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Teenagers and the right to be wrong

A teenager who is a Jehovah’s witness declines a potentially
life-saving blood transfusion. Another teenager, self-conscious and
strongly believing that it will make her happier, requests a boob job.
When minors make decisions that may be against their own best interests, should we respect their decisions?

In the UK this week, there has been much discussion about the decision of 13 year Hannah Jones to refuse a heart transplant. Without one it is felt to be likely that she will die in the next six months. The transplant would be likely to prolong her life by at least several years, and improve her ability to get around, be active and independent. Half the adults in the UK who receive heart transplants live for 10 years or longer. In Hannah’s case the transplant would carry the extra risk of a recurrence of her leukaemia (which she had when she was a young child).

At the same time, an article has been published in the Journal of Adolescent Health describing the rising popularity in the US of cosmetic surgery for teenagers. In 2005 it is estimated that more than 330,000 cosmetic procedures were performed on patients younger than 18 years old in the United States. These include liposuctions, breast augmentations and tummy tucks. The article points out that there is no evidence that cosmetic surgery improves body image in the long term, and no evidence that it provides significant psychological benefits. The authors also point out that some of those teenagers requesting surgery may have eating disorders, or a pathologically distorted sense of their body (body dysmorphic disorder). Studies of teenagers who are dissatisfied with their own appearance show that this concern diminishes over time whether or not they have surgery to amend it.

Some might see these contrasting cases as autonomy gone awry. Medical decisions for minors have traditionally been guided by the idea of their ‘best interests’. Doctors are exhorted to maximise the benefits for their young patients while minimising the harms or burdens of treatment. This is a form of paternalism that is justified on the basis of the still-evolving capacity of minors to rationally weigh up the pros and cons of treatment. However there has been an increasing interest in the voice of the child, and an increasing tendency to uphold the autonomy of the adolescent in medical and ethical decision-making.

We might respect autonomy for different reasons. One reason is that the wishes of the individual may be the best guide as to what is actually in their interests. Alternatively autonomy may be valuable in itself. But either way, respect for autonomy is only meaningful if we are prepared to respect an individual’s right to make what appears to be the wrong decision. (Doctors pay lip service to autonomy by obtaining consent from patients, but as long as patients agree with the recommendations of their doctor autonomy is moot). And in the sorts of cases outlined above it seems entirely possible that teenagers will get it wrong. Furthermore respecting the wishes of teenagers may paradoxically threaten their future autonomy by limiting or foreclosing future choices.

So if a teenager refuses a blood transfusion or requests cosmetic surgery what should we do? We can try to work out whether what they are requesting is plausibly consistent with their best interests. If so, we can ‘respect’ their wishes with a clear conscience. In fact I think that this is what is actually going on in Hannah’s case. It is interesting that the public reaction to Hannah’s choice has
almost uniformly been to support her decision to forego further
surgery. I suspect that in her case there is enough uncertainty about
the risks and burdens of treatment to make it plausible that palliative
care is in her interests.

But if they are making the ‘wrong’ choice we need to decide whether we should respect that. We can try to assess their competence – though in practice doctors are not particularly good at determining this (except when it is obvious). And this seems to apply a higher standard of decision-making than is required of adults (for whom there is an assumption of competence). Alternatively we could bite the bullet and reject their request – on the grounds of safeguarding their current and future best interests. Perhaps we should resist the trend to allow younger and younger patients control over medical decisions. Paternalism still has a place in medicine.

Why children have a say over care BBC 11/11/08

Terminally ill teen wins the right to die ABC News 12/11/08

Dying girl Hannah Jones wins fight to turn down transplant Times 11/11/08

Hannah’s Choice: Saying No to a New Heart Time magazine 13/11/08

Deborah Orr: When doctors and parents clash over life and death Independent 12/11/08

Teenagers and cosmetic surgery: focus on breast augmentation and liposuction. J Adolesc Health Oct 2008

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