Tuesday, July 25, 2017

Rest of their bones

So, Charlie Gard.

Let me first say that, despite the existence of the European Court of Human Rights (or whatever it is called; I'm frankly too lazy to do the due diligence this story deserves), legally Charlie Gard's case would be the same in America as in Britain.

That is:  the courts would have been empowered to decide what was in the best interests of the child.  There are some perfectly ignorant comments at this Salon article about "single-payer" systems and even how "Government doesn't get to decide what the child's best interests are, you sick, self-righteous Commie."  But that's precisely what courts (government) do every time there is a family law case in court involving minor children.


The parents of Charlie Gard acted perfectly reasonably:  it is an impossible thing to accept that your child must die, especially within the first year of life.  Ironically, the very argument against abortions, that the fetus can feel pain, were the arguments by the hospital to discontinue Charlie's life support:  it was just prolonging his agony.  He could, the hospital argued, feel pain, even if he couldn't express or communicate his pain.  The humane thing is to let him go.

Which, by the way, is all the Pope and the Church in Rome ever offered:  easing his pain and allowing his passage to occur naturally.

This case was about the hard nature of life and the tough questions our technology raises.  It was not about euthanasia, or saving money, or "death panels."  It also wasn't about over-reaching government trying to deny parents the ability to treat their child as they saw fit.  It was, as it should have been, about the best interests of the child.  Just as we don't allow parents to abuse children, or withhold medical care from them (with rare and often foolish exceptions, like vaccinations), we shouldn't allow parents to refuse to let their children die when the time comes, simply because a machine can keep them breathing, or an experimental treatment can teach us something about experimental treatments (the danger of treating people like experimental subjects rather than like people is real).

The parents have finally accepted that their child will not live long, or be cured.  That is a very hard acceptance, and we should honor it and, if so inclined, pray for them in their suffering.  We should also consider how easily we turn people into objects, and use them for social experiments of our own.

The danger of treating people like experimental subjects rather than like people is real.  I've mentioned before a family member, dying of cancer, who agreed to an experimental treatment rather than disappoint the family and not "try everything."  This was in the days before hospice care, but that is exactly what hospice care is about:  not trying everything.  Later, everyone in the family agreed the experiment never should have been undertaken, that it wasn't worth the pain and suffering added to the loved one's days.  But accepting that even modern medicine is not magic, and that doctors are not priests and supplicants of the God Medicine (truly one of the "American Gods" Neil Gaiman should have put in his modern pantheon; but who would have appreciated it?), whose beneficence can be invoked with the right "treatment," is not something we are willing to do.

Because:  "What if?"  The thing about that "what if?" is that we don't ask it for the patient; we ask it for ourselves, the ones who know we aren't going to die.  It is the primary reason I oppose euthanasia, too.  Far too many people think the "easy death" will make things easier for....someone else.  Pain and suffering is not just something the patient has to live with, and wants relief from.  But on what grounds do we decide we are the god of death as well as life?  I'm reading this article at Slate and remembering when a "cure" for cancer was available in Mexico, from a substance derived from apricot pits (Laetrile; I almost remembered too late).  That was a cruel hoax, but probably no less so than interferon, which was supposed to be cancer's silver bullet.  The cruelty, though, is played on us by us.  As this Slate article notes, many of us think the FDA only approves drugs that are "extremely effective."  There is no such drug, of course.  I am resistant, for one reason and another, to most antihistamines and decongestants.  Some patients go into remission after chemotherapy; others, with the same cancer, die anyway.

But what if?

It is ultimately a spiritual question:  why should we die, and when should we accept it?  "My death; is it possible?"  No; anymore than the death of a child is possible.  I've buried other people's children, and after each funeral I never wanted to go through that again.  I've buried the adult children of friends, I've buried the infants of strangers:  one was no easier than the other.  God willing, that's as close as I'll ever get to burying a child.  It was perhaps easier to "memento mori" when people died so young and easily (John Donne lamented to a friend at one time that he had lost so many children he couldn't afford another coffin, yet if the child ill at the time he wrote died, it would relieve him of further expense.  He told death not to be proud because he saw too much of it.).  Donne is perhaps an example.  He wore his shroud in the pulpit as he preached, to remind himself of his own mortality (because he drew crowds, and needed the humility?  Probably one answer.)  But he wrote the most beautiful and paradoxical of his sonnets:  "Death, be not proud," which ends with the greatest paradox of all:  "One short sleep past, we wake eternally,/And death shall be no more, death, thou shalt die."  Perhaps death is easier to countenance when you can put it in the context of something other than the brutality of mortality.  In a different context, but from no less religious a writer, J.K. Rowling's tale within the tale about the three items owned by three brothers (the ring, the wand, the invisible cloak) ends happily for one brother, who uses his cloak to evade death and live a long life (IIRC), but in the end he "greets death like a brother."  I cannot now remember how it gets to that point, but I do remember the beauty of those words.

Perhaps, even now, the parents of Charlie Gard can take comfort at least in the time they had with their child, and in the time they have left with him, and take comfort too that, in the end, they did the best they could for him, to give him finally ease from his pain, and rest of his bones, and his soul's delivery.  Until all tears are wiped away, and mourning and crying are no more because death is no more, and pain is no more, because former things have passed away.

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