For Maclean’s on July 18, 2017
It’s the most commonly cited phrase from the Hippocratic Oath, the binding document—one of the oldest in history—upon which physicians swear: “First, do no harm.” However, that four-word axiom doesn’t itself appear in the classical text of the pledge. Instead, there’s a promise to “apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice.” That distinction is important: In medicine, harm can be mitigated, but it cannot be avoided. Every procedure carries risk, and the value of beginning or continuing treatment is weighed against the merits of withholding, suspending, or abandoning it. No course of action—or inaction—is free of trade-off. While harm cannot be the intent, it’s inevitable that harm, to some degree, will be done as a result.
And so physicians and surgeons, knowing the limits of their capacity as doctors and that of medicine itself, strive to achieve the best possible outcome while doing as little damage in the process. This includes situations where the “best possible outcome” means sparing a patient prolonged suffering, protecting against futile interventions sought out of desperation, and allowing death to occur as gently as possible. The modern interpretation of the oath includes a vow to “apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.”
This commitment to hold the patient’s best interest above all else, to practise with tenacity and skepticism in equal measure, is of particular importance when patients cannot speak for themselves—even more so when the patient is a child, and there’s denial or defiance from caregivers regarding a diagnosis, prognosis, or proposed treatment.
Which brings us to the wrenching saga of Charlie Gard, the terminally-ill British child at the centre of what’s become an international, ideological brawl over parental rights and the boundaries of intervention when caregivers and medical experts are at odds; a case which demonstrates the delicate balance between optimism and realism in both treating and coping with disease. It raises questions regarding the ethics of medical professionals who provide false hope—a practice known to be predatory and harmful—exposes the moral bankruptcy of those who so often position themselves as defenders of morality, and reveals the callous politicization of a dying child for selfish, partisan purposes.
Taken together, the push to assign blame and assume control over what’s ultimately a genetic tragedy speaks to a broad misunderstanding of disease and how it’s treated—and our stubborn reluctance to concede to the cruelty of fate.
Born Aug. 4, 2016, Charlie has lived all but the first nine weeks of his life in London’s Great Ormond Street Hospital. He inherited a rare, genetic defect which hinders the mitochondria—the powerhouse of the cell—from producing energy. Charlie’s diagnosis of infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS) is incurable, untreatable, and fatal.
Though his parents, Chris Gard and Connie Yates, insist Charlie remains responsive, his MDDS has reached the terminal phase—his body is dying—and the life support that’s artificially sustaining his existence cannot halt the natural progression of the disease. What it can do, however, is temporarily prolong the agony of Charlie’s life: MDDS starves Charlie’s muscles, kidneys, and brain of the energy needed to function, and because of his epileptic encephalopathy, Charlie also suffers from frequent seizures and has extensive, irreversible brain damage at both the structural and cellular level.
Charlie can’t communicate the extent of his discomfort. But in Britain, courts intervene when there’s a dispute between doctors and families over a proposed course of treatment, and judges help determine what’s in the best interest of the patient. And in siding with the doctors selflessly dedicated to the child’s care—ruling against his parents’ desperate appeal to the right-to-try—the U.K. Supreme Court established that Charlie “is suffering [pain] and at more than a low level … it was in his best interests for the clinicians treating him to withdraw [all life-sustaining support] and to provide him only with palliative care.” That ruling upheld decisions from the British Court of Appeal and the Family Division of the High Court of Justice, which had granted the hospital permission to “withdraw all treatment, save for palliative care, to permit Charlie to die with dignity.” The European Court of Human Rights in Strasbourg then declined to intervene.
But Yates and Gard found an American neurologist willing to subject their son to a costly, experimental therapy, and they have been fighting in court since April for the right to take Charlie to America and treat him as they see fit. The couple launched a GoFundMe campaign to finance the therapy—an effort which has raised more than £1.3 million to date—with Yates writing that Charlie “literally has nothing to lose but potentially a healthier, happier life to gain.” Problem is, when Charlie’s medical team asked for evidence of the proposed treatment’s efficacy, the American neurologist—known only as Dr. I through court documents—admitted that “there is no direct evidence, but there is a theoretical scientific basis for saying it could [help].” After learning the full extent of Charlie’s “catastrophic and irreversible brain damage,” Dr. I conceded it was “very unlikely” the experimental therapy would benefit the child in any meaningful way, which aligns with the London hospital that has always maintained the desired nucleoside therapy “would be futile and would prolong Charlie’s suffering.”
Heading into July, their legal options exhausted, it seemed Yates and Gard were finally ready to let Charlie go. “We’re making precious memories that we can treasure forever with very heavy hearts. Please respect our privacy while we prepare to say the final goodbye to our son Charlie,” Yates said on June 30, the day Charlie’s ventilator was set to be disabled. The hospital granted an extended window for goodbyes.
Enter the Pope and the Vatican, the President of the United States, and a range of conservative activists, from notorious right-to-life warriors to fervent champions of free-market health care, some referring to “death panels” blocking Charlie from accessing care in America. One week later, Charlie’s parents were again in denial, and poised to fight on; Yates credited the international attention brought by the Pope and Trump as the “single biggest factor” for Charlie’s life support remaining in place.
On July 13, Yates and Gard were back in court, again pleading their case to Judge Francis, a hearing requested after the hospital—amid intense international pressure—agreed to hear the “new evidence” the parents claimed to have. There remains no resolution, though lawyers from both sides have agreed to arrange for a meeting in Britain between Charlie’s doctors and the American neurologist, who has not yet examined the child, yet remains willing to cede to the parents’ demand for hypothetical cause to hope.
But all these intervenors continue to miss the point. The fate of the child is not open to ruling; Charlie’s genetic disorder remains his death sentence. There is no question of whether or not to discontinue the infant’s life support—that will and must be done—nor is this a matter of medical resources or “death panels.” In fact, it’s the remarkable care of Britain’s socialized health care system that has enabled Charlie’s survival to this point, and at no cost to his parents. Spending millions on private, experimental therapy will neither slow nor reverse this painfully terminal situation.
This is the fundamental, brutal truth at the heart of this case. And while Charlie’s parents believe themselves sincere in their claims—“We’re not doing this for us. He’s our son. We want what’s best for him. If he is still fighting, we are still fighting”—the fact remains that they’re not actually fighting in the child’s interest. The pain of losing their son is being prioritized over Charlie’s own sustained agony. Further, Charlie isn’t “fighting”: He’s dying. He’s not engaged in this battle. For most observers, these are difficult notions to consider; for those intimately involved, they’re impossible to admit to.
By and large, society’s grasp of death and understanding of illness is selective and flawed. Disease is presented as something to be valiantly fought against as opposed to professionally treated; when people die, they’re said to have “lost the battle,” suggesting failure on the part of the individual for circumstances well beyond their ability to influence. Medicine and doctors treat disease as best they can, but not every illness can be remedied or managed—that’s not failure, that’s nature. The need to believe one can assume control and triumph over adversity, no matter the circumstance, stems from an unwillingness to accept that, more often than not, stories of medical hardship don’t conclude in straightforward, tidy, or even satisfactory fashion. The widespread, fierce denial of the inevitable outcome for Charlie is the social issue worthy of attention in the Gard case.
Medical misfortune and dying—and the hard truths of their realities—are realities I know well. There have been two distinct periods of my own life where I endured a sustained, tortuous march toward death. The first, caused by a should-have-been manageable, inherited disease which went undiagnosed and untreated, resulting in the widespread damage and complete shutdown of a major life-sustaining organ, the intestine; the second, after proper diagnosis and years of intensive treatments and surgeries, a rare post-operative complication resulted in catastrophic, multi-organ failure, and further damage to what remained of the intestine.
It’s the second period of being alert and aware in an imminently dying body that was most physically excruciating and emotionally traumatic. There’s the “air hunger,” or chronic sensation of suffocation, which compounds the already intense state of anxiety and what’s known as terminal agitation; in addition to frightening hallucinations and intense nightmares, this second experience was also intolerably, relentlessly painful.
Every day during this period, I’d ask my doctors if I was going to die, and each horrified query was met with some form of this honest, if unsatisfactory answer: “We’re taking good care of you.” Though lacking certainty themselves, my family quietly prepared for the worst. They chose to control what they could while maintaining hope, but granted that—like before—they ultimately had no sway over my fate. There were no end-of-life discussions directly with me because everyone knew clearly that I did not want to die, and at the time, I was unable to cope with the prospect enough to properly discuss it.
I can’t say why I’ve survived impending death—twice—but I do know I cannot take credit. It remains my own medical team, and chance, that saw me though. Were my diagnosis undeniably terminal and prognosis clear, palliative care would have been the route to follow. Though I’d have been devastated, that certainty would have forced my hand on many things—including facing my mortality. Rather than cowering in death’s shadow, perhaps I’d have danced in it.
There is undeniable—though unavoidable—harm in learning that a prognosis is fatal and nothing more can be done. But that finality, however devastating in the near term, offers both patient and family some degree of control over the remaining days. It provides a meaningful window for final goodbyes or final adventures, and allows for an uninterrupted focus on quality time. These moments, down the road, are what help those bereaved find their way through the sorrow.
This long-term benefit is lost on those who, desperate to bypass immediate grief, are seduced by false hope and empty promise. In chasing what they believe to be a miracle cure, patients are robbed of time as their families are robbed financially. Those who suggest there is “nothing to lose” in seeking “alternative” treatments are not allowing themselves to see the intangible, irreplaceable things that remain, all of which they forfeit to follow a mirage. Yates and Gard are both victims of this dreadful, depressingly common, trap.
Of all those claiming to be fighting on Charlie’s behalf, it’s those who’ve been demonized—his medical caregivers, and the British courts—who’ve offered the selfless, ethical, unwavering commitment to the child. The medical fight for Charlie’s right to die is an extension of the life-sustaining treatment provided to this point.
End-of-life support is an under-appreciated element of health care; to know the excruciating experience of dying-of-illness firsthand is to appreciate the importance of preventing that sort of drawn-out agony whenever possible.