I’m sure that by now most of you have heard the tragic story of little Charlie Gard. The medical and legal battles surrounding 11-month old Charlie have brought global attention to the meaning of life and the proper dignity of death. More specifically, the swirl has centered on the question of who determines the value of human life and who bears the burden and responsibility for making end-of-life decisions. It seems the legal maneuvering and skirmishes for temporal control of Charlie’s destiny will soon be over. The dust will settle and we will soon begin to forget. As tragic as Charlie’s physical situation may seem to be, a real tragedy will result if we do forget and fail to learn. In this blog I would like to offer some personal commentary and observations in the case of Charlie Gard – as testimony to his precious life and its immense value.
Quick Case Summary:
Charlie Gard has severe brain damage – doctors say he cannot see or hear or breathe for himself because of an extremely rare condition (~20 cases known worldwide) caused by a faulty gene he inherited from his parents. Needless to say his situation is seriously grave and Charlie is in critical condition. Charlie is a British citizen and as such is under the umbrella of the British “socialized” health care system.
As a human society, we owe all mankind our best effort to provide effective and affordable health care. To be sure, easier said than done due to the complexity of the opposing forces of humanity, medicine and economics. I make no claims of expertise as to how best provide such health care and I am not criticizing the British system – that is not the point of this blog. I won’t get distracted in debating the possible merits, shortfalls, costs or agendas of any particular system. What I want to explore is the moral side of healthcare, in particular, the end of life issues.
By all accounts that I can read, little Charlie was provided with adequate health care by the British system, and that is good to hear. However, the dilemmas began to surface as the seriousness of Charlie’s condition became clear. He was being treated in the Great Ormond Street hospital but eventually those doctors and administrators decided that the proper decision for Charlie’s well being was to terminate all external life support, keep him comfortable, and let him die naturally.
Now at this point I can see the position of the medical providers. In practical terms there are limited resources to treat people. In Charlie’s case, how could they justify the continued treatment in Charlie’s “hopeless” case? Wouldn’t it be more humane and prudent to use the limited medical resources available to treat those others that had better chances of survival and quality of life? Seems reasonable on the surface but the issue turns out to be much more than altruism, money and medical resources.
Charlie’s parents, Chris Gard and Constance Yates, disagreed with the hospital decision and took action. They wanted to bring Charlie to America to undergo an experimental treatment which they believed could at least slow the disease. But experimental procedures are expensive (the British health care system denied coverage of this procedure) so the parents started fundraising in Charlie’s behalf. They eventually raised nearly $2 million dollars for Charlie’s treatment. Okay, so far so good you might say. The hospital did what they had to do as good stewards of the medical system and Charlie’s parents did what they had to do in giving their son the best odds of life, no matter how slim.
Astonishingly however, the hospital refused to allow the parents to take Charlie for the treatments in the United States – and the legal battles began. The case found it’s way up through the various British court systems which eventually found in favor of the hospital. Charlie’s parents would not be allowed to take Charlie for any treatments. As of this writing, it seems like the courts are reconsidering their ruling but in all honesty, that is besides the point.
To be fair, I have empathy for the doctors in this situation. I don’t consider them to be ruthless or heartless in any way. I believe they are genuinely motivated by Charlie’s best interests but in this case their intentions of good served to create more unnecessary suffering for the family. The medical professionals overextended their role as medical providers and falsely assumed the role of responsibility for Charlie’s care. Charlie’s parents were facing gut wrenching decisions. How much is enough? When do we stop believing in miracles? How do we deal with the possible guilt of ending life support even if a billion to one chance remains?
I for one have experienced that exact decision in the cases of my mother, father-in-law and sister. The team of medical doctors offer expert advice but ultimately this decision must be left to the family, and in this case, Charlie’s parents. Life sometimes kicks you right in the gut and it hurts. When faced with such decisions, we must fall back on our faith, our love, common sense and the advice of the medical experts. Advice, yes but the ultimate decision MUST remain with the parents.
[Some of you might bring up the case of parents that withhold medical care of their children, standing on a particular religious belief. For example, it is true that Jehovah’s Witnesses believe that the Bible prohibits accepting blood transfusions even if it places their child in grave danger. In this case it seems to me that the government is justified to intervene on behalf of the child. The action of the blood transfusion is more consistent with defending the sanctity of life than the religious beliefs of the parents. This JW example is actually very dissimilar to the case of Charlie Gard, because Charlie’s parents were fighting to defend his right to life by taking action and the courts were advocating inaction that would lead to death.]
The case of Charlie Gard is tragic on so many levels. The suffering of such a young innocent child tugs at our inner soul. The agony of the parents facing the loss of their little one is too easy to imagine. And we must also remember the health care providers, certainly motivated to care but unable to work miracles of medicine or money.
Only God knows the final outcome of the battles of British law and Charlie’s medical ailment. Both will be revealed soon enough.
In the mean time we need to remember Charlie as a champion of family life. In his short time on earth Charlie taught us that the health of society is based on the health of the family. Let the medical doctors provide care and let the courts rule on law, but let the family rule on life.
Unable to utter a word, Charlie Gard yelled out the message that his and every life is precious and has infinite meaning. Charlie was God’s little messenger, specially created and sent.
Thanks Charlie for the reminder. Your life was perfect. I won’t forget.