Lessons from the case of Charlie Gard

charlie_gard_protest_gi

Ewha Law School

Jungwoo Kang

Charlie Gard, the 11-month-old baby, died on 28th July after the lengthy legal battle which has been the subject of global attention. Charlie was born with mitochondrial DNA depletion syndrome which causes progressive muscle weakness and brain damage. When he was diagnosed at the Great Ormond Street Hospital, his prognosis was bleak. It was clear he could not breathe without a ventilator, and he could feel pain. His health got worsened quickly, and the medical profession reached to a decision that it was in his best interests to turn off Charlie’s life support and help him die with dignity. The parents disagreed to withdraw the life support, so they went to the court. The courts, however, agreed with the doctors and ruled the doctors can stop providing the treatment. 

This case has attracted worldwide attention, including that of the US President, Donald Trump and Pope Francis. It is a complex case which consists of a list of different issues; parental autonomy, medical ethics, experimental treatment and etc.. In the UK, parents’ right is not absolute due to the Children Act which empowers the state to intervene and challenge the view of parents when a child’s interests are not being served. Thus, judges are asked to figure out under which circumstances the child’s best interests can be better served. The legislation is used, for example, to oppose Jehovah’s Witnesses’ refusal for blood transfusions for their children.

However, it is questionable whether it is desirable to make judges to decide on such sensitive issues. The High Court Judge in the case called for a mediation procedure in which the disagreeing parties could seek help from experts in medicine and ethics to find their common ground and understand each other better. It seems the idea is convincing that it should not be the role of judges to resolve such cases of medical and ethical issues.

The impact of social media becomes a huge challenge for the medical professions. The opinion of the public is not supposed to be considered in making a medical opinion. In Charlie’s case, however, the social media played a key role to put a weight on the parents’ arguments, fighting against the doctors’ side. Charlie’s parents made appeals on the Internet, and it made the public not only challenge the medical team and the courts, but raise the funds of  £1.2 million for his treatment. The parents could find doctors from the US who would like to help Charlie.

Since medical professions are not free to make media statements due to confidentiality problems, the beneficial side of using social media is likely to work in favour of patients rather than doctors. It other words, it would be harder for doctors to carry their points when patients disagree to them. In fact, some staffs in Charlie’s case reported they got threats on a daily basis, while the media was making emotional comments on the case of Charlie.

We still have a hard question to answer; Who should be the right person to decide a child patient’s best interests in the future? Professor Uta Frith from University College London said, science is not entirely separated from its emotional context (Triggle, 2017). Scientific reasoning can win only when it can “engage the hearts of people”. It seems Charlie’s case shows the impact of the public has become more powerful thanks to the Internet era.

References

Amrit Ray & Caplan L (2016) The Ethical Challenges of Compassionate Use. JAMA 2016;315(10):979-980

Cassandra Garrison (2017) #CharlieGard: social media turns family tragedy into global war of words. Reuters. Available at: https://www.reuters.com/article/us-britain-baby-socialmedia-idUSKBN1AC23A

Clare Dyer (2017) Law, ethics, and emotion: the Charlie Gard case. British Medical Journal. 2017;358:j3152

Great Ormond Street Hospital v Yates & Gard [2017] EWHC 972 (Fam)

Nick Triggle (2017) Charlie Gard: A case that changed everything? BBC News. Available at: http://www.bbc.com/news/health-40644896

Yates & Anor v Great Ormond Street Hospital For Children NHS Foundation Trust & Anor (Rev 1) [2017] EWCA Civ 410

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