Observations On Britain’s Charlie Gard Ethics Fiasco

A recipient of Great Britain’s national health care, infant Charlie Gard was born with  a rare genetic condition resulting in what is probably irreversable brain damage.  He cannot move his arms or legs, eat or even breathe without a ventilator.

After 10 months of being kept alive, Charlie’s caretakers, the Great Ormond Street Hospital for Children in London, announced that it was time for Charlie to die. Chris Gard and Connie Yates, Charlie’s parents, wanted to take him to the United States to try an experimental treatment available here. The doctors at the hospital refused to allow them to take the child, and vetoed their decision, even though the parents had received sufficient funds from donations to pay for the effort.  In  the resulting lawsuit, British courts sided with the hospital. The parents then brought the case  to the European Court of Human Rights, which declined to hear the case last week. The previous court rulings that it was in Charlie’s best interest to withdraw life support and that the state, not the parents, got to make this life and death decision stood.

The  parents, Chris Gard and Connie Yates, appeared on a video this week,, sobbing and saying their son would be removed from life support at the hospital. “He’d fight to the very end, but we’re not allowed to fight for him anymore,” Gard said in the video statement. “We can’t even take our own son home to die.”

Initially, the hospital would not delay the fatal  disconnection of the child from life support so family members could gather and say goodbye. It has since relented.

Observations:

1. Welcome to the dark side of state-run health care, and if you can’t just nod and say, “That’s the way it has to be!” then I don’t want to hear any more blather from you about health care being “a right.”

2. Of course a state-run health care system can’t allow a doomed child to receive expensive around the clock care indefinitely. In fact, it was irresponsible to keep Charlie alive as long as the hospital did, if his condition was known at the outset.

3. Sarah Palin was viciously mocked and attacked for calling the government-reliant doctors and administrators who have to make these wrenching calls “death panels.” I particularly recall the televised sneers of Rachel Maddow and the text equivalents of Paul Krugman. They were lying. The only way national, single payer health care is even somewhat viable is with “death panels.” Anyone who denies that–inevitably misty-eyed progressives—is engaged in a con job.

4. In the British system, there was absolutely nothing unethical about the hospital telling the parents that it would not keep a terminal, brain-damaged child alive any longer. Nor would it be unethical to tell a family that their invalid, cancer-riddled, 87-year old mother could not receive any more care or treatment, even though she might survive for montsh or even years. That’s how national health care works and has to work.

5. However, preventing the parents from seeking treatment elsewhere that they would pay for themselves is a breach of basic individual rights and autonomy in any system. If the parents want to waste money on experimental treatment of their hopelessly ill child, that is their right. What’s the harm to Charlie? What does the court mean that dying now is in his “best interest?” He’s got one life, and dying is the end of life: it’s not up to the state to say, “your child is better off dead.”

Great Britain has nationalized Charlie, parenthood, and individual life, and that is ethically indefensible, as well as unnecessary, cruel, and a terrifying slippery slope.

6. In his ruling on the case in April, Justice Nicholas Francis of the Family Division of the High Court of Justice wrote that there was “unanimity among the experts” that the therapy could not repair structural brain damage. “Transporting Charlie to the USA would be problematic, but possible,” he wrote. “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?”

None Of Your Business, My Lord, you totalitarian ass. Let the parents pay to find out. Butt out.

7.  The Vatican, overseen, as we should recognize by now, by a Proto-Communist, released this jaw-dropping statement, siding with the government and against the parents. Bolding is mine, and I’ll break in using italics:

The matter of the English baby Charlie Gard and his parents has meant both pain and hope for all of us.  We feel close to him, to his mother, his father, and all those who have cared for him and struggled together with him until now.  For them, and for those who are called to decide their future, we raise to the Lord of Life our prayers, knowing that “in the Lord our labor will not be in vain.” (1 Cor. 15:58)

The Catholic Bishops’ Conference of England and Wales issued a statement today that recognizes above all the complexity of the situation, the heartrending pain of the parents, and the efforts of so many to determine what is best for Charlie.  The Bishops’ statement also reaffirms that “we should never act with the deliberate intention to end a human life, including the removal of nutrition and hydration, so that death might be achieved” but that “we do, sometimes, however, have to recognize the limitations of what can be done, while always acting humanely in the service of the sick person until the time of natural death occurs.”

Double talk! We should never act to intentionally end life, but sometimes we have to act to end life, like when we “serve” the sick person by taking away their means of breathing.

The proper question to be raised in this and in any other unfortunately similar case is this:  what are the best interests of the patient?

Wrong. The question is cases like this is “Who has the right and the power to decide on behalf of a patient who can’t decide for himself?” And the answer is: The family, as long as nobody else has to pay for it.

We must do what advances the health of the patient, but we must also accept the limits of medicine and, as stated in paragraph 65 of the Encyclical Evangelium Vitae, avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family. 

Who is “we”? This is a family decision. We, in this case, is the Church and the State telling parents what is best for their child. This isn’t  like the Christian Science cases, where the State properly prevents a family from refusing life-saving medical treatment on their child.. This is the opposite. The State is saying that the best course is for a baby to die, and the parents want to try something else. Well, thanks for your input, doctors, Great Britain, Pope, but we want to try one more thing, and you have no ethical basis under heaven or on earth to say we cannot.

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

Oh, they “must be helped,” eh? Translation: “They must be brought to heal by the all-knowing State.”

If the relationship between doctor and patient (or parents as in Charlie’s case) is interfered with, everything becomes more difficult and legal action becomes a last resort, with the accompanying risk of ideological or political manipulation, which is always to be avoided, or of media sensationalism, which can be sadly superficial.

In other words, just knuckle under to your betters, Chris and Connie. We have better things to do than worry about your brain-damaged baby. Stop wasting our time.

Dear Charlie, dear parents Chris Gard and Connie Yates, we are praying for you and with you.

Oh. Well then, not letting us decide the fate of our own child is fine and dandy. As long as you’re praying.

 

 

40 Comments

Filed under Around the World, Bioethics, Childhood and children, Ethics Alarms Award Nominee, Ethics Dunces, Government & Politics, Health and Medicine, Law & Law Enforcement, Religion and Philosophy, Rights

40 responses to “Observations On Britain’s Charlie Gard Ethics Fiasco

  1. Inquiring Mind

    The big lie of single-payer is that it will expand access to care.

    No, it doesn’t. The issue is still scarcity.

    There are only three things that single-payer changes:
    1. Who says, “No.”
    2. How “No” is being said.
    3. Who is being told “No.”

  2. Spartan

    Do you think we have death panels with Medicare? If yes, please explain.
    Also, if yes, please discuss whether or not Medicare should be eliminated because of these death panels. Because what liberal Americans want is simply Medicare for all.

    • Alex

      Yes. Medicare will not cover unlimited treatments for cancer. You get advanced cancer, you die. The decision has already been made by whoever wrote the coverage policy. Whether it should be eliminated has to be made in view of more criteria than the fact that it is not unlimited. Is it sustainable? Is it effective? Is it efficient?

    • Absolutely not true. I’m on Medicare. I have to pay extra insurance for drugs, and for stuff Medicare doesn’t cover. You want everyone to have Medicare AND for Medicare to cover everything, and when it does, YES, there will be death panels. There will have to be.

      • Spartan

        I didn’t say it would cover everything. I get that people on Medicare (with means) purchase extra coverage. That’s how it works in many other countries too. But I don’t see anyone screaming about “death panels” with Medicare — it’s only an argument brought out when there are discussions of expanding it to all age groups.

        • You aren’t that dumb, Spart. Think about what was just said: Medicare doesn’t cover everything. You can top up Medicare (if you have the money too.). Those things aren’t true under single payer, you are supposed to be covered for everything, and in the case of baby Charlie here, it’s obvious that their single payer system not only isn’t built to let the parents top up his care, it’s placing barriers in their way.

          no one says Medicare has death panels because it doesn’t: Medicare’s care is (theoretically) well outlined. It never promised the care it doesn’t offer. Single payer, however, is all about making promises it can’t keep. “Expensive cancer drugs? Palliative care? Experimental treatment? We can’t afford that. You can? Well fuck off anyhow.” This is a legitimate and glaring criticism with single payer.

        • You ducked the question. Medicare is NOT what universal single payer means.

        • That’s because when Medicare expand to all age groups it isn’t Medicare. That’s like saying giving everyone free food is just “expanding Food Stamps,” so what’s the problem?

  3. Regarding #5, the essential imprisonment of a person once they are inside the medical system:

    I wonder if such dictatorial control over a person once admitted (almost *inmate* like in quality) is an inevitable feature of socialized medical care, and not just a headscratching bug.

  4. Rip

    Unfortunately, there is no proper answer. If we wish for universal health care tough decisions are going to be made. As a truth I believe that care should never be denied and everyone should have access to the best care. THAT OF COURSE IS MY RELIGOUS SELF TALKING. I do believe health care is a human right, And as such the parents should have been able to take the child for the experimental treatment.
    But of course my practical self knows a government run or universal system not sustainable without people making desisions on what resources goes where. If we ever get a universal system in the United States,I predict there will be ways to opt out, if you can afford too. Most of us will be stuck with the mess the government decides on.

  5. Anyone advocating for single payer is a fool or a bald faced liar. Please let me share my ongoing story (I’m Canadian) of health care in Toronto. I badly fractured my tibia last November. I had to wait three days, from Friday to Monday before I saw an osteopath. My follow up care consisted of a 120 second appointment every 5 weeks. The few osteopathic surgeons are expected to treat 140 patients in a 8 hour Friday. I had been complaining of constant pain since the November surgery with no follow up. In late April I could no longer walk and an x-ray was finally performed. 4 out of 12 surgical screws had broken, at which point my original osteopath simply shrugged his shoulders and quit. I had to wait another full week to see a different osteopath. My second surgery was scheduled for May 19. 24 hours beforehand the surgery was cancelled and moved to June 19. After the June 19 surgery I was diagnosed with osteomyelitis, an extremely serious bacterial infection of the bone. I am now on 24 hour I.V. Vancomycin therapy, with a third operation necessary after that. I still haven’t been given an appointment time for a MRI that was supposed to have been performed BEFORE the second surgery: no MRI instruments were available. This is in Toronto, the largest richest city in Canada. In the smaller, less affluent cities things are worse. Much worse.
    When senior Canadian politicians like Danny Williams or Belinda Stronach get gravely ill they go to Cedar Sinai to be treated (of course they do). There are more MRI facilities in Pittsburgh than all of Canada (population 36 million).
    My point is: any politician who advocates single payer is LYING to you. You can bet your ass if Elizabeth Warren or Bernie Sanders had cancer they would not deign to set foot in a “public” hospital.
    My heart aches for those British parents. Please my American friends, resist the socialist lies.

  6. Mrs. Q

    When medical care is socialized, nihilism & scientism combine to control those who can be useful to the state & those who need to be eliminated from it.

    Dutch lawmakers are looking at a Completed Life Bill that would allow those 75+ in age to choose medical euthanasia. The lawmaker pushing the bill Alexander Pechtold said it would allow the Netherlands to…
    take the next step for our civilization.”

    And what step is that exactly?

    The Gard case highlights the dark workings of Marxism for what it is by defining life in terms of how much of a burden it supposedly is to others. That the “greater good” is better served when certain peoples lives are considered “complete.”

    Baby Gard, as Jack noted, cannot continue to be a financial burden in the context of socialized medicine because in such a paradigm, there are not enough resources to support all of those represented by it. Remember socialism ALWAYS promises more than it can ever deliver and always spends more than it has.

    I love it when people tell me how great the health care in France is, while many there complain the immigrants are a drain on the system because they have not put their money into it for years. Or Canada, where our friends cannot afford private insurance & go without certain medications & treatments because they’re not covered by state. Or Europe, where rates of Downs Syndrome are jarringly low because doctors have advocated so severely for abortion of these unborn, that in some countries it has literally been years since such a child has been born.

    It’s called eugenics & it will only get worse as we “evolve” to that *next step* Pechtold mentioned. How this stuff still isn’t seen as maniacal, genocidal, and homicidal is because of PR spin & appeals to “progress.”

    The UK stopping these parents from being free to spend their money & attempt to treat their child epitomizes the state over stepping its proper place in peoples personal lives.

    The other day I said to my wife “it’s almost as if babies are being sacrificed to Moloch again.” She said “Again? Not sure it ever stopped.” In a way she might be right.

    • Comment of the Day. Brava.

    • Great commentary.

      You know, I’ve heard the unprecedented support of abortion by the modern left compared to the canaanite sacrifice of their children to Moloch. I’ve felt the comparison apt, but lately, I don’t think so.

      The primitive pagans killing their children at a bare minimum thought they were appeasing a deity who would now withhold some form of wrath or appeasing a deity who would now ensure the crops of the community would be fertilized. So, as heinous as the murder of their children was, they culturally believed it would bestow blessing on their civilization.

      So then I rejected the comparison to Moloch, that the modern pro-abortion crowd was actually worse than those child killing pagans, that each modern individual killing their child was merely doing to advance their own personal comfort and convenience over the life of a human they invited into existence (with extremely rare exceptions where there was no invitation, yet the life still exists). How much more heinous to kill a child for selfish reasons than at least for the primitives who convinced themselves it would bestow greater blessing on the community.

      Then I again realize that a small cadre of Leftists DO make the argument that it’s better for the community to slay the innocent because it doesn’t impose further costs on the community should the child be born.

      So not only is it the same as worship of Moloch, it is also worse than.

      • Mrs. Q

        “Mankind is a cancer; we’re the biggest blight on the face of the earth… Phasing out the human race will solve every problem on earth, social and environmental.” -Peter Singer. Bioethics professor at Princeton

        “Among environmentalists sharing two or three beers, the notion is quite common that if only some calamity could wipe out the entire human race, other species might once again have a chance.” -Richard Conniff writer for Time magazine

        “Phasing out the human race will solve every problem on earth, social and environmental.” Dave Forman, Founder of Earth First!

    • John Billingsley

      Thank you Mrs. Q. A very thought provoking comment as is Ryan’s below.

      “Or Europe, where rates of Downs Syndrome are jarringly low because doctors have advocated so severely for abortion of these unborn, that in some countries it has literally been years since such a child has been born.”

      They not only advocate for abortion of a fetus with Down’s Syndrome but France actively intervenes to prevent potential parents from even learning about what having a child with Down’s Syndrome might be like. France outlaws ad

  7. 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.

    • Terrific post, and the Comment of the Day.

      • I for one am glad for Mrs Q and for Ryan, whether or not they’ve been long-time readers, to now recently become active commentators.

        • I’m grateful I found Jack’s blog. I greatly appreciate his analysis of events, and I’m also pleased to find that the commentary here is, as Jack has noted several times, a long step up from most of the commentary we find elsewhere in the web. I gain as much insight from Chris, deery, Spartan, slickwilly, texagg04, and so many others as I do from Jack.

          I actually came across Ethics Alarms when I was searching to see if there was a standard alarm rationalization (the reason to have the alarm, the consequences of ignoring that alarm, and the priority of the alarm) for a process alarm on some piece of equipment. Ethics Alarms featured 4th on the Google list. I’m sure no one could guess why Ethics Alarms would appear in a Google search with “alarm”, “rationalization”, and “pump curve”…

          That was only seven months ago. I’ve felt a little wary about poking my head into a thriving community, and I’m very happy it has been a welcoming group.

  8. JRH

    In the US, the closest we have to the U.K. National Health Service is the VA System. In the VA you go to a Government facility and are served by government employees, including doctors, nurses, bureaucrats and others. That system has proven to be a gigantic failure, although there are elements and pockets that provide good care, constantly battling the Bureaucrats. But you are essentially an “inmate” in the VA system. Medicare is more open and is basically just a payment system. You can to to any participating Doctor/Facility for care with your 20% financial liability and it operates fairly smoothly. However you will have to get supplemental insurance for catastrophic illnesses and this is where you put your life in the hands of the insurance companies. Neither system is perfect, but having experienced both I prefer Medicare. Actually I preferred the Medical Plans I had with my employer prior to the ACA, but the penalties on them were so severe they cut loose all us retirees to Medicare and ACA – so-called Cadillac Plans were crushed. Proving that that almost without exception when the Government gets involved, they manage to screw it up more often than not.

  9. Rich in CT

    This isn’t like the Christian Science cases, where the State properly prevents a family from permitting life-saving medical treatment.

    I am slightly lost. The state is correct to block a family from withholding treatment, or correct to allow the family to withhold treatment?

  10. Isaac

    I can’t work my way using logic into any kind of position that health care is a right. Based on what? Modern medicine costs insane amounts of money and requires that long hours be worked by brilliant and well-trained professionals. Why do I have a moral right to their services? Life? Liberty? Persuit of Happiness? Sure, those can be human rights. Those don’t constrain anyone else to provide me anything.

    Do I have a right to food? A house? A car? Medicine? Only if I can afford them. Forcing someone else (either directly or through the State, there’s no ethical difference) to provide me these things is a restriction of the rights of others for my benefit, something about which a good person should feel shame. I am denying someone else autonomy and freedom, partially enslaving them by appropriating their labor for myself without payment.

    I want to make sure that other people have food, medical care, shelter, and safety. We all want that. Since before the appearance of the first proto-hospitals (in monasteries), providing healing to the sick was seen in the Christian world as a charitable duty. That ethic is why it is today seen as obscene for a person to suffer uncared for. But let’s correctly identify that for what it is: charity. An act of mercy. A person who gets sick and dies without care wasn’t denied any moral rights. There is no injustice. Life comes with no gaurantees. We simply failed to have compassion on them, and that’s a shame, but a shame of a different kind.

  11. JP

    Seems the pope released a different statement

  12. I think the core problem that society is facing is that the intrinsic value of life is slowly but surely being lessened in our world. It seems to me that there are more and more people jumping on the bandwagon of defining life in a legal manner instead of a moral manner and if others don’t see this as a serious problem for future generations, then I fear for the morality of the human race.

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