Charlie Gard: child’s best interest and parental rights

| July 3, 2017

The UK Supreme Court confirmed a previous Court of Appeal judgement and granted doctors the right to withdraw life-sustaining treatment save from a baby, Charlie Gard, “to die with dignity”. Following doctors’ perspective, the Supreme Court argued that any treatment would be futile and hence not in Charlie’s best interest. However, Charlie’s parents disagreed on this point and wanted to take him to the U.S. for an experimental treatment, which could offer a chance at life for their son. Nevertheless, the UK Supreme Court’s decision considered the child’s best interest as the paramount (i.e. the only) relevant principle, and did not give sufficient weight to parental rights. This article will question this judgment under the perspective of the rights of parents.

 

Charlie is a ten-month old baby affected by a rare mitochondrial disorder called mitochondrial depletion syndrome, which causes progressive muscle weakness. Great Ormond Hospital’s doctors agreed that Charlie has reached the stage where ventilation should be withdrawn “to die peacefully and with dignity”. However, his parents, Connie and Chris Gard, have expressed the desire to take Charlie to the U.S. where the baby would receive a “pioneering treatment”. They have also publicly raised 1.2 million euros to fund their son’s treatment.

 

Despite this, the Court argued that even such “pioneering treatment” would only prolong Charlie’s suffering. This perspective was based upon the medical opinion of the UK medical team (i.e. Great Ormond’s Hospital) and the U.S. one. The U.S. doctor, in particular, said the following: “I can understand the opinions that he is so severely affected by encephalopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy. It is unlikely.” Although he would welcome Charlie in the U.S., he expressed his concern with regards to the possibility of an actual improvement. The reason behind such statement are related also to the pioneering nature of the treatment. Charlie would be, indeed, the first baby with encephalopathy to receive this treatment, and thus it is impossible to predict from any scientific basis whether Charlie would respond positively or not.

 

Following the medical perspective, the Supreme Court confirmed that it was in Charlie’s best interest to lawfully withdraw all life-sustaining treatments. In this sense, the Supreme Court believed that parents were not entitled to insist upon an experimental treatment, which was in their understanding not in the child’s best interest.

 

 

It is surely true that death is a reality that everyone–adults and children–will face in their lives, sooner or later. It is also true that the limits of medicine and the potential of medicine to inflict harm should be recognized. In this sense, not every possible attempt at cure is always justifiable. Sometimes it is in the patient’s best interest to shift from attempts at cure to focus on palliative care (i.e. symptom control).

 

However, as Jones (2017)[1] stated, The problem in this case is not that the judge made a bad decision as to what, on the balance of probabilities, was in the best interest of Charlie. Perhaps withdrawal of treatment and palliative care is best for him. The problem is that this is the wrong question. It treats Charlie as though he had no parents or as though his parents had already been shown to be irresponsible or harmful. In a case like this, the question should not be ‘What would I do if I were Charlie’s mother or father?’ but ‘Are Charlie’s mother and father acting very unreasonably?”

 

 In other words, this judgment failed to give proper weight to a parental perspective. It did not scrutinize whether the parents were acting so unreasonably that the Court should made a decision in their place. Parental decision to seek treatment elsewhere should be instead part of parental rights towards their child, unless it is absolutely clear and beyond reasonable doubt, that they are acting against the child’s best interest.  In the face of some inevitable degree of uncertainties concerning the outcome of  pioneering treatments, parent’s liberty and interests should be respected (Savulescu, 2017)[2]. In this sense, parental right should include also the right to offer their son a chance to live.

 

Parents have also fought for their rights to have a final say on their son’s life behind the European Court of Human Rights (ECHR). However, the ECHR has confirmed the UK’s judgment.

Charlie, is expected to die in the following days, surrounded by Chris and Connie, two heartbroken parents.

 

[1] Jones, D., 2017. Judge says doctors can withdraw baby’s life support against parents’ wishes. [online]. Available at: < http://www.catholicherald.co.uk/news/2017/04/11/judge-says-doctors-can-withdraw-babys-life-support-against-parents-wishes/> . [Accessed 25 June 2017].

 

[2] Savulescu, J., 2017. Debate: The fiction of an interest in death? Justice for Charlie Gard. [online] Available at: http://blog.practicalethics.ox.ac.uk/2017/04/debate-the-fiction-of-an-interest-in-death-justice-for-charlie-gard/. [Accessed 25 June 2017].