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Charlie Gard shows cost of using law to settle 'human' questions: View


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Charlie Gard shows cost of using law to settle 'human' questions: View

_ By Revd Dr Mark Bratton, Associate Fellow, Warwick Medical School, University of Warwick_

The most harrowing medical court case in the UK in recent years has just ended. The parents of 11-month old Charlie Gard have just decided to halt their legal battle to fly their small baby to the US for experimental treatment they hope might improve or cure his condition. Consequently, doctors currently treating him at a famous London children’s hospital will shortly withdraw the treatment that is currently keeps him alive.

Baby Charlie suffers from a very rare genetic disorder called Mitochondrial Depletion Syndrome for which no effective therapies currently exist. The mitochondria are structures that give the body’s cells the energy required for normal, dynamic living. When the mitochondria malfunction, it affects the muscles, kidneys and the brain, in Charlie’s case permanently and irreversibly. The clinicians at Great Ormond Street Hospital in London believed that to continue Charlie’s life support, let alone send him to America for untested treatment, would provide him with no benefit and perhaps significantly harm him.

Charlie’s parents have strongly disagreed. An American neurologist was prepared to treat Charlie with innovative nucleoside bypass therapy that had a theoretical chance of refuelling his defective mitochondria. Charlie’s parents strongly felt they had the right to decide what was best for their sick child and to seek elsewhere a treatment that might just save his life. Indeed, they had successfully gathered through social media huge support for their plight, including President Trump and the Pope, and a crowdfunded sum that would cover the astronomical treatment costs. Nevertheless, the UK courts and the European Court of Human Rights unanimously agreed that further treatment was futile and that Charlie should be allowed to die with dignity.

Who should decide? The parents? The doctors? The courts? The general public?

Parents are normally given huge leeway regarding the medical care of their children, but their power is not absolute. They are not allowed, for example, to refuse life-saving blood transfusions on religious grounds or to send their girls abroad for genital mutilation. The medical profession is assumed the master of the medical facts, but values are often central to difficult ethical cases of this type, and why should medical values necessarily triumph in cases like this? The courts only get involved when very rarely patients, or parents, and doctors cannot agree, but litigation is adversarial as well as emotionally and financially costly. The public tend to curse the medical and legal professions in ethically contested situations such as this one, but public opinion can be unwise when feeling triumphs over fact and good judgment.

Perhaps a more excellent way of dealing with such heart-rending disagreements is to offer some form of mediation. An increasing number of hospital trusts in the UK are creating Clinical Ethics Committees. These bodies are made up expert and ‘lay’ members representing a wide range of expertise including ethics, law, medicine, and ‘ordinary life’. Their job is normally to help clinicians to think through the ethical dimensions of the clinical decisions involved. However, there is no reason in principle why this could not be extended to thinking along with both clinicians and family members when disagreements arise and fostering the good communication that might otherwise be lacking.

As I write, the family are seeking the court’s permission to bring Charlie home for his final moments. Even if Charlie’s impending death is an inevitable outcome of his tragic condition, perhaps much of the angst could have been avoided with a different, less combative, system of dispute resolution.

_ By Revd Dr Mark Bratton, Associate Fellow, Warwick Medical School, University of Warwick_

The views expressed in opinion articles do not represent Euronews’ editorial position

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