The myth of the irrational parent

Will parents really do anything to save their child?

This article by Zoe Williams in the Guardian today is just another in a long line of articles about the case of Charlie Gard saying exactly the same thing.

The accepted message is:

• The doctors are dispassionate and able to accept that the child is desperately ill and there is nothing to be done.
• The parents are desperate to save their child at any cost, will do anything at all to save him and are behaving in an irrational way; however this is okay because any parent would do the same.

I think the question is, would they? How many children die every day? How many children have treatment withdrawn from them? How many parents do you know of who have ended up in the European courts? I can count them on the fingers of one hand.

The perhaps rather hard truth is that most parents will not  do everything to save their child. In fact, some loving, caring parents will not do very much at all. In my time around the parents of children with severely life limiting illnesses, I have encountered parents who will not so much as write a letter to challenge the decision not to offer their child heart surgery, who will not so much as make a fuss when their very sick child is denied admission to PICU. I have seen many parents make the decision not to pursue further treatments for their child on the advice of medical teams without researching it further themselves and many, many more who have made the decision to withdraw or withhold treatment because they believed it would cause their child suffering without sufficient gain.

Charlie Gard's parents are exceptional. Exceptional in that they are pursuing treatment in the face of an extraordinary level of opposition; exceptional in that they are prepared to go back to court again and again to get the treatment they think is right for their son; exceptional in that they will go so far to attempt to save their child's life.

So if we accept that most parents in fact won't and don't do everything to save their child: are Charlie Gard's parents also just exceptionally irrational, exceptionally deluded? As a parent described by our medical teams as ‘irretrievably impossible’, I imagine that is how they are perceived by the people caring for their son. But I doubt it is how they actually are.

The message in articles like the one above is that the medics and the courts are right and the parents are wrong. Our own palliative care consultant (in perhaps one of her most honest moments) told another doctor that she thought we wanted Rumer to suffer – and that is what most people think these parents want for their son: suffering for their own benefit. Few will come out and say it, but it is heavily implied: these parents want to save their son at his own expense.

Do they? Or do they simply disagree as to what is in their child's best interests? What writers like Zoe Williams and the many lay people who call out either the parents or the medics (and indeed, all too often, medics and judges themselves) fail to recognise is that there is no right and wrong in a case like this. There isn't even a definite answer as to what is in Charlie Gard's best interests. The court isn't giving a definitive answer: it isn't guilty or not guilty, right or wrong. It is an opinion, not a final answer.

The likelihood is that Charlie Gard's parents are acting in what they perceive to be his best interests, as are the medics, as are the courts. It is more than possible that they have different values than the medics and the courts. For example, research suggests that medics perceive those with profound intellectual disabilities to have a significantly impaired quality of life, simply by virtue of the fact of their disability. However, parents and carers of those with profound intellectual disabilities perceive the impact on quality of life to be far less.

In a case like that of Charlie Gard, these value systems collide heavily. Medics are far less likely to see survival with long term intellectual disability (a best case scenario for treatment) as being ‘worth’ any suffering at all. Some parents however, feeling that quality of life is not impaired is or more mildly impacted by intellectual disability, may see a moderate to high amount of suffering to be ‘worth’ it for survival. The question of course is how would the child, unable to communicate his view, see it? Research among those with more moderate intellectual disabilities suggests that they perceive their quality of life to be considerably better than their medical teams do. They perhaps would take a different view on how much suffering is acceptable to ensure survival.

Medics and parents may also differ in their beliefs around what constitutes futility. Different parents  will have different views on what is a ‘good’, or ‘acceptable’ chance of benefit. When we argued that treatment would improve Rumer's chances of survival from 8% at 12 months to 25% at 12 months, we were arguing that, to us, that was a chance worth taking. Most of the medics – including those who were supportive – felt they would not themselves choose treatment for that chance. Many parents have also made a rational decision against treatment because they feel 25% is still too low a chance to opt for the inevitable suffering of treatment.

What would you do if you were told that the chance of your child's survival was 1%; that there was a 50% chance your child would have profound intellectual disabilities if they survived, but that the treatment involved no suffering? What would you choose?

Would your choice be different if the treatment involved minimal suffering? What if it involved significant suffering? What chance is worth significant suffering for you?

If we asked 100 people these questions, we would get 100 different answers.

In a case like Charlie Gard's, we have got an exceptional circumstance where perhaps 99 out of 100 people would not opt for treatment. But the one that would: are they wrong? Or do they just have a minority opinion? Is it always irrational to have a minority opinion? Is it always wrong?

Also, remember that we are not dealing with such numbers. When we were expecting Rumer, we were asked what chance would be worth it for us? But of course there are no numbers; no answers like this. Suffering, too, is not quantified in numbers and is also a matter of opinion. Charlie Gard's parents and his medical team clearly differ in their views on how much suffering Charlie is enduring. The outcomes of treatment are rarely so certain as to be a 1% or 10% or 100% chance, especially with experimental treatments.

So if we accept that in intense disagreements we are simply dealing with different values, different beliefs, rather than right and wrong: who should make the decision? There are those who believe that medical teams should have the ultimate call in all circumstances, to the extent they should be able to apply DNR orders to children without their parents' knowledge or consent. There are those who believe (and are vocal on the subject) that parents have ultimate rights to make the decision for their child, in all circumstances, including those where the child will die: for example, when a parent refuses a life-saving blood transfusion for a child.

I can see the merits of that argument. However, we have decided in this country to opt for the ultimate opinion of a court. For a judge who does not know the child or parents or (hopefully) the doctors personally, to take into account all the evidence and come up with an answer. To state what ‘is in the child's best interests’: and that is carried through. There is a system of appeal for the parents and medics and when that is exhausted it is done.

Is it a perfect system? No, of course not. It is another opinion, and the opinion of someone with his or her own values which may align better with one party or another. But for better or worse, it is our system. Perhaps we should accept however that parents who ‘lose’ are not wrong, not irrational; they are simply at odds with the values of the wider society. When we can acknowledge that disagreement is simply disagreement, we will be better able to understand and support parents who face losing their child because they do not share values with most of us.