by Dominic Wilkinson
In an interesting legal case earlier this year, the court held an emergency hearing about the medical care of a 16 year old, recently diagnosed with acute leukaemia. The hearing, conducted remotely in the middle of the night, was to decide whether she should have medical treatment imposed against her wishes. Should an “intelligent young person”, who had no diagnosed mental illness or condition affecting her brain, but who faced a real possibility of serious, even life threatening complications be allowed to refuse medical treatment?
Treatment decisions and nearly-adults
The background to this case is the somewhat ambiguous status in England and Wales of older teenagers and medical decisions. Those who are 18 or older can refuse any and all medical treatment – as long as they are judged to have “capacity”. It seemed fairly likely (at least on my reading) that although AN was judged to lack capacity, that an adult in her circumstances would not have had treatment imposed.*
Adolescents who are 16 or 17 (and, if they are “Gillick competent”, younger than this) can consent to medical treatment. However, there is a long-standing legal precedent that implies that (at least for life-saving treatment), the court can override their refusal. For example, this has been found to permit imposing treatment on a 16 year old with anorexia. More recently, it applied to a 16 year old Jehovah’s witness who was refusing a blood transfusion.
Shades of refusal
There are interesting questions raised by these cases about whether the existing law relating to near-adults is coherent. (For a previous blog discussing those questions seehttps://blog.practicalethics.ox.ac.uk/2020/11/refusal-redux-revisiting-debate-about-adolescent-refusal-of-treatment/ ) Here, I wish to make a different point.
If we think that it is justified to sometimes overrule a teenager’s refusal of treatment there are several ethical factors that should be considered.
One factor relates to the degree of maturity and understanding of the young person. The greater that maturity – the more significance that should be given to their wishes.
A second factor relates to the risk to health posed by foregoing treatment. The more serious and the more likely the threat, the stronger the reason to overrule them.
But a different factor – exemplified by the case, is the strength of the young person’s refusal. Although there is good reason to in general regard refusal as a simple binary (“No means no”), we could imagine a spectrum of cases.
- Coercible refusal. An individual refuses (and will continue to refuse if asked) treatment, but will agree to receive treatment if others insist that they must receive it.
- Non-resistance. An individual refuses treatment, but will accept treatment if it is imposed on them.
- Passive refusal. An individual refuses treatment, and will continue to refuse treatment if it is imposed. Nevertheless, they will not physically resist treatment.
- Active opposition requiring minimal restraint. An individual refuses treatment. Imposing treatment would require some degree of restraint.
- Active opposition requiring intense restraint. An individual will require significant physical or chemical restraint for treatment to be imposed.
These overlapping possibilities imply a spectrum of opposition to treatment. Parents will likely be familiar with the phenomenon that adolescents (and younger children) resist things that parents think would be good for them (eating greens, doing homework, brushing teeth) to a greater or lesser degree. Some of the lower stages might imply a lesser strength of opposition, or they might indicate a lower burden were choices to be imposed. When it comes to adults with capacity, the law doesn’t distinguish between different levels of refusal (‘No’ does mean no). But it might appear important for patients who lack capacity (whether adults or young people) for this to at least be taken into consideration.
In the legal case, it was significant that the patient was thought likely to accept treatment if it were imposed on her. Her doctor testified that “Although I very much understand that she doesn’t want to stay, my impression is that if we advise her that that is required, I think she will’”, implying that her refusal was perhaps in categories B or C above. Furthermore, the trust indicated that they did not plan any form of restraint for the patient – only to “ensure that she is not free to leave the hospital”**
Was this the right decision? On the evidence presented, there appeared to be a fairly serious threat to the young person’s health, while it appeared that she would not actively oppose treatment. Had the threat been less pressing, or her opposition more stringent, the court might have (and arguably should have) reached a different conclusion.
The emergency hearing was in early February, and there was a plan for a further hearing in the following week to discuss further treatment. There is no recording of that hearing, so perhaps the young person subsequently changed her mind and accepted treatment of her leukaemia. I hope so.
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*In the judgement, the following was noted
“Dr X, in company with psychologist Dr Z, performed a capacity assessment for AN, and concluded that she did not have clinical/physiological impairment of brain functioning, nor any history of mental health disorder. However, she found that AN was not accepting of her diagnosis, or of the inevitability that she would become unwell in the absence of urgent treatment. This led her in her statement to conclude that AN ‘does not display sufficient capacity today to make decisions about her treatment/safety’.”
Whether someone who does not “accept her diagnosis” should be regarded as lacking capacity is an interesting question – outside the scope of this blog.
**It wasn’t clear from the judgement what it would mean to ensure that the patient would not be free to leave the hospital without imposing any form of restraint. For example, a locked door would be a form of restraint.
Image: https://commons.wikimedia.org/wiki/File:Refusal_of_treatment.jpg
The pure legal view should be clear: if person is under 18, his/her opinion should be taken into account when the medical treatment is provided. But the legal representants (mostly parents) decide about the treatment finally.
However the general question can be imposed together with this case.
It is the question about the authority.
The authority of the Church, teachers, parents was not questioned in the old (good?) times. But today it is in very massive way.
Also the sophisticated options A – E mentioned above are esentially nothing else than doubting the will of parents.
But how far we can go in this doubting of authority?
How far we should think that the recent order should be completely changed?
Because in the final circumstance the recent authority will be just replaced by another.
Remember Plato who said that democracy breaks down just due to lack of authority. According to Plato the rules will be crumbled and there will be so much confusion that the authoritarian ruler seizes the power again. Just to establish lost “order”….
The second shade of refusal factor mentioned appears to direct wrongly – ‘The more serious and the more likely the threat, the stronger the reason to overrule them.’. This would lean towards interpretations that when certain death is inevitable always overrule – clearly promoting nonsensical responses for any social group mix based upon individual consent. Perhaps the statement was created to reflect cases where time was of the essence, and further, better informed choice would be available for the patient later on. But for many types of situations that factor does appear to need some carefully considered revision (my apologies if that were merely a summary statement for something fuller and more rounded..)
Does this type of dilemma not have very similar difficulties to the application of regulative remedies more widely. Many will accept a need exists for a set of rules to regulate conduct within and between social groups (what rules are necessary may differ). Once a set of rules exists various interpretations of them, and how to follow them, come into being, leading to wide variations of conduct, from mainly ignoring any rules, to rigidly following the rules, to demanding somebody provide precise guidance when any decision is required, to avoiding any conflict.
Mainly ignoring the rules teaches and promotes Trumpian type behavioural patterns;
Rigid adherence to the rules often leads to much discontent, yet a fair and impartial level of adherence assures continuing effectiveness and reduces opportunities for self-interest to supersede wider social interests in important areas.
Demanding precise guidance obfuscates any flexibility built into the rules, which then for certain world views typically drives towards totally ignoring them.
Avoiding any conflict seeks to accept any rules applied, until aspects become intolerable.
Why is it that all mature teenagers are expected to fully comprehend something most adults rarely consider on the few occasions they make any choice. Are teenagers always wrong when their actions fall outside any expected parameters, or could that be an indication existing expectations have fallen behind social changes? Health and life are extremely important, as are autonomy and freedom of choice. Where different thought processes create considered outcomes which differ from the norm, it is a social norm to attempt to intervene and bring the outcomes within what is perceived as that happy medium, yet perhaps the real question is why is the supposed norm not desirable. And whilst ethical arguments and legal regimes are ways of achieving compliance with a norm, they are not always rigid or always rigidly interpreted and certainly do not yet always either allow or facilitate all aspects of every individuals’ autonomic responses.
N.B. I avoided inserting the option – attempting to change the rules – as a means of emphasising the important point about wrongly aligned expectations/norms, for example China’s authoritarian response to COVID considered within an existing regulative framework/norms/expectations. Clearly in all the options listed attempts would be made to change the rules in their favour, so identifying the dysfunctional consequences, and expected countermeasures, for the differing options can reveal both dangerous and beneficial moral/ethical aspects when collating that material.