Alfie Evans and Charlie Gard—should the law change?
BMJ 2018; 361 doi: https://doi.org/10.1136/bmj.k1891 (Published 01 May 2018) Cite this as: BMJ 2018;361:k1891Opinion: Alfie Evans and guerrilla warfare
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Identifying futility can only happen in relation to something else: for the parent it may be that life preserved, with no clear evidence the child is suffering, is not futile. It may be for wider society that expending limited resources with no clear end point is futility epitomised. What is striking in the Alfie Evans case is that resources were not mentioned as a factor, so one assumes the judge was left deciding between two descriptions of suffering and coming to a contrived conclusion about why it may be in someone’s best interest to be allowed to die. Surely, when the patient has never been in a position to voice their views and beliefs, any assessment of best interests and futility has to be coloured by one’s own view and preferences. It is striking to see how much the judge commented on the father’s emotional state and learning; how much did these factors draw or detract the judge from the parent’s view of quality and acceptability?
Of course it would be best to have relationships that foster trust so that these situations do not arise, and look at ways to mitigate the situation so as to avoid court. But if court is inevitable then it seems imperative that parents should have recourse to advocates to represent them. And maybe the role of the judge is to decide, not between competing descriptions of quality of life, but instead, whether the individual right to medical intervention in order to exist or the wider societal right to fair use of resources takes priority. Resources are limited and they do matter. This should not be the primary concern when we treat patients but when there is an impasse, it is usually resources that become the limiting factor. Why can there not be more honesty about this? Of course it could mean that if the family had resources to go elsewhere there is no reason not to allow them to go.
Competing interests: No competing interests
The issue in both clinical cases seems to be around what is and what is not acceptable or ordinary medical treatment in such cases. It is correct, as in a previous comment, that "The problem would not arise if access to high tech medicine and facilities were not available. To say that treatment was harming the child when the opposite - no treatment at all would do far more harm (in fact cause death) is not an argument."
With current poor knowledge about neurological pathologies, it would be rather complex to support scientifically one position or the other, but since there have been in the past situations where medicine has failed (so called biological miracles or unexpected recoveries are frequent rather than expected), the question is: who has the right to say whether a patient's life shall be prolonged days, months or years? The same wrong concept is applicable to other serious diseases, and seems more cynical when in newborns. People who have studied Classics know that in Greek towns (Sparta and Athens) and in Rome there was a sort of Rupe Terpea, a rock used to throw newborns with physical defects. But the real question remains who will take the decision for the parents? Would this be applicable also to some other pathologies as cancer patients who do not have treatment? Would it be applicabe to all Orphan Drug Teatments which are very costly and sometimes offer minimal improvement of the condition? My modest opinion is that parents shall consciously decide when suffering ends for the son/daughter, but the decision - to avoid excessively opimistic or pessimistic outcome - shall also be assisted by counselling from specialists.
As far as I read, the British law that was applied is more than old (16th century) and says that Govermental institutions shall decide about the care of a patient affected by an irreversible condition, irrespective of the parents.
However, in the specific case if some other Italian Hospital would take care of the asistance to the newborn, what's the problem? While ordering that Alfie shall not be moved?...... Pure cynicism!
An appeal to the British Government physicians and people: two cases in a few months seems too much. However, this drama happens in several other cases in other EU countries, without such ostentation of governmental medical and not medical institutions. Think that one day you might be the Charlie or the Alfie and this kind of dispute would not make you happy!
However, British specialists would had fear that another hospital in another country could (partially) solve the clinical problem, so the decision that it would be better to close the file with the word "death".
What about serious addicts where you know that the patient would never follow a rehabilitation programme? Why not give the addict an overdose (as it could happen normally at any time) and be finished?
The reason: this makes the difference between humans and animals!
Competing interests: No competing interests
I fear the authors of this article overlook an important point. They dismiss the option of respecting parental autonomy for the reason that “it would come at considerable cost” and would “consume limited medical resources”. While this is a good argument against state funding of certain treatments, it seems irrelevant to the cases of Alfie Evans or Charlie Gard. In both cases, the parents had identified care which was funded by sources outside of the NHS. Both cases were concerned with the question of who should have the legal right to make decisions about a child’s medical care, rather than a question about clinical commissioning.
In fact, one can think of many examples where treatments are not available on the NHS, but which patients are legally entitled to receive privately or abroad. The question of resource allocation and parental autonomy are, in these cases at least, entirely separable.
As I wrote in a recent BMJ Opinion article during the Charlie Gard case, there are two primary risks associated with honouring parental autonomy, both associated with a child’s welfare[1]. The first is that parents may simply lack the understanding or capacity to make medical decisions about the children. This lack of medical expertise or experience could feasibly lead to harm. The second risk is that some parents may intentionally act in bad faith to bring about harm to their child (although this is not a relevant factor in these cases). As I explain in the article, both risks can be addressed by introducing a rigorous capacity-based assessment, similar to what we use in adult care, as well as some sort of legal safeguard to ensure that parents act in good faith.
If I were the father of either of these children, I hope that I would reach a similar decision to those of their doctors. My personal opinion is that the clinical assessment of their medical teams was entirely rational. However, our judgement about the specific clinical decisions should not cloud our judgement of the more generalisable ethical principles we endorse.
As the authors tentatively suggest, there is a difference between safeguarding a child from harm and seeking a single interpretation of what is in their “best interests”. As the growing “values-based practice” movement suggests in the context of adult care, there can be numerous and equally valid iterations of what is in a patient’s best interests[2]. These decisions rely on normative, rather than scientific, judgements.
We may wish to argue that parents should not be to empowered to make subjective judgements about what is in their child’s best interests. We may believe that these decisions should instead be made by doctors, the courts or the state. But if we are to make this argument, we should at least be consistent. Such an argument would lead to a conclusion that all parental autonomy is invalid, suggesting that doctors should disregard even seemingly minor parental decisions made in primary care and the community.
Instead, doctors currently offer parents the façade of parental autonomy before taking it away when parents are at their most desperate. It is no surprise that the public react with such outrage.
References:
1. https://blogs.bmj.com/bmj/2017/07/21/george-gillett-the-case-of-charlie-...
2. https://valuesbasedpractice.org/
Competing interests: No competing interests
These two cases (Charlie and Alfie) highlight palliative care and what is, and is not, ethically and resourcefully and financially possible. Before any discussion can take place everyone should know what the reality of the situation is. The description of Alfie's cerebral anatomy as being mainly fluid doesn't help. He was maintained on a ventilator for 16 months. Was he brain dead - in which case he would die within days if not weeks, and there should be no discussion required? If not brain dead was he in a persistent vegetative state or other similar condition with indefinite duration and prognosis? If the latter was the case, and from what occurred this must have been the case, the issue seems to be around what is and what is not acceptable or ordinary medical treatment in such cases. The problem would not arise if access to high tech medicine and facilities were not available. To say that treatment was harming the child when the opposite - no treatment at all would do far more harm (in fact cause death) is not an argument.
A person (or guardian in the case of a minor) does not have to undergo extraordinary or extreme treatment from an ethical standpoint, but they may if they so wish. Whether ventilation is an extraordinary or extreme treatment for babies or adults in persistent vegetative state or other chronic states of semi or unconsciousness may depend on the case, but generally it is used and seen as "treatment as usual." The resource issue is important as is the impact on relatives and caring staff. This total burden of care is pitched against the person's right to live and the wishes of loved ones, and who can judge the value or quality of a life? Does it come down to money? If you can afford it you can have it, if not well then sorry? Many families crowd source finances to send children abroad for expensive treatments and transplants and they get them.
Without going over the top and being a zealot you could say that staff in hospitals and ethicists, and the judiciary, should be more sensitive and responsive and supportive of views held by loved ones for the lives of their sick relatives. Everyone does not agree that ventilators should be switched off in such circumstances. When a situation is futile meaning the patient is at risk of imminent death that is one thing, which really is not an issue about longer term palliation. However the term "medically futile" seems to have evolved to mean "there is no hope of improvement or recovery to any significant degree" - which is not medically futile but the management of a chronic enduring illness. If "medically futile" was applied to any other of the chronic diseases with similar implications as in the cases in question, all treatment would be stopped. The term "medically futile" is inappropriate terminology for ongoing situations of illness of whatever degree.
When all the heat is gone and heads are clear the bottom line is something like:
"Alfie will probably live X months or years if ventilation is continued. He will die if ventilation is stopped. What do his guardian's want? Is it possible to facilitate their request or will they have to raise funds themselves? The right to life is the most fundamental right a person has, and if that is what the parents wanted, and it was medically possible (let the experts decide that) and financially affordable, it should have been respected.
Competing interests: No competing interests
Re: Alfie Evans and Charlie Gard—should the law change? The Pain Principle
One of the highlights of this editorial, is when Wilkinson and Savulescu wonder if the harm principle (HP) should be preferred to the best interest principle (BIP). Currently, courts apply the BIP to medical treatment decisions; but this is a too vague principle: both those who require to continue treatments and those who ask to stop them, use the BIP, though differently. Nonetheless, even HP is vague (what is harm?), since it is not based on objective and/or measurable parameters. Thus, if laws should be changed, I propose to base the end-of-life decisions on the HP, but using a measurable parameter, the presence or the unavoidability of untreatable pain/suffering, to acknowledge when to skip treatments from invasive to palliative (though never to euthanasia). I call it the Pain principle (PP): when we are sure that babies, with an extreme brain damage that makes them incapable of conscious relations, go through extreme untreatable pain/suffering, active treatments should be substituted with palliative care; of course, pain should be present or imminent; in the former case, pain can be measured (1) dosing stress hormones, eeg changes, or sympathetic activity; in the latter, it will be predicted on evidence-based observations. Treatments will not be withdrawn because of the disability of the baby, but because of his/her suffering that treatments provoke or cannot avoid. The aim is not to provoke death (death is not intentionally provoked), but to avoid pain (2). But lacking evident and untreatable pain, the baby’s right to life overrules any other principle; using other principles, e.g. to stop treatments because of a future disability, is stigmatizing disability itself, as the national Italian bioethics committee stated in 2008 (3). If this approach would have been applied to the reported British cases, both those who requested to intensive treatment, and those who requested of discontinuing it, would have found a common ground and hopefully an agreement. PP may be useful for future cases or to change present rules.
REFERENCES
1. Hannibal KE, Bishop MD. Chronic stress, cortisol dysfunction, and pain: a psychoneuroendocrine rationale for stress management in pain rehabilitation. Phys Ther. 2014 Dec;94(12):1816-25
2. Cuman G, Gastmans C. Minors and euthanasia: a systematic review of argument-based ethics literature. Eur J Pediatr. 2017 Jul;176(7):837-847
3. Comitato Nazionale di Bioetica. I grandi Prematuri. 2008. Available at the following URL: http://bioetica.governo.it/media/171398/5-pareri-29-febbraio-2008.pdf
Competing interests: No competing interests