Parents or Professionals: who should make the decision for choosing life or death?

Misrepresentation significantly influences how we perceive world events. This is highly common when medical cases are reported in the media. Complex conditions require specialized medical knowledge, if they are to be accurately explained. Thus, unless a doctor is consulted, media reports are based on knowledge gathered by media persons, who do not necessarily have medical understanding. This commonly results in misleading information being published. This article will examine such problems, by looking specifically at the case of Charlie Gard. The steps taken in making the decision of whether or not to withdraw his treatment saw reference and rethinking of medical ethics, interventions of law courts and doctors, and public opinion. Great differences of opinion regarding whether or not his treatment should have been withdrawn emerged. By examining what led to such controversy, this piece aims not to conclude that any side was correct. Rather, the aim here is to suggest what could potentially be done in similar cases, with the hope that future situations will not become as aggressively divisive; the desire of those involved being to do what is best for the individual.

 

Charlie Gard was born in August 2016 with Infantile onset encephelomyopathic depletion syndrome (MDDS), an extremely rare form of mitochondrial disease. Becoming critically ill within the first few weeks of life, he was kept alive only by life support. Whether he felt pain was undeterminable. The poor prognosis of his condition, together with medics believing that he world likely be in pain, led doctors to the conclusion that withdrawal of treatment would be in Charlie’s best. This decision was met with resistance by Charlie’s parent, who wished to take him to America for nucleoside gene therapy. Media reports on the case led to public protest, as individuals believed Charlie’s parents should have the right to try all medical avenues for their son.

 

Controversy partly arose because the nucleoside gene therapy was not described accurately by the media. “There’s never been a proper clinical trial for nucleoside therapy,” said Dr. Scaglia. The media fueled public anger as they reported that eighteen patients in Spain and Italy with mutations in a different gene, TK2, had so far tolerated the therapy. What was not documented, however, was that these children had a form of mitochondrial disease that only affected muscle, whereas Charlie’s affected all major organs. Supreme Court Judge, Justice Francis, knew of such limitations, after discussing the case with Charlie’s doctors. He expressed how the media had wrongly described NGT as the “pioneering treatment” , before proceeding to correct such claims by highlighting that NGT had not reached the “experimental stage on humans with this particular strain of MDDS from which Charlie suffers.” So, whilst the treatment was not invasive, his parents had raised over one million pounds to take him to America for the treatment and, initially, Charlie’s doctors had agreed to try the therapy, it is the oversight of details like those above that need to be better regulated; they significantly  influence public opinion and here this roved detrimental.

 

 

Indeed, an EEG from March 30th convinced even Dr. Hirano, the professor credited with the development of NGT, that an attempt at any treatment would be futile. This term, referred to so frequently in the term in the court case, was defined by Justice Francis as:

 

“pointless or of no effective benefit.”

 

In rebuttal of medical and legal arguments, the media emphasised what they perceived as the ‘flaws’ of medics. For instance, whilst Professor Hirano had been invited to come to the UK in the January, he came four-months later in May. During this time, Charlie’s condition had further deteriorated. Immediately this caused public outrage; it appeared parents had been robbed of the opportunity to potentially save their son’s life.  Nevertheless, yet again the media made a crucial oversight: medical experts from across the globe had concluded that treatment would have been ineffective even in January, demonstrating that, regardless of when treatment would have begun, medics had decided it would be unsuccessful. The second media inaccuracy continued to cause aggressive divide between prevailing public opinion and that of medics and the law.

 

Whilst there is no black and white answer tot such complex cases, it certainly seems that tighter regulation of the media is necessary in such cases. This is not to conceal medical error or a form of censorship. Rather, it would act to ensure that what is published is accurate, with the aim being it prevent such aggressive protest and misconstruing of information as we have seen here. But the difficulties to not end there. Perhaps, then, individuals ought to take time before they post out of anger or initial feelings and emotions; to consider that doctors and courts will ultimately want what is best with the child, and therefore to place better trust, no matter how hard, in the experts who deal with cases of complex and currently incurable and underdeveloped areas of disease understanding.

 

The rights of the individuals involved in cases such as Charlie’s are also highly complex. The most relevant rights in question in Charlie’s case were his rights and those intrinsic rights of the parents as his guardians. This decision is based largely on argument(s) such as that of genetic propriety, and Charlies’ ‘non-personhood’, being only a year-old. Questions of when these were appropriate to be exercised or overruled caused rigid divides in opinions in Charlie’s case. If parents have rights to demand experimental treatment, they can rationally exercise these rights? Criteria attached to this is that the parents must be competent to do so, and their decision must involve no harm to the child and benefits, despite being uncertain, must be potentially great.

 

Much of the public debate has been about parental rights: why should Charlie’s undoubtedly loving parents not have the right to decide his treatment? The answer, in the United Kingdom, is that the court can step in; not only when parents are negligent, but also when they are blinded by the deepest love. For this reason, the foundational principle of child law in domestic, European and international law is that courts must decide children’s cases in their best interests. Thus, in Charlie’s case, the parental rights were overridden by the decisions of specialists working on Charlie’s case. Considering the exterior influences in Charlie’s case, together with the emotional toll his parents had endured, it was deemed appropriate for law suits to override parental rights here

 

From a personal perspective, I sympathise with all sides in Charlie’s case.  My two-year-old niece, born just two months before Charlie, also suffers from mitochondrial disease. A year ago, we found ourselves in the same predicament as Charlie’s parents. Zahra quickly declined with a common cold-  her muscle weakness makes her particularly susceptible to rapid decline from otherwise mild illnesses- and doctors believed it best to withdraw her life support. As a family, being aware of the often degenerative nature of mitochondrial disease, agreed and decided to withdraw treatment.  We and all doctors were astonished, therefore, when Zahra recovered independently. As a family we were of course overjoyed, but again thrust into a future of uncertainty and anxiety. Given the potentially degenerative nature mitochondrial disease, one is always left wondering whether an opportunity for the sufferer to pass would have been better; the future is always uncertain. For the time being, however, Zahra is amazing both us and medics studying her case and she continues to get stronger. It is rarities such as Zahra, defying all odds, that make one question the decisions made in the Charlie Gard case.

 

Limited resources, money and time, sadly contribute somewhat to decisions made in medicine. With doctors coming under ever increasing pressure, and considering the rising number of innovative treatments they must understand, however, we cannot help but ask ourselves whether faster intervention in Charlie’s case would have brought a different outcome. Interestingly, Great Ormond Street themselves criticised Professor Hirano for allowing four months to pass between his invitation to the UK and when he actually came to observe Charlie. However, as we have just highlighted, constraints made it near impossible for him to come earlier. He would have been busy with work over in the US before he even began to look at a case over in the UK. Charlie would have been just one case of many that he was responsible for.  Money and time should never be a basis, in an ideal world, in such decision. However, arguably such factors play a very minor role in decisions, particularly when looking at cases of illness that have a potential for reasonable improvement. Charlie would need constant care throughout his life, regardless of how effective his treatment. Thus, we must ask if he would he truly have had any quality of life? Charlie’s medics wanted him to die with dignity. We would want the same for Zahra if she ever deteriorated. From a personal perspective, then, one cannot help but agree with medical views on this point.

 

Many argue that the Hippocratic Oath means doctors should seek to preserve life under all costs. However, this theory was conjured thousands of years ago, when medicine was significantly underdeveloped compared to today’s society. Moreover, if Charlie would have no quality of life and potentially suffer in great pain, is this not ‘causing harm’, as the treatise outlines? Whilst allowing death would seem to be bringing harm, one cannot help but agree with medics that this would be a less harmful means than allowing Charlie to live in a state of suffering.

 

These extremely difficult questions gather a range of responses and opinions. Of course, families wish for the best, and mean no harm. The pressing and hard question is, however, who in periods of such emotional turmoil, should make critical decisions? Do our own desires to keep a loved one alive see us forget that they will not have quality of life? Or can doctors sometimes be wrong and so called ‘miracle’ cases happen? These are illustrated in cases of remission from a terminal illness, beating statistical odds, and more. The tragic death of Charlie Gard brings to an end the stream of litigation that surrounded his short life. His case has provoked intense and wide-ranging debate, not least on the troubling question of how best to protect children when the grief of parents is filtered through the glare of social media. Despite the extensive litigation, the case has failed to give a clear answer to the central legal question: the limits of parents’ rights to determine their children’s interests.

 

As outlined, this piece does not intend to lie one way or the other. With my own niece having mitochondrial disease, personal experience has reinforced that such decisions are extremely difficult for all involved. In no way do I criticise any figures in medicine or law, as each is striving for the best. Perhaps what I am asking for, then, is for wider society and public figures to consider what they are going to public or share in the media, and the potential consequences. Through better media accuracy and thinking before we rush to post on social media, perhaps we can, in a constructive way become a voice alongside doctors, and law courts and parents, striving for the best outcome for a for a critically ill individual. Clearly, in the case of Charlie Gard, public uproar and posts from like Pope and Trump who have no medical knowledge or involvement with the case, did not offer the solution. By instead taking a greater sense of responsibility of how, and when, we decide to publicly express our opinion, hopefully less damage will be caused in situations that are in no need of further emotional strain.

This article was written by Emily Evans

Bibliography

 

Hammond-Browning, Natasha, ‘When Doctors and Parents Don’t Agree: The story of Charlie Gard’, Journal of bioethical Inquiry, 4, (may 5 2017), 461-468.

 

Johnson, L. Charlie Gard ‘is being held prisoner by the NHS’ – family spokesman blasts authorities, Daily Express (2017.)

 

Kegel Magdalena, Nucleoside Therapy Explained: Why Doctors Hesitate to Treat Charlie Gard, Mitochondrial Disease News, (July 19 2017).

 

Lewis, Ricki, ‘Charlie Gard Post-Mortem: Could He Have Been Saved?’ DNA Science Blog, (August 3 2017).

 

Taylor, Rachel, ‘Charlie Gard: Children’s Rights and Parent’s Responsibilities’, Oxford Human Rights Hub, (11 August 2017).