(This case is drawn from England but they often serve as a template for our future. It is a bit lengthy but poses questions worth considering. It makes a strong argument for having a Living Will and a Medical Power of Attorney. I do.)
Last month saw the sad death of Mr. RS after his nutrition and hydration were withdrawn by Plymouth University Hospital. Three UK court hearings, including one in the Court of Appeal, had concluded that this course of action was in his best interests.
Public concern centred around his Catholic faith, and evidence from relatives of his pro-life beliefs relating both to the beginning and end of life. The Court of Protection decided not to rely on this evidence, for two reasons.
Firstly, there had been little contact between Mr. RS and his birth family for several years.
Also, Mr. RS “had made choices in his personal life that were not in complete harmony with his religious obligations”. Those choices did not touch on medical ethics or end-of-life decisions, but concerned Mr. RS’s marriage to a divorced lady.
Decisions to withdraw Clinically Assisted Nutrition and Hydration (CANH) must be taken in accordance with the Mental Capacity Act 2005, which requires the patient’s wishes, as far as they are “reasonably ascertainable”, to be taken into account in determining his or her best interests. The evidence of Mr. RS’s wishes to which the courts attached importance was that of his wife who testified that, “he had said he never wanted to be a burden if he was seriously ill”, and “if anything happened to him he would want all steps to be taken to save him, but that if he was beyond saving he did not want to be kept alive. She believed that he would not regard removing treatment as removing life”.
The most immediately striking aspect of these reported statements is their vagueness. There was no claim that Mr. RS had said anything at all about assisted nutrition or hydration, let alone that there were any circumstances in which he wanted to be starved and dehydrated to death.
It is not unusual, though, for the courts to over-interpret vague, casual, general, dated, or even possibly flippant statements in such a way as to allow withdrawal of food and fluids.
For example, in United Lincolnshire Hospitals v N , Mrs. N was in a Minimally Conscious State after a brain haemorrhage. Her daughter gave evidence of a single conversation between Mrs. N and a friend in which, “Apparently, both said that they would not like to continue life in a reduced capacity. [The daughter] states that although this is different, she believes it summarises what her mother’s views would have been”.
In M v. Mrs. N , another patient who was suffering from MS and dementia had repeatedly said she would “rather be dead”, whilst being at the time “profoundly depressed”. Her daughter remembered her once saying in relation to her parents’ dementia, “if I ever get like that shoot me!”.
The court in Briggs v Briggs  gave weight to Mr. Briggs’s past statements opposing life support, although “he was not specifically directing his attention to someone in his present circumstances” and was now “a different person” as a result of his brain injury.
Mrs. P, the patient in Salford NHS Trust v Mrs. P , had also received a brain injury and was in a Minimally Conscious State. Four years previously, she had sent an email saying, “Did you see that thing on dementia? … Get the pillow ready if I get that way! …”.
In Abertawe v Lewis , Mr. Lewis was in a so-called “Vegetative State” following a brain injury. The only evidence of his wishes was the one occasion on which he had said about somebody with Alzheimer’s disease that he “would not want to live in that state”.
Perhaps most disturbingly, removal of CANH was approved last year for 34-year-old Mr. MSP by Barnsley Hospital Trust while he was under sedation. Although he had made a written statement refusing any insertion of a stoma (an abdominal opening for a waste bag) if this was likely to be permanent, Mr. MSP had later agreed to this same life-saving operation. The doctor to whom he had given his consent was optimistic that the stoma might not be permanent, but did not know about MSP’s written statement. Following the operation, it was clear that the stoma would probably be irreversible. Despite this, the judge decided not to revive Mr. MSP from his sedation, to allow his current wishes to be clarified.
Balancing of human rights
The importance attached to people’s wishes in such cases reflects the courts’ respect for the right to personal autonomy, under Article 8 of the European Convention on Human Rights.
Difficulties arise, however, when the courts have very little evidence to go on about what the person would want. As the judge in the case of Mr. RS remarked, “Everyone agrees that he has never said how he would like to be treated if he were to find himself in his exact current situation and, indeed, I have been told very few patients do express such a detailed wish in advance. His views have to be inferred from what he said to others about situations which bear relevance to his predicament.”
As a result, outcomes in cases like this are liable to be unpredictable, and sometimes ethically controversial.
And yet, are there any other considerations that are in danger of being overlooked or sidelined here?
Certainly, personal autonomy has come to be recognised as a human right, and one to which the Mental Capacity Act gives effect.
But there is also a fundamental right to life, under Article 2 of the European Convention, as well as other international human rights instruments going right back to the 1948 UN Declaration of Human Rights.
Judgements in cases of this kind show that the principle of the sanctity of life is recognised by the courts, but can be overborne when a person is deemed to have exercised their autonomy to refuse a medical intervention.
As the judge in ‘RS’ said, “if the decision that [the patient] would have made, and so [his] wishes on such an intensely personal issue can be ascertained with sufficient certainty it should generally prevail over the very strong presumption in favour of preserving life. … the ‘sanctity of life’ or the ‘intrinsic value of life’, can be rebutted … on the basis of a competent adult’s cogently expressed wish”.
We have shown the disconnect between this statement and the way decisions are made in practice.
In the absence of a “cogently expressed wish” specific to a patient’s situation that can be “ascertained with sufficient certainty”, is it ever acceptable to assume that they would opt for death by starvation and dehydration?
The cases referred to earlier might suggest that the respect accorded to the “sanctity of life” has been somewhat eroded by the courts. In a 2013 ruling which concerned ventilation but not CANH (‘NHS v VT’) the judge asked, “what does the concept of ‘sanctity’ imply to either a secular society or for that matter to the many different multi-faith communities of modern Britain?”
There have been several judgements involving the withdrawal of CANH or other life-saving interventions in which a patient’s life has quite wrongly been referred to as “futile”. For example, in Gloucester CCG v AB & CD , the judge concluded, “All parties are now agreed that AB’s life is futile, in the sense of that word used by Lord Goff in the ‘Bland’ case.”
But Lord Goff said no such thing in the ‘Bland’ case. He used this word not with reference to life, but only to medical treatment. The current statutory Code of Practice on the Mental Capacity Act similarly makes clear, as does medical guidance, that the concept of ‘futility’ is attached to medical treatment rather than life.
Back to the Mental Capacity Act
Perhaps we need to ask how the right to life, and the principle of the sanctity of life, are upheld by the Mental Capacity Act in the context of withdrawal decisions.
The Act expressly states that the existing law on murder, manslaughter and assisted suicide remains unchanged, and ensures that best interests decisions can’t be motivated by a desire to cause death. Where the treatment concerned is life-saving, Advance Decisions to Refuse Treatment must be in writing and be signed and witnessed in order to be binding.
However, there are no minimum evidential standards for other previous statements of wishes which – though they are not binding – can still be given weight by the courts. As we have seen, these expressions of wishes can lack any hint of formality and even any mention of nutrition or hydration.
A decision that someone’s best interests involve the withdrawal of CANH does not constitute euthanasia under UK law, even when this relies on second-hand or otherwise weak evidence of their wishes.
It is clear that the way in which the right to life is protected by the law is inadequate to meet the dilemmas which now come before the courts.
The role of doctors
Of course, it is not only the courts that can authorise withdrawal of CANH based on evidence of this kind. As a result of the Supreme Court’s ruling in An NHS Trust v Y , doctors can make these decisions without any judicial oversight, provided the families agree.
Guidance issued since this judgement by the Royal College of Physicians and BMA encourages doctors, before withdrawing CANH, to evaluate “apparently casual passing comments (e.g. ‘shoot me if I ever get like that’) … to determine whether they are simply throwaway remarks or whether, in context, they convey more settled wishes”.
Doctors might well ask how on earth they are supposed to do this.
If a patient has made other less casual comments indicative of “more settled wishes”, then their “apparently casual passing comments” wouldn’t need to be considered. However, if they haven’t done so, the guidance implies that “apparently casual” comments can still sometimes be taken seriously – but when, exactly? Can a series of “casual” statements really add up to a “settled” view, for the purpose of a decision to starve and dehydrate someone to death?
The case for legal reform
Where life and death decisions are based on the belief about what a patient would really want, but can’t say so because they lack mental capacity, compelling evidence should surely be required as to that person’s real wishes.
In that case, shouldn’t Parliament be setting clearer ground rules?
As Lord Mustill said in the House of Lords in the 1993 case of Tony Bland, whilst expressing “profound misgivings about almost every aspect” of that case: “The formulation of the necessary broad social and moral policy is an enterprise which the courts have neither the means nor in my opinion the right to perform. This can only be achieved by democratic process through the medium of Parliament … The whole matter cries out for exploration in depth by Parliament and then for the establishment by legislation not only of a new set of ethically and intellectually consistent rules …”.
Parliament has since introduced the Mental Capacity Act, but cases such as the ones we’ve discussed arguably point to a need to tighten this Act by including further “ethically and intellectually consistent rules”.
The classification of CANH as medical treatment, for which the ‘Bland’ judgement was responsible, remains problematic for many, but is probably now too well established to hold out any hope of reversal by Parliament.
A proposal for reform
A more realistic option for reform presents itself, namely a presumption that nutrition and hydration – as long as these are clinically indicated and can still be delivered effectively – must not be removed unless the person has made a written statement which allows this, and covers their present situation.
The presumption could still be rebutted, but only by a court rather than doctors alone.
An amendment along these lines would introduce, in effect, an ‘opt-out’ system for CANH, analogous to the ‘opt-out’ system introduced by the government last year for organ donations.
By making CANH the default option, the fundamental principle of the sanctity of life would be confirmed and safeguarded. People would be given clarity about what would happen if ever this agonising decision needed to be made for them, and would be encouraged to make advance written statements about any situations in which they didn’t want CANH. Guidance and templates on what to include in one’s statement would no doubt soon proliferate.
In principle, and in contrast to the tragic cases of ‘RS’ or ‘MSP’, withdrawals of CANH would then only be carried out as a genuine and meaningful exercise of a person’s autonomy.
The right to autonomy would not be undermined, in fact it would be reinforced but – most crucially – not at the expense of the right to life itself.