The Businesslike Death of Charlie Gard

For a moment he was businesslike. “Look acrost the river, Lennie, an’ I’ll tell you so you can almost see it.” Lennie turned his head and looked off across the pool and up the darkening slopes of the Gabilans. “We gonna get a little place,” George began. He reached in his side pocket and brought out Carlson’s Luger; he snapped off the safety, and the hand and gun lay on the ground behind Lennie’s back. He looked at the back of Lennie’s head, at the place where the spine and skull were joined.

“Businesslike” is the term Steinbeck used in Of Mice and Men to describe George before he euthanizes Lennie, for euthanasia is always businesslike. It must be in order to avoid the alarm and antipathy that its act naturally causes. Yes, George’s “mercy killing” saved Lennie from a terrible, painful death. Yes, discontinuing extraordinary medical procedures can be legitimate according to the Catechism (CCC.2278). But why be torn by such philosophical and spiritual dilemmas when a good lawyer, a watertight policy, and an impersonal business protocol can eliminate the issue altogether? It is too complicated to be human when dealing with human beings, and when human death is what is being dealt, a businesslike manner is always necessary. The businesslike death of 11-month-old Charlie Gard on July 28 was a dramatic, international horror forewarning that society (the term “civilization” is getting harder to justify) is committing itself contractually to walk in the valley of the shadow of death in a businesslike manner.

Charlie Gard was born in London on August 4, 2016, and at two months he was having trouble breathing. His parents, Chris Gard and Connie Yates, brought their ailing infant to the Great Ormond Street Hospital for Children where Charlie was diagnosed with mitochondrial DNA depletion syndrome, a rare genetic disease causing progressive brain damage, muscular deterioration, and motor skill loss. As his condition rapidly advanced, the baby became so weak that he could neither move nor breathe. Charlie was put on a ventilator while his grieving parents desperately sought to find some way to save their son. Their research led to Dr. Michio Hirano, a professor of neurology at Columbia University in New York, who was testing experimental treatments for neuromuscular disorders. Dr. Hirano agreed to consider Charlie’s case, and Gard and Yates ran a successful crowdfund campaign to cover the costs.

It was then that the hospital interjected. In businesslike fashion, the Great Ormond Street Hospital for Children stated its expert opinion and official position that such investigational treatments were not in the patient’s best interests. The hospital with its doctors and clinicians and analysts and specialists decided that, given Charlie Gard’s current condition, he would never recover and that the procedures proposed would not provide any short-term, let alone long-term, benefits. Charlie’s parents disagreed. The hospital further indicated their professional determination to withdraw the child’s life-support apparatus. Charlie’s parents refused. A lawsuit was filed. A court case commenced. The business of Charlie Gard’s life and death was considered by a judge as a legal question. With businesslike lawfulness, the High Court ruled that it was better that one baby should die than the agenda perish. The European Court of Human Rights approved. The British Supreme Court upheld. The Prime Minister concurred. Charlie Gard, found guilty of living an inconveniently fragile life, was sentenced to death and denied permission to be transferred to another hospital. His parents fought. The Pope and the US President made appeals. The world looked on with twin faces of disbelief and dispassion.

After a final attempt made available by a court allowance to consider new evidence for potential treatment, Dr. Hirano flew to London to examine the baby only to find his disorder too advanced for treatment. As his parents undertook a new struggle for the revoked privilege of taking their own son home to die, little Charlie Gard was disconnected from the ventilator that kept him alive and died on July 28. Though emotions, reactions, and arguments over the case swept and swirled like wildfire, all the i’s were dotted and all the t’s crossed. Charlie Gard died a businesslike death despite all the outrage, and, sometimes, Steinbeck tells us, that is just the way things have to go.

He went over and looked down at Lennie, and then he looked back at George. “Right in the back of the head,” he said softly. Slim came directly to George and sat down beside him, sat very close to him. “Never you mind,” said Slim. “A guy got to sometimes.”

Charlie Gard was a victim of a prevailing mindset that death can be, and sometimes must be, a means to make life more convenient for the global population. Even murder can be arranged so long as there is enough standard business procedure to account for it. Legal murder must be businesslike, or else it would just be murder—and illegal. In the case of Charlie Gard, the British Courts and the Great Ormond Street Hospital completed all the paperwork and the cost analyses and the statistical studies that gave them the power to claim moral superiority, and to dismiss the hysterics of two parents in a difficult situation that prevented them from being reasonable. Even death is reasonable, whether by abortion, euthanasia, or assisted suicide, so long as the proper attitude is taken and the right approach incorporated. Such is the businesslike manner of individualistic, secular, modernism, as it reveres the legacy of Margaret Sanger, praises the career of Jack Kevorkian (aka Dr. Death), brushes aside the killing of Terri Schiavo, and obfuscates the fetal organ harvesting operations of Planned Parenthood. The day and age is returning when the government dictates bioethics in cold, businesslike terms of death-on-demand and till-death-do-we-part totalitarianism.

That businesslike veneer of peace and progress is the sinister solution when fundamental parental interests are overruled, when the powers of state intercede to dole out life and death to its citizens as it sees fit (especially when the government is picking of the medical tab), and, of course, when the whole world is watching. Charlie Gard’s death was businesslike, making it a harbinger of the ever-advancing culture of death that Pope St. John Paul II warned the Church of. It is a bad business that relegates parental rights and human rights to definition by the law and to being subject to the discretion of the law. Religion, race, politics, and the rest of the things that divide people aside, there is at work a re-visioning of what it means to be human that all human beings should resist and resist together. Meanwhile, that bland businesslike manner continues to manipulate the truth and the travesty of deaths like Charlie Gard’s to prevent too much disturbance to the false foundation of benevolent, humanitarian relativism that keeps a godless, gutless society from tearing itself to pieces overtly.

Charlie Gard was baptized into the Catholic Church less than a week before he died. Surely, he is in heaven now with the glorious crown reserved for the Holy Innocents who were slaughtered by those who sought to prevent the Kingdom of Life by unleashing death. May Charlie Gard pray for us, and pray for his parents, and pray that this world might be redeemed that did him to death with businesslike rationalization. For, though modernity continues to labor and lunge in the traces it has chosen, Scripture has pronounced already what the wages of sin shall be. And, though terrible to imagine, the last judgment of the dogged businessmen of death might reflect another thread in Steinbeck’s pathetic tale:

“This ol’ dog jus’ suffers hisself all the time. If you was to take him out and shoot him right in the back of the head-” he leaned over and pointed, “-right there, why he’d never know what hit him.”

Sean Fitzpatrick

By

Sean Fitzpatrick is a graduate of Thomas Aquinas College and the Headmaster of Gregory the Great Academy. He lives in Scranton, PA with his wife and family of four.

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  • ladykateadams

    Excellent. Thank you.

  • Simon

    As someone who is not Catholic, I really hope there are some voices on here from those who are finding fault with this article. Because I think writing such ill informed, manipulative and sensational articles communicates hate and ignorance rather than the love and understanding most people with faith aim for. I work in healthcare and what is suggested is baseless, offensive and damaging to everyone. I find it really hard to respect someone who deliberately removes all nuance and puts advocating for their agenda above what is true. What does businesslike even mean? It’s as meaningless as someone describing Catholicism as a corrupt and abusive old business.

  • 余啓超

    The author eloquently expresses my deep feelings on how a government worker like myself has to deal with people on a daily basis in order to just survive in my profession. I work in education.
    There’s got to be a better way.

  • 余啓超

    First off, please refrain from throwing around words like hate and ignorance. Avoid appealing to vague concepts such as love and understanding.
    I concur with the author that our socialized systems lack humanity, particularly in its business-like approach to complex human problems.
    I find it really hard to respect someone who throws around vague buzzwords without discussing the very systems and protocols that are the order at hand.

  • Stanley Ekwugha

    Before the death of Charlie I wrote this article.

    CHARLIE GARD AND THE CULTURE OF LIFE

    In the article of last week, I briefly treated communism as the error of Russia in the July 13th Message of Fatima. Communism is the teaching of Marx and Engel which John Paul II described as being the genesis of the death of the human society. A teaching
    that denies the existence of spirit denies the existence of God and the eclipse
    of God brings about the disintegration of human values and dignity. It creates
    an atmosphere of the culture of death. Today I want to look at what culture is
    all about with reference to the recent case of Charlie Gard in London. It is a
    situation in which some parents must have found themselves – a situation of
    carrying the burden of caring for a child that you quite know that will not
    take care of you in old age. It is a situation where we are convinced that
    there is more to human life. No matter the quality of that life, the dignity is
    inherent and inviolable. This is the culture of life – valuing life for just
    being life irrespective of the quality.

    Charlie Gard is an 11 month old
    child of Chris Gard and Connie Yates diagnosed of mitochondrial DNA depletion
    syndrome. It is a rare disease that reports have it that Charlie is 1 out of
    only 16 people having it in the world. He had been on life support machine. The
    parents had been fighting against removing the life support machine. Such
    ailment cannot be cured in UK and the doctors are of the view that the life
    support machine be removed and Charlie allowed to die in “dignity”. Hence Chris
    and Connie had canvased for aid and actually raised £1.3 million to fly little
    Charlie to USA for an experiemtal treatment which they believed would save his
    life. Meanwhile the European Court of Human Rights had ruled against such move.
    Theresa May is in support of the court’s decision. Meanwhile Chris and Connie
    have slammed the court for keeping them in the dark and not involving them in
    decisions over their own child. The other side of the pain is that they were
    not permitted to take their child to die in their home. This tension has caused
    a global media uproar. Millions of supporters have aligned with the parents of
    Charlie and call themselves Charlie’s Army” with the twitter tag
    #JeSuisCharlieGard. Recently the Vatican Bambino Gesù hospital has offered to care
    for Charlie and believed that nucleoside can possibly be of help. Before then
    the pope had made a twit in which he praised as virtuous that act of caring for
    a human life until nature takes its natural course. He has promised to issue Charlie
    a Vatican passport. Even the USA president Donald Trump has joined in this
    fight in favour of the parents’ wish. He is delighted that a US hospital has
    offered to treat little Charlie free of charge and if possible ship
    experimental drugs to UK for such.

    The issue before us here is a
    complicated bioethical one. One must weigh the pros and cons before making a
    definite judgement. Even when the judgement is made, we should also keep our
    ears open to listen to what others have to say. In medical ethics the issue of
    withdrawing a life support machine has been a sensitive one. When weighed
    against many factors such as the pain the patient is going through, the money
    involved that would have been used to take care of the living, the
    inconvenience caused on the family members etc, there might be a room to
    withdraw the machine. However this is usually after a serious decision has been
    reached by the patient himself and when he is incapacitated to make the decision,
    it should be reached by proxy. Sometime in 2014 I accompanied an extended
    family that were at a crossroad to take this decision on their sister who was
    battling with cancer and had been on a life support for a certain period of
    time. My presence in their midst was that of a moral support. I was careful
    enough not to act or behave in such a way that I might be imposing an already
    made decision on them. I made sure that they followed their conscience. Finally
    with a heavy heart they okayed the removal of the life support and their sister
    rested in peace. There is also this claim that at a point in time Pope John
    Paul II said no to all medical treatments. This is in bioethics respecting the
    will of the patient. However, there is something different in this case.
    Charlie cannot take this decision and the parents therefore have the right to
    take decision on their child. Now how come not only that the decision to switch
    off the life support is not only coming from outside but also against the wish
    of the parents? How come that alternative treatment is ruled against even when
    people have rallied around to raise this money and are crying foul against the
    rule of the court? How come that the parents are not involved in the decision
    concerning their child? Is it not a case of a communist totalitarian system of
    government again? Why should they also not be allowed to take their child to
    die in their home? Is this not a severe mental torture from the state? What is
    the court saying concerning the helping hands offered by Francis and Trump?
    What is actually happening? All these issues make the case unique and call for
    new appraisals? Moral theologians, legal and medical practitioners and
    ethicists should put on their thinking cap at this moment.

    In evaluating this issue, we have
    to listen to our conscience. The state in satisfying its own conscience should
    also respect the conscience of the parents. The state cannot claim to be more
    emotionally attached to the child than the parents are. The bond between the
    parents and the child is stronger than that existing between the state and the
    child (if any at all). This is a truest representation of the culture of death.
    When the feelings of the woman who bore the child in her womb for nine months
    is not respected, a new field is discussion opens. When reason completely
    overshadows feeling (which although not possible), that reason becomes
    deficient. When ego parodies love and concern it becomes another deadly issue.
    A big muscle must be balanced with a big heart for power without love destroys.

    Sometime last year, in my article
    Easter Funeral I told of the death of
    young Kyrian with Down syndrome. The parents Hilary and Adaora are good friends
    of mine. When their child was diagnosed of Down syndrome with two holes in his
    heart, I was immediately depressed. The father expressed his feeling that God
    might be trying to test his faith. Hilary and Adaora were not all that financially
    strong. The surgery would be very costly and not to talk of the money involved
    in the travel to India. Then how does one take the fate of going through this
    torture over a child you know that you will not “profit of” in old age? The
    answer is simple – the culture of life. They loved their child unconditionally.
    Human life is valued irrespective of its quality. It is only in a culture of
    death that such questions arise. The love the parents have for their child can
    defile every human logic and this love should be respected. I therefore join
    the Charlie’s Army in campaigning for life. UK government should grant the
    parents’ wish. The money has been raised by the people of good will. USA and
    Vatican have decided to help. I pray that UK should give them a trial. We are
    not God. God can solve seemingly impossible problems. He is greater than
    Charlie Gard’s issue. Only those who believe in culture of life will believe
    what I am saying.

    We are not God. Charlie Gard
    should be a given a chance to live. When men play the role of God then what
    follows will be a transvaluation of values – turning the whole of ethical table
    upside down. Such unhealthy intrusion of the government to the point of denying
    parents right over their children is typical of a communist totalitarian
    system. Medicine is about saving life and not about stopping it under the
    pretense that the person is suffering much. It is unfortunate that such is
    happening in a capitalist society. It is a culture of death – a culture defined
    by John Paul II as “a war of the powerful against the weak: a life which would
    require greater acceptance, love and care is considered useless, or held to be
    an intolerable burden, and is therefore rejected in one way or another. A
    person who, because of illness, handicap or, more simply, just by existing,
    compromises the well-being or life-style of those who are more favoured tends
    to be looked upon as an enemy to be resisted or eliminated. In this way a kind
    of “conspiracy against life” is unleashed” (Evangelium Vitae. 12). It is a culture orchestrated by “powerful
    cultural, economic and political currents which encourage an idea of society
    excessively concerned with efficiency.” What a new face of eugenism. Where are
    we heading to? That is what we obtain when we begin to question certain
    fundamental principles of ethics, when God is dethroned and man usurps the role
    of God. The death of God is the death of human society. Ethical principles
    serrated from God are bound to destroy. We need to revive the culture of life.
    God must be the master and man must be the steward.

  • Joseph

    I do not believe in using animals or humans for “experimentation.” However, if there were be no pain or serious discomfort, Charlie would probably have given insights into this treatment had he been allowed to do so. He would have been part of the research enabling others to be saved. If Charlie had been aborted, some who wanted his death would probably have wanted him to be the object of experimentation.

  • Simon

    You’re a little bit hypocritical to bemoan vagueness in my comment – I read your two. Similarly hypocritical to say ‘love’ is a vague concept to you that I should avoid, but ‘humanity’ somehow is not. And ‘ignorance’ is a vague buzzword you’ve decided I should refrain from using, but the repeatedly meaningless uses of ‘businesslike’ is eloquent. Seriously, help me understand when healthcare is and is not ‘businesslike’… What is ‘businesslike rationalization’ and ‘businesslike lawfulness’?? Can law be unbusinesslike..? Euthanasia is always businesslike?? A lot of vaguely throwing around of that word I reckon.

    In my opinion, discussing healthcare professionals using the imagery of someone being shot in the back of the head and terms such as “legal murder”, “slaughtered” and “culture of death” argues with a hateful tone. It is ignorant to conflate palliative care, treatment of the terminally ill and euthanasia. They are not interchangeable. I’m not sure if it’s ignorance or hate of healthcare professionals, but to suggest they are not torn by philosophical and spiritual dilemmas and act in a business-like approach to complex human problems, misunderstands the codes they practice under and the reality of contemporary healthcare. Saying “Charlie Gard, found guilty of living an inconveniently fragile life, was sentenced to death” is unjustifiable and pretty repulsive in its ignorance. I also view talk of conspiracies, where judges want a baby dead to protect ‘an agenda’, as rather ignorant and hateful too.

    You seem interested in discussions of ‘systems’, so how exactly does the NHS being a ‘socialized system’ make healthcare more businesslike than private companies calculating how best to profit from delivering private healthcare or insurance? Was Dr. Hirano not the most businesslike, standing to profit financially from experimenting on Charlie? What actual laws do you disagree with? Do you think professionals should not advocate for children’s’ best interests? In what sense was the decision regarding Charlie Gard a result of cost analyses??? When did GOSH or a judge ever claim moral superiority or dismiss the parents as hysterical? Do you disagree with evidence based practice? Do you think parents should be permitted to make harmful choices for their children? Seems like you and the author would prefer no difficult decisions, no evidence, no laws, no policies. If healthcare professionals merely prayed, hoping for a miracle, we’d then quickly be surrounded by a culture of death.

    I really think the author and the catholic church is on dangerous ground lecturing on how best to safeguard children from harm, referring to human rights law as ‘bad business’. Is much of what goes on within the Vatican not businesslike? Wasn’t the abuse of thousands of children and subsequent cover ups successful because of the systemic, secretive, businesslike nature of the Vatican? The NHS and UK courts act transparently, judged independently, based on evidence and the child’s best interests, but they’re still viewed as ‘sinister’ somehow….

  • Sue

    Sounds like Simon finds objective truth “manipulative.” Having followed Charlie Gard’s story closely, I found nothing in this article that was “ill informed, manipulative & sensational.” Every point made was based on something that actually happened. It’s frightening that this seems to be the opinion of someone who works in health care. “Nuance” doesn’t belong in journalism. Truth & facts are the sole “meat” of good journalism unless it’s fiction. This article consisted of truth & facts.

  • Simon

    An absolutely ridiculous comment. Feel free to help me find the facts or any clear points in the article. It’s dominated by emotive language and sweeping generalisations, advocating for the author’s offensive beliefs with little basis in reality. I’ve pointed out some issues I see with the article (subsequently deleted – I’ll repost it for you).
    Objective truth? If you don’t think that article contains any bias, agenda or opinions, the kindest conclusion I can make is that you haven’t read it. Identifying such truths accurately should be fundamental, which is why I find that absence so “manipulative.” Being loosely “based on something that actually happened” and taken to extreme and unjustified assumptions is not stating the objective truth. To garble at length, suggesting the state, judges or healthcare professionals conspired or worked towards a sinister agenda of legal murder to euthanize the sick as a matter of convenience without any ethical considerations is not factual. It is not truth. It’s disgusting rhetoric. I’m at a loss at how this is not ill-informed, manipulative & sensational. There are lots of specific and interesting points to debate following the Charlie Gard case, but instead, this article is consistent with the unthinking exploitation that has come from some individuals with political, religious and ideological agendas. This has been very cruel to the parents.
    And journalism… Even if the author did consider himself a journalist, the article is an opinion piece (not a statement of objective truths). Which is fine, but moral and quality opinion pieces should respect the detail and nuances of what is being written about, rather than purposefully simplifying them to the point of worthlessness. And your view that journalism should only report facts and should never analyse the facts is frankly idiotic.
    Both you and the author demonstrate little knowledge the case, the law, healthcare or ethics. The compassion and love shown towards Charlie Gard by the 200 or so who cared for him at GOSH and the effort they made to work with the family and avoid litigation should be recognised. Also, if you genuinely find my comments frightening, pertaining to me working in healthcare, I really think you should explain or justify that somehow. Maybe with facts and objective truths, rather than vague insinuations, if you are able to distinguish between the two.

  • Simon

    You’re a little bit hypocritical to bemoan vagueness in my comment – I read your two. Similarly hypocritical to say ‘love’ is a vague concept to you that I should avoid, but ‘humanity’ somehow is not. And ‘ignorance’ is a vague buzzword you’ve decided I should refrain from using, but the repeatedly meaningless uses of ‘businesslike’ is eloquent. Seriously, help me understand when healthcare is and is not ‘businesslike’… What is ‘businesslike rationalization’ and ‘businesslike lawfulness’?? Can law be unbusinesslike..? Euthanasia is always businesslike?? A lot of vaguely throwing around of that word I reckon.
    In my opinion, discussing healthcare professionals using the imagery of someone being shot in the back of the head and terms such as “legal murder”, “slaughtered” and “culture of death” argues with a hateful tone. It is ignorant to conflate palliative care, treatment of the terminally ill and euthanasia. They are not interchangeable. I’m not sure if it’s ignorance or hate of healthcare professionals, but to suggest they are not torn by philosophical and spiritual dilemmas and act in a business-like approach to complex human problems, misunderstands the codes they practice under and the reality of contemporary healthcare. Saying “Charlie Gard, found guilty of living an inconveniently fragile life, was sentenced to death” is unjustifiable and pretty repulsive in its ignorance. I also view talk of conspiracies, where judges want a baby dead to protect ‘an agenda’, as rather ignorant and hateful too.
    You seem interested in discussions of ‘systems’, so how exactly does the NHS being a ‘socialized system’ make healthcare more businesslike than private companies calculating how best to profit from delivering private healthcare or insurance? Was Dr. Hirano not the most businesslike, standing to profit financially from experimenting on Charlie? What actual laws do you disagree with? Do you think professionals should not advocate for children’s’ best interests? In what sense was the decision regarding Charlie Gard a result of cost analyses??? When did GOSH or a judge ever claim moral superiority or dismiss the parents as hysterical? Do you disagree with evidence based practice? Do you think parents should be permitted to make harmful choices for their children? Seems like you and the author would prefer no difficult decisions, no evidence, no laws, no policies. If healthcare professionals merely prayed, hoping for a miracle, we’d then quickly be surrounded by a culture of death.
    I really think the author and the catholic church is on dangerous ground lecturing on how best to safeguard children from harm, referring to human rights law as ‘bad business’. Is much of what goes on within the Vatican not businesslike? Wasn’t the abuse of thousands of children and subsequent cover ups successful because of the systemic, secretive, businesslike nature of the Vatican? The NHS and UK courts act transparently, judged independently, based on evidence and the child’s best interests, but they’re still viewed as ‘sinister’ somehow….

  • D McGovern

    You are far to emotional not to make one wonder what kind of skin you have in this game.

  • Simon

    I’m assuming you mean ‘emotional’ pejoratively to describe someone you disagree, but can’t put into words why. I think my behaviour is informed by an appropriate range of human emotions… Isn’t that what the article was advocating for…? Have the courage to be explicit if you want to say something. I have a feeling you’re not even sure what you’re trying to insinuate exactly, but dropping vaguely sinister suggestions as a rebuttal is childish and contributes nothing.

  • Bisquiteen Trisket

    From a purely scientific standpoint, the child has no chance at long term survival as it is. Without treatment, the child will certainly die. WITH treatment, it is possible that the child will survive, but at what cost and what will be the child’s quality of life?

    We all want to think that the financial cost shouldn’t matter, but it does matter unfortunately. Healthcare does not have bottomless funds from which to draw. There does have to be a decision made at some point whether the cost can be justified. Sounds heartless, but it’s true.

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