Charlie Gard case – what it reveals about the ‘death with dignity’ movement

CP&S:    This report, from Fox News raising some very relevant points about the culture of death that appears to be gaining momentum both in the UK and the USA.

Please remember Charlie Gard, his parents and their legal team in your prayers as we await the expert opinion due early next week.

Image result for Charlie Gard

The case of 11-month old Charlie Gard is bringing out the worst in the “Death with Dignity Movement.” By appointing Victoria Butler-Cole, a death with dignity advocate, as the lawyer representing Charlie in court against his parents, the death with dignity movement has crossed the line from advocating for individuals’ wishes to projecting its views onto innocent children who are too young to have indicated that “death with dignity” is something they want.

Charlie Gard, an 11-month-old living in the UK, has an extremely rare mitochondrial disorder. An experimental treatment exists that has a chance—although a small chance—at recovering his muscle function and allowing him to have a happy life. His parents will be in court Thursday asking the court to allow him to receive this experimental treatment. His hospital and others argue that the treatment is too experimental—that it has only been tested in a lab—but the same hospital has used equally-experimental treatment before.

Charlie’s de-facto lawyer, Victoria Butler-Cole, once represented Lindsey Briggs in the High Court, who argued that her husband would have preferred to be taken off life support. Paul Briggs had not written a do-not-resuscitate (DNR) order. The court ruled to give Briggs palliative care only, and it was the first time that a court ruled to withdraw food and water from a clinically stable patient.

When did we decide as a global society that an infant would rather die comfortably than fight for his life? We didn’t. Charlie Gard is obviously fighting to stay alive, which indicates to me that he has the will to live.

Briggs’ case couldn’t be more different from the Charlie Gard case. In Briggs’ case, the individual’s closest relative testified that death with dignity was the individual’s will. In the case of Charlie Gard, in the case of a child, the individual’s closest relatives testify that the individual wants to live and that medical treatment is in his best interest.

It is hard to argue with a consenting adult who says they are in so much pain that they want to end their lives comfortably. Those advocating for “death with dignity” feel they act in individuals’ best interest by advocating for access to palliative care, do-not-resuscitate (DNR) orders, or euthanasia.

But in the case of Charlie Gard, the legal system has put Charlie Gard’s fate into the hands of the Death with Dignity movement. Individuals who believe that a comfortable death is more desirable to a life on a ventilator and medical treatment have been appointed to represent Charlie Gard. Furthermore, the court has put the burden of proof on Gard’s parents to prove that the treatment they want for their son is not harmful, that Charlie is not in pain, and that Charlie is growing like a typical child.

When did we decide as a global society that it is always better to die comfortably than to undergo medical treatment? We didn’t. As support for Charlie’s case grows around the world, as parents of children with similar conditions (and at least parents of one child with the exact condition as Charlie) advocate for Charlie’s access to treatment, it is evident that most people support hospitals taking every measure to save a life: that death with dignity should be the last resort.

And when did we decide as a global society that an infant would rather die comfortably than fight for his life? We didn’t. Charlie Gard is obviously fighting to stay alive, which indicates to me that he has the will to live.

Unless someone has written a do-not-resuscitate order, or their closest relative testifies that they prefer death with dignity, shouldn’t we continue with our initial assumption as a society that an individual prefers to live? Hospitals should do their job and provide every treatment possible to a sick patient or transfer a patient to a hospital who will.

The judge in Charlie Gard’s court proceedings Monday acknowledged that the Children Act of 1989 says the child’s welfare should be the court’s “paramount consideration.” If the death with dignity movement can convince a court that it is in a child’s best interest to be deprived of life-saving treatment and allowed to die without air, food, or water, then the future of our children’s health care as we know it is in dire danger.

Gia Behnamian is an independent writer and policy analyst in Washington, DC.

Photo: The Sun.

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15 Responses to Charlie Gard case – what it reveals about the ‘death with dignity’ movement

  1. Simon says:

    I have always believed that death is an event which should be allowed to happen naturally, not hastened by the withdrawal of treatment. By doing that, any society is setting itself on the road to what the Nazis did. God has given us the knowledge and skills to help other humans. Surely little Charlie should be given every chance we and God can give him.

  2. Simon says:

    Furthermore, the one basic right we all have, or at least should have, is the right to life. People, including lawyers and the judiciary ofeten seem to overlook this for whatever reasons they have.

  3. johnhenrycn says:

    Simon: I question, without actually opposing, your stance against “withdrawal of treatment”. We are morally obliged to never withdraw hydration and food (and, semble, pharmaceutical comfort) from people at the end of life; but I don’t think cessation of extraordinary or heroic measures to prolong life is always forbidden by Christian doctrine.

  4. Simon says:

    Whilst I take your point, johnhenrycn, I really fear that this whole issue may be the tip of a very slippery iceberg that may result in the ending of lives that are, whilst viable, may be ‘inconvenient’.

  5. johnhenrycn says:

    A slippery slope – or iceberg – there is. I have an extremely close and beloved relative (I’ve got many relatives – father, father-in-law, wife, sister, etc. – in or previously in the medical field) who once administered an overdose of morphine to a person on their deathbed. I’m being careful not to suggest an illegal act by that person.
    So nice to occasionally see people here who one can debate without being bored to death by them, which is a form of euthanasia.

  6. johnhenrycn says:

    “…bored to death by…”
    H/T in the general direction of Toadspittle, who whilst not unintelligent or insincere or trollish (hence my recent angry demand that he not be barred from this august website) is v. boring by reason of constant repetition of superficial objections to Christian doctrine. A good dog-walker he is, I think.

  7. kathleen says:

    A good summary of little Charlie Gard’s tragic case…. and some interesting, thought-provoking comments from Simon (welcome !) and JH…. ideas that are being much-debated these days.

    I can only say that from a mother’s point of view I am in total sympathy with the arguments of his suffering parents. If I were in their shoes, knowing that there exists, however remotely small, a chance my beloved baby could be cured, I would fight tooth and nail too for this experimental treatment to be given to him.

    Whatever happens, we must always say, with faith and trust in God’s loving mercy, that “Thy will be done”.

  8. toadspittle says:

    Might as well say,
    “…to projecting its views onto innocent children who are too young to have indicated that (for example Islam, Atheism, or Lutheranism – can’t think of any other examples) is something they want.”
    That is to say, we all do it. And so are in no position to throw that particular stone.

    However, I totally agree with the parents here. The will to live (which all babies, indeed all humans, have) is the most powerful force on earth. Every living thing is controlled by it.
    Look at the way weeds force themselves upbetween paving stones.

    And how can the treatment possiblybe “too experimental” in this case?
    What has the baby got to lose otherwise? His life.
    …Totally illogical.
    Then, assuming the treatment is permitted, God will either allow little Charlie to be cured – or let him die. Depending on how He feels, I suppose. His will will be done. Apparently.
    …A bit foo fatalistic for me.

  9. geoffkiernan says:

    JH relates how one or some of his many relatives ….all, one, or some with a medical background , administered an overdose of morphine to a person on their death bed….I ask, firstly was it a deliberate and considered amount of morphine to constitute an ‘overdose’ and secondly was the intent to alleviate suffering or to cause death? Was it to alleviate and/or control pain and of course to limit suffering or was it to end life? the former is a legitimate palliative practice and the latter an act of ‘murder’
    In the former instance death may still occur however because is was not accompanied by malicious intent to deliberately end life, culpability is lessened or even non existent. The intricacies of the internal an external forums dealing with intent are there for all to see. All in MHO of course. Intent is paramount
    It is a complex matter that cannot be dealt with satisfactorily in so short a discourse, because of so many variables.
    Assuming the decision as to the amount to be administered is made by one with legitimate and competent authority…

  10. toadspittle says:

    Either run my above comment, submitted about 10 hours ago, right now – or elsen just bleeding dump it.
    How difficult is that? Would a diagram help?

  11. johnhenrycn says:

    You’re too interrogatory for me today, Geoffrey; but I remember how much you’ve always been thrilled when I go completely off topic – so here’s a nice little number to perk up people in Perth 🙂

  12. johnhenrycn says:

    Sorry to interrupt, Toad:
    Geoffrey, might you have a relative who was once a semi-prominent Canadian politician by the name of William Kenneth Kiernan (born 1916) who died 20 years ago? He was a bit of a loose right-wing cannon, so I doubt that you and he share blood lines. No photos can I find, not even of his grave. GC probably can.

  13. geoffkiernan says:

    Either run my above comment, submitted about 10 hours ago or else I will spit my dummy ( I think you call it a pacifier) and simply go elsewhere…. That’ll teach those bums at CPS….Careful what you wish for Mr. frog

  14. Pingback: Charlie Gard: The Saga Continues | nebraskaenergyobserver

  15. JabbaPapa says:

    Charlie Gard has been granted permanent US residence, with his family, by the US Congress, with a purpose of attempting to save his life.

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