By Dominic Wilkinson
According to media reports, the family of seriously ill infant Alfie Evans have decided to lodge a second appeal to the Supreme Court today. This is the 6th legal appeal mounted since the High Court decision, on the 20th February, that continued medical treatment was not in Alfie’s best interests. There is no prospect that this latest legal appeal will be any more successful than the previous ones – its only effect will be to delay the inevitable decision to withdraw life-prolonging medical treatment.
However, the appeal raises an important question in relation to disputed medical treatment. The UK legal appeal system gives families the opportunity to delay decisions that they do not agree with by mounting a series of appeals. (The Court of Appeal judges yesterday referred to this as akin to a form of legal “Groundhog day” with the judges revisiting the same arguments over and over again.) While the family of Alfie Evans may not succeed in their aim to take him overseas for medical treatment, they have achieved almost 2 months of additional intensive care for Alfie – two months of treatment that has been legally judged to be not in his interests.
Is there an alternative to the existing legal process? Is there a way to avoid protracted legal appeals in cases of disputed medical treatment?
Perhaps surprisingly, one legal model that might appear to offer a better way is that available in Texas. The Texas Advance Directives Act (TADA) includes a specific clause addressing situations where doctors refuse to provide treatment that is requested by a patient or a family (or included in an advance directive). Under this act, rather than invoking a court process, doctors are able to refer cases to a hospital ethics committee. That committee hears evidence from both the medical team and the family. The family are supported to obtain evidence from outside medical experts. In many cases, the involvement of the committee leads to resolution of the dispute. However, where the ethics committee agrees with the physicians that the requested treatment is “medically inappropriate”, the family is given notice, and the medical team are legally permitted to withdraw treatment after a period of 10 days. Importantly, there is very limited legal avenue to appeal the decision or to prolong the 10-day period. In essence, the family can only appeal if the due process set out by the act has not been followed to the letter. They cannot mount a legal appeal just because they disagree with the decision reached.
On the face of it, under the Texan model, the dispute would have ended back in early March in a case similar to that of Alfie Evans. Indeed, it appears likely that a decision may have been reached months ago, since the dispute between Alfie Evans’ family and the hospital was already established in July 2017, and if the hospital had the option, they might have invoked the ethics committee process at that stage.
However, it is important to note that the Texas approach would not necessarily have led to withdrawal of treatment in the case of Alfie Evans. One important element of the TADA approach is that it allows families to transfer patients to another doctor or hospital willing to provide treatment. The aim of the 10-day period is at least partly to give families the chance (if they can) to identify an alternative provider. In the Evans case, the family have apparently managed to identify hospitals in Italy and Germany willing to provide ongoing treatment for him, as well as health professionals prepared to supervise his international transfer.
What would be wrong with that? As I have argued elsewhere, international medical opinions in cases like that of Alfie Evans do not necessarily offer new scientific evidence. There are very good reasons in several of the recent disputed cases to question the relevance of the opinions that have been offered by some overseas experts. There are good reasons in Alfie’s case not to allow his parents to take him overseas.
We need a better way of resolving disputes about medical treatment. The Texan model has some distinct advantages, however, if the UK were to look to a model like TADA as a way to address disputed treatment, there would also need to be attention to the question of how to evaluate the views of experts and when not to allow transfer of patients (particularly children) overseas for treatment.*
In the next few days, it appears inevitable that the legal dispute over treatment for Alfie Evans will end. However, this bitter, painful, and protracted conflict has caused considerable distress for the medical staff at Alder Hey hospital, for Alfie’s family, and potentially for Alfie. Just as in the case of Charlie Gard last year, there is a need to learn some hard lessons from this case and to hope that there might be a way of avoiding similar situations in the future…
*In our forthcoming book, Julian Savulescu and I propose a dual-level model for arbitrating disputes that does just that.
Forthcoming book: Conflicts about medical treatment for children: from disagreement to dissensus. (If you are interested in this book – please send us an email to be notified when it is available.)
See here for ethics commentary and resources on the Charlie Gard case.
I am looking forward to that new book! I agree that much better solutions for these heart-breaking disputes – also the ones that do not involve taking children to other countries – are very badly needed. Something that struck me is that some countries appear to have significantly fewer of these conflicts. Why is that? Greater mutual trust and respect? That might enable people to arrive more easily at a jointly agreed upon way forward.
Thanks Angelina,
The situation in the UK is unique to my knowledge.
It is possible that there are less conflicts elsewhere because other places are better at reaching a mutually acceptable answer. However, it seems more likely that intractable conflicts are avoided in one of two ways. In some parts of the world, doctors simply provide what families are requesting (e.g. continued treatment in intensive care) despite their misgivings – perhaps because there is a legal presumption in favour of parental autonomy, or no legal appetite for going against parental wishes. In other places, doctors simply refuse to go along with parental requests, and there is no mechanism for parents to seek continued treatment.
Dominic, do you happen to be familiar with the situation in the Netherlands (or Germany, which is probably similar)?
Certainly, both countries have a much less litigious society than the UK and the US. Also, it is possible that the reason that I am not aware of any Dutch disputes may be that such disputes (often) remain restricted to medical boards etc. and do not often end up in the legal courts.
I don’t think that doctors in the Netherlands cater to a family’s wishes the way doctors in the US tend to do, whether to avoid lawsuits or Americans simply seeing the roles of doctors and patients in a very different, more consumerist, light. (Getting the best services for their money’s worth, in their view. That is one of the differences between having an NHS-type situation or a private insurance situation, though the situation in the Netherlands is probably a mix of both, but closer to what the NHS does.)
But I don’t think that doctors in the Netherlands simply overrule the families’ wishes either.
If anything, my impression is that patients and their relatives are more emancipated there than in the UK, or perhaps I should say that doctors are no longer the white coat authority figures of, say, the 1960s and so doctors in the Netherlands may be much more willing to listen to what patients and their relatives have to say.
As far as I know, many disputes in the Netherlands are about whether a treatment will be paid for or has to be financed by the patients and their families. The assessment whether a treatment is accepted state of the art does play a big role in those considerations. But I don’t think that Dutch people are actually stopped from seeking a different kind of treatment. I may be wrong about that, though.
It’s something I’ve been wondering about for a while, but haven’t dived into yet. So I’m very interested to hear your take on this.
Germany obviously has a mixed healthcare model – in any private setup you are going to have an incentive for doctors to provide ongoing life support even beyond the point where they feel it is futile, even if that decision is not profit motivated. Dominic has also previously discussed cultural differences between countries in terms of keeping people on ventilators, which is an ethical/moral discussion.
I think it is difficult to suggest that one country has a superior model on the back of not being aware of any cases reaching the public attention – after all, the Gard case was (as far as I am aware) the first time that parents had explicitly adopted a PR strategy to achieve their aims, and there were likely many similar medical cases before the courts previously which had not been subject to those tactics.
It is interesting that subsequent cases have adopted the same PR tactics despite the outcome in Gard. There are some commonalities (the presence of CLC for example, who arguably have a greater agenda), but it may be that it is simply the only option desperate parents can see, even though the crowd fundraising is a potential moral hazard.
Thanks, Philip. You’re right; I should wait for the book.
For the record, it wasn’t my intention to suggest a “competition” between countries, but it may have sounded that way. All countries can learn things from each other and that’s good, because we would probably all benefit from moving toward a global consensus on many of these issues. Reaching one could take a very long time.
With regard to the “PR” approach, and this is also what I was thinking about when I replied to Lynn, that often doesn’t start until after the dispute has begun to escalate. Something seems to happen prior to the escalations, that leads to them, and that may be where most can be learned and gained.
Personally, I too have the experience that hospital specialists (and in the distant past, GPs) don’t always listen and sometimes even ridicule you when you raise a point, seemingly unaware that they are inadvertently revealing that they haven’t kept up with the literature.
On the other hand, yes, Lynn, I agree that these days, doctors often get accused of “playing God” when they do the reverse of what used to be called “playing God” only decades ago. Namely when they acknowledge that they believe that they have reached the limits of what is possible. Among relatives and patients, there sometimes is an overly strong incorrect but immensely human and understandable belief that doctors can fix and heal anything, if only they were willing too…
Sorry for the following detour, but this reminds me of when I was growing up… My mother died of highly metastasized breast cancer that had been misdiagnosed twice, first after she contracted it in the early sixties and next, initially, when it had metastasized into her bones and elsewhere, years later (the latter causing a lot of unnecessary pain because she was sent to a physiotherapist). As a result, my dad had very little faith left in medical professionals. In between, my youngest sister had also been misdiagnosed and almost died as a result, but her case was a very common mistake in those days and perhaps still is (appendicitis mistaken for a bladder problem). So I can’t help but wonder what role people’s previous experiences with medical specialists and illness plays in these cases that make the media.
Your story resonates deeply with me – both my mother and fiancé were appallingly misdiagnosed with their cancers, indeed the mistakes arguably cost my mother her life, and yet I (personally at least) do not dismiss the opinion of medical specialists on the back of such failures. Maybe I have a more nuanced view, driven by a family deeply rooted in healthcare and my education – namely that doctors are fallible yet often noble, and with the NHS you have to be your own advocate.
I sense there is also a power dynamic at work here. I, personally, would be more than happy to study medical reports, information on clinical trials and the like, and would feel entirely comfortable conversing with researchers even without a formal medical background. For a family with a different background, such a task could be daunting and beyond any comparable experience. Once faith in the legal system is damaged in the early interactions, it is easy for the void to be filled by someone suggesting that generating pressure through public opinion would be a viable strategy. After the ball starts to roll, entities with different aims become involved as appeals to emotion are their main tactic of moral persuasion, and they need an emotional story.
Philip, that’s a really good point. Although I worked for the NHS for over 20 yrs I have had my share of very poor care. Like you I fought hard to not let it colour my view of the NHS in general and now have an excellent Consultant.
It’s so important to judge each case on its own individual merits. Those that have had poor care from the NHS deserve to be heard and have the facts of their case known, it’s very sad when they then extrapolate their experiences to others. Everyone deserves a fair hearing, including clinicians. The court judgement says that Alder Hey tried very hard to engage with the parents including employing outside mediators to try and come to an agreement.
Considering how often care is withdrawn in U.K. ITU’s due to futility it doesn’t appear that a high percentage of these cases end up in court.
The recent difference is very highly publicised social media campaigns which are very polarising as only one side of the argument is ever presented given that the Hospital is bound by patient confidentiality.
Then there is the involvement of groups such as the Christian Legal Centre and other organisation who I can’t help but feel are more interested in pursuing their own agendas via the obviously distraught parents.
The scenes at Alder Hey last weekend were shocking. Comments on social media about “ storming “ the Hospital and removing a child were very worrying. Are we going to reach a situation where children in ITU need an armed guard? Do we really think it’s acceptable to spit at, intimidate and call NHS staff murderers, Nazis and scum? Where is this all going to end? Although the court judgements are published very few “ supporters “ take the time to read them and understand the basis on which the decision was reached.
We need to do more to protect NHS staff in these situations and correct the narrative that parents should have unfettered rights over their children. If we don’t then who is going to want to work in PICU and be subject to that sort of abuse.
Sad, yes, and worrisome. Where does the disconnect stem from, in your opinion? When and why does the dialogue falter?
I suspect there are a number of reasons. The concept of medical futility is difficult to grasp unless you have had direct experience of it. People don’t understand that you don’t need a diagnosis to know the prognosis in this case.
Neurology is hard to understand, especially the concept of spinal reflex with relation to coma.
People still believe in “ miracles “ and don’t realise that the ability to keep people alive using Intensive care outweighs our ability to treat the underlying condition.
Then of course there are the conspiracy theorists including the anti vaxxers, the “ they want his organs “, Alder Hey want to cover up a “ mistake “ etc etc.
Some people really seem to believe that parents should have absolute rights over their children which is essentially the legal argument being extended.
I do think we need to have a conversation about health care and the direction we are heading in. Do we value quantity or quality of life, are we willing to pay the 0.5 million £’s per year it costs for a care package for everyone or could the money be better spent on other things ( distributive justice ).
My bottom line is that none of us have the right to insist on treatment, just to refuse it. I have experience of ITU and couldn’t subject my children to that if they didn’t derive some pleasure from life. The ability to pay for treatment overseas shouldn’t come into it, many wouldn’t want to display their children on social media the way that Alfie’s parents have done to raise the money.
Actual facts need to win out, his brain is mainly fluid and the connections that would allow him to see, hear, feel, react etc have disappeared. If we can’t protect the rights of a child in that position then we are in a very sorry moral state. We all love our kids but letting parents hide from the truth isn’t doing them any favours long term. If parents can’t accept the medical facts then recourse to the legal system is regrettably the only option.
Lynn, thanks. (See also my reply above.) I agree that it is a very difficult subject with many angles and considerations.
Defining quality of life is very hard, and everyone probably defines it differently, as it is such a personal matter.
And yes, it can be impossible for an outsider to assess someone’s chances. Here were I live, there is a man who up until about a year ago seemed completely unaware of his surroundings to me and also appeared completely incapable of any kind of movement. (I don’t know anything about his background.) To my utter surprise and delight, he is now very aware, and much more mobile and active. I had not expected that at all. That illustrates the problem of outsiders trying to assess a situation such as that of Alfie, Charlie and others without having the proper information.
(The involvement of various organizations who may have agendas that only benefit their own objectives may be deplorable, not to say infuriating at times, but perhaps this also makes more people think about these issues and discuss them. That may be good for the longer term.)
There are also countries where parental rights are removed when treatment is refused. Can you give some examples of treatments that you would refuse if it came to your own children?
My youngest is 16 so old enough now to choose themselves.
Personally I wouldn’t want palliative chemotherapy or to live out the rest of my life on a ventilator.
I worked in ITU for a number of years, towards the end of that time I increasingly asked myself what ITU care was achieving, mainly it seemed to be discharge from the ITU without questioning what quality of life would follow.
I am very aware of my own mortality as have a rare disease myself and quite a few related co morbidities. I have been very clear to my family about my wishes, quality of life remains my utmost priority.
We all know of instances where patients have survived against all the odds but the evidence in this case is overwhelming, brain tissue that has liquified can’t regenerate or develop new pathways.
Of course all of these are personal decisions and as far as possible we should uphold an individual’s wishes but it’s a very slippery slope to deny that Children have rights separate from their parents. I would always welcome discussion but the general quality of the discussion in this case has been poor. Part of that is that to make a case and keep social media interest going the admins of the “ army “ have relayed some very questionable information with no basis in actual fact. They have never shared the court judgements on their support page, if you have a look at the Facebook group there are multiple posts calling NHS scum, murderers, Nazis, saying that they want his organs to sell etc etc. How can we allow a narrative like that to prevail?
I don’t think it is possible to prevent that narrative – as Cass Sunstein has said, ‘Social media companies such as Facebook can sort us ever more efficiently into groups of the like-minded, creating echo chambers that amplify our views’.
The saving grace, in this specific context, is that those who read this sort of blog, and appreciate the ethical complexity of the topic, almost certainly know that the easy answers being peddled on Facebook and Twitter start to falter the moment they get exposed to any of the moral dilemmas you can construct. Those people who have agendas to change the law might therefore be able to incite an angry mob, but they will ultimately need to engage with the ethics and morality discussion, which is where they are weakest.
I am grateful to Dominic Wilkinson and his colleagues for creating this balanced and insightful resource on this most complex of areas. As long as people are able to read content like this, the zealots and the unthoughtful will struggle to make the (legal) situation worse.
Agreed, their commentary on the Guard case was excellent as well. I just wish more people would read it!
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