Tuesday, 25 July 2017

Au Delà Je Suis Charlie

One of the gifts - and curses, I suspect - of age and the passage of time is a certain creeping circumspection of things that we had not considered as young people. These days find a growing chorus of noise about artificial intelligence, the place of machines, and what is to become of human beings when our creations can outreach us.

I think a lot about what it means to be a human being; what defines our humanity, what rights does it afford us?

And what obligations as well?

Today is a significant day for our family, personally. 23 years ago I lost my father after a short battle with cancer. This is, as I have said before, the last year of my life that my dad will have been in it for more than half. (Next year, I will be 48, and my father, gone for 24 of those 48 years).

My dad battled his cancer as he could, attending radiation therapies, walking each day when he could to build his strength, and enduring a course of chaemotherapy. All, ultimately, could not help him. 

I've been somewhat casually (if I am being truthful) following the story of little Charlie Gard, a tiny little boy born in England last year, afflicted with a horrible genetic condition called "infantile onset encephalomyopathy DNA mitochondrial depletion syndrome." Little Charlie was apparently a normal, healthy baby when born, but who, a month later, began to display symptoms of weakness. He had difficulty lifting his head.

The disorder is a terminal one that rapidly depletes the mitochondrial DNA (mitochondria are, in layman's terms, called "the power plants of the cells"), resulting in initial weakness and eventual systemic failure. No curative treatment is available, though there are experimental therapies involving nucleosides that may prolong life and improve the prognosis.

Research is primarily in the USA, and funds were quickly made available through "crowd" and other sourcing to pay for the expenses of bringing little Charlie to New York. However, the law in the UK intervened - the doctors at the famous Great Ormond Street Hospital reckoned that the treatments, which are not curative, would not improve Charlie's quality of life. His parents disagreed, and the courts ultimately sided with the hospital.

Charlie would not receive the experimental treatment, and later, when his condition deteroriated, the Court again sided with the hospital (against the wishes of the parents) to remove life-support from the baby.

Today, Charlie is in the news once again - his parents, having exhausted their appeals, have asked to bring their son home so he can die there rather than in a hospital. Incredibly, the hospital again argues against the wishes of the parents, and the Courts once more will decide.

I confess that I do not know enough about the science involved to render an intelligent opinion of what, medically, is 'best' for Charlie. While I am not a medical doctor, I am a parent, and I can only imagine the horrible position his parents are in.

As a personal aside, during my wife's pregnancy with our son, at one point an ultrasound revealed potential "soft bio-markers" for trisomy-18, a catastrophic genetic condition that is prenatally fatal in more than half of all cases, and fewer than 1 in 10 infants survives to his first birthday. Our son was healthy in the end, but waiting the three days for further test results is, honestly, one of the most terrible times in my life. I am and will be eternally grateful that we were not forced to confront horrific alternatives.

As fate would have it, little Charlie Gard and my father share the same name.

It's, again, not my point to argue what the process in the UK is, or that the Court has made an error. 

But I am troubled, again, by questions of what defines our humanity. What obligation do we have to those who, literally, cannot speak for themselves? Who could be more helpless than a newborn? Who, more deserving of our protection?

I am haunted by the images I have seen of a robed, bewigged judge telling a mother and father that, no. Your child is not going to be allowed, despite your wishes, to be taken for an experimental treatment that may (but also may not) help him. 

Is little Charlie suffering? Would extending (or not?) his life further that? I have no idea - but I doubt that Mr Justice Francis does, either. I have a sneaking suspicion that part of the debate is with an eye towards allocating precious health care resources in resource-constrained environments.

In another context here, I read a French philosopher and ethicist called Chantal del Sol, state that motherhood is
...not the making of a baby in utero through the act of insemination.  A child is not a product, or a thing; it is not an object, but rather, a person.  That is why we have a word - procreation - to distinguish birth from say, a glass-maker or a manufacturer.

Human beings are not products. 

We hear a lot these days about this or that "right" that each of us does or does not have. I agree with some, but more often than not, what I hear are "rights" more or less boil down to "you have to pay for my choice to do X."

The most fundamental right we have as living beings is the right to live. What I feel is a real measure of our humanity is how we stand up for the voiceless. The truly weak.

I cannot help feel that, in this case, humanity did not perform terribly well on that test.

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