By Dominic Wilkinson
Disputes about medical treatment for seriously ill children are in the news again. Last week, the High Court in London decided in favour of withdrawal of life support from a brain damaged 11-month old infant, Isaiah Haastrup, against the wishes of his parents (an appeal is pending later this month). This week, the High court, sitting in Liverpool, is hearing evidence in the case of 20-month-old Alfie Evans, an infant with an undiagnosed degenerative brain condition.
In both of these cases, as in the controversial Charlie Gard case from last year, medical evidence from UK professionals has been overwhelmingly in favour of withdrawing life support and allowing the children to die. However, in each case parents have sought and have obtained evidence from overseas medical specialists who have testified in favour of continued treatment. In the Evans case, as in the earlier Gard case, experts from the Vatican hospital in Rome have apparently offered ongoing treatment.
This suggests several questions. First, why is there a difference between the views of specialists in this country and those overseas? Second, if there are differences in expert opinion about treatment for a child, should courts give any more weight to the views of UK experts than those from overseas? Is there a valid reason to discount the international second opinion?
International expert opinions can, of course, provide valuable evidence about cutting edge treatments that have been tried elsewhere, but that are not available locally. In a case that went to the courts in the early 2000s, the family of a young man with the degenerative brain disease vCJD sought an experimental treatment. An expert from Japan (who had performed animal experiments with the drug) testified to the effectiveness of the treatment in animal models, and this evidence was important in reaching a decision that the treatment should be allowed.
However, sometimes international opinions may not offer new scientific evidence.
One reason to favour the views of some experts over others, is if they have more detailed or more specific knowledge about the circumstances of a particular child. In the Charlie Gard case, medical specialists from multiple different hospitals in the UK had reviewed him and his case in person; this included a paediatric intensive care specialist at St Marys in London, a respiratory paediatrician from Southampton, neurologists from Newcastle, London and Southampton. All of those specialists reached a similar conclusion about the benefits and burdens of treatment for Charlie. In contrast, a specialist in the US, Professor Hirano, who had not (at that stage) examined Charlie, spoke in favour of treatment.
The judge in the Gard case made a pointed comment about expert medical opinions provided to the court
“It seems to me to be a remarkably simple proposition that if a doctor is to give evidence to this court about the prospect of effective treatment in respect of a child … that Dr should see the patient before the court can sensibly rely upon his evidence.”Para 12
Similarly, in the Haastrup case, the court heard evidence from multiple medical specialists from several different UK hospitals. All of those specialists, including two specialists invited by Isaiah’s mother to provide an independent assessment, agreed with the view of the treating doctors that continued intensive care was not in Isaiah’s best interests. The court was also provided with some contrary evidence from two doctors in Germany and a third doctor from Poland. However, the judge noted that these doctors had not formally examined Isaiah.
The fact that an expert is from overseas does not necessarily mean that he or she lacks the relevant information. They could visit and examine the patient.[1] Alternatively, there may be situations where an overseas expert has access to full clinical records and examination findings by local specialists, and can persuade the court that attendance in person is not necessary.
However, Justice MacDonald in the recent Haastrup case pointed to a different reason that some overseas experts might have reached a conclusion that differs from local experts.
“There is a world of difference between a foreign expert who may have relevant medical or scientific expertise in diagnosing and/or treating the medical condition in issue, and whose evidence may therefore… be necessary to resolve the proceedings justly, and a foreign expert who simply takes the view that the medical, moral or ethical approach to these issues in this jurisdiction differs from that in their own jurisdiction or their own practice, and that the approach in their jurisdiction or their own practice is preferable.” Para 83
Take, for example, a case like that of Tony Nicklinson, a patient with locked-in syndrome who sought assistance in ending his life. We could imagine in such a case that a doctor from Belgium or the Netherlands could testify that they would be prepared to provide assisted suicide or euthanasia, that they believe this would be ethical. This sort of evidence might be useful for lawmakers to consider in deciding whether to change the law. However, it cannot be relevant at all to the decision of a court as to whether or not something requested is consistent with UK law.
In cases of disputed medical treatment for a child, disagreement about what would be best can arise from different views about the facts and about what future lies ahead for a child. However, in some of these cases, (perhaps in all of the most difficult ones), disagreements arise from different values – or as the judge put it, different “medical, moral or ethical approaches”. There are two strong values in particular that might lead parents, or medical professionals to reach a view that medical treatment must continue in cases like those of Charlie Gard, Isaiah Haastrup or Alfie Evans.
The first value is a strong emphasis on a parental right to decide about medical treatment. In the Gard case, some commentators suggested that in such situations parents should always have the final say about life support.
The second value is a strong emphasis on the sanctity of life. For example, some people believe that forms of life support such as mechanical ventilation should never be stopped by doctors no matter how severe a child’s brain damage, since life itself is intrinsically valuable, and this would be (for example) contrary to their religious teachings.
There are important debates to be had about these values and their place in liberal societies. However, those debates are not relevant to current legal disputes about treatment for children in the UK. That is because of the clear common law rejection of both of these values (at least in their strongest form). English courts have made it clear that parents do not have absolute autonomy to make medical decisions for their children. Judges have also been very clear that life is not always a benefit to a child (or adult) and that it is not only ethical, it is mandatory to stop medical treatments that are not benefiting a child, even if those would prolong life.
Justice MacDonald rejected outright the idea that international second opinions could be presented to the court on the basis of a different “moral or ethical approach”
“It would be extremely unfortunate if the standard response to applications of this nature was to become one of scouring the world for medical experts who simply take the view that the medical, moral or ethical approach to these issues in their jurisdiction, or in their own practice is preferable to the medical, moral or ethical approach in this jurisdiction. This is particularly so where parents in the situation these parents find themselves in are understandably desperate to grasp any apparent life raft in the storm that is engulfing them.” Para 83
It is important to note that it isn’t clear whether in the specific disputes the experts were motivated by different ethical values. It may be that Professor Hirano or the other experts do not hold either of the strong values listed above. Their different opinions might be based on their medical and scientific expertise alone.
However, where international second opinions differ so strikingly from the views of local specialists there is some reason to wonder whether the expert opinion is based on value differences rather than medical expertise. That may also, legitimately, lead us to question their relevance for decisions.
[These arguments are developed further in my forthcoming book with Julian Savulescu: Conflicts about medical treatment for children: from disagreement to dissensus]
For further materials and resources on the Charlie Gard case see here.
[1] In the Gard case, Professor Hirano visited Charlie in the final stages of the dispute. In the Haastrup case, the Polish specialist had examined Isaiah, but her evidence was called into question by the judge since it appeared that she had apparently conducted a clandestine (and potentially illegal) examination while attending the hospital under the auspices of being a friend of the father.
2 Comments/question: 1.About the last para in present article, why value differences, necessarily, make decisions making illegitimate? 2. About “medical evidence from UK professionals has been overwhelmingly in favour of withdrawing life support and allowing the children to die” Can we draw the conclusion that, to some degree, the NHS in UK played quite a role in the preference of the professionals and courts due to resources concern?
The more esoteric the condition, the more likely it is that peer recognised specialists in the field are in regular contact with each other wherever in the world they may be.
Indeed group involvement can and does now take place in real time. I was recently privileged to see an Olympus glass operating theatre. In some ways it resembled a cinema complex. High definition screens abounded. I was told that it was possible to establish video conferencing links to anywhere in the world and for the procedure to be viewed close up by a widely dispersed group of fellow specialist each of whom could offer comment or advice if asked.
In the Chalie Gard case, GOSH specialists confirmed that they had been in regular contact with their international colleagues. This does not prevent self-promoting experts crawling out of the woodwork, as seems to happen in these cases, nor does it necessarily mean that professional motivation or even medical ethics are internally identical. he Vatican hospital was severely criticised recently for putting profit before the care of children (wiki provides a summary) and in the US the ‘best interests’ of the child are not paramount. ‘They will try anything, if the money is there’ is how it was put in the Gard case.
Accordingly, I would suggest that ‘International second opinions’ have little practical importance in medical terms, beloved though the subject is by the media.
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