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Score one for The State

The “greater good” evidently involves a lot more death and loss of liberties than the brochures would have you believe.

 

charlie gardThe parents of 11-month old Charlie Gard this morning announced that they were dropping their months-long effort to get experimental treatment for him.  Gard suffers from a rare genetic disorder that is usually fatal.   Doctors at Great Ormond Street Hospital for Children in London determined in February nothing more could be done for him and he must be taken off of life support. The parents, Chris Gard and Connie Yates, disagreed.    They wanted to take him to America to undergo an experimental therapy that a doctor had agreed to perform.  The parents raised over $1.75 million to pay for all this—including an air ambulance to transport the infant to the US. All they needed the British hospital do was to release their child into their care.  The hospital refused.  The case ended up in the European Court of Human Rights in Strasbourg, France.  Judges ruled the parents should be barred from taking their son to the US for treatment.

 

This morning, the parents agreed that—after an examination done by the American physician—that the “window of opportunity no longer exists.”  Of course we will never know if that window existed back in February when the original request was made.  The State made DAMNED sure of that.

 

“Mum and dad love you so much. We always have and always will, and we are sorry we didn’t save you,” Yates said today reading a statement to the court. “We had a chance and we were not allowed.”

 

This is a maddening and infuriating story.  NO ONE was going to be inconvenienced by the effort to keep this child alive.  The money’s in the bank.  Everyone was ready to take this chance, slim though it may have been.  Everyone except the doctors at the London hospital.  And the British Government. The parents were not asking the doctors to do anything they would be uncomfortable with.  They were simply asking that THEIR child be returned to THEIR custody so they can take one last stab at keeping him alive.

 

I have REALLY tried, since this case was made public, to NOT make it about socialized medicine and all that it implies.  But seeing responses from people today it appears people are defending the Government with an almost religious zealousness.

 

As for the chance of prolonged suffering…how so?  If the child is “brain dead,” as government supporters state, how would he feel pain?  If he WERE in pain, were doctors at the London hospital not properly applying comfort measures?

 

The bottom line is this.  It is obscene that Charlie Gard’s parents would have to ask their government for permission to treat their child.  THAT is the issue here.  The nature of the disease, his chances of survival—are mere intrigue.

 

I keep telling myself I will no longer be amazed at the lengths to which people will go to defend government power over the individual.  But there are far too many people who appear to be perfectly willing to override a parent’s right to do everything in their power to save their child; so long as that means that The State remains superior to the Individual.   It forces me to wonder what other basic rights they are willing to sacrifice at the altar of Government. How much more will they ignore in order to make sure their dream of an orderly, government-directed society is maintained?

 

Dramatic?  Yes?  Dogmatic?  Probably. Over-the-top?  I don’t think so.

 

And if you are an enthusiastic supporter of single-payer, government-directed health care…can you explain to me how such a thing could NOT happen here? What protections would be included in such a system to make sure parents have the ultimate say?  Do you *want* parents to have the ultimate say?

 

Very soon Charlie Gard will be dead.  Here is hoping that his death will lend a level of discussion to the debate we are current having here in the States on the nature of health care; and to the inevitable struggle between the Rights of the Individual versus The Collective.


3 Comments

  1. I do value what people call “common sense”. Unfortunately, dire situations sometimes require credentials and experience above what most people commonly can summon.

    “Gard suffers from a rare genetic disorder that is usually fatal.”

    The RRM2B-type of mitochondrial depletion syndrome is not “usually” fatal. It is 100% fatal. None have survived to age 2 who had it. The effects on nerve and muscle tissue are devastating, and there is no treatment for the condition itself, only palliative care options. Patients who benefitted from nucleoside therapy were all of the TK2 variety. Different gene, effects and prognosis. Some have survived into their early 20s.

    “As for the chance of prolonged suffering…how so? If the child is “brain dead,” as government supporters state, how would he feel pain? If he WERE in pain, were doctors at the London hospital not properly applying comfort measures?”

    We’re talking about an experimental drug therapy never tested on a patient with Charlie’s type of gene-based birth defect, nor even tested on mice. His brain may be too compromised to perceive pain, but he could still die jerking like an over-wound toy from seizures and muscle contractions caused by taking the drug, with liquified brain matter dripping out of his ears. I think his parents might feel some pain in that kind of situation. (Sorry to be so graphic, but I was a medical assistant and imaging tech in hospitals. Death from an incomplete “hail Mary pass” isn’t pretty.)

    It’s unethical in any country using modern medicine to subject a patient to untested drugs if there is no provable likelihood of benefit. That was as true months ago as it is now. The UK hospital was advocating for what is most beneficial to the patient, over and above allowing the parents to risk additional harm. That would have happened here too under our care system.

    He’s under a year old. The options for pain meds and comfort measures are very limited. He’s on a low dose of liquid morphine, which eases breathing difficulties. There’s no such thing as a heart-lung machine for individuals so small, so they must use a nasal cannula and trach tube with high-pressure oxygen, and suction out the mucous accumulations often. Since he has no voluntary muscle control he has to be repositioned every two hours to prevent skin ulceration and pressure sores. IV hydration and limited nutrients, because he’s also too small for a feeding tube.

    The sole reason the boy is alive at all today is because he got every assistance currently available from age six weeks when he first entered the hospital. But his syndrome is incurable under current knowledge. That is true no matter what health care system is in charge of his care. Incurable is incurable.

    If you are unfamiliar with the Kübler-Ross Stages of Grief, health care workers must regularly deal with the families of terminal patients going through them:
    1 – Denial. (A conscious or unconscious refusal to accept facts, information, reality, etc., relating to the situation concerned.)
    2 – Anger. (“Evil!”, followed by storming out of a court proceeding.)
    3 – Bargaining. (Ok, if we can’t take him to the US, can that doctor come here? Can’t we just take him home for the little time he has?)
    4 – Depression. (Sometimes called preparatory grieving.)
    5 – Acceptance.

    The stages don’t always go in that order, and some people skip some stages, but the end goal is always Acceptance (of a situation that is and always was inevitable). Charlie’s parents, and a good portion of the public, haven’t reached that stage yet. It takes the time it takes.

    Liked by 1 person

  2. I appreciate your obvious knowledge of medicine and the time you took to type out such a long and cogent reply. Seriously. I don’t see enough of this. 🙂

    To me, the statistical chances of survival are FAR less important than the fact that parents had to ask the Government’s permission to…be parents. To fight for their child.

    Yes, if parents are abusing a child then we as a society have the right to remove that child. But I set a VERY high bar for such things. And there is no evidence this treatment would have amounted to “abuse,” fruitless though it may have been.

    For me, this is about the power of The State vs. The Individual. In this case, the individual is the child’s parents. I fear we as a society are drifting in a dangerous direction. Once government is granted power, it is NEVER returned to the people.

    Again, thank you for the thoughtful response. We shall disagree.

    Like

  3. K says:

    Unfortunately, or Fortunately, depending on your viewpoint on the parental rights of ill children where medical decisions are concerned, this kind of thing happens all over. Including the United states. Single payer health care system or private pay. It doesn’t matter. http://www.healthfreedoms.org/exposed-boston-hospital-takes-custody-of-multiple-children-against-parents-will/

    Like

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