Ann Gallagher, Professor of Ethics and Care
The parents of baby Charlie Gard recently lost their appeal at the European Counts, The judges ruled that further treatment would cause harm to Charlie and that life support could be discontinued. However, they now have another opportunity to present new evidence which will be considered in a UK court tomorrow.
The case has attracted international and political attention with both the Pope and President of the US expressing support for the parents including treatment and care in the US and Italy (see http://www.bbc.co.uk/news/uk-england-london-40503842 ). Foreign Secretary Boris Johnson has taken a stand and asserted that it is “right that decisions continued to be led by expert medical opinion, supported by the courts”, in line with Charlie’s “best interests.”
So should non-UK politicians and religious leaders get involved in contentious medical cases? And how much weight should be given to international interventions which intend to override local decisions based on medical ethics and European law?
We might understand how and why powerful people would feel inclined to intervene from afar. The case is very emotive and it may seem that the interests of a vulnerable infant and his parents have not been well considered. Distant leaders may feel they have insights that those involved do not have. They may feel that such an intervention is in keeping with – or may enhance – their ethical reputation. Efforts to save the life of a sick child are understandable and generally praiseworthy, however, it is neither helpful or ethical for those distant to this complex individual case to attempt to override what has been a lengthy and considered decision-making process.
We all understand loving parents wishing to keep their baby alive. However, parental love is not the only ethical consideration and parents may be blind to, or in denial about, other elements. If there is sufficient certainty, which a substantial body of medical and legal opinion may confirm, that further treatment would be harmful then this should not occur. If travel and further intervention has the potential to cause Charlie additional suffering from which he would not benefit, then this is unethical. If offers from afar result in false hope being given to parents then this is also problematic. Charlie’s parents will, it seems likely, have to endure Charlie’s end of life later rather than sooner and with the support, expertise and experience of a healthcare team who have been involved with the family 24/7 for a significant time. However, we cannot predict the verdict of the court tomorrow.
The Intervention of Boris Johnson was, at that time, appropriate and correct. The main focus is on Charlie’s best interests which is as it should be – Charlie cannot speak for himself and should not suffer. He requires, and has had, medical and legal advocates who are concerned that he should not be subjected to treatment that is more harmful than helpful. The prolongation or sanctity of life argument seems, in this case, weak as compared with arguments relating to quality of life. However, until we have the verdict of the court tomorrow we do not know what this new evidence will lead to.
What is most pressing, from an ethical point of view, is that new evidence is weighed carefully and regardless of the outcome of the court decision tomorrow, care will continue before and beyond life support. Care must be directed towards the family as a whole. Should the discontinuation of life support go ahead, neither Charlie nor the family should feel abandoned. This is a very challenging situation and ethical sensitivity is necessary to ensure that there will be appropriate and sufficient support to ensure a good death for Charlie and to enable the family to endure what will be a significant loss.
Attention needs also be paid to the experience of the healthcare team caring for Charlie and his family. Members of the team may feel conflicted or distressed by the case and it is hoped that they will avail of support from the hospital’s ethics advisory and other services. Without exception, members of the team will require courage, compassion and wisdom to help the family and colleagues negotiate an ethically fraught situation and very very tragic situation. They can also draw on a range of ethics-related resources to help them think through this and similarly challenging cases, for example, the Nuffield Council on Bioethics report (see https://nuffieldbioethics.org/wp-content/uploads/2014/07/CCD-web-version-22-June-07-updated.pdf ) on the ethics of neonatal care and also articles in journals such as Nursing Ethics (see http://journals.sagepub.com/home/nej) and the Journal of Medical Ethics (see http://jme.bmj.com/).
It seems appropriate to bear in mind – in this and other such cases – what I consider the core of care ethics: cure sometimes, treat often, care always and abandon never.