I argue that Brierley et al are wrong to claim that parents who request futile treatment are acting against the interests of their child. A better ethical ground for withholding or withdrawing life-prolonging treatment is not that it is in the interests of the patient to die, but rather on grounds of the limitation of resources and the requirements of distributive justice. Put simply, not all treatment that might be in a person's interests must ethically be provided.
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Imagine that, in the future, you will have a stroke and become unconscious. There is a treatment which has a one in a million chance of restoring you to normal consciousness. It has no side effects. Would you want that treatment to be given to you? I would. I will return to this thought experiment in a moment.
Within a publicly funded health system there are three basic ethical principles that govern the delivery of medical care. First, the pool of treatments to be provided is decided based on principles of distributive justice. Second, those treatments are provided to patients in their best interests. Lastly, competent patients consent to accept treatments offered in their interests, or refuse.
What this case is alleged to be about, but is not: the best interests of the child
The case raises deep questions about how we determine what is in the best interests of a dying or severely disabled patient. In these cases, two-thirds of parents wanted treatment because they were waiting for a miracle. It is important to recognise that one-third of refusals were not religiously motivated. Requests for so-called ‘futile’ care can be religiously motivated and can be self-interested. Doctors involved in these cases believed treatment was ‘burdensome’ and against the child's interests. According to Brierley et al,
“Burdensome is described by the Royal College of Paediatrics and Child Health as situations where death is inevitable and treatment causes pain and discomfort, for example fourth or fifth courses of chemotherapy in disease processes with a zero per cent chance of survival.”
“One extreme example would be perpetuating full intensive care treatment in an anencephalic child.”
However, such claims about the interests of the child are mistaken. Take the last example. An anencephalic child cannot experience anything, cannot suffer pain. As the Law Lords in Bland said of the permanently unconscious Tony Bland, such a human being has no interests. So it cannot be in that person's interests to die. Treatment is neither in their interests nor against their interests.
Yet even this assumes that there is 0% chance of improvement. But nothing in life is completely certain—we can't be certain a miracle will not occur. We can't be certain that some chemotherapy won't have some effect. We can't be certain that medical technology will not radically advance in future years and improve currently untreatable conditions.
Of course, such events are very, very unlikely. But, as far as we know, they are not impossible. So if continued life is not against someone's interests and there is a chance—no matter how small—of that person's life improving, it is rational to accept treatment. For that reason, I would want a treatment with a one in a million chance of cure if the only alternative is death.
The authors, however, believe that continued treatment is against the child's interests for at least two reasons. They write of ‘futile life sustaining therapy, which is causing pain and discomfort’. But pain and discomfort can be treated by analgesia and deep sedation (even anaesthesia) in the intensive care unit. Pain and discomfort are not necessary parts of medical treatment.
Second, they are worried about the dignity of the child, perhaps heavily sedated and having procedures performed on her:
“Spending a lifetime attached to a mechanical ventilator having every bodily function supervised and sanitised by a carer or relative, leaving no dignity or privacy to the child or adult could has been argued as inhumane.”
This, however, is hugely contentious. Some people will see the small—albeit very small—chance of some recovery or improvement in the future as outweighing the loss of privacy and dignity. It is not clear that a life of unconscious indignity is worse than no life at all.
Although the College of Paediatrics asserts that “withdrawal or withholding of intensive care was considered in the child's best interests … [in cases of] … severe brain damage after prolonged out of hospital cardiac arrest, long periods of drowning, recurrent terminal malignancies and several untreatable progressive neurometabolic diseases,” I have seen no convincing argument to that effect. I am not saying life is always better than death or that some lives are not worth living. I am saying that, after more than 15 years of studying this topic, I have never seen a convincing argument of where precisely to draw that line.
The elephant in the intensive care room: distributive justice
In a recent review of futility in intensive care, Dominic Wilkinson and I ended by saying, “It is ethical for doctors to decline to provide treatment that is judged to be medically inappropriate or futile, either where such treatment is contrary to the interests of the patient or where there are insufficient resources to provide treatment.”1
While it is difficult to say when a human being's life is worse than death for that individual, it is much more tractable to decide when one life is better than another and when one life is more worth saving. Faced with the choice between providing an intensive care bed to an anencephalic child and one who has been at school and was hit by a cricket ball and will return to normal life, we should provide the bed to the child hit by the cricket ball.
The authors briefly allude to the issue of distributive justice at the end of their paper, but this issue is indeed the core issue. It is reasonable to withdraw a feeding tube from a permanently unconscious man like Tony Bland, not because it is in his interests but because, in a publicly funded health system, society cannot afford to keep people alive with such poor prognoses.
While I might want a treatment with a one in a million chance of a cure, society is entitled to say that such a treatment cannot be afforded within a public health system, even if there is a small chance of cure. The chance is just too small.
Treatment limitation decisions are best made, not in the alleged interests of patients, but on distributive justice grounds. When parents request ‘futile’ or very-low-chance-of-success treatments for religious or non-religious reasons, their requests can be legitimately denied on distributive justice grounds.
If we allow publicly funded medical facilities to be used for patients who are waiting for miracles to occur when we would not otherwise treat such patients on justice grounds, then we are discriminating against atheists, agnostics and followers of faiths that do not accept miracle claims, but who might otherwise have legitimate reasons to seek ‘futile’ or very-low-chance-of-success treatments.2
It has been a convenient fiction to tell patients and parents that treatment is not in their interests because we can't face up to the elephant of distributive justice and the inevitable limitations in our medical resources. But perhaps if we openly discussed such questions of distributive justice, we could answer them better.3
Competing interests None.
Provenance and peer review Commissioned; internally peer reviewed.
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