Re: Alfie Evans and Charlie Gard—should the law change?
I fear the authors of this article overlook an important point. They dismiss the option of respecting parental autonomy for the reason that “it would come at considerable cost” and would “consume limited medical resources”. While this is a good argument against state funding of certain treatments, it seems irrelevant to the cases of Alfie Evans or Charlie Gard. In both cases, the parents had identified care which was funded by sources outside of the NHS. Both cases were concerned with the question of who should have the legal right to make decisions about a child’s medical care, rather than a question about clinical commissioning.
In fact, one can think of many examples where treatments are not available on the NHS, but which patients are legally entitled to receive privately or abroad. The question of resource allocation and parental autonomy are, in these cases at least, entirely separable.
As I wrote in a recent BMJ Opinion article during the Charlie Gard case, there are two primary risks associated with honouring parental autonomy, both associated with a child’s welfare. The first is that parents may simply lack the understanding or capacity to make medical decisions about the children. This lack of medical expertise or experience could feasibly lead to harm. The second risk is that some parents may intentionally act in bad faith to bring about harm to their child (although this is not a relevant factor in these cases). As I explain in the article, both risks can be addressed by introducing a rigorous capacity-based assessment, similar to what we use in adult care, as well as some sort of legal safeguard to ensure that parents act in good faith.
If I were the father of either of these children, I hope that I would reach a similar decision to those of their doctors. My personal opinion is that the clinical assessment of their medical teams was entirely rational. However, our judgement about the specific clinical decisions should not cloud our judgement of the more generalisable ethical principles we endorse.
As the authors tentatively suggest, there is a difference between safeguarding a child from harm and seeking a single interpretation of what is in their “best interests”. As the growing “values-based practice” movement suggests in the context of adult care, there can be numerous and equally valid iterations of what is in a patient’s best interests. These decisions rely on normative, rather than scientific, judgements.
We may wish to argue that parents should not be to empowered to make subjective judgements about what is in their child’s best interests. We may believe that these decisions should instead be made by doctors, the courts or the state. But if we are to make this argument, we should at least be consistent. Such an argument would lead to a conclusion that all parental autonomy is invalid, suggesting that doctors should disregard even seemingly minor parental decisions made in primary care and the community.
Instead, doctors currently offer parents the façade of parental autonomy before taking it away when parents are at their most desperate. It is no surprise that the public react with such outrage.
Competing interests: No competing interests