No right to die without a “Living will”

We posted earlier on the Court of Protection’s refusal to declare that doctors could lawfully discontinue and withhold all life-sustaining treatment from a patient in a minimally conscious state (MCS) – “just above” a vegetative state (VS), which itself is slightly higher than a coma – read judgment.

The message underlying this ruling  is clear: if you want to avoid the risk of spending years of your life subject to aggressive medical intervention whilst imprisoned in a cage of bare-consciousness, make a living will. The Mental Capacity Act is remorseless, and courts will no longer come to the aid of those of us optimistic enough to think “it will never happen”.

We do not tend to think specifically about ending up in state of total dependency on medical support and therefore there is very little  likelihood of any significant section of the population making a formal advance decision in accordance with the Act. On the other hand, how many of us have said, as patient M said in this case, that if such a situation were to arise, we would want to “go quickly”? [para 230]

Such generalities however are to no effect. Despite the universal human instinct to live in denial of contingent disasters,  the court refused to give due weight to M’s previously expressed wish not to live a life dependent on others, because those these statements were not “specifically directed” at the consequences of withdrawing artificial nutrition and hydration (ANH) when conscious. Baker J could not consider those statements as a clear indication some eight years on from the onset of her illness, of what M would now want to happen.

M’s circumstances

This judgment makes for bleak reading.  Following the detailed evidence about M’s case is like watching a helpless laboratory subject as she is poked and prodded for signs of response, which is ironic as the entire thrust of the judgement – all 261 paragraphs – is devoted to the question of her “best interests” under Section 4 of the MCA.

Although initially diagnosed as VS, M was subsequently assessed via a new technique which established that she demonstrated a repeated ability to obey commands, notably when asked to press a buzzer switch. However, one of the leading experts in neuro-rehabilitation working on her case that reported that she was unable to identify any aspect of M’s life that gave her positive pleasure or satisfaction. On the contrary, the evidence regarding pain perception in MCS patients suggests that they are in a worse condition, if anything, than someone in a coma or VS -

Whereas patients in VS may react reflexively and thus appear to respond, but are in fact lacking the part of the brain that appreciates and experiences pain, evidence suggests that in MCS patients these pathways are relatively intact.

The parts of the brain that make sophisticated associations between nerve messages and pain association are active in MCS patients, but possibly not in VS patients. In addition to this, the prospects of anyone emerging from MCS after eight years are, in Professor Turner-Stokes’s view, remote [para 47]. It was on the basis of this report that M’s family decided to persist with this application.

The question before Baker J was therefore whether it in was M’s best interests that 1) all life-sustaining treatment and medical support, including ANH, were to be withdrawn and withheld and, 2) if it were to be in M’s best interests to continue life-sustaining treatment, including ANH, what future management would be in her best interests. In the event, all parties agreed during the hearing that the court should deliver a judgment on the first issue and then reconvene a hearing to determine details of the care plan consequent upon the decision whether or not to sustain the treatment. There was essentially only one legal issue between the parties, namely whether as a matter of law the court should adopt a “balance sheet” approach in respect of the best interests of an MCS patient.

The leading authority on the general point is the House of Lords decision in the Tony Bland case of 1993. The crucial distinction between the Bland case and this one was that the former concerned a VS patient. In such cases, the balance of “best interests”  falls in one direction – in favour of withdrawal; in Lord Goff’s words,

there is in reality no weighing operation to be performed. Here the condition of the patient, who is totally unconscious and in whose condition there is no prospect of any improvement, is such that life-prolonging treatment is properly regarded as being, in medical terms, useless

In MCS cases however it depends on the facts, and the expert evidence, in the particular case. The applicants argued that in some individual cases, after meticulous consideration of all of the factors for and against, withdrawal of life support might be the most humane course and in the individual’s best interests. However Baker J was not prepared to go so far as to accept the applicants’ submissions that, given M’s clearly expressed views and paying particular attention to the type of person M was when fully sentient, it was in M’s best interests for ANH to be withdrawn, and for her to be permitted to die with dignity.

On the other hand the judge also rejected  the Official Solicitor’s submission that in M’s case the evidence was that she was clinically stable, and that it could never be in that person’s best interests to withdraw and/or withhold life-sustaining treatment including ANH. There was “no justification” for introducing a requirement of clinical instability before embarking on a balance sheet analysis in MCS cases. To do so would introduce an

impermissible gloss on the best interests test, and undermine the clear requirement laid down in s. 4 of the MCA to consider all the relevant circumstances when determining best interests.

The novelty of MCS

One of the reasons why there was until this hearing no reported case in which a court has been asked to authorise the withdrawal of ANH from a patient diagnosed as being in a MCS is because the method for assessing this “lighter” state of unconsciousness was only established in 2002, nearly ten years after Bland  was decided. Considering the evidence from the experts and the care staff, Baker J concluded that “common sense” suggested that the greater the experience a carer has of working with a patient in an MCS, the more familiar he or she will be with the nuances of the patient’s behaviour. But arguably the care staff are by their professional nature more inclined to over-report evidence of a patient’s level of response, unlike the family whose main familiarity is with the rational individual.

So the new form of neurological assessment (bearing the unironic acronym SMART) militated against the applicants in this case, along with the stringent requirements under the Mental Capacity Act for advanced statements to be in writing and signed before a witness (ss 25 (5) and (6)). The humane approach in Bland is no longer open to the courts, it seems; the nuanced assessment in Lord Goff’s judgment may no longer be possible -

the principle of the sanctity of human life must yield to the principle of self-determination …there is… no absolute obligation upon the doctor who has the patient in his care to prolong his life, regardless of the circumstances. Indeed, it would be most startling, and could lead to the most adverse and cruel effects upon the patient, if any such absolute rule was held to exist. It is scarcely consistent with the primacy given to the principle of self-determination in those cases in which the patient of sound mind has declined to give his consent, that the law should provide no means of enabling treatment to be withheld in appropriate circumstances where the patient is in no condition to indicate, if that was his wish, that he did not consent to it.

No human right to autonomy

This case also illustrates how little weight Convention arguments carry in real debates about individual freedom and autonomy. In general the judge found that submissions on individual articles of the Convention did not advance the argument any further; that the concept of “best interests” was a wide enough test to encompass all relevant factors in articles 2, 3 and 8

On Article 3 in particular, the judge observed that the impact of the withdrawal of treatment, the methods by which it is achieved, and the steps that can be taken to alleviate any suffering and distress are all part of the best interests assessment.

Thus a decision by the Court, having carried out an assessment in accordance with established legal principles, that it is in the patient’s best interests to withhold or withdraw treatment does not give rise to a breach of article 3.

And yet Professor Turner-Stokes concluded that the patient had

marked hypersensitivity and was experiencing a significant level of discomfort and, on occasions, pain.

Other expert evidence suggested that a substantial proportion of M’s conscious experiences include the experience of pain, distress or discomfort, and it followed that she would be at a real and significant risk of experiencing further pain and/or discomfort and/or distress if her condition were to deteriorate. Although such risks could be ameliorated by provision of pain relief, as she could not reliably explain when she is in pain, there will always be a risk that pain relief or palliative care will not entirely remove the pain, discomfort or distress.

Whilst this ruling acknowledges that Article 8 requires that there be respect for personal choice, self determination and personal autonomy where it is capable of being expressed, even where, to give effect to those express wishes, would result in the death of that person. But Baker J decided that in a case such as this, concerning a person who cannot express her current wishes, where the consequences of a withdrawal of treatment will be the patient’s death, previous statements of a general nature relating to the enjoyment of life, or dislike of nursing homes, cannot be decisive in determining whether that person, if capable, would now choose to die.

The contradictory state of the law?

We are left with three confusing propositions. The first is the basic principle that it is unlawful, so as to constitute both a tort and the crime of battery, to administer medical treatment to an adult, who is conscious and of sound mind, without his consent (In Re F (Mental Patient: Sterilisation) [1990])

The second is the “best interests” test under Section 4 MCA for determining the continuation or withdrawal of treatment, in particular subsection (6) which requires a judge to consider

(a) the person’s past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity); (b) the beliefs and values that would be likely to influence his decision if he had capacity, and (c) the other factors that he would be likely to consider if he were able to do so.

And the third is the requirement laid down in the same Act which seems to lie flat against these criteria in Section 4, namely that these wishes and feelings count for nothing unless they meet certain criteria; 25(5) and (6) provide that an advance decision is not applicable unless it is verified by a statement to the effect that it is to apply to that treatment even if life is at risk, and further that both the decision and statement must be in writing and signed by P or another person in P’s presence and by P’s direction, in the presence of a witness who also has signed the decision and the statement of verification.

So the moral of this sad story is that “Living wills” are only as good as the conditions prevailing at the time. The PCT’s arguments in this case are illustrative of the steps one might have to take in order to make sure that any advance decision prevails under the MCA, whose provisions require the patient to have gone through “a specific thought process of identifying the specific circumstances in which the advance decision will apply” -

knowing that the decision will indeed be decisive, in cases such as this, this involves understanding that the effect of the decision would be the withdrawal of ANH when in a MCS. … if the person has not addressed the question of what those circumstances would be, and considered specifically the treatment that would be withdrawn, and the consequences of that withdrawal, the weight to be given to the statements should be limited

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5 thoughts on “No right to die without a “Living will”

  1. Alongside the beginning of this article is a Sample version of a Living Will document. Can anyone tell me where I can obtain a copy of this document, with which to set up my own Health Care Directive and Living Will?

    • The key to making a legally binding advance decision is to read ss.24-26 of the Mental Capacity Act 2005 (available here http://www.legislation.gov.uk/ukpga/2005/9/contents) and produce a written, witnessed document which complies with its terms. The Act doesn’t prescribe the form the document has to take. It will need to set out in detail what you want to happen if you lose capacity otherwise it will be capable of being challenged on the basis that it wasn’t specific enough, or didn’t address the particular set of circumstances you find yourself in. For example, to cover M’s case, you would probably need to expressly refer to a diagnosis of being a minmally conscious state, and show that you understand what this means.

  2. This is a really interesting piece. One of the issues that isn’t discussed here though is that if he had made the decision that ANH should be withdrawn ‘there is a significant risk that the process of dying by starvation and dehydration will cause her pain and distress.’ – This concern didn’t hold in the Bland case (or at least, it didn’t because the very concept of MCS – as opposed to PVS – didn’t exist). And the evidence of Prof Turner-Stokes on M’s quality of life wasn’t uncontested – even by other medical experts.

    As a general point, I definitely agree with the author’s comment about ‘how little weight Convention arguments carry in real debates about individual freedom and autonomy.’ Likewise the MCA I would say. I think the comment about M being ‘poked and prodded’ is endemic to the MCA – the whole process of assessing capacity, determining best interests, is very intrusive and disempowering (by definition, really). It may be a lack of imagination on my part, but I’m not sure what the alternative is. It would be very dangerous indeed, I think, to not ‘prod’ a bit if we’re talking about withdrawing life-sustaining treatment.

    I do wonder how far discussions of autonomy in this case are conflating two separate issues though: our horror at the reality of M’s existence, and giving weight to previously expressed views. M had said ‘that, if she was in danger of going into residential home, she would rather shorten her life by ten years rather than have someone look after her’. I can think of a vast array of far less extreme circumstances where it would be very alarming if the Court treated this previously expressed view as determinative. We want it to be determinative not because it was her previously expressed view, but because of the particular features of her situation.

    To give an example from my own life, my grandfather left a (formal and witnessed) living will saying if he lost capacity he would not want *any* treatment that would prolong his life – his rational faculties were everything to him. He developed Alzheimer’s. When he had a tooth infection he became extremely unwell and initially refused antibiotics, pointing to his living will. He later begged for treatment as a result of the extreme pain he was in – had his advance decision been treated as carrying more weight than his later incapacitated self, it would have led to a horrible death indeed. My point isn’t that M should be kept alive, just that it really isn’t clear often that our past expressed views were framed taking into account the particular circumstances we might find ourselves in.

  3. Ron: I have previously visited the Government web site you mention but it mainly refers to drawing up and executing a Lasting Power of Attorney. I am not sure that is right or what I want. The featured document at the top of the article shows a document entitled Health Care Directive and Living Will; it is that document I would like to get a copy of. Do you – or any other viewers to this web site – know where I can get a draft copy of this document? I have seen an Advance Decision document which way be suitable on the Law Depot web site at a cost of £18.00 or £20.00. Does anyone know if this document is suitable to overcome the situation described in the ‘M’ case above?

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