By Dominic Wilkinson.
Last month, in an emergency hearing, the High court in London heard a case that characterises a familiar problem in medical ethics. A 15 year old adolescent (known as ‘X’) with a long-standing medical condition, sickle cell disease, had a very low blood count and required an urgent blood transfusion. However, X is a Jehovah’s Witness and did not wish to receive blood as it was contrary to her religious beliefs. X’s doctors believed that she was at risk of very serious health consequences without a blood transfusion (a stroke, or even death).
Of no great surprise to anyone, the court authorised the emergency blood transfusion for X. Although X was “mature and wise beyond her years”, and judged to be ‘Gillick competent’ (see below), the judge made the decision in her best interests.
That decision is consistent with many previous cases that have come to the courts in the UK and overseas (see here, here, here and here). It is very similar to the case in Ian McEwan’s novel and film “The Children Act” (the book, had been based on real cases before the courts). The courts, in the UK at least, have always decided to over-rule under-eighteens who wish to refuse potentially life-saving treatment. Once the teenager reaches the age of eighteen, the decision is different, however. At that point, if they are judged to have “capacity”, (i.e. they have the ability to use, understand, and communicate the information necessary for a decision) they can refuse even if the treatment would certainly save their life.
Although the decision is unsurprising, the judge made a comment implying that future cases might not always reach the same conclusion. X’s lawyer argued that the traditional legal approach may be “in need of urgent re-analysis and review”, and the judge appeared to agree that these arguments needed careful consideration (not possible acutely given the urgency of X’s case).
Should the ethical and legal approach to adolescents who refuse treatment change?
The legal argument in X’s case in favour of change appeared to be based on the Human Rights Act, other legal developments as well as a Canadian supreme court case from 2009 (AC v Manitoba). But in essence, there are two key ethical arguments.
- Consistency
If X had needed a surgical procedure, or medical treatment (for example contraception), it is clear that law and medical ethics would allow her to consent to receiving those without requiring her parents agreement, or even if her parents disagreed. Adolescents who have sufficient maturity and understanding of the issues, risks and complications are allowed to consent to medical treatment. (This is the concept of “Gillick competence” referring to a famous legal case from the 1980s). The judge in X’s case accepted that she was ‘Gillick competent’. But it appears in one way ethically inconsistent to judge that a patient has the capacity to consent to a treatment, but not to refuse the same treatment.
- The spectrum of autonomy
In modern medical practice and medical ethics, it is well accepted that doctors (and the courts) should pay attention to the views of a young person. They should give greater weight to those views with increasing maturity. The capacity for autonomous decision-making develops gradually over childhood and adolescence. It also develops at a variable pace, such that some young people are able to make autonomous decisions earlier than others.
Once someone is a legal adult, it is assumed that they have the capacity to make decisions about their health. But if autonomy develops gradually, it seems obvious that some young people younger than the age of eighteen will also have the necessary capacity to decide. Why, then, does the current approach adopt a rigid rule that before 18 refusal of treatment is (almost) always overruled? In the Canadian Supreme Court case, the court endorsed an individualistic approach. Autonomy was conceived as being on a sliding scale, with the wishes of a young person taking precedence if the adolescent were sufficiently mature. In at least some subsequent cases, 15 year olds in Canada, in situations very similar to X’s, have not been transfused (see here).
Against a changed approach
But there are also several ethical arguments against changing the approach to these cases.
- Justified paternalism (parentalism)
“Paternalism” has a bad name in medical ethics. It refers to the way that doctors used to believe that they knew best. Stereotypically, the doctor would make decisions about providing or not providing treatment without seriously engaging with the patient’s wishes and values, or even despite knowing that the patient would not agree.
But deciding on behalf of another person, or acting for their benefit (rather than just following their wishes) is not always a bad thing to do. It is, for example, what parents routinely do for their children. Parents make a whole range of decisions motivated by what is best for the child. Despite opposition from the child, parents insist that the child brush her teeth, go to the dentist, take antibiotics, go to school etc. Of course, parents make mistakes, and in some cases will be motivated by other factors, but usually they will be sincerely focused on what would be best. To avoid sexism, we could call this sort of behaviour “parentalism”.
The basic problem is that the parentalistic duty to protect a child conflicts with the child’s emerging autonomy. There is a clash between doing what is best for the child, and what would respect their wishes.
The Canadian Supreme Court decision appears to indicate that we should switch to respecting autonomy when autonomy/capacity is sufficiently developed. This implies that parentalism is justified only by the immaturity of the young person’s ability to decide. Autonomy is, on this view, the only real ethical consideration.
But parentalism is also ethically justified based on the parental duty to protect. Parents have a duty to act in this way in order to safeguard a child’s current and future health and wellbeing. The question of when to allow young people to make decisions to refuse medical treatment depends also on how much ethical weight (and for how long) we give to this protective duty. There is, of course, no simple or objective answer to that question. One country might draw the line at 18, another at 16 or 17, while yet another country may decide not to use any particular time point. The point is that it depends on when we decide to no longer protect the child from themselves.
- A legal right to die
There is another way of framing the debate about cases of treatment refusal. Allowing young people to refuse life-saving medical treatment amounts, in effect, to granting them the right to die.
Although, in countries like the UK, there is no legally available option for adults to obtain assistance in dying, all adults who have capacity can refuse medical treatment. They can refuse blood transfusions if they are a Jehovah’s Witness, or dialysis, or surgery, or artificial ventilation. The legal right to refuse treatment has a clear ethical justification – based on respect for the individual, and the importance of their personal freedom to decide. It means that health professionals must respect the patient’s wishes. However, it is also a right that has very significant consequences.
When should we grant a young person this legal right? There is not a single answer to that. Like other legal rights, that will reflect a societal consensus and determination. But one coherent response would be to link the legal right to refuse treatment to other major impactful legal rights that are attained with adulthood – for example, the right to vote, to drive, to marry. (There are different ages for these in different jurisdictions, and some countries may have more than one. E.g. in England and Wales, the minimum age for marriage is 16 – with parental consent – but the voting age is 18). The basic reasoning would be that the very important and serious right to refusal of medical treatment is part of a package of legal rights that are granted at a particular age.
In the case of X, the judge made a ruling in favour of the transfusion, partly in view of the urgency of the case and the risk of serious harm if the decision were delayed. However, it is still another two years before X turns 18, and she has a chronic condition needing blood transfusions. This problem is likely to recur for X and it is also likely that there will be other cases in the UK of adolescents refusing treatment. Justice Munby encouraged the hospital and the legal teams to consider bringing the issue back to the court in order to facilitate more detailed consideration of the legal (and ethical?) arguments.
This week, the case has returned to the court.
It seems that the legal and ethical debate is not over for teens refusing treatment.
Authors: Dominic Wilkinson.
Affiliations: Oxford Uehiro Centre for Practical Ethics, University of Oxford
Competing interests: None declared
Social media accounts: @NeonatalEthics