August 2, 2017

expert reaction to editorial commenting on the ethics around disputes over the medical treatment of children, with reference to the Charlie Gard case

In a new BMJ editorial an expert argues that much of the public discussion about the Charlie Gard case has been distinctly unbalanced.

Dr Peter-Marc Fortune, Consultant Paediatric Intensivist, Royal Manchester Children’s Hospital, said:

“In his BMJ editorial Dominic Wilkinson rightly questions our approach to best interest’s decision making for children, with a particular focus on the cases where family and clinicians find themselves in conflict.

“I fully endorse his first assertion that it would be helpful to gather more data regarding such scenarios, although I cannot agree such cases are rare.  I would suggest that any such exercise should look toward a rich dataset that captures not just the numbers but also the nature of such conflicts.

“His last point is perhaps the most important, namely that the events surrounding Charlie Gard’s short life should lead onto a detailed, open, public debate of how we should approach future cases.”

Prof. Penney Lewis, Professor of Law and Co-Director of the Centre of Medical Law and Ethics, King’s College London, said:

“In a small number of cases over the last few years, the relationship between parents and the clinicians treating their seriously ill child has deteriorated resulting in multiple court hearings.  The adversarial nature of such hearings is not conducive to rebuilding trust and improving understanding between the parties.

“In addition to the research and openness proposed by Dominic Wilkinson here, consideration should also be given to whether mediation should be made compulsory.  As Mr Justice Francis observed in the Charlie Gard case, “[f]ew users of the court system will be in a greater state of turmoil and grief than parents in the position that these parents have been in and anything which helps them to understand the process and the viewpoint of the other side, even if they profoundly disagree with it, would … be of benefit.”  A preliminary step towards this would be to follow the path of recent family law reforms and make attendance at a mediation information meeting compulsory.”

Dr Louise Terry, Associate Professor and Reader in Law and Ethics, London South Bank University, and member of the St Christopher’s Hospice Clinical Ethics Committee, said:

“We seem to be living in an age where emotion is replacing reason when serious decisions need to be made.  Most people recognise the need for ‘fair, accurate and balanced discussion’ but have little access to medical treatment information other than through the media.  Healthcare professionals and educators need to be more proactive in finding engaging ways to develop better public understanding regarding difficult medical decisions, not just when specific cases like Charlie Gard’s occur, but as an on-going, public education programme.”

Bea Teuten, Member of RCPCH ELAC (the Royal College of Paediatrics & Child Health’s Ethics and the Law Advisory Committee), and Mediator (and a health solicitor by background), said:

“Dominic Wilkinson mentions mediation.  Mr Justice Francis in the Charlie Gard case made reference to the fact that mediation should be attempted in all cases such as this.  Mediation is a forum where an independent third party offers a safe and impartial place for the parties to a dispute to explore the issues in conflict.  Matters discussed are kept confidential and the parties to the case need not even meet, the Mediator acting as a go between.  This provides a chance for issues to be explored, misunderstandings unraveled and parties to unpick much of the evidence underpinning the medical claims.

“The greater the issues at stake, and the life and death of a child is surely one of the most emotive issues that can present itself, the greater the need for a place of calm outside the public arena to explore these issues.  Where trust has broken down between the parties such as the parents and the staff treating a child, then the use of an experienced mediator can help all those involved work towards an acceptable way forward.”

Prof. Julian Savulescu, Director of Uehiro Centre for Practical Ethics, University of Oxford, said:

“Dominic Wilkinson makes some excellent points about ethical debate and importance of accurate information for that.  However his approving repetition of Judge Francis’s requirement for experts to always lay hands on patients is misplaced.  Many of these decisions are based on objective features, like the nature of investigations such as brain scan, MRI, etc.  There has been a lot of obfuscation in this case.  Rather than trying to criticise the quality of Hirano’s evidence in January, it would have been better to start a trial of nucleoside replacement when it was being considered in January.  Then the doctors could have filed to court to withdraw both artificial ventilation and experimental treatment.  By the time the court decision was made in April, there would have been a 3 month trial and (presumably) the parents would have seen it had no effect.  Instead, Charlie was ventilated for 6 months over 4 further court battles, with no experimental treatment.  But now, what will we say if a doctor in the future treats a child with Charlie’s condition successfully with nucleoside replacement?  According to the world expert, Hirano, the chances of that happening are low, but not zero.  Maybe it was impossible to predict how long this case would be drawn out but for the future, the moral of the story is start experimental treatment early when there are no downsides.  It can always be stopped.”

* ‘Restoring balance to “best interests” disputes in children’ by Dominic Wilkinson will be published in the BMJ on Wednesday 2 August 2017.

All our previous output on the Charlie Gard case can be seen at this weblink:

http://www.sciencemediacentre.org/?s=%22charlie%20gard%22&cat=

Declared interests

Dr Peter-Marc Fortune: “President, Paediatric Intensive Care Society.  Co-Chair, Recommended Summary Plan for Emergency Care & Treatment Working Group.  Co-Chair, Child & Young Person’s Advance Care Plan Collaborative.”

Prof. Penney Lewis: “Member, Human Tissue Authority; Member, Clinical Ethics Committee, St Christopher’s Hospice.”

Dr Louise Terry: “Paid employment or self-employment – Associate Professor and Reader in Law and Ethics, School of Health and Social Care, London South Bank University.

Grant funding – nothing recent that is relevant.

Voluntary appointments – Member of the St Christopher’s Hospice Clinical Ethics Commmittee.

Memberships – Registered Healthcare Professional (Health and Care Professions Council – Biomedical Scientist).

Decision-making positions – none relevant.

Other financial interest – none.”

None others received.