMath, Baby Joseph), the story of Charlie Gard featured warriors, philosophers, saints, kings, charlatans and maids, all illuminated by a robust and perpetual chorus. All displaying the most compelling characteristics of human drama: conviction, pride, bravery, justice, duplicity, grief, frenzy, and compassion. It was a passion play of a new but familiar order, a perfect fleeting little boy onto whom so much could be projected; the ghost-like parents, gaunt, speaking, when they spoke at all, in the clichés of profound emotion.
Charlie’s condition, mitochondrial DNA depletion syndrome (MDDS), was rare, debilitating, and fatal in early childhood. It affected many organs, including the brain and muscles and caused a wasting of his tissues and energy. He was deaf, immobile, epileptic and increasingly unable to see. He was kept alive only by artificial ventilation.[1]
The Charlie Gard story in three parts: 1. The doctors of Great Ormond Street Hospital in London advised Charlie’s parents to end artificial ventilation. They refused. In April this year the Family Division of the High Court ruled for the hospital. 2. Chris and Connie appealed—to the courts, to the public, to the media, to the pope, to the US president, to Columbia University’s research scholars, to a hospital in Rome, to a hospital in New York, to US “pro-life” evangelicals, to you, me, and every media consumer. 3. Finally, when science proved even too conditional for hope, the Gards relented. Charlie died in hospice on July 28, one week before his first birthday. Donated funds were established as a foundation—little Charlie’s afterlife and legacy—for other children with rare medical conditions so that #charliesfight, #charliesarmy might have everlasting life.
Beginning, middle and end— Aristotle’s protasis, epitasis, and catastrophe–the three stages of plot structure. Our reward for attending to the Gards and their courts is a kind of Aristotelian catharsis. “Aristotle’s somewhat technical understanding of catharsis acquires its overtones of meaning from a double linguistic heritage, in part medical and in part religious,” states the Princeton Encyclopedia of Poetry and Poetics. The medical part harks to the early writings of the Hippocratic School of Medicine, which “refers to the discharge of whatever excess of bodily elements” has made the body sick. Once discharged the body may return “to that state of right proportion, which is health.”
The religious part Aristotle likely picked up from various Plato works, including Phaedo, in which catharsis consists “in separating, so far as possible, the soul from the body, and in teaching the soul the habit of collecting and bringing itself together from all parts of the body, and in living so far as it can both now and hereafter, alone by itself, freed from the body as from fetters.”
The resultant meaning from blending these two philosophical strands is both physical and psychic“A wisdom is distilled from tragic suffering: man is pathei mathos, ‘taught by suffering,’” states Poetry and Poetics, referencing the chorus in the Agamemnon. Richmond Lattimore wrote in his classic 1953 translation and introduction to the Oresteia, of which Agememnon is the first in the trilogy: “What they kill is what they love.”
Grieving mother Lu Spinney wrote in the New York Times on August 11 about the death of her son who had been mentally and physically disabled in a skiing accident. He died of pneumonia four years later when the family decided not to treat him: “protecting my son meant wishing for his death.”
Great Ormond Street Hospital wrote in a June 18 statement: “Our priority has always been, and will always be, the best interests of Charlie Gard.”
The story of modern medicine is so very many Oresteias. The suffering are dead at the hands of those who loved them. The killers, people like you and me, killing what we love. Again and again the story is epic heartbreak and tragedy. We blame whatever we can, we ascribe the eternal pain to fate, we give it order, outline it in three parts. We contrive meaning and lesson out of the cold body, the blood on our hands, the shattered lives, the cacophony of the chorus, the memories of the dead. It is what we do.
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The four horsemen of the tragedy of Charlie Gard are same as they ever were and will be: the medicine; the media; the politics; and the faith, hope and charity.
The medicine was bitter. There was no cure for the child’s disease. The experimental treatments waved wildly before the courts’ and the family’s eyes were rudimentary, untested, and prescribed from afar. On July 7, New York Presbyterian Hospital and Columbia University Irving Medical Center offered to accept the child if the UK courts cleared him to leave the country. Dr. Michio Hirano offered an experimental treatment with a 10 percent efficacy, if he could get the FDA to approve his treatment of the child or his mailing of the special drug to London. Hirano was immediately and roundly criticized by other doctors and ethicists for not having examined the child before offering medical treatment. And for, rightly or wrongly, having a financial stake in the experimental treatment he intended to use. Hirano’s commitment to Hippocrates’ “do no harm” was strongly questioned.
The media spent three months voraciously vying for every angle, opinion, development and counter narrative of the Charlie Gard story. Every opinion piece, every article pumped more anguish into the exposition and rising action of Charlie’s narrative—attracting support from global luminaries like Pope Francis, who cagily tweeted on June 30:
“To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.” Cagey because Vicenzo Paglia, the president of the Vatican’s Pontifical Academy for Life wisely weighed the nuances of the case and released a statement which read in part: “we must also accept the limits of medicine and […] avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family.” Factions claimed the Pope’s words for themselves; practically, the Holy diagnosis was inconclusive.
Yet a hospital near the Vatican tweeted that it would take the child in. On Twitter the hashtag #jesuisCharlieGard proliferated, accompanied by adorable photos of the infant, enormous doe eyes seeming to stare imploringly at the camera. The Gards also had an active crowdfunding website, charliesfight.org, and Facebook and Twitter accounts that amplified every shudder, heartstring, statement, or report. After Charlie’s death on July 28th, #iamcharliegard, used by the ubiquitous and consistently “pro-life” website, LifeNews.com, kept Charlie’s legacy alive by playing on the “I am Sparticus” meme to highlight other infants in supposedly similar straights as Charlie.
All this swirl, engaging general readers, infecting primed demographic groups—religious and political, particularly—did important financial work: driving traffic to media outlets and charity dollars to the family’s GoFundMe page which raised nearly $2 million dollars in the blink of an eye. What the funding did was remove any question of how Connie, a caregiver, and Chris, a postman, would pay for their child’s treatment—an important point for American supporters who apparently believe—grotesquely, inconsistently, immorally—that care really only should go to those who can afford it. The funds also exempted the Gards from British national health care, a devilish and corrupting form of socialism according to those bootstrapping conservatives across the pond.
The political chips were stirred. They fell for or against as they may: UK Prime Minister Theresa May and muppet-like UK Foreign Secretary Boris Johnson stated their support for Great Ormond hospital. US President Donald Trump, however—having just run through the repeal and replace gauntlet but nonetheless unwilling to admit anything like defeat—came out for Charlie’s charity-funded experimental treatments. He tweeted, “If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.” @fight4charlie, the C Team’s Twitter account, retweeted, “Thanks @realdonaldtrump for your support – @theresa_may do the right thing and #savecharliegard!”
Unintentional comic, Trump pal, and former UK politician Nigel Farage stated on his radio show, “Should we live in a society where parents, providing they’re of sound mind, can make the ultimate choice about their children’s future. Or does the state have that power? What this case has shown, sadly, is the state has that power. I don’t like it. I want this changed.”
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Why Farage wanted “it” changed was best articulated by Bobby Schindler, brother of Terri Schiavo, founder of the Terri Schiavo Life and Hope Network, self-proclaimed disability rights activist, and Chris, Connie, and Charlie visitor a few weeks before the latter’s death. Schindler wrote in a June 30 statement,
The central issue of the Charlie Gard struggle is not about rationing, limited resources, or even life support. At issue is whether universal healthcare means that bureaucrats and judges will determine appropriate treatment, or whether parents like Charlie’s with the energy, finances, and physicians to care for their child will be allowed to do so.
Schindler here and elsewhere condemns “universal” healthcare (read: blood thirsty bureaucrats) for making the hard decisions when those decisions should be up to the “consumer”—but only those consumers who have the “energy, finances, and physicians” to make their own decisions. And only if those decisions are ones Schindler and his radical “pro life” allies agree with. It’s an argument for privilege when you examine the costs to community that futile care, like what was required to keep little Charlie “alive,” are considered.
Keeping Charlie alive was an all court press conference for the specialness of some patients (the pretty young ones) at the expense of all other less meme-ready, emotionally engaging patients. If you dramatically get the audience’s attention, you get the special drug, the pope’s tweets, the moral justification.[2] The hospital’s concerns regarding Charlie’s suffering and the misuse of resources were grotesquely re-narrated as proof of the “culture of death.”[3] No nuance. No moral ambiguity. The world consists of the immoral killers (feminists, government, hospital ethics boards…) and the moral killed (innocent babies, the most vulnerable for whom miracles may occur).
Schindler explained to Glenn Beck in July the seemingly senseless reason the hospital both refused to treat Charlie and prevented him from getting treatment elsewhere: “But it makes sense to me. And also, think about it this way, Glenn. If they are wrong and Charlie does improve from treatment out there, think about all the other families now that are being cared for in that hospital.” Fear of being found out as fallible. He continued:
I mean, if you’re looking at it from a purely financial point of view, the hospital’s best interest is to say, “Okay. Listen, this person’s life is going to cost a lot of money. He’s not going to get much better anyway.” So then they go in and tell the parents. They give them this poor diagnosis. And they say, “Look, you don’t want to end up like a Terry [sic] Schiavo, so to speak. You know, why don’t you do what’s best for this person. Put him out of his suffering and end his life.” And they have the legal means now to do this.
What Schiavo brought to the Gards’ fight was language, media savvy, and a well-established frame for how to hope beyond all hope (a suffering for the sake of suffering). The Life and Hope Network was called TerrisFight.org long before little Charlie was born. Everything Schiavo knows about media sensation he learned from circus barker extraordinaire, Randall Terry, who staged protesters outside Terri Schiavo’s hospice and called in legislators, from local to the president, to prevent Schiavo’s feeding tube from being removed. Schiavo also gave the Gard’s access to a fundraising network and a long-cultivated list of allies in the medical industry.[6]
Schindler also brought the Gard cause an indisputable, if misdirected, mantra: killing the disabled is wrong. Aid in dying—euthanasia—is always immoral. And denying or removing treatment, as the courts ordered for Terri Schiavo’s feeding tube, is murder. Charles C. Cosey, a professor at Fordham University, rallied to this mantra in an article for FirstThings:
They reached this judgment on the basis of [Charlie’s] expected mental disability. They denied him treatment, and ordered his ventilator removed, not because of the burden of the treatment, but because of the burden of his life. In a cruel act proposed by doctors, approved by courts, cheered by the press, and blessed by certain high clerics, Charlie Gard was euthanized. It was euthanasia by omission, but it was euthanasia all the same.”
Many saw through the ill-conceived categorization of little Charlie as disabled, as the stopping of his ventilator as murder. They were having none of the Schiavo-like tragic framing and fashioning their own lessons from suffering. Michael Redinger, psychiatrist and medical ethicist at the Western Michigan University Homer Stryker MD School of Medicine, wrote at America magazine:
One category includes those treatments that are termed futile or, more accurately, “nonbeneficial,” and it has been an increasing focus of both secular and Catholic medical ethics. Physicians are not obligated to offer treatments that, in their medical expertise, have no reasonable chance of success or in which the harms so far exceed the potential benefits that it becomes inhumane to provide them. To do so violates the ancient maxim to “first, do no harm.”
Redinger’s tone, like that of the Vatican’s Vicenzo Paglia, is the tone the Mother Church uses to smack down undisciplined and upstart “pro-life” politicians and advocates who try to speak for them. Redinger shakes a finger at the “well-intentioned members of the pro-life community” who “reflexively leapt to the defense of the Gard family”: “In doing so, they unfortunately failed to recognize the nuances of Catholic teaching on end-of-life care. When life is valued so highly relative to other goods, its pursuit becomes detrimental. In effect, life itself becomes an idol.”
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The faith, hope, and charity of Charlie Gard’s tragedy are eternal. Early on, when they first engaged the courts, Gard’s parents believed that he was strong enough, special enough, to be among the few 10 percent of patients for whom the experimental drug could be efficacious. How could they? And yet, how could they not? The day little Charlie died, they wrote, “We are struggling to find any comfort or peace with all this but one thing that does give us the slightest bit of comfort, is that we truly believe that Charlie may have been too special for this cruel world.” When there was no hope for their son’s survival, they fabricated it out of noise and light and social media posts and small-increment charity.
As to Charlie’s suffering, he was their fighter. They could see no pain on his face, despite the court’s constant concern for his suffering. Of if they could see his pain, it meant he was still theirs, still alive; his pain now paying forward his heavenly reward.
Most of the comments on Lu Spinney’s essay, “Protecting my son meant wishing for his death,” about her disabled son’s death by pneumonia, are encouraging and supportive. She had done the brave, right, counterintuitive thing: she cared for him by letting him die. But one voice stands out in the affirming chorus, one that stays with her son’s suffering rather than raising up Spinney’s grief. Cynthia Starks of Zionsville, Indiana wrote two days after the piece was published:
Yet none of the comments I have read considers that we are all called to suffer as Christ suffered. No one escapes. Not even beautiful and brilliant young men. With a belief in God, we know that our suffering is united with Christs [sic] in service to the world. My own brother, died of a particularly painful and aggressive form of cancer. Our priest said that he felt sure his suffering was his purgatory on earth. Mother Angelica, founder of the EWTN Network, once said, in her final difficult illness, that she prayed each night for one more day of life so her suffering could be offered up for another soul in purgatory. I know these beliefs are out-of-fashion, but some of us still hold to them, as they are still taught by the Catholic Church.
It’s an ancient sentiment, one that, even before Jesus hanged by nails, compelled Greek choruses to extoll pain’s great lessons. What was Charlie’s lesson? Christ too suffered? “No one escapes?” And yet, through death, Charlie Gard did.
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[1] I take this description of MDDS and Charlie Gard from an essay by British physician Phil Whitaker, which appeared at the New Statesman on July 11, 2017: http://www.newstatesman.com/politics/health/2017/07/decision-over-charlie-gard-comes-down-matter-belief
[2] See also the Right to Try movement, which successfully has sought to circumvent FDA drug approval processes (big government!) to allow boisterous parents to request experimental drugs directly from pharmaceutical companies, thus jeopardizing existing testing procedures for treatments needed by the rest of us. Because: they’re special. https://wp.nyu.edu/therevealer/2015/12/21/the-patient-body-accusing-the-fda-of-playing-god/
[3] The phrase comes from Pope John Paul II and is most often used to refer to abortion and “euthanasia” but is increasingly applied to confrontations over removal of physiological support. For more on the “culture of death,” see Wesley J. Smith, a self-appointed bioethicist of this wing of the “pro life” movement. https://www.firstthings.com/web-exclusives/2017/06/three-culture-of-death-tipping-points
[4] See also the Right to Try movement, which successfully has sought to circumvent FDA drug approval processes (big government!) to allow boisterous parents to request experimental drugs directly from pharmaceutical companies, thus jeopardizing existing testing procedures for treatments needed by the rest of us. Because: they’re special. https://wp.nyu.edu/therevealer/2015/12/21/the-patient-body-accusing-the-fda-of-playing-god/
[5] The phrase comes from Pope John Paul II and is most often used to refer to abortion and “euthanasia” but is increasingly applied to confrontations over removal of physiological support. For more on the “culture of death,” see Wesley J. Smith, a self-appointed bioethicist of this wing of the “pro life” movement. https://www.firstthings.com/web-exclusives/2017/06/three-culture-of-death-tipping-points
[6] The Life and Hope Network has a long established “Lifeline” that is supported by donors and staffed by likeminded doctors, ethicists, nurses, facility and hospital directors and lawyers. In the past half dozen years, the Life and Hope Network has been involved in many of the high profile “futile care” cases that have garnered national and international attention: https://donorbox.org/lifeandhope?recurring=true
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Ann Neumann is author of The Good Death: An Exploration of Dying in America (Beacon, 2016) and a visiting scholar at the Center for Religion and Media at NYU.