What can we learn from Charlie Gard?

Charlie Gard’s parents this week made the agonizing decision to turn off their 11 month old son’s life support system and allow him to die. I simply can’t imagine what that must be like, and we must admire their courage and their fight for the life of their child.

The case has captured the attention of press, public and politicians on both sides of the Atlantic, and showcased both the best of human nature (with the public raising over £1 million to send Charlie to the US for an experimental procedure that might have helped to improve his condition and prolong his life) and its ugly side (with vitriolic abuse and even death threats hurled at the staff of Great Ormond Street Hospital, where Charlie was being treated).

Petitions abounded and emotions ran high, but the issues weren’t as clear cut as some commentators tried to make out. In fact, the tragic situation provides a perfect case study for how to think about complex moral and ethical dilemmas. Before I get into that, though, here’s where I came to on the issue:

My position

My initial gut reaction to the tweeted headlines was ‘The courts are being unjust, and we must fight for Charlie to receive the treatment. His parents should decide about his care.’ But as I thought about it, read more, and in particular read a Twitter thread by Alastair Roberts, I began to reflect on the potential inconsistency of my response.

There are times when I don’t think the patient (or his or her legal guardian) has the ultimate right to decide whether they should live or die. There is a complex interplay between doctor and patient, where to a certain extent each is guided by the other, but as you’ll know if you’ve read much of my other writing, when it comes to issues like assisted dying, I believe a person should not be able to decide ‘I’ve had enough of life, I want someone to help me end it.’ In that instance I think personal judgement is being clouded, usually by fear of future suffering, though sometimes by existing suffering, and the person’s judgement is no longer 100% reliable. If you look at it one way, I’m saying that I want them to be helped to live, but it is equally true to say that I want them to be prevented (by law) from exercising their autonomy.

So too with little Charlie – I wanted him to be helped to live, but at the same time I felt that the judgement of his parents was clouded by their deep love for him, and therefore felt that people with greater medical knowledge and with heads and hearts less clouded by emotion should make the difficult decision.

I’ve no idea whether I am right or not. You might vehemently disagree with me, and I’m very thankful that I did not have to make this incredibly difficult decision. Because it’s very hard to see an obvious right or wrong here.

Who is right?

The first thing to realise with such issues is that they are extremely complex, and even top experts will disagree about what is the right solution.

As we think about such cases, it is important not to make snap judgements based on headlines or tweets, not least because this story offers sufficient scope for everyone to spin it according to their own narrative of how the world is. Was this a story of evil, callous medical staff and judges who think they know better than parents what is right for their kids? Was it a story of selfish, delusional parents who put their desires above the suffering of their child (Chris Gard and Connie Yates have also been victims of abuse throughout this case)? Or was it, perhaps, a tale of “federally-run healthcare systems” rationing care and seeking to “spare ‘the system’ a lot of headaches” (as this article suggests)?

Were the heroes the GOSH staff, who provided world-class round-the-clock care to this teeny child? The parents, who would stop at nothing to give Charlie every possible chance? The judges who, even after ruling that the experimental treatment offered no hope of improvement in Charlie’s quality of life, allowed more time, for Chris and Connie to find more expert opinions, and opened the doors of hope once again?

Depending on your worldview, you could make a case for any or all of the above. And I suspect that there are at least one or two of those that have the ring of truth for you, and one or two which you can’t imagine anyone seriously believing, and which you may even find offensive. But there are good people who really do strongly believe each of those perspectives.

Moral tastebuds

One thing I have been learning over the last year or so is how many different ways there are of understanding moral/ethical situations. Jonathan Haidt’s book The Righteous Mind was the first to open my eyes to this. In it he states that there are six ‘moral tastebuds’ at our disposal to help us detect whether a situation is right or wrong (and why). These are: (1) care vs harm, (2) fairness vs cheating, (3) loyalty vs betrayal, (4) authority vs subversion, (5) sanctity vs degradation, and (6) liberty vs oppression. The tastebuds you use to ‘taste’ or assess the situation will affect how you understand the story.

– Care vs harm: This frames the story as a struggle between different visions of what good care for Charlie would look like – experimental therapies or palliative medicine? The hope of an improvement in his circumstances or the compassionate end to his suffering? [Edited for clarification: The doctors’ argument was that this treatment was not in Charlie’s best interests, as it would more likely harm him than help him.]

– Fairness vs cheating: This asks whether Charlie was given a fair chance at life, or whether the authorities deliberately dragged their feet in order to prevent him getting the care that might have helped him. (This seems to be Connie’s perspective in her statement earlier this week.)

– Loyalty vs betrayal: This pits the love and loyalty of Charlie’s parents against the courts and authorities that were supposed to help them. It sees the Gard family as betrayed by the bureaucrats.

– Authority vs subversion: The fundraising appeal was an act of subversion against the doctors who held the authority. When those in power said ‘no’, the public rallied to ‘rescue’ the helpless child from their clutches. The petitions could also be seen as a subversion of authority; they rejected the findings of the medical experts and sought to go around them/above their heads.

– Sanctity vs degradation: This asks whether life is to be preserved at all costs, or whether attempting pioneering treatments actually degrades human value. Charlie was unable to consent, so would it be right to effectively perform experiments on him when they might cause him pain for very little gain?

– Liberty vs oppression: Charlie’s parents were not able to exercise their free choice. While boundaries on freedom don’t always constitute oppression (it is not oppressive for the law to say you can’t drive at 90 miles per hour through residential streets, for example), it is certainly possible to see Charlie and his parents as oppressed by heartless authorities.

So what’s the answer?

The answer is, there is no easy answer. We are in a position now where we are called on to make decisions that perhaps aren’t ours to make. Fifty, thirty, even ten years ago, this question would not even have arisen. As we improve our abilities to fight disease, we whittle away our sense of reliance on God to ‘give and take away’. In some ways we put ourselves in the place of God, yet without his infinite knowledge and wisdom, we are bound to struggle to know what is the right thing to do.

So how should we respond next time we hear of a case like this? [Some of the following will only be relevant to Christian readers, as I wrote this for the Think Theology website, but there are some things which we can all do.]

First, we can pray, both for healing for the child/patient, and for wisdom for the parents/guardians, medical staff and courts (if it gets that far). God is a God of power and of love. He can heal, if he so chooses, and he can speak words of wisdom into the ears of even unbelieving doctors, and of courage, hope and love into the hearts of family and friends.

Second, we can think before we react. Is it possible that there is another way of understanding the case than the one we are seeing? Is there a chance that we are wrong and someone else is right? Or that we are both right? How would Jesus want us to respond to those who seem to us to be on the wrong side? Is there anything we can do to help, comfort or encourage those going through the most painful of experiences?

Third, we can be informed. Read a range of newspapers/commentators, not just the one you usually do. Try to look past the emotive language to the facts. Try to understand which tastebuds are being employed, and see if you can find more nuances in the case by using other tastebuds. If appropriate, we can gently help our friends to see the other perspectives and to think more compassionately and generously about the situation.

And fourth, though perhaps this should have been first, we can be prepared. The way we respond in a crisis is formed by the groundwork we put in ahead of time. That’s why schools and workplaces have fire drills – panicked reactions lead to poor choices, but planned strategies lead to safe responses. Here are some ways you can start to plan:

– Think through what you think would have been the right response to this case and why. Does that fit with how you see other decisions about end of life care, medical ethics and disability/illness? As I mentioned above, because I have spent a lot of time thinking about these kinds of questions in recent weeks/months/years, I was able to notice how my initial, emotional reaction conflicted with my considered view. I tested the one against the other and decided my original view was the correct one, then used it to understand this case.

– Practice using the different ‘tastebuds’ – understanding how others see things differently can help us be more compassionate and can sometimes reveal aspects we haven’t thought of before.

– Read your Bible. If we want to respond how Jesus would in a given situation, and to see the world and its dilemmas as God sees them, we have to get to know him. Look at how Jesus treated the vulnerable while he was walking physically among them, look at what God says about the poor, the sick, the outsider, the rich, the powerful. Get to know what those who suffer have learned about God, and what he says about hope in the midst of despair. But don’t only read those parts, read the whole thing – it is all a revelation of him, and if we only read the bits that seem useful in the moment, we will miss the full glory of his character and nature.

I’m sorry this has been so long. It’s an enormous topic, and there are so many more things I could have said, but I hope this helps a bit as we wrestle with this terrible, tragic story.

One final thought – let’s pray for Chris and Connie, that God would meet them in their grief and that their relationship would be strengthened and not torn apart by their devastating loss.

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This post was published simultaneously on Think Theology

Photo by Daan Stevens on Unsplash