Is the court of public opinion changing end of life decision making?

The parents have dropped their fight against court decisions to withdraw life-sustaining treatment for their 11-month-old baby, who suffers from a rare genetic condition that causes muscle weakness and irreversible brain damage, but Deakin Law School’s Dr Neera Bhatia said the tragic case signalled a potential turning point in how end of life decision making would be handled in the future.

Charlie’s parents and some medical experts believed an experimental therapy could provide a small chance of improving his quality of life, although no cure, but doctors at Great Ormond Street Hospital, the High Court, Court of Appeal and Supreme Court and the European Court of Human Rights all concluded that the withdrawal of life-sustaining treatment was in Charlie’s best interests.

“The case of Charlie Gard is proving significant for a number of reasons, including the huge amount of publicity the case has attracted and the number of influential commentators who have become involved,” Dr Bhatia said.

“The very sad case of this sick and impaired baby has become a media circus.

“However, it is indicative of the world we live in today, where people with easy access to the internet and social media, feel entitled to comment and challenge the views of the experts, regardless of whether they possess the relevant facts or any subject matter knowledge or expertise.

“The way this case has been so publically conducted may have implications for future cases globally with treatment decisions for critically impaired infants and children and the role that society more broadly should play in medical treatment decisions.

“Amidst all the noise of clicks and hashtags and likes and tweets and protests it might be prudent to pause and reflect and go back to the essentials of life and death. At the heart of all of this frenzy is a very ill 11 month old infant, who cannot express his wishes yet there are millions who think they can do just that.”

Dr Bhatia highlighted three aspects of the case that could play a role in future treatment decisions: the use of social media to influence medical treatment, the use of crowdfunding to support treatment and that this case was becoming a symbol of growing discontent with the establishment.

“More than any case of this kind before, Charlie’s parents and advocates have been incredibly effective in mobilising support using social media and the internet under the banner of ‘Charlie’s Army’, even attracting the notice and support of US President Donald Trump and the Pope,” Dr Bhatia explained.

“The courts have had to consider life and death decisions amongst a social media and political pandemonium. In this light, does a social media campaign really have a place here? If other families perceive the approach taken by Charlie’s family as successful, will it influence medical treatment decisions?”

With £1.3m GBP raised via a GoFundMe crowdfunding initiative for Charlie to be able to travel to the US for the experimental treatment that his parents want him to undergo, Dr Bhatia questioned if this would set a precedent in funding for future cases.

“This is novel for a case of this kind and it remains an open question whether other families in the future will follow Charlie’s case in fundraising for treatments, where hospitals and courts have determined that treatment is futile,” Dr Bhatia said.

“But beyond that, there are broader questions; what happens when ‘crowd funding’ money runs out? How do people choose which campaign they wish to donate to? How does it affect issues of privacy and wider issues of fairness and distribution of access to medical treatment?”

Dr Bhatia suggests that the attempts of Charlie’s parents to overrule the courts, hospital and medical advice could be indicative of a departure from the traditional paternalistic doctor-patient relationship.

“Unlike many others in this situation, Charlie’s parents rejected not only the advice of the treating medical team, but have also repeatedly rejected the decisions of the courts, who are assumed to be fulfilling an independent and objective role,” Dr Bhatia said.

“In a post-Brexit, post-Trump era, where voters are rejecting traditional political parties, does the approach of Charlie’s parents and their supporters also signify a trend in parents and patients knowing better than their doctors, and more confidently asserting their rights?

“Future cases will demonstrate whether the case of Charlie Gard can be regarded as an indicator of a medico-legal anti-establishment trend, but it is clear that the previous acceptance of ‘Doctor knows best’, in this case at least, has shifted to ‘Parent knows best’.”