George Gillett: The case of Charlie Gard should make us question our attitudes to parental autonomy

We should learn from the success of the Mental Capacity Act, and consider introducing capacity-based assessments for parental autonomy

The year is 2040. After years of campaigning, the UK introduces its first assisted dying legislation. Active euthanasia is legalised for those suffering from a terminal illness and a number of patients make use of the legislation in the following months.

A few years later, a baby lies in a London Hospital, trapped in a bitter dispute between his parents and doctors. He lives with a terminal illness causing some pain, but doesn’t require ventilation or life support. His doctors believe it in his best interests to die, and to his parents’ horror, recommend that he should undergo active euthanasia to alleviate his suffering. The courts rule in favour of the doctors’ judgement and prevent the parents from removing their child from the hospital. The baby dies by lethal injection a week later.

Although such a scenario may feel like a dystopian nightmare, it is no longer difficult to imagine. The courts’ judgement on the Charlie Gard case effectively amounts to a justification for passive euthanasia—the withdrawal of medical treatment with the purpose of ending life—against his parent’s wishes. If we are to be convinced by euthanasia campaigners, who argue that there is no moral difference between withdrawing life-supporting treatment and administering lethal treatment, it is difficult to draw an ethical distinction between the cases. Such a scenario provides a disturbing insight into the natural conclusions which follow from the thinking behind the Charlie Gard ruling.

This isn’t to scaremonger. The most recent assisted dying bill debated in Parliament in 2014 neglected to mention child euthanasia, and the care of children has been largely ignored in public discussion of the topic. Yet in countries where adult euthanasia laws have been introduced, similar measures for children have followed soon after. In the Netherlands, for instance, child euthanasia remains technically illegal but is effectively decriminalised under guidelines set out by the Groningen protocol.

However, the real controversy of the Charlie Gard case isn’t whether it is in Charlie’s ‘best interests’ to die. Patients, doctors and parents make similar decisions in hospitals across the country every week and the idea that death can be in a patient’s ‘best interests’ is no longer a contentious one in modern medicine. Arguments about the sanctity of life, despite being used by the Pope and numerous media commentators, have little role in this case.

Instead, as the report filed by Great Ormond Street Hospital acknowledged, the contentious aspect of the case is the issue surrounding parental autonomy. “A world where only parents speak and decide for children is far from the world in which GOSH treats its patients,” read the statement filed to the court. However as the intuitive response to the above scenario reveals, while recognising the limits of parental autonomy, we also regard it to hold some value.

How might we navigate this dilemma? As clinicians, what the case of Charlie Gard should teach us is that our current approach to parental autonomy is not fit for purpose and is little more than a façade.

What is a right to decision-making worth, if the right to make decisions is conditional on doctors and judges agreeing with them? That is the question Charlie Gard’s parents have been left with. It’s also a question which echoes paternalistic medicine, where doctors historically acted in a patient’s ‘best interests’, without involving them in decision-making. As the importance of patient autonomy increased, such practices increasingly came to be viewed as problematic.

This problem was solved by the introduction of the Mental Capacity Act 2005, which provided a framework around which to safeguard autonomy. It allowed doctors to assess whether patients had capacity to make decisions, and if they were deemed to possess capacity, safeguarded their right to autonomy. Doctors were no longer able to over-ride a patient’s decisions simply because they disagreed with them. Instead, doctors were only able to over-ride a patient’s wishes if they had identified an objective problem with their decision-making processes, centred around their ability to understand and retain the information necessary to make and communicate an informed decision. These capacity-assessments, which require fewer value judgements than paternalistic decision-making, now form the legal basis of patient autonomy.

Perhaps then, legislators should learn from the success of the Mental Capacity Act, and consider introducing capacity-based assessments for parental autonomy. Such assessments would clearly require a criterion in addition to those outlined in the Mental Capacity Act—to ensure that parents act in good faith—to safeguard against maleficence and abuse. Nonetheless, developing such a criteria would not be impossible.

Of course, it might be that such a framework would not have changed the outcome of the Charlie Gard case. Doctors and judges may have determined that Charlie’s parents lacked capacity—due to the emotional turmoil of the situation, or their inability to understand the technical detail of the case—although it is not possible to assess this from afar.

However, what a capacity-based assessment of parental autonomy would do is introduce some consistency in the law, and provide a far more sophisticated and ethically justified approach than the one we currently have. It would be honest with parents about when they have a right to make decisions on behalf of their children and when they do not, rather than offering parents the façade of parental autonomy before selectively over-ruling the decisions doctors disagree with.

If clinicians are to show integrity and dignity to their patients and their families, the law should equip them with transparent guidance to do so. The uncertainty surrounding the case of Charlie Gard and the despicable abuse levelled at Great Ormond Street Hospital staff should provide a strong impetus for reform of the law. Only once we’ve clarified our own attitudes towards parental autonomy can we begin to effectively communicate decisions to patients, their families and the wider public. Until then, our collective doublethink surrounding parental autonomy will only contribute to greater uncertainty.

George Gillett is a student doctor and freelance journalist. He tweets at @george_gillett

Competing interests: None declared.

  • Joshua Parker

    The main thrust of this blog post regards the addition of a ‘capacity-based assessment of parental autonomy’ which would allow us to distinguish parents who ‘have the right to make decisions on behalf of their children and when they do not’. Gillett sets the scene by outlining a ‘dystopian nightmare’ in the year 2040 about euthanasia. However this seems utterly peripheral to the question of parental autonomy and hence I will focus on his core claim.

    Gillett’s concern is that the Charlie Gard case ‘echoes paternalistic medicine’. He believes that adding parental autonomy based on the Mental Capacity Act will steer us clear of this concern. Just to be clear on the basics: The Mental Capacity Act is there to safeguard adult autonomy and give competent individuals a wide berth when making decisions that regard themselves. It essentially says that where a patient has capacity their right to refuse medical treatment is absolute. There is a wealth of case law that supports this. The exception to this is where there is harm to others and I’m sure I don’t need to quote J.S Mill to bolster this legal principle with its ethical underpinning. Where a patient requests a specific treatment is slightly more tricky, but regarding paternalism it is straightforward: if somebody has capacity doctors cannot undermine them and treat them in their best interests.

    So far so trivial. But Charlie Gard doesn’t have capacity. This means, legally, decision-making falls to the ‘best interests’ test. But Gillett tells us that best interests isn’t the controversial point here, it is parental autonomy and as a corollary parental capacity. So, where a child does not have capacity, the question Gillett wants to ask is: do the parents have capacity?

    Let’s say parents do have capacity, does that mean that they can simply decide whatever they want for their child? Does this mean that parents with capacity can make sure their little girl undergoes FGM? Does that mean that parents with capacity can teach their children that black people are inferior to white people, or take their children out of school and let them grow up with no education whatsoever? Clearly the answer is no, and Gillett acknowledges the requirement to ‘to safeguard against maleficence and abuse’. Essentially Gillett thinks that parents with capacity should be allow to make decisions on their children’s behalf unless there is maleficence or abuse. But if we replace ‘maleficence and abuse’ with ‘best interests’ we are de facto at the status quo. Inquires into parental capacity alone doesn’t tell us much, we need to know the content of their decision and assess it in relation to the child’s interests. We already allow parents a large amount of freedom to decide for their children and set a boundary at best interests. If we believe that the parents are acting against the child’s best interests then difficult conversations need to happen regarding what is in the child’s best interests and that might involve the courts. What is important is that once we believe that a child’s best interests are in question, parental capacity is irrelevant. The only question parents, doctors and the courts want to ask is: what is in the child’s best interests?

    What if the parents don’t have capacity? In this case we want to consider the impact of what the parents are doing on the child. There are plenty of parents who do not understand the value of vaccination for their children, or who do not weigh the benefits of education but still vaccinate their children and send them to school. The state is not interested in these parents because they are acting in the child’s best interests. So if the parents are acapacitous then again the only question we care about is: what is in the child’s best interests?

    What are we left with then? Gillard has essentially argued that ‘our current approach to parental autonomy is not fit for purpose and is little more than a façade.’ His solution is to replace it with a system that looks exactly the same as what we currently have. Perhaps I am missing something, but it is not clear how parental capacity is relevant, distinguishes those that can make decisions and those that can’t or how Gillett’s proposal adds to the current mechanisms of parental decision-making and safeguarding children.

    Gillett does note the problem of making decisions ‘without involving [parents] in decision-making’. Here we agree. This is problematic, but we differ in how we remedy this. I want to say that the involvement of parents in decision-making should be in better determining what best interests actually are. I believe that parents – or even families generally for that matter – should have a greater say in what is best for their child (or incapacitated family member), what they value and what they think a good life for their child looks like. Clearly I’m not arguing that a parent’s picture of best interests is absolute or overriding, but I do think that it could be more esoteric than what most courts and doctors believe. The question really is ‘what is in Charlie Gard’s best interests?’, working out what is in a person’s best interests is hard and my concern is that the parent’s view should carry significant weight. The question of parental capacity is not the controversial or weighty one here.

  • Paul Miller

    You make an excellent point, Joshua. Any “mental capacity” test for parents, guardians or family members in general will, by definition, set “best interests” standards for judging that capacity. The only “advancement” is the creation of an extra legal step to remove parents or guardians from the decision-making process. More chillingly, if “emotional turmoil” is a legal criterion allowing withdrawal of decision-making power, it is difficult to see how any parent who loves her critically-ill child could disagree with “experts” and avoid being deemed incapacitated.

    The suggestion that parents must demonstrate “good faith” is also troubling. “Good faith” in what? The state’s definition of what constitutes a life worth living, or even saving? At what low percentage chance of success does a proposed treatment sought by parents become “maleficence” or “abuse”? If that is just another judgment call of the experts, are we not right back where we started?

    I conclude by noting that the case of Charlie Gard has elevated worldwide discussion of these crucial questions of medical ethics, state powers and parental rights. It appears the doctors are wrong; his life has value and purpose after all.

  • Earth Angel

    The issues in the case of Charlie Gard extend much wider .The family Counsel was right to convey that there were wider legal issues to consider. The public furore over this cases is essentially because it is felt that parents are stripped of their rights when it comes to their children and this issue even extends to a family’s rights when dealing with an incapacitated adult in a medical setting particularly when the family is trying to argue on behalf of their loved ones interests and intentions. The Mental Capacity Act does not seem to be an adequate safeguard in these instances

    What appears to have been an aggravating feature in this case and an issue conveyed by the family’s Counsel is that this matter should not be before the Courts or was it for a Judge to decide. I happen to have sympathy when comments made to the effect that the family/parents rights don’t matter which are often echoed by medics inflame often very tense situations and as such the professional are seen as out of touch and hubristic breeding hostility. A persons beliefs and religion also feature in decisions.. The main issue is what weight is attached to the family decision and who should make the best interests decision,the family or the state. I feel in a reasonable caring parent it is the parents decision alone, they know their child and know what is right for them. Article 2 of Human Rights comes to effect the right to life and I agree with the above comment that parental capacity issues should hold weight .Further Article 8 Right to family life features also.

    One of the problems with the Charlie Gard case was that there seemed to be a lack of trust between the family and the medical profession and later the legal profession due to the perceived lack of impartiality. This then in turn gave credence to the assertion that this child was captive of the state. Frankly from some of the comments by Counsel for GOSH and the Judge himself it is not entirely unreasonable for someone to form that opinion. Patients parents/ family’s should be allowed to obtain another body of opinion from within and outside of the UK, it is their prerogative without interference. In medical Court cases there are medical opinions from both parties proffered therefore if another treatment is identified a parent/family should be able to make the decision on behalf of the family member or child .Attempting to impede this right amplifies the notion the state controls or is viewed as the medical profession acting outside their parameters and being arrogant.

    Adults who have become incapacitated family often try to convey the patients wishes and feelings which have all too often been ignored . In the cases of end of life care when decisions are made without checking capacity or ability to consent swift moves are made to withdraw treatment/put in place DNR often without informing the family or periodic reviews.

    The issues do not just relate to parents of child patients and therefore ethics and the law need to be considered very carefully or alternatively in adult cases there will be more living wills being presented at Hospital bedsides or Power of Attorneys and even more costly/protracted Court cases which is not good for the family,the patient, the reputation of the hospital/medical profession and finally the public purse.

  • Thanks for your comments, they’ve raised some interesting points.

    I agree, to some extent, with your concerns that a mental capacity test for parents would involve a value-judgement. Of course, the judgement of whether a parent is acting in ‘good faith’ depends on a normative judgement to some extent. However, I do not believe it is equivalent to making a ‘best interests’ judgement on the child’s behalf, as you suggest, and so I don’t agree with the argument made by you & Joshua Parker that a capacity-based system would be no different to the current law.

    Why is it different? Well, I believe that there can be a number of ‘acceptable’ options for treatment, and that these can be discerned by value-judgements, all of which act in the ‘good faith’ of a patient. However, only one of these judgements may be deemed in the ‘best interests’ of a patient. I do not share your faith that in every case there is a single valid ‘best interests’ treatment option and, as you seem to imply, that to pursue any other option amounts to abuse. For what it’s worth, I think that would be a valid ethical stance to take, but I don’t think it’s well-grounded in reality – the emerging field of values-based practice certainly suggests its not.

    Of course, in the Charlie Gard case it might be that any other option other than to allow Charlie to die would amount abuse. But if this is your argument, and the thinking of judges, I think they should be prepared to state & justify that. What’s important to my wider argument, however, is that we are debating law & ethical precedents, not just the individual case of Charlie Gard.

    Finally, with regards to your point about ’emotional turmoil’ being a legal criterion to allow the withdrawal of decision-making power, I never suggested that should be the case. Perhaps I should have maybe made this more clear in the blog (apologies!) – I just meant to suggest that parents who respond badly to the emotional turmoil of a situation, e.g. with a stress reaction, may lose capacity to make decisions. In this sense, it isn’t the ’emotional turmoil’ per se that would justify the judgement that they lacked capacity, but the effect it might have had on their cognitive abilities.

  • For what it’s worth, I agree that clinicians should be examined on their ability to make difficult ethical decisions, which is an example of the “capacity testing” you are asking for. UK medical schools do attempt to integrate this into the curriculum!

    With regards to your point about the language and rhetoric surrounding disability & particularly Down syndrome, I agree that it is an issue worthy of consideration. I’ve previously written about it here: http://bit.ly/2uTWuP9

    I fear that your other points about my argument are mistaken. The blog doesn’t pass judgement on the Charlie Gard case at all, but merely attempts to propose an alternative legal approach to navigate the difficult dilemma between respecting parental autonomy & protecting a child’s rights. As you acknowledge, we have a different view on the sanctity of life, but this isn’t the main thrust of the blog post, nor is the court’s judgement of the Charlie Gard case.