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The Charlie Gard story reveals what we won’t accept about medicine

Amid the crass politicization and the cruel false hope around the Charlie Gard case is this truth: We, as a society, refuse to grasp death


 
The parents of critically ill baby Charlie Gard, Connie Yates and Chris Gard, pose for the media with a petition, outside Great Ormond Street Hospital, in central London, Britain July 9, 2017. The parents want their son, who has a form of mitochondrial disease, to be able to travel to receive further treatment, after losing a long legal battle to give him experimental therapy in the United States. (Peter Nicholls/Reuters)

The parents of critically ill baby Charlie Gard, Connie Yates and Chris Gard, pose for the media with a petition, outside Great Ormond Street Hospital, in central London, Britain July 9, 2017. The parents want their son, who has a form of mitochondrial disease, to be able to travel to receive further treatment, after losing a long legal battle to give him experimental therapy in the United States. (Peter Nicholls/Reuters)

Update: Charlie Gard died July 28, 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.

A woman holds the hand of her mother who is dying from cancer during her final hours at a palliative care hospital in Winnipeg July 24, 2010. Picture taken July 24, 2010. (Shaun Best / Reuters)

A woman holds the hand of her mother who is dying from cancer during her final hours at a palliative care hospital in Winnipeg July 24, 2010. Picture taken July 24, 2010. (Shaun Best / Reuters)

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.


 

The Charlie Gard story reveals what we won’t accept about medicine

  1. Oh baloney….if we actually cared, we’d cure it.

    1 in 25 babies is born with a genetic birth defect….over 3 million babies a year die around the world.

    And cancer alone….in everyone….is a major industry. Assembly line medicine.

    • what a vile comment. I guess it should come as no surprise.

    • Emily, I usually appreciate your comments but this one is beyond stupid. Defective mitochondrial function does not have a cure. We need to distinguish between disease which medicine seeks to treat/cure, and conditions which we are borne with, some of which can be managed, and some of which cannot be. As far as I am concerned, “playing God” is keeping someone alive against the odds, rather than allowing death to occur naturally.

        • sure Em. There are no issues to discuss and resolve in gene editing. It’s everyone just dragging their feet. More obnoxious than usually you are my dear.

          • There ARE no issues to discuss. We need to get on with it.

    • https://www.washingtonpost.com/national/health-science/scientists-can-tweak-dna-but-should-they/2015/08/03/23589654-0481-11e5-8bda-c7b4e9a8f7ac_story.html?utm_term=.a3963fbe746c

      Of course they are working on developing safe gene therapy in an effort to reduce genetic birth defects. Where do you think the researcher from the US (the expert the family wanted Charlie to see) acquired his expertise? In the meantime, genetic testing is available for those at risk to pass on defects to their fetuses.

      • No actually they aren’t.

        This could have been done years ago, but an entire industry…several actually …. hasve developed around ‘treating’ rather than curing.

        • If what you are suggesting is true, then explain the great strides made in developing surgeries that repair illnesses such as heart defectss in utero. Those advancements are not directed at treatment but providing cures. Besides attempting to develop strategies for altering genes while fetus are in Utero, researchers continue to map the DNA links to various illnesses and have successfully mapped the DNA link to devastating mental illnesses such as schizophrenia. This increased understanding of how illnesses originate will lead to cures. Of course “entire industries” develop around treating illness. One must keep those who are inflicted alive and comfortable until cures are found. Just because we want inflicted people to have a decent quality of life and increased longevity (think HIV medication) doesn’t mean we aren’t looking to eradicate illnesses (think HIV vaccine development.) It is not one or the other and before you spew conspiracy theories for developing treatments, look at groups like the Bill and Melinda Gates Foundation. They are attempting to eradicate HIV and Malaria….not treat. They also are attempting to vaccinate the entire developing world, which is an illness eradication program. Canada developed a vaccine for Ebola…not a treatment….but a means to potentially eradicate it.

  2. What a power trip on this poor little baby boy. Held hostage for over three months now. C’mon it’s now about the hospital and medicine being on trial, media disciples to the contrary. The American expert thinks Charlie is not in pain and the hospital has not pointed to anything, such as an elevated heart rate. Let him go and have his chance, then, if there is no significant improvement, let him go. Let’s not forget that the stories on The Great Ormond Hosp. (GOSH) are starting to pile up in the British Press, not because it’s a bad hospital, but because it is a medical institution, and runs on opinions coupled with science apparently 15-22% of the time.

    That’s right, the British journal Science estimates that 15-22% of medical practice is based on science. The rest is social practice, where British medical types have mastered the courts, beat down medical malpractice and even fooled some of the media, even moreso than here, in nearly-as-foolish Canada.

    True, Charlie may have no chance, but even the lowest cards give him 10%. He must have it.

    • Charlie has a genetic disease. There is no cure. They are simply piling up huge bills and publicity warring over this

      The pope, the president, a new citizenship ……

      Meanwhile there are millions of other kids just like him that you’ll never hear of

    • It is so evident but they prefer to decide to switch off a patient whose rare disease they do not know. If Charlie has a chance doctors don’t mind. It is the result of a healthcare which doesn’t respect neither parents will nor patient autonomy. Is not the first public scandal NHS has to face.

  3. As a medical approach, it is OK if we had the probes of a dramatic brain damage. This rare disease as said the known (not I) specialist who came from the US can give the idea of a brain damage for inexperienced in this specific mitochondrial disease, doctors couldn’t be convinced by the specialist but Ormond doctors can’t convince anybody. As Ashya King case NHSEngland doctors are the judge and the party concerned. 6 months and the poor child not only grew he is living. Switch off when there is a possibility facing the parents’ will is unethical, is euthanasia. You and doctors don’t give any medical ethical reason because you can’t give any proof facing the US mitochondrial specialist. In my opinion, you only are giving reasons that are questioned by specialists You and Ormond doctors and the judge don’t know, please accept this reality. What is your opinion that Government appointed an activist of euthanasia as Charlie Gard’ lawyer? No more comments
    .

  4. I’m perplexed as to why this family should have to fight the courts over this.
    Neither do I understand either why this is being framed as a political fight between the right and left.
    This is a human issue. If these people want to try one last thing in the hope that their son will live, let them.
    Like Terri Schiavo’s case — Millions being spent in courts to thwart the efforts to keep someone alive. If the family wants to take care of this person, why work so hard to stop them? Move on!

    • The problem is not medical, it is philosophical. In human terms, how do we define “alive”.

    • Did you not read the article? It’s because sometimes, in the fight to avoid death that is inevitable, you prolong or increase the suffering of the patient. It’s not about what the parents want; their desires should always be secondary to the patient’s best interests. The conflict comes when the patient cannot speak for themselves.

    • because the family wants someone else to pay for useless treatments.

  5. Get your facts straight McLeans, the experimental therapy would have been effective according to doctor I and the only reason it was no longer effective was because Charlie’s condition had deteriorated during the long court battle that the British courts and government fought to prevent this sick child from receiving the medical treatment he needed. I believe Charlie’s parents were sincere and fought for his best interests, which is more than I can say for certain journalists.

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