Charlie Gard: 3 Lessons Learned

Charlie Gard: 3 Lessons Learned July 24, 2017

Charlie Gard2I’ve spent a bit of time following the story of Charlie Gard this summer. First as covered by American news outlets and then, while on vacation, as covered by reporters in the United Kingdom.

As you might remember, Charlie Gard is the child of two parents seeking permission to travel to the United States in order to seek treatment for their son that is considered a last-ditch, extraordinary effort to save his life. The court said “no” to the parents’ request. The parents, in turn, appealed the decision, and in just the last hour it was just announced that Charlie’s parents are abandoning their efforts to obtain permission to take Charlie out of the UK. The most recent MRI suggests that Charlie is now beyond help and the physicians in the US who thought that they might be able to help are now reporting that they no longer believe the therapy would be effective.

The listening and the discussions that I’ve had with friends and acquaintances has been instructive. Certain things became clear, and not just about Charlie’s condition, his parents’ concerns, and the values that drive the courts.

I also learned a lot about what the church does and does not teach about the values we bring to a situation of this kind; the character of the reasoning that Christians bring to the conversation; and the inevitable inadequacy of public forums (including the courts) for resolving a debate of this kind for those of us facing analogous challenges.

Here’s what I’ve learned:

One: The church has failed to teach those around us what we believe about the lives that we have been given by God and, in many cases, the church does not seem to believe much more about our lives than any good humanitarian might believe. The complex grounding of moral choices in the will of God and the subtle valuation of our temporal lives as both the good gift of God and something far larger than this temporal life were all but completely missing from much of the conversation.

Two: Both the parents and the courts have been defended by Christians (ordained and lay). One group sided with the parents, arguing that any and every choice to preserve life is justified. The other side argued that “quality of life” is the decisive factor in choosing whether it is appropriate to continue battling an illness. Neither position accurately represents the Christian tradition and the fact that Christians are not aware of it should concern us all.CharlieGard

The former as an absolute value — i.e., the effort to preserve this life at all costs — is at odds with the Christian view of life. We are all mortal. The finite nature of this life and the conviction that death is the last enemy are assumptions deeply imbedded in Christian faith and conviction. And eternal life, which is both present and future possession is not about the duration of life, but about life in God.

That said, “quality of life” as an absolute consideration in terminating or continuing medical care is equally foreign to the Christian moral tradition. Life is the good gift of God. All men and women are created in the image of God. We are called upon to care for everyone and both the pain and limitations associated with life — while they can be excruciating — are a secondary consideration.

Three: Faithful decisions, then, to continue or terminate care in any given case, is a complex matter that cannot be parsed by legislation or laws and devoted people will arrive at very different decisions. We cannot and should not try to lean on the courts or on legislative bodies for whom Christian values are, by nature, of secondary importance to them. And we cannot erase the occasions where we may feel that the people trapped in those difficult decisions either “gave up too easily” or “tried too hard.”

The end of our own lives and the lives of those we love take us into the thinnest and most challenging of places we will navigate in the course of this part of our journey. It can be messy, ragged, and marked by struggle, missteps and mistakes.

What the church can and should do is draw on its own God-given wisdom. Closely examine the extent to which its values have been informed by considerations that may or may not cohere with that wisdom. Do a better job of passing that wisdom along to each new generation, if possible, before people are confronted with the kind of decisions that Charlie’s parents faced. And we need to learn how to support and care for people navigating those difficult choices, even and — perhaps, most importantly — when we might not agree.

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