Comment Of The Day (1): “Observations On Britain’s Charlie Gard Ethics Fiasco”

I thought that the Charlie Gard story would stimulate some excellent thoughts on ethics and public policy from readers, and for once I was right. This is the first of two superb Comments of the Day it generated, and there were several others as well.

Here is Ryan Harkins’ Comment Of The Day on the post,  “Observations On Britain’s Charlie Gard Ethics Fiasco.”

The idea of the state telling me I could not seek medical aid for my child when I had both the money to pay for it and a provider willing to give me the services is terrifying. My sixteen-month-old daughter has been receiving the majority of her sustenance through a feeding tube for the past six months. Prior to that, we had been struggling to get her to eat enough calories so that she would gain just an ounce or two, only to find that weight gain vanish when she caught a cold or a stomach bug. Granted, the gastroparesis she suffers is not a severe condition, but without the feeding tube she would risk starving. The thought that the state might step in, tell me that they not only would not pay for my daughter’s tube and care any more, but also expressly forbid me from feeding my daughter through the tube, makes me shake uncontrollably. If I have to fight for my daughter without the state’s help, fine by me. But for the state to forbid me from fighting for my daughter? That is unconscionable.

However, at this time, I don’t have to face that issue. I live in a place and a time when I don’t have to contend with general threat, and my daughter’s condition is not terminal and readily treatable. I hope that my child-rearing and my fear for my daughter helps me to have empathy for the parents of Charlie Gard. I also hope that I can step back away from the emotional turmoil this issue raises and try to understand what is happening here.

The principle dilemma in the case of this poor baby boy lies in the fundamental tension between the fact that human dignity demands we do fight for life, while at the same time we know that we will all ultimately die. Because human life bears an intrinsic dignity, its wrong to deprive a human being of what it needs to survive. Because all humans ultimately die, it can become, through the use of extreme or unethical means, against human dignity to fight against death when death is inevitable.

Why would it be wrong, in some circumstances, to keep fighting against death? The most clear-cut examples are when the means of preserving life are unethical. Bathing in the blood of virgins, selling one’s soul to the devil, killing an innocent to harvest his organs, transferring one’s consciousness into the unwilling body of another — all these (fantastical as some of them are) represent tactics to extend life that obviously violate ethical principles.

What about less obvious examples? Let’s consider a man in a coma. His state is persistent, perhaps even vegetative, but his body is capable of processing food and drink, although he is incapable of eating and drinking orally. A feeding tube could provide him with all the nourishment he needs, and he could be kept alive for years in such a fashion. To stop feeding him through the tube would be to deliberately deprive him of sustenance he needs to survive, and thus would be unethical. Death is not inevitable in this case, except in the most sweeping sense.

In times past, a feeding tube would not have been possible, or if possible, not recommended because of infection, and thus this would not have been a serious alternative. Absent any means of delivering food to the man in the coma, no one could be faulted for not providing food. And if trying to use a feeding tube would actually kill him quicker, or have negligible effect, then the extreme measure of using a feeding tube would not be ethical. However, since we are at time with the technology that makes the use of a feeding tube fairly easy and safe, we no longer have that excuse to deprive a person of nutrients.

What about a slightly different case, when the man in the coma can no longer process foods even through a feeding tube? Then providing food actually causes harm without any gain. Perhaps nutrients could be provided through an IV, but one would be justified, and perhaps is even obligated, to stop providing food through the feeding tube.

Now, the most challenging cases are when a person is terminally ill, but there are procedures that exist that can extend life. To what extent are we obligated to provide care? It depends on the nature of the treatment, the cost of the treatment, and the effects of the treatment. A person is fully justified in accepting that death cannot be stopped and let the terminal illness run its course. A person is not justified in taking steps to deliberately end that life, but is justified in procuring palliative care that eases the pain of the dying, even if it hastens death. But one is not obliged to pay for or undergo an extensive, dangerous, expensive procedure that will not provide a cure, but only a short extension of life.

It should be clear, though, that just because one is not obliged to pay for or undergo extreme care, it does not follow that one is obliged to never pay for or undergo such procedures. If a person has the money and desire to attempt such care, and that care is available, that person should not be denied.

Is there any instance, then, when that person could be denied that extraordinary care? Again, we are assuming that the person can pay for it and the care is available, so we aren’t discussing an instance in which the terminally ill patient is displacing someone else’s care.

I personally cannot think of an instance in which we could rightly deny that care. What I do know is that, in Catholic theology, death does not mark the end of the existence of a person. The soul survives death, and the soul will be reunited with the body at the Resurrection. There is danger in pursuing treatments at any cost, and that danger lies in the denial of the afterlife. That has consequences for one’s eternal soul.

Regarding Jack’s point #7, I personally think it typifies where our Bishops are in this day in age — unwilling to speak the truth directly, and using language deliberately vague enough that hopefully no one is offended. And again, our current Pope has the tendency to muddle matters, not clarify them. The Bishops affirm the Catholic stance that one never acts to cause death, but they also affirm that there is no obligation to pursue extraordinary care. The problem is, this isn’t the problem at heart. The problem is that the parents do desire to pursue that care, they have the money, and (if I understand correctly) the facility willing to provide that care. This then invokes another Catholic principle, which is that under normal circumstances, the parents are the primary caregivers, policymakers, and decision-makers for their children. Nothing about this case suggests it is anything but normal circumstances. The Church’s traditions side with the parents, even if the Bishops don’t have the chutzpah to state that explicitly.

What they do allude to is that the parents do need support. This support needs to come in a variety ways, such as the lack of sensationalizing their tragedy, the lack of lawsuits that will focus everyone away from the family and onto all the political squabbles (such as whether the USA should be a single-payer system) that are tangential to the family. This support also should include the counseling about human mortality, the hope of Heaven, and the Resurrection. It should also provide counseling to the family that their son’s condition is not their fault, and that were they to choose not to seek this overseas procedure that has almost no chance of success, they are not terrible parents, nor are they committing a terrible crime against their child. It is in the context that I think Bishops write their statement,

“Likewise, the wishes of parents must heard and respected, but they too must be helped to understand the unique difficulty of their situation and not be left to face their painful decisions alone.”

This is not stating that the parents must be conformed to the state, but that they must be well-informed and aided. Most importantly, they did say that the parents must be heard and respected. If the bishops are pusillanimous in not explicitly stating that the parents have the right to determine the fate of little Charlie, they still exist in the context of Church tradition, placing parents as the primary authority over their children.

The most worrisome aspect about this entire case is what I see as Western society’s growing attempt to minimize parental involvement in the lives of their children. If it is not the continued attempt cut parental influence out of child-rearing, then it must be the fear of the state that this might spark a mass exodus away from Great Britain’s health care system in favor of what is offered in the United States. Either way, I think it is obvious that this case has struck a political nerve because such a terrible decision could not be made absent extreme ideology that finds the private raising of funds for an expensive medical treatment somehow reprehensible.

I will be praying for little Charlie, too.


5 thoughts on “Comment Of The Day (1): “Observations On Britain’s Charlie Gard Ethics Fiasco”

  1. Great comment. I thought Jack’s interpretation of the Catholic Church’s statement was a bit heavy handed. The Bishops’ position in this situation is not out of line with the Church’s stance on end of life theology. Catholic tradition has been that respect for human life from conception until death
    is a fundamental commitment of the Catholic Church, and human life is sacred. We need to do what is reasonable and what is beneficial to protect it. Every person has an inherent and inalienable dignity or worth by the very fact that all persons are created in the image and likeness of God, redeemed by Christ, and destined for eternal life with God.

    Even if death is thought imminent, the ordinary care owed to a sick person cannot be legitimately interrupted. The use of painkillers to alleviate the sufferings of the dying, even at the risk of shortening their days, can be morally in conformity with human dignity if death is not willed as either an end or a means, but only foreseen and tolerated as inevitable. Palliative care is a special form of disinterested charity. As such it should be encouraged. (Catechism of the Catholic Chruch 2276-2279).


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