Stop the Killing of Charlie Gard! Disabled English Boy Awakens the Conscience of the World

This is an undated hand out photo of Charlie Gard provided by his family, at Great Ormond Street Hospital, in London. The parents of a terminally-ill baby boy lost the final stage of their legal battle on Tuesday, June 27, 2017, to take him out of a British hospital to receive treatment in the U.S., after a European court agreed with previous rulings that the baby should be taken off life support.

By Deacon Keith Fournier Published on July 6, 2017

Charlie Gard is an English boy deeply loved by his mother and father. He also seems to be awakening a sleeping giant: the conscience of the Western world, waiting and watching to see if he dies, and, asking why.

Charlie was born last August with a rare and disabling disease that induces seizures and causes him great difficulty breathing on his own. He may have suffered injuries to his brain. For the last ten months Charlie has been living in a London hospital. His parents have never left his side.

In March, his doctors told his parents they should remove his ventilator, an act which would actively kill their child. His Mom and Dad refused, as any loving parents would do.

They want their little boy to receive a promising new treatment available in the United States, one that could possibly repair his genetic malfunction. They want Charlie to LIVE!!!

 The Failure of the Courts

But England’s courts and the European appeals system have decided three doctors at the hospital know better. They are denying Charlie’s parents the right to continue to care for him.

Their decision is based on a dangerous doctrine called “proxy consent,” which allows patients considered terminally ill to be disposed of by medical personnel. Thus these judges, along with three doctors, have denied his parents the right to take their little boy to the United States for care, or to take him home to die naturally.

It isn’t a matter of money. Charlie will cost the state nothing: Funds to care for him have been raised in a major campaign online. Pope Francis has reached out, offering a Vatican hospital to care for him. President Trump has also offered assistance.

God bless them both. Maybe it will bring them together.  Their response offers hope. They should work together for Charlie. 

 Judicial Power Abuse

But the answer so far is no, for the English and European Courts have determined that Charlie’s life has no value. Yes, I said it. They want to put this baby boy to death. 

It reminds me of another tragic situation from 2008, the Terry Schiavo case. The courts awarded the right of proxy consent to one member of her family, over the valid and impassioned objection of another family member. She was denied food and water, and died. The courts’ stated reason for the decision was the closeness of family relation, but many, myself included, have wondered whether it was really about one judge’s position on end of life issues.

Now we’re seeing another serious abuse of raw judicial power. The courts have set aside Charlie’s parents’ rights to care for him, and they have rejected the possibility of better care for him in the United States.

The Danger of Proxy Consent 

Health care providers encourage proxy consent set up in carefully drafted documents such as Durable Powers of Attorney for Health Care, Medical Proxy Declarations and Advance Medical Directives. Many are helpful. Too often, though, these end-of-life documents define medical nutrition and hydration as extraordinary medical care. In other words, it’s okay to stop giving food and water to the disabled. Judges will not intervene.

Medical professionals often pressure family members to withdraw nutrition and fluids, resulting in their loved ones’ death. In this case, though, the family has been cut out. The state has rejected his mother’s and father’s natural right to care for their son, and given Charlie’s doctors the authority to kill him.

Learning from the Past

Prompted by the Schiavo case, the Pontifical Academy for Life and the World Federation of Catholic Medical Associations issued a joint statement which addresses the misuse of proxy consent. It includes the following caution:

“We acknowledge that the dignity of every person can also be expressed in the practice of autonomous choices; however, personal autonomy can never justify decisions or actions against one’s own life or that of others:  in fact, the exercise of freedom is impossible outside of life.

This concept of “proxy consent,” though routinely accepted in most circles, is based on a view of personal freedom of choice which too often stands at odds with the truth of the good of all human life, and what we owe one another as human beings. 

It should be dropped as a sole basis for making beginning or end of life decisions. In the case of little Charlie Gard, the state should defer to his parents. Children are not state property.

Disabled children should be loved and cared for, not killed. That includes Charlie. Save Charlie!

 

Print Friendly
Comments ()
The Stream encourages comments, whether in agreement with the article or not. However, comments that violate our commenting rules or terms of use will be removed. Any commenter who repeatedly violates these rules and terms of use will be blocked from commenting. Comments on The Stream are hosted by Disqus, with logins available through Disqus, Facebook, Twitter or G+ accounts. You must log in to comment. Please flag any comments you see breaking the rules. More detail is available here.
  • I feel sorry the little child and his parents. I feel even sorrier for over 20 million Americans who are going to lose their health insurance under the current AHCA.

    • samton909

      Don’t feel sorry, gay Chuck. 15 million of those people did not want to buy health insurance in the first place because they did not need it. Try not to spread disinformation in the future, OK?

  • Kathryn Rose MacDonald

    This is a horrid situation. It is infinitely easier–and even more dangerous– for us, on the outside of the immediate situation, to pass judgment and make assumptions from the relative safety of our own armchairs. We do not have all of the information. It benefits us to keep foremost in mind there is always more to a story than what winds up in print or on telly.

    As cruel, and heartless, and despicable as it is, death is part of life. Sometimes as hard as it is to do, as much as we hate to do it, and as much as it sickens us to have to, sometimes letting go of someone IS loving them.

    The medical personnel and the courts involved have all the information. They’ve reviewed it and they’ve determined that further treatment will not benefit little Charlie. That means it will only prolong this most gut-wrenching situation………..for both Charlie and his family. What the parents so desperately want, what we all so desperately want, is not in Charlie’s best interest. And it is heart-breaking, there is no way around it. Nobody WANTS it, it just is what it is.

    They are where they are, the situation is what it is, there is no way around, and the only way out of it is straight ahead through the most painful part. And it sucks great big giant Pterodactyl eggs. No amount of good will or petitioning will change what is to come.

    There reaches a time to end the torment for everyone, especially for those who will be left behind. Sometimes it takes outside intervention to do that. It is neither rational nor reasonable to demonize those who are either called into or forced into that role.

    • Jennifer Hartline

      Wrong, Kathryn. You don’t know that what Charlie’s parents want is not in his best interest. What a presumptuous conclusion. The fact is, it is impossible to know whether the new treatment they seek for Charlie will help him or not, unless they TRY. The court and this hospital refuse to even allow the possibility. The ONLY thing they will allow for Charlie is death.
      It is not their right to decide this! Charlie’s parents have the God-given right to try a new treatment for their son, if there is hope that it may help him. And there IS hope. There is no way to know for sure unless they try.
      How in the world can these judges and doctors object to TRYING? It is sickening that the only thing they want for Charlie is his death. It’s not for any group of doctors or judges to decide “it’s time” to “let go.”

      • Kevin Carr

        Jennifer, you are correct. This is nothing but a death panel that comes with socialized medicine. Sarah Palin was mocked for it, but the ACA does have death panels and we don’t know if the GOP addressed that. This kind of thing comes with universal care when “shock of shocks” it costs more than we thought, now we have to ration the care. Charlie has the means provided to him the court should not take that away from him or his parents.

      • Wayne Cook

        Well said, Jen.

    • samton909

      It is kind of pathetic when people blindly trust the experts. Well, guess what? Just yesterday the experts announced that maybe the treatment might be worth doing. Now they are changing their mind. Now new evidence came to mind. So you see, it was a failure of a heartless, money driven system of socialized healthcare that insisted on turning off the ventilator because some “experts” think they know everything. It was a failure of a system that really did not want their decision challenged. It was a failure of doctors thinking they know best in every situation. It is refective more of a throw away society that has increasing disrespect for the weak, the disabled, and the powerless.

      It is nothing less than totally disgusting that the government would not let his parents bring Charlie to the US for treatment, at their own expense, because those heartless doctors thought it would be better for Charlie to die. That is just sick and twisted, and if you cannot see that there is no hope for you.

  • woundedpig

    As a conservative Catholic convert and retired pediatric intensive care physician with 35 years of experience and a long history of helping families in end of life situations, I find several inaccuracies in this article:

    As an infant Charlie had to be placed on a ventilator due to muscle weakness. At this point, months later, he is completely dependent on a respirator, requires frequent suctioning of his airway, and would not survive for very long off the ventilator.

    There is no doubt that Charlie has suffered (not “may” have suffered) severe brain damage. His genetic affliction hampers energy production in the most metabolically active tissues, like the brain and muscles. That means every brain cell is affected, and brain growth was hampered, because that takes high levels of energy production. In these conditions, the brain substance dissolves away. leaving cystic fluid spaces. This brain damage has been evolving all these months. I know this, because I have seen it.

    Removing the ventilator in a terminal illness is not actively killing the patient. It is allowing natural death to occur. In an end of life setting, any action which ineffectively prolongs life and heartbeat can be termed heroic. Continuing all of the intensive care procedures that are possible is tantamount to taking the end of life decision out of God’s hands. We would all do well to go to the Catechism and JP II’s writings on the end of life to better understand Catholic teaching on end of life and natural death. The Catholic moral tradition does not oblige the use of medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to their expected outcome.

    I don’t think people in general understand that the mindset of pediatric care providers is quite different from that in the adult world. The attitude is to go 100 miles an hour at 110% effort, even if things appear hopeless. Only after much time has passed and the staff have reached a consensus that there is nothing left to offer but a peaceful death will the family be approached about end of life decision making. All along the way the family is informed of the reality of the situation, so broaching an end of life discussion is not a surprise. Often it is in fact the family that approaches the bedside staff with the question – “Is it time to let go?”. Great Ormond Street is one of the finest pediatric care institutions in the world.

    The decision of the courts was not that Charlie’s life has no value. That is not a fair statement. You should search out the full statements of the court and the statement by the UK Anscombe Bioethics Centre to see what was really said.

    The Gard case has little similarity to the Schiavo case, where food and water were denied to a patient whose death was not imminent. She was in custodial care, but not on any type of advanced life support. Life is not to be thrown away out of inconvenience, like it is with abortion and euthanasia. The Gard case is so entirely different, and so many people pontificate as if they understood the complex medical situation.

    You describe Charlie as disabled, and perhaps in your mind you are picturing someone with severe Down’s syndrome, mental retardation with physical handicaps, muscular dystrophy, etc. Charlie is much worse than that. Do you wonder why all the pictures of Charlie in the articles are from early infancy, and not as he appears now? With the extent of brain injury that he has, he is unconscious. It is true that he probably does not feel pain, but do you understand how sick it is to say that Charlie is not suffering because he is unconscious? Have you forgotten that dignity is also a Catholic value? We talk about dignity at the end of life for the elderly, but why not in infancy? Charlie requires complete and total care to sustain his life. Respirators, suctioning the airway, feeding with a tube, bladder drainage catheter or squeezing the bladder to empty it, manual extraction of stool. etc. Without the respirator, Charlie would soon die. How do I know? Because I have cared for patients exactly like Charlie.

    We are used to advanced directives in the elderly, but Charlie cannot speak for himself and has stated no preferences. We only have the hope that the family is capable of making the most loving, compassionate decision that they can in the best interests of their child. When a cure is not possible, all that we can offer is a peaceful natural death.

  • woundedpig

    I hope that this, my third attempt to post, is not censored simply because I present another point of view. I am very staunchly pro-life and pro-family, but when it comes to end of life decisions, there is rich Catholic teaching and tradition that is being overlooked here.

    I am a vociferously conservative Catholic convert and retired pediatric intensive care physician with 35 years of experience and a long history of helping families in end of life situations. I can tell you from what I see from the outside that somewhere along the way, the relationship between this family and the hospital staff went off the rails. With that said, I have taken care of this exact patient a number of times, and I can tell you also that the general public has no clue about this little boy’s condition. His disease affects energy production in the cells and affects the most metabolically active organs the most, such as the brain. The brain degenerates, literally melts away and the patient becomes completely dependent on intensive care support. While some say since the baby is unconscious, there is no suffering. I say this is crass and ignores the Catholic core teaching on dignity.

    Removing the ventilator in a terminal illness is not actively killing the patient. It is allowing natural death to occur. In an end of life setting, any action which ineffectively prolongs life and heartbeat can be termed heroic. Continuing all of the intensive care procedures that are possible is tantamount to taking the end of life decision out of God’s hands.

    We would all do well to go to the Catechism and JP II’s writings on the end of life to better understand Catholic teaching on end of life and natural death. The Catholic moral tradition does not oblige the use of medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to their expected outcome.

    The Gard case has very little similarity to the Schiavo case, where food and water were denied to a patient whose death was not imminent. She was in custodial care, but not on any type of advanced life support. Life is not to be thrown away out of inconvenience, like it is with abortion and euthanasia. The Gard case is so entirely different. There is a definitive terminal diagnosis.

    We are used to advanced directives in the elderly, but Charlie cannot speak for himself and has stated no preferences. We only have the hope that the family is capable of making the most loving, compassionate decision that they can in the best interests of their child. Unfortunately, there are many settings where parents have great difficulty making decisions in the best interests of their child – in this case, guilt from the child’s inherited genetic disease. The parents feel at fault, just as if through negligence a toddler suffers a drowning incident in the family pool. It is a terrible psychology for the parents to navigate through, but should parental guilt be the main driving force in the parents’ decisions about care?

    When a cure is not possible, all that we can offer is a peaceful natural death.

Inspiration
The Strangely Mysterious Beauty of Christmas
Tom Gilson
More from The Stream
Connect with Us