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The cost of living and the cost of dying

X, a patient with reliably diagnosed PVS, lies in a hospital bed for years, fed via a nasogastric tube. He has not, and by definition never will have, any capacity for pain, pleasure or any sort of sensation. Devoted family members come each day to sit by his bedside, but he has no idea that they are devoted, or that they exist.
It is expensive to keep him alive. He occupies a bed and consumes a good deal of nursing time.
The NHS Trust responsible for his care has a limited budget. It decides that the money spent on maintaining his merely biological life would be better spent on dialysis machines. It can, and does, justify its decision in purely utilitarian terms. It writes in the minutes of the relevant committee meeting: ‘For the money we spend keeping X alive, we can save the lives of 10 kidney patients, each of whom will have a good quality of life for many years. The QALY arithmetic makes X’s continued existence nonsensical.’
The Trust proposes to withdraw X’s artificial nutrition and hydration. This would result in his death. The Trust makes the conventional (and required) application to court for a declaration that withdrawal would be lawful. It is opposed bitterly by X’s family. They obtain a copy of the committee minutes, and contend that the Trust is acting unlawfully in taking financial considerations into account in making its decision about ANH withdrawal.
The family will face an uphill struggle in resisting the Trust’s application, but the judge will listen sympathetically to their submissions about the relevance of funding. Here are the passages in the cornerstone case of Airedale NHS Trust v Bland [1993] AC 789 which will furrow his brow:
Lord Browne-Wilkinson: pp. 879-880:
‘……the new technology raises practical problems. Given that there are limited resources available for medical care, is it right to devote money to sustaining the lives of those who are, and always will be, unaware of their own existence rather than to treating those who, in a real sense, can be benefited, e.g. those deprived of dialysis for want of resources. Again, the timing of the patient’s death may have a direct impact on the rights of other parties. In the case of a patient suffering from P.V.S. as a result of a road accident, the amount of damages recoverable will depend on whether the patient is kept alive or allowed to die. We were told by the Official Solicitor that there have already been cases in which this factor has been taken into account by relatives of the patient, though there is no question of that in the present case. Again, rights of succession to the estate of the patient may well depend on the timing of his death.
On the moral issues raised by this case, society is not all of one mind. Although it is probably true that the majority would favour the withdrawal of life support in the present case, there is undoubtedly a substantial body of opinion that is strongly opposed. The evidence shows that the Roman Catholic church and orthodox Jews are opposed. Within the medical profession itself, there are those, including one of the very distinguished doctors who gave evidence in this case, who draw a distinction between withholding treatment on the one hand and withholding food and care on the other, the latter not being acceptable. The present case is an extreme one, since Anthony Bland can appreciate nothing whether he is alive or dead: but I have no doubt that less extreme cases will come before the courts on which public opinion may be more sharply divided.
The position therefore, in my view, is that if the judges seek to develop new law to regulate the new circumstances, the law so laid down will of necessity reflect judges’ views on the underlying ethical questions, questions on which there is a legitimate division of opinion. By way of example, although the Court of Appeal in this case, in reaching the conclusion that the withdrawal of food and Anthony Bland’s subsequent death would be for his benefit, attach importance to impalpable factors such as personal dignity and the way Anthony Bland would wish to be remembered but do not take into account spiritual values which, for example, a member of the Roman Catholic church would regard as relevant in assessing such benefit. Where a case raises wholly new moral and social issues, in my judgment it is not for the judges to seek to develop new, all embracing, principles of law in a way which reflects the individual judges’ moral stance when society as a whole is substantially divided on the relevant moral issues. Moreover it is not legitimate for a judge in reaching a view as to what is for the benefit of the one individual whose life is in issue to take into account the wider practical issues as to allocation of limited financial resources or the impact on third parties of altering the time at which death occurs.
For these reasons, it seems to me imperative that the moral, social and legal issues raised by this case should be considered by Parliament. The judges’ function in this area of the law should be to apply the principles which society, through the democratic process, adopts, not to impose their standards on society. If Parliament fails to act, then judge-made law will of necessity through a gradual and uncertain process provide a legal answer to each new question as it arises. But in my judgment that is not the best way to proceed.’ (Emphasis added).
Lord Mustill: p. 896
‘Threaded through the technical arguments addressed to the House were the strands of a much wider position, that it is in the best interests of the community at large that Anthony Bland’s life should now end. The doctors have done all they can. Nothing will be gained by going on and much will be lost. The distress of the family will get steadily worse. The strain on the devotion of a medical staff charged with the care of a patient whose condition will never improve, who may live for years and who does not even recognise that he is being cared for, will continue to mount. The large resources of skill, labour and money now being devoted to Anthony Bland might in the opinion of many be more fruitfully employed in improving the condition of other patients, who if treated may have useful, healthy and enjoyable lives for years to come.
This argument was never squarely put, although hinted at from time to time. In social terms it has great force, and it will have to be faced in the end. But this is not a task which the courts can possibly undertake. A social cost-benefit analysis of this kind, which would have to embrace “mercy killing” to which exactly the same considerations apply, must be for Parliament alone, and the outcome of it is at present quite impossible to foresee. Until the nettle
  on with the existing law, imperfect as it is.’
That was 18 years ago. Despite these urgent entreaties, Parliament has done nothing. If Parliament won’t enact, the judges must judge. That’s what they are paid for.
In practice, of course, clinical decisions are made all the time on the basis of funding. The law is perfectly happy about policy decisions about healthcare resource allocation, even where those policies directly affect identifiable cohorts of patients. If a trust decided not to do coronary bypass grafts on patients who were smokers, on the grounds that they were likely get fewer QALYs per £ from the smokers, then, providing the minutes of the relevant meeting were carefully drafted, the decision might well stand the scrutiny of the Administrative Court. In the heartbreaking Child B case, in which the family of a child with leukaemia challenged the Health Authority’s refusal to fund a potentially life-saving treatment, Sir Thomas Bingham MR observed: ‘Difficult and agonising judgements have to be made as to how a limited budget is best allocated to the maximum advantage of the maximum number of patients.’ (R v Cambridge HA ex p B [1995] 2 All ER 129, 133). That sounds august: in fact, for anyone involved at any level in healthcare resource allocation, it is trite.
If policies can lawfully be made on the basis that the Trust’s £ is better spent on Class X than Class Y, why should the courts say that it is illegitimate to make an individual treatment decision on the basis that its £ is better spent on person X than person Y? Or that the judges cannot do the latter, when they do the former? Jurisprudentially the two exercises are surely the same. And if people in the NHS make individual funding decisions using financial criteria (as they do, but, because of the sort of strictures that we see in Bland, without admitting it,), surely it’s desirable that they admit what they’re doing – which necessarily raises the possibility of judicial oversight.
One can well understand why judges don’t want this job. It’s the sort of work that keeps you awake at night. And it might well be said that to allow this sort of contention would open the floodgates to a massive, court-swamping amount of litigation about individual funding decisions. But surely it’s possible to devise procedural obstacles to such a tsunami.
However it’s done, the courts need to shoulder the responsibility that Parliament has shirked.

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2 Comment on this post

  1. Thank you, Charles, for another stimulating post, which provokes lots of thoughts. I will confine myself to one :
    As you indicate, the sort of case you descibe presents itself hundreds (thousands?) of times every year. Those which hit the headlines and the courts are those where there is conflict within or between different interested groups : doctors, nurses, family, and various other third parties.
    If parliament stoppped « shirking », would it really be capable of creating legislation so limpid that there would be no possible room for interpretation or ground for conflict ?
    I guess that judges will continue to stay awake at night – along with doctors, nurses and loved ones.

  2. Anthony: many thanks.
    Any legislation would have to be in very broad terms. It could not safely do much more than indicate that it was lawful, in making a decision about the withdrawal of life-sustaining treatment from X, to take into account, inter alia, the resources that the withdrawal would release for other patients. But that would be a big step forward.

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