On Charlie Gard
(I’m honored to introduce today’s guest author: JD Flynn. He is a husband, a father, a canon lawyer, and a great friend.)
In the middle of the night, when she was just six days old, our daughter Pia went into cardiac arrest. Twice. Pia was in the hospital already, and so doctors and nurses rushed into the room and saved her life. Twice. It was terrifying, and we were powerless. Pia is alive because of the Providence of God, and the medical care she received.
There are, doubtlessly, some people who might have asked if saving Pia’s life was the right thing to do. Pia has trisomy-21, the chromosomal defect known as Down syndrome. And the day before her heart stopped pumping blood, Pia had been diagnosed with a rare and untreatable kind of cancer. We didn’t know whether it would run its course, develop into something worse, or end her life. We accepted this prognosis, and we knew that her diagnosis would lead to suffering.
There are, I’m sure, some people who might have thought that a disabled girl facing a battle with cancer would have no meaningful, worthwhile, or comfortable life. People with Down syndrome are aborted at staggeringly high rates, in part because of a false compassion that believes their sometimes-difficult lives are not worth living. Three years ago, some ethicists began suggesting that aborting children with Down syndrome is a morally virtuous—and ethically normative—thing to do. And the euthanasia of sick and suffering children—children facing battles like cancer—is also becoming acceptable in many parts of the world.
I shudder to think it, but there are doubtlessly people who thought that a sick and disabled little girl, like our daughter, would have been better off dying that night. That her suffering wasn’t worth it.
But doctors saved Pia’s life anyway, because saving lives is what medicine is all about. Pia has Medicaid: the government paid for her treatment because supporting families in need is what government is supposed to be about.
Today she’s four. She has endured a lot of suffering. But she is also the most joyful person I’ve ever met. And we, Pia’s parents, don’t see “Down syndrome” when we look at her. We don’t see “cancer.” We see our daughter. We see a person, not a calculation. We can’t help that: we’re her parents. We would have done anything possible to make sure she lived through that terrible night.
Charlie Gard’s situation is not the same as Pia’s. Charlie Gard will almost certainly die, and soon. But I can imagine what his parents might be feeling right now. They don’t see Charlie as a media sensation, the center of an international debate over human and family rights. They don’t see him as a tragic medical phenomenon. They don’t see him as the sum of a dispassionate calculation of suffering, usefulness, and “quality of life.”
Charlie Gard’s parents see their little boy. They see his mother’s nose, and his father’s eyes. They see a baby they just love to be with. They see, maybe, a gift from God. And they’re hoping that someone—some doctor or scientist– will rush into the room, and save Charlie’s life. They’re willing to do anything—to go the ends of the earth—to try to help their little boy.
The treatment Charlie’s parents hoped to try had very little chance of success. But they wanted to try. Not to become culture-warriors or advocates for parental rights. Just to save their little boy.
The court did not support Charlie’s parents because, in the words of Charlie Camosy, they “do not think Charlie’s life is a benefit to him. They think it is in his best interest to die.”
Charlie Gard’s parents are not allowed to try, because powerful people think that the life of a seriously disabled boy is not worth living.
Pope St. John Paul II wrote that the culture of death is “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 favored tends to be looked upon as an enemy to be resisted or eliminated. In this way a kind of ‘conspiracy against life.’ is unleashed. This conspiracy involves not only individuals in their personal, family or group relationships, but goes far beyond, to the point of damaging and distorting, at the international level, relations between peoples and States.”
Charlie Gard is the victim of a “conspiracy against life.”
Doctors, governments, and courts which can look at parents like Charlie’s, and judge that they must give up the fight—that dying is in the best interests of their suffering little boy—have lost their humanity. They’ve forgotten, or rejected, that even difficult lives are gifts worth protecting, supporting, and saving. A case like Charlie’s reveals the inhumanity, the callousness, and the dictatorship of the culture of death.
Charlie Gard will likely die soon, and we’ll move on to some other media sensation. Some other tragedy will show up in our Facebook and Twitter feeds. We’ll read think pieces about something else. But Charlie’s parents won’t move on. They’ll mourn their son, whom they know in a way that no one else does, and whom they love in a way that all of us should understand. And they’ll wonder why, as their son lay dying, no one rushed in to help them try to save his life.
(Find more of JD Flynn’s writing here.)
29 Comments
Vanessa
I am devestated for Charlie’s parents and it’s awful that this decision was taken out of their hands, but this is a very simplistic reduction of the case and it’s untrue to say that he’s a victim of a “conspiracy against life.” It is not euthanasia to decide against using extraordinary measures to continue the life of a terminally ill boy. This is not what our Church teaches.
I’d encourage you to read Simcha Fisher’s piece on this tragedy: https://www.catholicweekly.com.au/simcha-fisher-charlie-gard-will-die-but-is-it-murder/.
“Pro-lifers are rightly alarmed to see the state superseding the parents’ authority to make this decision. But the decision itself is not intrinsically immoral. If a rightful guardian made the decision that the hospital has made, it would be neither murder nor eugenics nor cruel nor brutal nor heartless nor part of the culture of death. It would simply be bowing to mortality—as the Pontifical Academy for Life said, ‘recognis[ing] the limitations of what can be done,’ in hopes of sparing a helpless baby more suffering.'”
JD
I do not dispute that removing a ventilator is a morally neutral act. I have not called it intrinsically immoral, nor have I called it euthanasia. My concern is that state’s determination to supersede parental authority, do, in large party, to the calculations of our utilitarian worldviw.
Jenny Uebbing
Simcha’s piece was dangerously obtuse to the reality that Charles’ parent’s were summarily stripped of their parental rights by an overreaching state that is indeed acting immorally by superseding their authority over their child’s life and medical care. I won’t even address the ludicrous statement by the Pontifical Academy for Life (which Pope Francis himself had to walk back 24 hours later.)
Ari
“If a rightful guardian made the decision that the hospital has made it would be neither murder nor eugenics nor cruel nor brutal nor heartless nor part of the culture of death.” The question is – who is the “rightful guardian”? The state or the parents? Simcha is mis-guided on this point, and operating from the premise that the state has the RIGHT to be the ones making these decision. It is not simply “bowing to mortality,” it is allowing the parents to give their child a *chance* or give the parents a right to let him truly die with dignity, not die at the hands of apathy. It comes back to the guardianship.
Vanessa
Jenny, I’m not sure how you can call her piece obtuse to that reality when she clearly states that it is not the object of her argument:
“Here, I will not discuss the question of parental vs. state authority in life-or-death decisions. I only want to talk about the life-or-death decisions themselves, and I want to challenge the brutally simplistic narrative that there are two sides: People who want to treat Charlie further, who are good, and people who want to withdraw Charlie’s life support, who are bad.”
Of course it’s extremely problematic that the parent’s right to decide their child’s medical treatment was stripped away from that. It’s a major government over-reach that we should be very alarmed by. However, this articule seems to make the argument that the hospital’s decision stems from “the culture of death” when there’s no evidence for that. This article may have not called it “euthanasia,” but the tag says it and that is extremely misleading.
Jenny Uebbing
But then of course she does go on to discuss it. She says that Charlie “is probably suffering” and “most likely wouldn’t benefit from the experimental treatment.” Is she a doctor or his parent? How does she have access to this intimate information about him?
Jenny Uebbing
Yes, precisely Ari. Her entire premise pivots on this assumption that the State could possibly be Charlie’s rightful guardian in this case.
Vanessa
I’m not sure if my comment was deleted, but I’ll type it out again. How does she have access to this information? Probably from the court documents she quotes:
“There is unanimity among the experts from whom I have heard that nucleoside therapy [the experimental procedure offered in the US] cannot reverse structural brain damage. I dare say that medical science may benefit objectively from the experiment, but experimentation cannot be in Charlie’s best interests unless there is a prospect of benefit for him.
The Great Ormond Street Team [at the UK hospital] believe that Charlie can probably experience pain, but is unable to react to it in a meaningful way. Their evidence was that being ventilated, being suctioned, living as Charlie does, are all capable of causing pain. Transporting Charlie to the USA would be problematic, but possible. Subjecting him to nucleoside therapy is unknown territory – it has never even been tested on mouse models – but it may, or may not, subject the patient to pain, possibly even to mutations. But if Charlie’s damaged brain function cannot be improved, as all seem to agree, then how can he be any better off than he is now, which is in a condition that his parents believe should not be sustained?”
The question is whether this treatment is in the best interest of Charlie (which as your article mentions, it’s highly unlikely that it would be successful) or if it is simply beneficial to medical research. I agree that the parents should have the right to act in the best interest of their child regardless, but this article attempts to claim (with little evidence) that the hospital’s motivation stems from a culture of death which is not helpful to the discussion. Simcha makes no such assumption that the State could or should be Charlie’s rightful guardian; she explicitly says that it is alarming that they have overstepped their authority, but the decision itself does not automatically make Charlie a victim of a “conspiracy against life.”
Teresa
Are people purposely ignoring the fact that the state is determining this boy’s life is not worth even trying to save? That a country with socialized medicine is determining that it’s better he die surrounded by machines in a hospital, rather than dying while in transport to a maybe, possibly, tiny, glimmer-of-hope treatment? Or even in his own home?
This same country is rolling out Non-Invasive Prenatal Tests in 2018, to screen for Down syndrome, so women have “choices regarding the direction of their pregnancy,” which is code for screening for Down syndrome, so the state can pay for the abortion, because it’s cheaper than paying for the life of a person with Down syndrome.
Countries with legalized euthanasia, when they first leagalized it, of course said it was needed for the terminally ill, who were suffering, and had no hope. Now, people in these states are euthanized for “autism” (as listed on their death certificates.) These same countries have a near 100% termination rate for prenatally diagnosed Down syndrome.
People really need to wake up and realize these are all connected. THIS is the conspiracy.
Rosemary
Simcha’s article was not in opposition to this piece at all — she stated at the very beginning that she was not going to address the intervention of the courts, which is and should be the most disturbing part of the story. She was addressing the people who are calling his death murder, with the concern that removing life support from suffering and dying people should not be seen as murder, and parents or relatives who make that difficult decision are not guilty of euthanasia. It’s important not to mix up the problem here and further hurt the pro-life cause by looking like extremists who want everyone to live no matter what, especially babies, as if we have no idea that there is a life, a better one, after this. J.D. Flynn is addressing a different part of this story, the point of view of the suffering parents stripped of their rights. Both essays are good and valuable.
Jenny Uebbing
Yes, this Teresa, times 100.
Therese
JD and Jenny, You are correct. THe issue is not so much the medical care as it is the parents authority over their child. I am very much afraid that the USA will end up with the same government control of our children if we don’t wake up.
Marissa
I think it is absolutely wrong that the parents were stripped of their right to decide. Hands down, without a doubt.
However, where I think a lot of people are concerned with how this case is being treated is the vilification of withdrawing life support without trying the alternative treatment. This isn’t a case where withdrawing is euthanasia or murder or mercy killing (all words I have seen used to describe it.) The parents would not be wrong if they wanted to make the same decision the hospital has wrongly decided for him. This is not the same as withholding treatment from someone because their disabilities outside of the illness would not allow them to have “quality of life.” It is more along the lines of a terminal cancer patient deciding to enter hospice instead of continuing therapy because they know death is inevitable. Both are valid choices–of course the key is that it is the decision of the patient or parent. Again, on that I absolutely agree.
It’s absolutely right to express outrage of the treatment of the parents. It’s dangerous in a “boy who cried wolf” sort of way to scream “Euthanasia” and “Murder” at the actual decision to remove life support. The lines are being blurred pretty badly on some outlets.
I think you will see a lot of the worry coming from the medical community who see end-of-life decisions play out badly often, to the detriment of the patient and their family. I will always argue and believe that the patient should have the choice to pursue extraordinary measures, but they should not be vilified for not always choosing to go that route. The Catholic Church is pretty clear on this. At the same time, every situation is different and should be treated as such. The idea that all options (including extraordinary measures) should always be pursued in every case and death is always the enemy isn’t the Catholic position, but if we aren’t careful it is possible to get there. I am NOT saying that this is the case here, but it is something to think about.
When I do think about how to approach terminal illness and death in this mixed up world, Joey Feek has been the best example I’ve seen. She fought hard and when she knew the end was inevitable, she spent her last days with her family and small daughter and hopefully gave them some peace when she did die.
Mostly, I feel for the parents. I hope they get the chance to try, and if he dies, gain a little peace. But don’t forget all the other parents that have had to make this hard decision and what they must be feeling to see it labeled murder.
Holly
Agree 100% – Marissa articulated everything I have been thinking so well. Our good friends lost their young son in a car accident just over a month ago. He was also on life support. I can’t help but think of all the parents who let their children go every single day. And then I look at my youngest son and my heart just breaks for that poor baby boy. I wish he could just be safe in his mama’s arms until God calls him home.
Vanessa
This was exactly my point, Marissa. This article doesn’t call it euthanasia, but there’s a “euthanasia” tag on it. I think this article does blur the lines saying that the hospital’s motives stem from a culture of death, but I don’t see any evidence for that characterization.
olivia
Is it not possible that a “rightful guardian” can be so bereaved at the prospect of losing their loved one that they will not allow them a dignified death? Is it possible that through many different crowd funding actions Charlie Gard could be kept alive indefinitely by a hospital that is willing to take the money in return for care? Is this treating him with dignity? Do we even get to question and debate this or does “parental right” trump “dignified death?”
Catholic Bishops have said time and again that they cannot support laws which force hospitals to keep patients alive indefinitely, even if privately funded. It does no allow for a dignified death, this indefinite life support. I realize that the state element is alarming but if we stop thinking about the state as some crazy murderer on the loose and try to understand their point of view we might have a different perspective. That doesn’t mean we agree necessarily, this situation is not so black and white. But I, for one, cannot simply say that all the evil was on the side of the state. The parents in this case also need to be challenged about the realities of their precious child’s life and death. Thankfully these cases are rare, and not, in my opinion, comparable to the story the blog guest wrote about his own child. All this “state is gonna start killing our babies” hysteria is not the discussion faithful Catholics need to be having. Instead how about we discuss what is the morally correct ending to this situation should we be the ones to be facing it.
Lastly, I understand people want to talk about guardaianship and parental rights, etc. I know this is an important discussion, and one that ultimately we can only really influence in the voting booth. But we cannot blindly support something that is opposite state interference if it denies a person a dignified death. The state wants to take away the dignity of our life and we want to take away the dignity of our death…there must be a more just path.
Holly
Yes!!! Your first paragraph is so good!
Vanessa
I agree, Olivia. I sympathize with the parents and I can’t imagine if I was in their situation and how difficult it would be to accept losing the person you love most in this world. I don’t blame them for wanting to use extraordinary means to try to keep their child alive and I think they probably should have that right to make that decision even if it is the wrong one, but we should take this opportunity to step back and remember that our Church doesn’t teach that we should do anything and everything to avoid death and that it is not helpful to muddle this issue by screaming, “euthanasia!” “Culture of death!” as Jenny has (or at least tagged).
Jenny Uebbing
Vanessa, you’re being needlessly inflammatory. Nobody is “screaming” anything. And you are muddying the waters. The issue isn’t whether the Church teaches that extraordinary means are necessary to sustain life at all costs (they aren’t), but that this child is being legally orphaned by an overreaching government. Stick to the fact at hand. Nobody in this piece or on this thread is arguing that it’s morally wrong to remove Charlie from life support IF HIS *PARENTS* DETERMINE THAT BE THE BEST COURSE OF ACTION. The argument is that his family is being stripped of the right that is theirs granted by God and God alone. Also, you might want to give this a look: https://www.nytimes.com/2017/07/07/world/europe/uk-charlie-gard-us-doctor.html
Seems like it’s not quite as cut and dry from the court’s perspective or his medical team’s, either.
Vanessa
Can you explain why you tagged this article with “euthanasia” when this isn’t the issue we’re debating? Yes, I’ve said multiple times that I agree that this is a major government overreach and that it is a tragedy. Does that mean that the doctors’ motivation stems from a culture of death or that Charlie is a victim of a “conspiracy against life?” I think that’s debatable. This article is trying to make the case that the doctors are making a utilitarian judgment on the worth of Charlie’s life which again is debatable. I think we can agree the parents should have the right to choose the medical treatment for their son (yes, even extraordinary measures) without saying that Charlie is in this situation because “powerful people think the life of a seriously disabled boy is not worth living.” Again, where is the evidence? If you want to stick to the issue at hand, let’s stop with the hysteria of this “culture of death” argument that isn’t applicable to this case.
Jean C
Yes, Olivia, a “rightful guardian”, be they a parent or other family member can often be so bereft at the prospect of losing their loved one that their demands may be far and beyond what is reasonable in the situation. I’ve experienced this as a health care professional. There is a lot missing from the story version we’re reading about this poor child and his family, but I, for one, draw a line at the suggestion that decisions are being made from the position of a culture of death. Sometimes parent’s rights are overruled when the child’s best interests don’t mesh with their wishes and where their own desires to keep the child alive, on life support indefinitely, is preferable in their own minds to allowing their child a dignified death. What is being expressed by commenters are opinions, and those opinions may not necessarily be fully informed, whether from close firsthand knowledge of the case or from an acceptance of the fact that those in health care enter the field because they care deeply about the good of others. Perhaps if any of us could have sat in on the meetings, either at the court level or in the hospital meeting rooms we would come away with a less judgemental attitude towards those professionals involved. We shouldn’t think for one minute this little boy’s life and the impact of his condition on his parents aren’t weighing heavily on their minds.
jeanette
I understand what you are saying here, but the case at hand is not one of parents wanting a child to remain indefinitely on life support (such as the case in 2016 in CA where a young girl was declared brain dead but parents insisted on life support, so I know what you are referring to in the case of parents not accepting the reality of the situation and having to be overridden). Charlie’s case is about the issue of being permitted to try another treatment, no matter how slight the chance might be (which is why it is “extraordinary means”), and his parents being denied that choice.
Jenny Uebbing
Vanessa, did you read the John Paul the Second quote he encapsulates within his article? Go back and do so if you haven’t. That is where the references to both euthanasia and the culture of death come in, hence the tag.
And yes, the case of a court condemning a little boy to die against his parent’s wishes (he *will* die, but the court seems hellbent on deciding *when*) is pertinent to and a symptom of a larger culture of death.
jeanette
This situation is more than just parental rights being tromped on in whether or not they have the “authority” to make such decisions for their child: the love of the parents for their child is being tromped on in a way that says, “Your love doesn’t count in this decision” as though love does not enter into the rightful decisions that a parent will make for their child. The hospital itself does not have a love relationship with the child, so they do not count that aspect as valid at all. This is what Mr. Flynn is getting at, right?
When parents make decisions that are detrimental to a child, public officials (hospital staff, social workers, courts, etc) will step in and say they have the authority to intervene. If the treatment they were seeking which is experimental in nature would have some detrimental aspect, they would have an argument in that respect. Otherwise, it seems that they are overstepping their authority when they are determining (1) where this child may or may not receive treatment (i.e. once your child is in our hands, you cannot get out and go elsewhere if you do not like our delivery of health care to your particular child), and (2) whether or not the parents have a right to determine where their child will die (i.e. they are stripped of the option of bringing him home or taking him to a hospice setting of their choosing to create the kind of experience of death that they find to be most appropriate for their situation). So, aside from saying Charlie has no value anymore, in spite of the relationship value he has with his parents which cannot be ever measured by any outsider such as a hospital, he is denied the privilege of having medical treatment choices as well as the choice of where and with whom he is to be laying when he dies. This is not just Charlie, this is any person. I think those are two basic rights that ought to be respected for any human being. We should be free to say that we don’t like the care we are receiving and wish to go elsewhere and we should be free to say “thank you, but I wish to die at home (or this particular hospice) with my family.” We don’t just make those decisions for ourselves, we make them for and with those who love us. The hospital just doesn’t have that kind of love for us.
There is a point, though, that should be made regarding experimental procedures. There are limits to which we should view experimental treatments as ethical. From my recollection in this case, this is something that was considered and not deemed problematic. There are ethical concerns especially when someone else is making the decision for someone who doesn’t have the capacity to make the decision (i.e. minors, mentally disabled persons, temporarily incapacitated persons, etc).
A final point is that while the Church may teach that extraordinary means are not required to be taken, that doesn’t mean they cannot be taken, again with the caveat of the ethical nature of those means.
Perhaps some of the people making the decisions in Charlie’s case are either not parents or do not have the personal experience of loving someone who is suffering but otherwise experiences life in a meaningful relationship to others who love them, and in return the ones who love them have a meaningful experience. So it is a bias against cases like Charlie’s due to a lack of knowledge or understanding of the most basic elements of parental love or the incapacity to cope with and join oneself in solidarity to the suffering of others. In such cases, they ought to simply decline from being part of the decision making process rather than allowing their personal bias to drive the outcome.
There was not really a debatable point about the motives of the parents or the outcome for Charlie, so why the hospital decided it has the right to override the parental wishes is what ought to be questioned, not just for Charlie, but for all future decisions of this nature in that hospital. No parent ought to be summarily stripped of their rights without any justification. The hospital was not protecting Charlie from harm, and that is usually the justification that can be supplied for overriding parental rights with regard to decision making for one’s child.
Vanessa
I agree that the parents should have the right to use extraordinary means, even if it might not be in the best interest of their child, but we shouldn’t assume that the hospital’s motivation stems from a culture of death and that they aren’t trying to protect Charlie from harm. The court documents suggest that they were trying to protect Charlie from further pain:
“The Great Ormond Street Team [at the UK hospital] believe that Charlie can probably experience pain, but is unable to react to it in a meaningful way. Their evidence was that being ventilated, being suctioned, living as Charlie does, are all capable of causing pain. Transporting Charlie to the USA would be problematic, but possible. Subjecting him to nucleoside therapy is unknown territory – it has never even been tested on mouse models – but it may, or may not, subject the patient to pain, possibly even to mutations. But if Charlie’s damaged brain function cannot be improved, as all seem to agree, then how can he be any better off than he is now, which is in a condition that his parents believe should not be sustained?”
jeanette
You are replying to my comment, however I want to point out that I said nothing whatsoever about the “culture of death” but rather individual responses to suffering, so it is unclear why you mentioned that.
As for protection from pain? Many children are subjected to many procedures that are painful. Pain in itself is often inevitable in order for a good outcome, and there are different degrees of pain and different tolerances for pain. I didn’t read the actual transcript of whatever they are contending in that regard, but I don’t think that is a valid argument for interfering in the rights of parents to make a determination of what is best for their child.
Fortunately, the latest headline shows that there is new evidence being considered for the benefits that might be derived from the treatment that Charlie could be given. However, regardless of that outcome, the question still remains as to what justifies interfering with parental rights in this case. It is simply not justified. Parental rights have not been severed, so the parents have the primary right to make decisions, not to be overridden by a 3rd party who imagines they know better. They can certainly offer an opinion or recommendation, but the decision ought to rest with the parents. It is known as the principle of subsidiarity.
Laura
This is mostly exactly what I’ve been thinking: it’s not about end of life issue (and people are so confused about those ethics) – it’s about the State unjustly usurping parental rights. The headlines are absolutely outrageous on this. One thing I’d add is that many people/entities HAVE tried to “rush into the room” to save him, the hospital is just (wrongly) refusing the offers. And lastly, Jenny, would you mind explaining why you found the statement from the Pontifical Academy “ludicrous”? I thought their approach could have been more sensitive and clear, but I don’t remember anything being exactly ludicrous. Would appreciate your thoughts because the reaction I saw was insane. Thank you!
Jenny Uebbing
Laura, thank you for asking and for your comment. The statement from the Pontifical Academy for Life should have clearly illustrated the Church’s care for every human person and affirmed the fundamental rights of the parents to determine their child’s fate. The statement should simply have been to remind the world: it is the parents’ decision. If they have the means to seek treatment and the will to do so, let them be.
I hope that the Pope made his recent remarks because he too recognizes the error in the original statement.
Dr. Cajetan Coelho
God bless little Charlie and his loved ones.