Jeremy Groves reflects on some of the wider issues arising from the tragic case of Charlie Gard.
I have already written about something the adult critical care community can take away from the tragic case of Charlie Gard; however, I think there are several other issues that we can mull over. Charlie and his parents’ plight captured the public’s attention and everyone had a view, as I discussed before, informed or otherwise. To me it was striking how much of the discussion, and presentation of clinical information, took place in the press.
A lot of our clinical information comes from medical journals, dry though many of these may be. I don’t know about you, but I struggle with them. If I manage to open the packaging, especially of the anaesthetic ones, it’s a bonus. These then sit on my coffee table for a few weeks before their oft unread journey ends in the recycling bin. Yet we need information. With Charlie Gard, we, in common with the rest of the public, obtained it from the press. It was to many, including me, accessible, topical and relevant.
Now the bias of my reading was, I hope, towards informed opinion and I would like to share some of it here. The sources quoted will perhaps betray my liberal leanings. None the less I think some of the articles are worth a look, even though they are not from respected medical tomes.
Though Charlie’s parents used the press and social media to present their perspective, the hospital and clinicians, bound by patient confidentiality, relied on bland factual statements from their legal teams. This meant the stress, emotional toll and even abuse that the staff went through were not to the fore. However, their plight did make the news. I would encourage you to have a look at the anonymous account published, after Charlie’s death, in the Guardian from one staff member.1 Royal Colleges and indeed specialist societies, should take note and consider plans to prepare us for when this happens again.
the stress, emotional toll and even abuse that the staff went through were not to the fore
The duties of parents are one thing, the rights of an individual whatever their age, are another. There were all sorts of conflicting views over this. The legal view was very clearly articulated by Ian Kennedy in another Guardian article.2 He discusses how a child has rights as an individual. Parents should ensure those rights are protected, but they cannot always be the ultimate arbiter of their child’s interests. He uses of the example of where parents may wish to put a child on a diet that causes the child harm. If this is the case, we intervene to safeguard the child. There are parallels here with cases we deal with in adult critical care where our patients lack competence and relatives insist on treatments that the clinical teams believe are not in the patient’s overall interest.
Parents should ensure those rights are protected, but they cannot always be the ultimate arbiter of their child’s interests
The ethics are another matter and, whether you agree with them or not, some believe that the parents should, having raised the money, have been allowed to travel with Charlie to the States for experimental treatments.3 At the time, I was inclined to this view, but now I’m not so sure. Would Charlie have been the main beneficiary?
Finally, that brings us onto the money, declarations of conflicts of interest and back to the press. Money enables, but it also distorts. The bidding war that went on for the stories, together with the interests, and conflicts of interest, of the agents are laid bare in articles in Private Eye.4 Whether you believe them or not, and doubtless the money involved will be used for good cause, they make uncomfortable reading.
I may be naive but the more I think about it the more convinced I become that that the trickiest of our ethical dilemmas involving non-competent individuals are best sorted by establishing trust between the parties at the bedside. We need to avoid triggers, whether they be words, personalities or processes, that break down the delicate relationship between relatives and the medical team at times of extreme stress.
- Private Eye. Issues 1449 & 1450