On 24 July 2017, the parents of Charlie Gard ended their legal challenge to take Charlie to the US for experimental treatment. This is a decision that has caused considerable soul searching and controversy.
Much of the attention has focused on the rights of parents in decision-making for children, and whether the intervention of the courts in this case means that doctors overrule parents in the UK.
Yet cases of intractable disagreement like this are the exception rather than the rule. In the majority of UK cases, as elsewhere, parents and doctors reach decisions together through a process of shared decision-making.
While there has been intense debate about whether or not requested treatment should have been provided to Charlie Gard, it is important not to extrapolate from this case. The ethical and legal basis for decisions in cognitively competent adults is different from that in younger children.
There is also a deep resource-related paradox at the heart of this case. While there is potential uncertainty about whether or not treatment would have been in the child’s best interests, there is no uncertainty about resources. Continued intensive care in this case, in the face of very low probability of improvement and high costs of treatment, represents an unreasonable and unfair use of limited health care resources.
However, in an effort to adjudicate the difficult ethical question of the benefits and burdens of treatment for the child, treatment has been prolonged at public expense for months. In that time, it is virtually certain that some children have been denied transfer to the highly specialised intensive care unit at Great Ormond Street Hospital.
Resources have not been part of the central debate in this case – and that is because there is no clear process for clinicians to make such decisions.
It is important to be clear about some of the key concepts at stake. In the initial court ruling, Judge Francis referred to maintaining the child’s dignity, and the significance of allowing him to ‘die with dignity’. Dignity is a deeply contested concept in medical ethics. There were clearly differing views between parents and professionals on the matter. The parents have used the words ‘fight’ and’ battle’, which indicate potential underlying conflict.
This case is an extreme example. Repeated cuts often mean that frontline medical services are prioritised to the exclusion of others, leaving already overstretched staff to try and fill other essential roles. This case exemplifies the perils in not valuing the role of a wider multiprofessional team.
In closing let’s reflect on Professor Julian Savulescu’s, director of the Oxford Uehiro Centre for Practical Ethics, statement: ‘At some point in all of our lives, we have to let go.' Many aspects of this case rest on the inability to let go. One can only attempt to appreciate the agonies that the parents have experienced.
However, we do need, as healthcare managers and leaders, to question the original decisions surrounding this case, and the way in which these decisions and the provision of specialised support were managed.
Dr Bryan McIntosh is consultant editor for our sister title British Journal of Healthcare Management, where this editorial first appeared