The Charlie Gard Quandary: Six Thoughts

While old news at this point, the case of Charlie Gard, who was only months old and suffering from mitochondrial DNA depletion syndrome (a terminal illness) at his death, has been a stirring one.

To summarize the whole scenario, the Great Ormond Street Hospital in London, where the child had been receiving care, made the final recommendation that life support for Charlie Gard be removed with the argument being that further treatment is futile, incapable of saving the child ultimately and would only prolong suffering. Charlie Gard should die with dignity, the hospital seemed to insist. Since then, the matter had been appealed by the parents at the European Court of Human Rights (initially denied) with the response from the hospital and European court in agreement being that it is in the best interests of the child to take him to palliative care. The hope of the parents, in appealing, was to have the child taken to the US to receive a treatment that may have been able to treat or cure the child. Charlie Gard had since been given more time before having life support removed and a high court hearing, at the request of the hospital, took place to decide the fate of the child since there was offered new evidence suggesting the US treatment had better-than-originally-thought chances of success. On July 19, CNN reported that the US Congressional committee voted near-unanimously to amend US law to give Charlie Gard, and his parents, permanent residency. If the amendment were to pass at every stage, including the Senate, Gard would’ve been able to receive treatment in the US without permission from Europe.

In the end, to many a broken heart, the parents released a statement, on July 24, delivering what would turn out to be a final decision regarding the future of their son:

As Charlie’s devoted and loving parents, we have decided that it is no longer in Charlie’s best interests to pursue treatment and we will let our son go and be with the angels.

Charlie Gard died on July 28.

As I’ve seen this whole drama play out, I’ve gathered six thoughts of my own.

1. The Situation’s Volatility

Surely, this was a situation where no one was bound to rise victorious. The boy was seemingly bound to die. The parents, having fought so hard for their child’s every chance at survival, would eventually find themselves in mourning. The hospital will have a blotted image. The European court will receive scrutiny. The pro-lifers will have protested in vain. And pro-choicers will stand in ranks with those outraged observers.

The hospital has made its case that it was being reasonable and objective. Regardless of its intentions, though, many have criticized the supremacy of its voice, decisionally, over that of the parents. Pro-lifers and the pro-choice camp are actually coming together on this, it seems. When pro-lifers and pro-choicers are telling you that you’ve made a mistake, you must know you have.

In all of this, the greatest of tragedies remains that this young kid, not having reached his first birthday, must die to an illness we can’t efficaciously treat.

2. Death: Failure to Grasp or Failure to Celebrate?

Alheli Piczo, of Maclean’s magazine in Canada, published an article entitled “The Charlie Gard story reveals what we won’t accept about medicine”. The article is largely pessimistic of the parents’ efforts and critical of the vain piety of pro-life voices in this matter. He insists:

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.

He next writes:

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.

In review, I take issue with the idea that the stingy pro-life response was reflexive of a universal failure to grasp the fragility of life and the iminent reality of death. I don’t deny that many inside this camp have the cut-and-dry, easy view of death, medicine and even ethics shared by six-year-olds. There are moral grey areas in life where answers aren’t easy and have difficult-to-grasp implications, especially for those in the middle of the issue. It’s easy to look from the outer perimeter to the players at center stage and critique. But has the reality of death, along with all of its psychological ramifications for the survivors, been made plain to those critics of the hospital’s and European court’s decision (me, in particular)? Probably.

I know from personal experience the multi-layered feeling of waiting in vain for a miracle. I know what it’s like to soldier on, hope, press forward, and be ultimately dissapointed. Death is not foreign to me.

I get it that doctors and professionals have a job to do and it’s difficult, complex and often has uncomfortable realities attached. And I know that sometimes the best result is a bad one. Or an undesirable one. What this means, in this case, is that the hospital saw no possible means of prolonging life, reducing Charlie Gard’s pain, and curing the disease that was reponsible for all of this. However, what undercuts this understanding is that there was a treatment out there that had a possibility of success, however unlikely.

My primary concern here as a commentator from a pro-life perspective is whether life is being valued such that the preservation of it, though pain be prolonged, is the number one priority. Obviously, by the very statements of the hospital, this isn’t the case. This isn’t their priority. This speaks to the deep chasm between my worldview and the one shared by Great Ormond Street Hospital.

3. The Parents

In all likelihood, the parents have taken the correct approach in this situation from their perspective, if what matters was their intent to save the precious life. It may also be equally appropriate that they eventually decided to focus on the end-of-life care of their son.

It is easy for us, on the right or the left, pro-lifers or pro-choicers, capitalists or socialists, to view this case from afar and pragmatically use Charlie Gard as an argument, as cannon-fodder, to push forward our respective agendas and opinions. And it is easy to criticize the parents. But for Mr. Gard and Ms. Yates, little Charlie is neither an argument or a statistic to toss about in flustered fits of political war-making. Charlie is a person. A person worth the millions of raised dollars to save. Their most prized possession. Their child. This simple and obvious fact should at least compel us to step back, for a moment, to humbly re-consider pointing any finger.

It is right that the parents be the ones to have made the final decision. The National Review’s Charles Krauthammer put it this way:

The sovereignty of loved ones must be the overriding principle that guides all such decisions. We have no other way. The irreducible truth is that these conundrums have no definitive answer. We thus necessarily fall back on family, or to put it more sentimentally, on love.

What is best for the child? The best guide is a loving parent. A parent’s motive is the most pure.

4. The Hospital

The Great Ormond Street Hospital made an attempt to produce the best possible results, in their view, of an unsolvable medical case. But the resultant media attention garnered from Gard’s parents’ outrage seemed to have proven a huge deficiency in their approach.

And here, as I’ve seen many point out on Facebook and on sites for conservative political commentary, we see the issue of so-called Big Government and socialized medical institutions. The fear seems to be that because resources are being consolidated and redistributed by the government, these personal medical decisions aren’t being passed to the individual, but to the institution. The individual hasn’t a say.

Of course, the issue isn’t primarily how large of role the government should have in personal affairs, the issue is the ethical question. But, in moral grey areas like this, special attention should be paid to the political questions. Because, I think, when answers are unclear, motives and means should be checked scrupulously.

A justified skeptical worry, I think, is that the hospital has a concern to conserve otherwise “wasted” medical resources. Isn’t this the point of resource redistribution? The hospital has some decisional authority to allocate resources according to what they deem most efficient. Perhaps this is cynicism on my part. Perhaps I haven’t done enough research. But I have hard time dismissing a potential ulterior motive.

Nevertheless, these doctors and experts I’m unconvinced are evil, pencil-pushing pragmatists. I believe they’re driven by professional integrity and doing the job to the best of their abilities. But perhaps this isn’t enough. We don’t need just professional, earnest decision-making. We need right decision-making. The means must be appropriate. And here, I think, they botched it.

5. Euthanasia and its Innate Complexity

Was this a case of Euthanasia? If the intent was to foreshorten the life, then yes. Certainly, the hospital’s initial recommendation to pull the life support (which didnt follow through) fits this criterion. Did the parents finally pursue Euthanasia? No. Palliative care aims at reducing suffering in life’s final moments, not ending life intentionally.

This situation reveals how truly complex the tension is between the desire to prolong life and to relieve suffering. While I believe there is a correct answer to the ethical question of Euthanasia, the answer in the real world of pain is never easy or simple. Compassion is a requisite of appropriate criticism.

6. Euthanasia and its Simple Evil

So what is the answer to the question? Is Euthanasia good or is it evil? If good, are there times where it’s wrong? If bad, are there times where it’s ethically defensible?

The compassionate response abides in truth as well as pays specific attention to the inner turmoil of the audience. I’m not sure an adequate response can be given in brief.

Where I’ll end is with this: On moral grounds, the preservation of life is the priority. But this will only connect with those who view life as good ontologically and that the good of life is not contingent upon circumstance. The divide is one of the key points of contention within the general topic of human rights. I hold that human rights don’t exist, logically, unless we hold to a view of absolute, intrinsic human worth. Otherwise, it’s a vacuous dream.

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