What some pro-lifers have overlooked in the case of Charlie Gard

 (CNS photo/family handout, courtesy Featureworld) 

The case of 15-month-old Charlie Gard is undeniably tragic. His parent’s plea to maintain his life support in order to take him to the United States to receive experimental treatment was rejected last week by the European Court of Human Rights. The case has galvanized pro-life activists and journalists who see the court’s decision as a triumph of the culture of death, bureaucratic and judicial indifference, and heartless health care rationing. But despite their good intentions, many observers appear to have misapplied church teaching in their ethical analysis of Charlie Gard’s case and may have fallen into the trap of vitalism: the prioritization of the prolongation of human life at all costs, regardless of pain or suffering.

Regardless of whether or not you think the courts should have the right to make this decision, the proper application of Catholic moral reasoning could be seen to ultimately support the E.C.H.R.’s final decision to withdraw life support.

Advertisement

In my work as a medical ethicist and clinical ethics consultant, I am frequently asked to help identify the ethically optimal solution as people approach death. In my profession it is often said that good medical facts precede good ethics. Here are the facts of the Gard family’s case.

Charlie Gard and his parents.
Charlie Gard and his parents.

It is undisputed that Charlie Gard suffers from a mitochondrial disorder that has led to brain damage, frequent seizures, progressive muscle wasting and respiratory failure (loss of the ability to breathe independently), necessitating mechanical ventilation for his survival. There is also a general consensus that life in this state is painful for Charlie and that he is unable to comprehend or meaningfully respond to this pain. Finally, Charlie’s parents and advocates have claimed that there is a potential treatment available in the United States that may ameliorate his otherwise irreversible and terminal condition.

Taking these facts into consideration, church teaching can then be applied to Charlie Gard’s case. In his encyclical “Evangelium Vitae,” Pope John Paul II states that medical treatments may be classified as either ordinary or extraordinary. Ordinary treatments are those which, in the eyes of the patient or their surrogate decision maker, the expected benefits outweigh the anticipated risks and are generally considered morally obligatory. Extraordinary treatments are those in which, in the eyes of the patient or their surrogate, it is uncertain if the benefits outweigh the risks and burdens or possible that the risks and burdens will outweigh the benefits. These treatments are considered morally optional.

In grave situations at the end of life, Catholic ethicists recognize that most treatments are considered extraordinary. Patients and their surrogates may, and often do, justifiably choose not to pursue further toxic chemotherapy or painful cardiopulmonary resuscitation as they come closer to death.

Society often grants wide latitude to parents making choices in the best interest of their children, asking them to weigh potential treatments and goals of care based on their perception of their child’s quality of life. Out of respect for patient autonomy, physicians generally follow the informed choices of their patients or their surrogates, even if they would not make the same choice for themselves or their loved ones.

To this point, readers might reasonably conclude that if Charlie’s mechanical ventilation helps maintain him so that either he experiences an acceptable quality of life in the eyes of his parents or if his suffering is tolerable on a temporary basis until he is able to access a potentially beneficial experimental treatment, then his parents’ wish to keep him alive ought to be respected.

There are, however, medical treatments that fall outside of the ordinary and extraordinary frameworks. One category includes those treatments that are termed futile or, more accurately, “nonbeneficial,” and it has been an increasing focus of both secular and Catholic medical ethics. Physicians are not obligated to offer treatments that, in their medical expertise, have no reasonable chance of success or in which the harms so far exceed the potential benefits that it becomes inhumane to provide them. To do so violates the ancient maxim to “first, do no harm.”

The framework surrounding nonbeneficial treatment appears to have appropriately guided the reasoning of the British High Court in its ruling of the case before it went to the E.C.H.R. on appeal. The British High Court thoroughly consulted with experts in Britain and Spain, as well as the doctor offering the potential treatment in the United States. It was clear that the treatment had never been tried in a patient with the specific mitochondrial defect that Charlie Gard has. There was no prospect it would change the underlying structural damage that has already occurred to his brain and no clear evidence that the therapy would even be able to cross the blood-brain barrier. Further, the experimental treatment would expose Charlie to potentially unanticipated risks that are impossible to quantify.

After collaborating with the treatment team in Britain, the physician in the United States who agreed to treat Charlie acknowledged the remote chance of any benefit. The court noted that the ability to pay was not in question, as the family has raised sufficient funds from generous donors to pay for the related costs. Rather, what guided the court’s decision was solely consideration for Charlie’s best interest.

When life is valued so highly relative to other goods, its pursuit becomes detrimental.

The Bishops’ Conference for England and Wales, the Pontifical Academy for Life and Pope Francis have not contradicted the E.C.H.R.’s decision to deny Charlie prolonged life support in order to receive experimental treatment. While expressing sympathy and prayerful support for the Gard family, their public statements have acknowledged that at times medicine is powerless to cure terminal illness. None of these church leaders insisted on continuing artificial life support at all costs, nor did they argue against the proper role of the state to either protect the best interests of children or to resolve disputes between patients, their families and their physicians.

The tragic case of Charlie Gard is one in which some well-intentioned members of the pro-life community reflexively leapt to the defense of the Gard family. In doing so, they unfortunately failed to recognize the nuances of Catholic teaching on end-of-life care. When life is valued so highly relative to other goods, its pursuit becomes detrimental. In effect, life itself becomes an idol.

Comments are automatically closed two weeks after an article's initial publication. See our comments policy for more.
Christine Mason
4 months 2 weeks ago

I found this article very informative. I understand better now the undertaking of the doctors and how they are attempting proceed, which, in and of itself is not outside acceptable Church teachings. I think what is perhaps not being considered though is the pain of the parents. I don't think these parents want their child to be in pain or to suffer. I also imagine that "pulling the plug" affords some aspect of culpability in the child's death or "giving up". That perhaps is what is most untenable for them and some of us pro-life onlookers.

Paul Cunningham
4 months 2 weeks ago

Thank you for this thoughtful and clear discussion of elements of this case. I particularly appreciate the explanation of the term vitalism. Sad all around. It's difficult to imagine what benefit would be derived from transporting Charlie across the Atlantic for a treatment that even the researchers feel is unlikely to offer benefit. I hope the parents are getting the support they need from a qualified palliative care team.

Henry George
4 months 2 weeks ago

Though well meaning, the very idea of giving the State or Hospitals the
absolute right to deny medical treatment that neither the Hospital or State has to pay for is beyond dangerous.

Charlie has parents.
They seem like loving and reasonable parents.
Why not trust them to do what they believe is the best for their child ?

Ted Goode
4 months 2 weeks ago

Life should always be valued so highly relative to other goods. Moral absolutes are just that. Relativism cannot abide absolutes and so we slide down the slippery slope that ends with "who are we to judge?'. Is this the same Faith that commands us to abhor capital punishment? Moral relativism is a crutch of Jesuitical sophistry that has allowed some, under the guise of compassion, to rationalize a range of inhuman and un-Christlike decisions.

Colin Donovan
4 months 2 weeks ago

I am sorry, you present an upside-down and backwards view of the sources of moral authority in this case, stating that "society often grants wide latitude to parents . . ." and "out of respect for patient autonomy, physicians generally follow the informed choices of their patients." While physicians have consciences, and indeed are not obliged to act against them as they follow their own medical judgment, it is entirely wrong to suggest that parents receive their authority to make decisions for their children from society, which can then "take away" what it has not given. They receive it from God, and barring extraordinary circumstances, as even the law provides, it should not be substituted.

Unfortunately, governments increasingly do, including in this country. The sense of a great many people around the world, only some of whom are likely "prolifers," is that there is no strong reason for the hospital or state to substitute for the parental judgment in this case - in fact little real grounds at all, except, perhaps, to sustain political authority over healthcare.

Maria Delaney
4 months 2 weeks ago

Firstly, Charlie is 11 months (born August 2016) not 15 months.

Secondly, I agree with the article. I think People have misinterpreted the Pope's solidarity with the parents. He, like the Italian hospital want to help the parents see the difficult position they are in and help with the end of life care.

What bothers me about this case is, doctors cannot judge the extent brain damage will have on a patient until the patient actually is conscious.

Also, what bothers me the most about this case is Charlie's parents have been denied at home or hospice palliative care. I firmly believe that hospice palliative care who better prepare the parents for their child's death.

One must also question why doctors delayed potential nucleoside treatment while Charlie's condition was a lot more promising.

ALFRED CHAVEZ
4 months 2 weeks ago

I wonder if the principle that Thomas Aquinas held to shouldn't be taken into account in this case: "The common good of the whole society is greater and better than the good of any particular person." No Jesuitical thinker he. :)

The thing is, the experimental treatment the baby's parents want to employ must be an expensive one and will take up the talent and time of medical resources that are desperately needed by those whose prognosis demonstrates a greater chance of success.

Miracles are always possible of course, but if one is to occur God will see to it regardless of what choices anyone on earth makes. Meanwhile God's will seems to be that He has reserved this child's soul for Himself. His will be done.

Sam K
4 months 2 weeks ago

Highly irrational: it's never been tried, so there's no evidence it would help, therefore we can't do it.

Patty Bennett
4 months 2 weeks ago

While the Church does not REQUIRE extraordinary means to preserve life, neither does the Church FORBID them. This is definitely a judgement call that requires the wisdom of Solomon. Remember too, that every successful therapy was at one time experimental.
While it has in this case, little hope of success, there is no reason to think that it would harm him. After all, he has already a VERY poor prognosis.
An unnecessary tragedy is that the "all-powerful" government assumes total control and usurps the authority that properly belongs to the parents, who ACTUALLY LOVE THE CHILD. Has the panel of judges even MET him?
Essentially the court is saying: "We have determined that it is in the child's 'best interest' to die. Parents are not PERMITTED to disobey our supreme control."
Remember the question: "WHO DECIDES?" This is VERY wrong.
And they said that "death panels" were imaginary!

John Walton
4 months 2 weeks ago

Our Lord designed probability and statistics before "you were in your mother's womb". HE would have searched for the one of his sheep, even if it were one of 60 million Englishmen in his flock. I am sorry doc, your argument smacks of godless utilitarianism.

RoseAnne Cleary
4 months 2 weeks ago

This is an informative article, covering much of what other media has omitted. However, as the grandmother of a brain-injured infant who was given the gift of genuine quality time at home with his parents and siblings, I do not understand why Charlie's parents are not permitted to bring him home. Not for the purpose of extending his life, but to give them a better environment in which to work toward accepting his death, if that is to be the end of this story. My grandson defied doctors' prognoses time after time for nearly 3 years. I now realize how this period had led us to the healing we experience daily. Why can not the blessing of hospice care be offered to the Gard family during this painful time?
I send them warmest prayers.

Gianluigi Magri
4 months 2 weeks ago

I totally disagree. Who decides the acceptable level of life quality? I can't see deputy God

James Haraldson
4 months 2 weeks ago

This is why you should never listen to a medical "ethicist." They are always willing to accept the "consensus" of morally depraved professionals as gospel and treat presumption as factual.

Christopher Freeman
4 months 2 weeks ago

I disagree. The U.K. doctors may not have an obligation to treat the young child, and that is clear from Catholic teaching. No one is confused on that.

What they also don't, or shouldn't, have is the right to hold this child captive against the wishes of his loving, competent parents. If there is a doctor willing to treat the child, why does the state have the right to hold the child captive?

Christopher Freeman
4 months 2 weeks ago

I never trust a "medical ethicist". They'll always be ambiguous and avoid any solid answers to your questions. Especially a Jesuit ethicist.

Richard Doerflinger
4 months 2 weeks ago

This essay ignores some things. First, while life does not trump all other values, it is an intrinsic value in and of itself. Second, Catholic teaching acknowledges that the assessment of burden and benefit has a personal dimension, and is not strictly a finding by doctors. Third, the decision as to burden and benefit is to be made by the patient, then those qualified to speak for him or her (preeminently the parents in the case of a minor child), failing that the doctors. The Church documents do not speak of judges making their own independent judgment. In an American court, there would have been deference to parental rights in the absence of a finding that the parents were abusive or acting directly counter to their child's interests (which no one is claiming here). The decision is an artifact of British common law, which in the case of disagreement assigns the judge to make his own independent judgment as to the child's best interests, ignoring the parents. This is not the standard of American law and no support for it can be found in Catholic teaching.

Alec Roy
4 months 1 week ago

I find this argument to be vacuous and morally offensive.

0) I've read this article a few times. I do not understand the title. What have pro-lifers overlooked in this case? The facts are few and easy to understand, and the British High Court's conclusions are vast, contrary to common sense, and politically loaded. Besides, I say you've overlooked the existence and dignity of Charlie. Humans are ennobled by suffering in order to live. If someone tried to put me down like an animal because they didn't think I was brave enough to endure pains, or that I'd have nothing to offer the world due to my special limitations, I'd rightfully want to hate that person forever. This includes, by the way, myself. Besides helping to push an infant over a cliff, you're also encouraging societal cowardice and viciousness by saying only health makes life worth living.

1) If Charlie's nervous system is both detectably in a state indicative of pain, yet also unable to comprehend it, then he is not "in pain". Not consciously. Even if he were, doctors could easily induce unconsciousness... for $$$. So, money or Charlie. That is the question. Such speculation about his awareness is, of course, irrelevant in the first place, since we weigh present pain against future relative painlessness and/or future goods that outweigh pain, when judging whether some medical intervention, no matter how remote, is our duty as doctors, families, and government agents, to provide.

2) It is not a proper role of government to establish a system for judging whether medical treatment is warranted. The relationship between a patient and physician is properly mediated by money or dialogue or some combination of both because both the physician and the patient ought to be respected as free agents drawing up a contract. The Gard family could force the only doctor in town at gunpoint to try to help their son, just as -- and perhaps in response to the following -- that doctor could refuse legitimate healthcare to the boy arbitrarily. Well, the Gard's are trying to go to another town. Why the obstacles? The only reason the government is acting as a middleman and arbiter in this case is precisely because government was made the primary financier of healthcare in Britain, and like all controllers of public funds they start thinking "they own the place". The power went to their heads, and suddenly it's as natural to them that they should decide matters of life and death as it is to God himself, at least, as they no doubt blasphemously imagine God. Besides, there are salaries at stake here, and precedent, government authority, even entire industries, so of course it's about money and power. Only four people know what's good for Charlie: possibly Charlie in the future and God. And so, any intelligent person can say with absolute certainty that all involved in this situation are ethically bound to do everything they can to try to heal Charlie and get him to that future state that is his birthright, unless God removes him from the game sooner. It is when we think we can anticipate God's moves and try to make them for him that we become little Anti-Christs. Make no mistake, Charlie just needs help breathing and to be fed. This could go on indefinitely if the Gard's were rich enough. They are not. Fake concern for his subjective awareness and future potential is quite obviously a pretense designed to cover up the British government and biotech business' desire to put money first and make a big public statement that the state decides the value of human life. They also enjoy mocking Christian morality any chance they get. Charlie is an example, not a patient, not even a human being. Their entire philosophy of life depends on his immediate death under these circumstances.

3) Charlie is not brain-dead. Therefore, taking up any offer of even only a remote chance of survival is not beyond extraordinary care, nor even extraordinary care. It's just ordinary medical care. It is not a doctor's responsibility to evaluate a patient's future potential. The practice of medicine means doing what you can in the here and now. And, yes, suffocating a baby to death does harm. "Do no harm" does not refer to future contingents. It means right now, always. Such a perverse doctor could say, "I won't save this man from a heart attack today because in my medical opinion his probability of developing prostate cancer is very high based on family history, and he hasn't taken good care of himself before, and late stage prostate cancer entails enormous suffering. Therefore, I shall let him die now." Preposterous ethical reasoning! And here the British High Court and others are actually arguing in an even more absurd manner by saying they cannot allow an untried treatment because there is no evidence it has ever been successful. Charlie is not brain-dead, but the government under which he was unlucky enough to be born acts as if it were. Of course, we, the rational, know that that government is not at all without purpose in these proceedings. It began with the conclusion, and has since merely sought a plausible rationale to make it so.

4) Life can't be an idol. God is life, life is God. If I serve life, I serve God, and if I serve God, I must serve life. Plotting a baby's murder by suffocation, or at best starvation, is not sophisticated moral reasoning; it's just evil.

5) I am morally offended to find this article here because the Jesuit Order was founded to share truth and goodness with the world. The sentiments, overall attitude, and foggy facts, expressed in this article represent the opposite values.

6) Another objection I have to the spirit behind this article is that it is obvious to everyone (except, apparently, bioethicists) that if the Gard's were wealthy, no opportunities would be denied them. It would be simply a matter of course that their wealth alone would signify that they have the right and proper intelligence to make healthcare decisions for their son, and doctors and hospitals from all over the world would be competing to get their hands on that money by any means. The British establishment is executing Charlie as an example because they feel they can get away with it because the Gard's are *nothing* to them. They have so far gotten away with it because the Gard's are *nothing* to most other powers in this world. This sickens me perhaps more than any other fact about this case. What's almost as sickening, and under other circumstances would be not a little comical, is the complete obliviousness of the establishment and their agents about this unalterable fact. It's so obvious to the poor, yet I believe they really believe the ethical-sounding scripts they're reciting to justify their oppression. They really regard themselves as enlightened saints, and they must surely close their eyes and smile after tucking themselves in at night, thoroughly convinced by their redefinition of suffocation to mean compassion.

7) I couldn't care less about what Church leaders have or have not said about this issue. Members of the Church are fallible because they are only special insofar as they are candidates for resurrection; they are not necessarily wise. As the Church itself teaches, ethical knowledge is not hidden from anyone in or outside of the Church. The Church doesn't inform people that this or that act is wrong as if they were clueless. Professional ethicists don't teach people that this or that act is wrong. Some people just know the difference between right and wrong, and they also know those who disagree are wrong, and if you lose, you also know everyone's lot in life is to suffer mistakes, and since the time of Babel few really understand each other.

Advertisement

Don't miss the best from America

Sign up for our Newsletter to get the Jesuit perspective on news, faith and culture.

The latest from america

James Comey is perhaps a better Niebuhrian than Niebuhr himself.
Drew Christiansen, S.J.November 20, 2017
“Not everything that is technically possible or feasible is therefore ethically acceptable.”
Gerard O’ConnellNovember 20, 2017
I have been trying with all my heart—with all my mind, with all my soul, to live peaceably with a terror that has been grafted onto me.
Robert I. CraigNovember 20, 2017
Image: iStock, (CNS photo/Jim Lo Scalzo, EPA) Composite: America
What ought to be the Ignatian contribution to the fight for racial justice, given our mission and our values?
Bryan N. MassingaleNovember 20, 2017