The battlelines have been drawn, arguments made, and today the drama reached its climax. Today, the parents of Charlie Gard, the infant with a fatal mitochondrial depletion syndrome, made the difficult decision to no longer pursue treatment options but to remove their son from child support.
For those not familiar with the case, over the past several months the parents of Charlie have been embroiled in a legal battle with the hospital over whether or not they could pursue an experimental treatment for their son in the U.S. (they live in the U.K.). Although parents typically have the right to consent to treatment and make medical decisions for their children, the hospital and the state can step in when they feel the parents' decisions place the child at more risk of harm than good. Such was the case here. The disease Charlie has is fatal. In fact, the only reason Charlie is alive is because he is being sustained by life support. There is currently no effective treatment. The treatment that Charlie's parents wanted to try is "experimental," meaning it has no guaranteed success, and the risks are still largely unknown. In fact, this particular treatment has never been used with Charlie's form of the disease.
Given these facts, the doctors at the hospital believed the most humane action to take was to remove Charlie from life support, rather than subject him to an experimental procedure that could risk causing more harm with little chance of success and rather than prolonging his pain and suffering due to the disease. Thus, the hospital declined to allow the parents to take Charlie to America for this treatment. The case then was taken up in the courts, ending with the European Court of Human Rights siding with the hospital at the end of June, concluding that "it was likely that Charlie would suffer significant harm if his present suffering was prolonged without any realistic prospect of improvement, and the experimental therapy would be of no effective benefit."
This whole situation has reignited the debates over euthanasia, life support, and death with dignity. This debate can get downright nasty at times. Numerous commentators have ripped into the hospital for being inhumane. Conservative political thinkers have held this scenario up as a perfect example of the evils of big government, single-payer health systems, socialism, etc. There have even been death threats made against doctors and nurses at the treating hospital.
Most of the criticism of the hospital and the courts tends to come from conservative individuals who also tend to identify as "pro-life." And, the logic makes sense. If one is "pro-life," then naturally it should make sense to advocate for life at all costs. One cannot put a price tag on life, and so we should fight to keep people alive as long as possible and to take any possible option we can to save lives.
Cases like Charlie's often also get tossed into the "death with dignity" and euthanasia debates. Most conservative Christians would denounce euthanasia as an unethical medical practice as it attempts to "play God" by taking another person's life.
However, when I approach Charlie's case, I have two main thoughts. First, I think it's best if we all take a breath and calm down before speaking. I say that because situations like this are amazingly complex and fraught with all kinds of questions lacking clear cut answers.
On the one hand, I do think that Charlie's parents probably should have been allowed to pursue a treatment they thought might work. On the other hand, I also understand why the hospital wanted to oppose this. With no guarantee of success and a high risk of harm, allowing such a decision could almost be seen as a kind of child abuse.
When we enter this debate, we need to do so with humility and generosity towards the other side. I've seen various commentators repeatedly things like "the doctors have murdered the baby" or "the State wants the power to kill patients." But, we must remember that these are false caricatures. No one wanted Charlie to die. No one took pleasure in that decision. It is inappropriate to label the heartbreaking decisions of doctors who seek to save lives as "murder," let alone to threaten those doctors with actual murder.
But secondly, I also can't help but think of a question that has kept running through my mind throughout this whole ordeal--"When does our desire to save a life actually become a denial of death?"
Opposition to removing Charlie's life support has often been tagged as a "pro-life" position, but is it really? For one, I see this matter as very different from that of euthanasia. Typically, when we talk about euthanasia, we are talking about ending a person's life early to prevent the pain and suffering that will accompany a certain death. As a pro-life individual, I cannot get behind the number of "death with dignity" bills that have been introduced in recent years allowing doctor assisted suicide. Such an approach seems like "playing God" and seems to lapse too quickly into escapism and hopelessness.
In contrast, cases like Charlie's are different in that Charlie is already dead. That might seem harsh, but it is true. If the only reason a person is "alive" is because they are hooked up to machines that breathe for you and feed you and keep your brain and heart going, is that really living? Removing one's life support to allow a person to die naturally is a far cry from actively taking a drug to end one's life before natural causes have their way.
Such a distinction causes me to ponder if some of our "pro-life" shouting "on behalf of" Charlie is actually a refusal to accept death. Are we actually just afraid to confront the reality of death? The truth is Charlie will die, whether now or in 60 years. We all die. And, even sadder, many babies are born with problems that mean they will die before their first birthday. That is the reality of our broken world.
Now certainly, we should utilize medicine to minimize suffering and to find cures to reduce these deaths, but we also need to ask the question, "How far is too far?" At what point do we choose to accept the inevitable and surrender to the cold reality of death? Sure, we can endlessly grasp at more and more futile options to desperately save a life, but this does not echo of the Christian hope either. In some ways, running after every last possible treatment can also seem like "playing God" by trying to extend life when it's not reasonable to do so or when life has already practically ended.
Think about this same issue at the other end of the lifespan. A few years ago, my wife's grandmother died of cancer. She had tried various treatments for years with limited success. Some treatments not only made her incredibly sick, but even almost killed her. Toward the end of her life, she was given some newer, more experimental options, and she had to face this same question: "Do I try these with no guarantee of success and a high risk of more suffering, or do I commit myself to God's hands and enjoy this last bit of time I have with my friends and family?"
Now, there are some differences between an elderly person facing this choice and people like Charlie's parents. One has enjoyed a full, long life while the other hasn't. But we should consider the similarities. Both must wrestle with the inevitability of death.
So, does the pro-life position simply try to extend biological life, or is it something more? Isn't it also concerned about quality of life and about trusting in the God of life?
Think about what the situation would had looked like if Charlie's parents had faced the tragic reality that their son was going to die. What would it have looked like if they had thanked God for the chance to see their son, grieved over the loss of their son, and entrusted their son into God's hands?
What would it look like for the people of God to surround a family like this with a resurrection hope--a hope that says one day this evil will be made right? Yes, we grieve today that Charlie will never have the chance to run and play, but we hold onto the hope that our God raises the dead and that one day this child will be healthy and will finally have the chance to run and play on his own two legs.
None of this is to blame Charlie's parents. They were doing what they felt best in that situation. And that's the point. These are incredibly messy situations with no easy answers. We may never fully know what the correct action should have been. After all, how can we possibly answer the question of when to say goodbye to a loved one? Is there ever a good time to make that decision? Whether it is knowing when to stop futile treatments and seek palliative care for yourself, or deciding when to pull life support from a loved one, this is no easy decision.
So perhaps we as Christians should use moments like these to be people of grace and forgiveness, of patience and understanding. Rather than using it to bolster a political platform, perhaps we should use the time to be reminded of our own frailty, to grieve the loss of precious life, and to confront our our fears of death.
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