Whatever your opinion regarding the outcome, the Court battle surrounding 11-month old Charlie Gard is a heartbreaking one. We discuss the legal aspects below.
Britain’s legal realm has recently found itself in an unprecedented dilemma that roots from the seemingly impossible amalgam of scientific facts and ethical principles.
Charlie Gard, an 11-month old patient in intensive care at Great Ormond Street Hospital (GOSH) in London, suffers from infantile onset encephalomyopathy mitochondrial DNA depletion syndrome as of September 2016. This condition causes gradual muscle weakness and brain damage. Charlie cannot move and suffers from severe epilepsy which can only be detected through machines. This reflects the unfortunate reality that Charlie’s quality of life is extremely low.
The crux of the legal dilemma stems from the issues behind prolonging life and allowing the death of infants. The Children Act 1989 states that patients such as Charlie can be allocated with their own independent legal representative to ensure their interests are met, rather than the interests of their families. The long-running legal argument is thus fuelled from GOSH’s belief that there is no successful treatment available for Charlie, and that his capacity for future health and well-being is extremely low.
On the opposite end of the spectrum, Charlie’s parents claim that they have the right to decide what is in their son’s best interests, and that taking him to the USA for an experimental treatment would be a beneficial attempt to improving his condition – even if by a 10% threshold, as suggested in expert reports. Charlie’s parents’ justification lies on the understandable belief that they wish to try every possible method to helping their son to avoid being left with the daunting supposition of ‘what if?’.
Following this, Charlie’s hospital scans and reports have proven to be sufficient evidence to enable the Court to decide in April 2017 that his life support should be turned off. After his parents lost their appeal in May 2017, as well as their fight in the Supreme Court in June 2017, the European Court of Human Right’s decided not to intervene in the matter, perhaps to avoid diving into the dangerous waters of conflicting the best interests of a child with the ethical difficulties around actually defining these best interests.
Albeit with a wave of uncertainty, there seems to be valid arguments on both sides of the case: according to GOSH, Charlie is unquestionably suffering and should thus not be kept alive because of the hopelessness of his case. In the alternative, any treatment undertaken by Charlie would be an attempt to improve his quality of life and help build towards medical research for future patients. In addition to this, suffering can usually be sedated during treatment procedures. One must also appreciate the long-standing opinion of parental decisions prevailing over all – though this argument is what drives the beginning of feelings over facts.
This week, the High Court will consider fresh evidence for reconsidering its decision. It is of international public interest to see how the Court will consider both law and ethics into its decision, and further drives us into questioning whether there should be a line between scientific facts and moral principles – and if so, where that line should be drawn in declaring what the best interest for an infant is. Ultimately, we question whether the law should consider different responses to moral dilemmas, or whether this would simply lead to uncertainty in the legal system.
As of today (24 July 2017), Charlie’s parents have withdrawn from their legal battle on the basis that there is simply no time left for therapy – little Charlie has only a few weeks left to live. Nonetheless, this case has far from solved the uncertainty behind law and ethics, and has hopefully urged us to think about how the legal system could be improved when sensitive conflicts such as this arise in the future.
We understand that issues such as this can affect us all, and we are here to help. We offer free 20 minute consultations for all new enquiries and would be glad to assist any parents who are experiencing issues regarding their children.
Written by Jasmine Chana
Intern at SMQ Legal Services LLP
LLB Student at the University of Reading