What is a life worth living?


W (by her litigation friend, B) v  M (by her litigation friend, the Official Solicitor) and others [2011] EWHC 2443 (Fam).  
Read judgment.

In the first case of its kind, the Court of Protection ruled that withdrawing artificial nutrition and hydration from a person in a minimally conscious state was not, in the circumstances, in that person’s best interests.  The Court also made general observations for future cases. 

Summary

When M was 43, she suffered extensive brain damage from viral encephalitis, a virus that causes inflammation of the brain.  M is not in a vegetative state, as was initially suspected, but in a minimally conscious state.  She has some degree of awareness but not full consciousness.  She is immobile, doubly incontinent, totally dependent on others for her daily care, and fed and hydrated through a gastrostomy tube (a tube delivering nutrition straight into her stomach).

M’s family applied to the court for permission to let her die by withdrawing and withholding life-sustaining treatment.  This is the first application in the UK to withdraw artificial feeding from a patient diagnosed as being in a minimally conscious state.

M’s family argued that continued feeding was not in her best interests.  M was fiercely independent, they said, and she would not want to live like this.  Although the judge took into account M’s purported views, he ascribed little weight to them.  “The factor which does carry substantial weight”, he noted, “is the preservation of life”, although he acknowledged that preserving life is not an absolute rule.  Alluding to some of M’s positive experiences, the judge concluded that withdrawing artificial feeding was not in M’s best interests and refused the family’s application.

Held:

Application refused

COMMENT
Since M had left no legally valid advance decision expressing her wishes to forego life-sustaining treatment, the court had to determine whether it would be in M’s best interests to withdraw artificial nutrition and hydration (ANH).

In its determination, the Court looked at s4 of the Mental Capacity Act (MCA) and authorities such as the landmark case of Airedale NHS Trust v Bland [1993] AC 789.  s4 MCA 2005 states that, in determining best interests, all relevant circumstances should be considered, including the person’s past and present wishes and feelings, and the views of those close to him.

The Applicant, arguing in favour of stopping ANH, believed the Court should adopt a ‘balance sheet’ approach, weighing the pros and cons of continuing ANH.  This balance sheet, the Applicant concluded, reveals the cons outweigh the pros.

The Official Solicitor, on behalf of M, disagreed.  There should be no balance sheet because, if the person is in a minimally conscious state (MCS) and clinically stable, it can never be in that person’s best interests to withdraw or withhold ANH.  To do otherwise would be unlawful, breaching articles 2 (right to life), 3 (prohibition of inhuman and degrading treatment), 8 (right to respect for private and family life) and possibly 13 (right to an effective remedy before a national authority) and 14 (prohibition of discrimination with respects to Convention rights).  And if, the Official Solicitor continued, the Court deems the balance sheet approach suitable, then the balance clearly favours continued treatment.

The Primary Care Trust (PCT), who joined as second respondents, agreed with the Official Solicitor that the balance sheet approach favoured continuing ANH.  The PCT noted that M’s life appeared to have some positive elements, such as enjoying music, and that these elements outweighed any negative elements.

In reviewing the case law following Bland, the judge identified several key points.  First, it is incumbent on those who seek to withdraw life-sustaining treatment to discharge the burden of establishing that this is in the person’s best interests.

Second, the courts should use a ‘balance sheet’ approach when determining the best interests of an incapacitated adult.

Third, the balance sheet should contain not just medical considerations, but wider factors too, such as welfare issues.

Fourth, there is no single test, such as the once popular test of intolerability, to determine if withdrawal of life-sustaining treatment is in the best interests of an incompetent person.

Fifth, although the present case is a ‘first’ in that it concerns a patient diagnosed with MCS, there have been other cases in which a court has permitted the withdrawal of ANH in non-vegetative patients (for example, a young child with profound brain damage, and an elderly and terminally-ill man on renal support).

When I was working as a hospital ethicist in North America a few years ago, it was common to ask relatives of incapacitated patients: “if [name of patient] was here now, what do you think he would have wanted?”.  In the instant case, the judge emphasised that the substituted judgement test does not apply in England and Wales, and that the ‘decision must be based on P’s best interests and not on what P would have decided if he had capacity’ [81], although of course this is a relevant factor (see paragraph 5.38 of the Code of Practice supporting the Mental Capacity Act 2005).

The judge also stressed – and this is clearly of practical importance to front-line clinicians – that any decision to withhold or withdraw ANH from a person in a vegetative state (VS) or MCS must always be brought to the court [82].

What, then, of human rights and withdrawing ANH?  Would withdrawal necessarily breach any Articles of the European Convention of Human Rights (ECHR)?

No, said the judge.  Article 2 (right to life) does not require maintaining life at all costs, and would not be violated if the withdrawal of ANH was in the person’s best interests [89-90].

As for Article 3 (prohibition from torture or inhuman or degrading treatment), the European Court in Herczegfalvy v Austria (1992) 15 EHRR 437 at [82] stated that ‘as a general rule, a measure which is a therapeutic necessity cannot be regarded as inhuman or degrading’, although of course the court must be satisfied that the treatment is indeed medically necessary.  Again, the judge affirmed that withdrawing ANH need not breach Article 3 if in the best interests of the person.

Article 8 (right to respect for private and family life) incorporates the right to personal autonomy.  The judge remarked that a decision by the Court, ‘having proper regard to the patient’s personal autonomy and the expressed wishes and feelings of the patient and her family’, would not breach Article 8 if withdrawing treatment was in the patient’s best interests.  The judge concluded this part of the judgment with the assertion that ‘a best interests assessment, properly conducted under English law in accordance with established principles […], is fully compliant with ECHR’ [emphasis added].  The important issue of what ‘having proper regard’ or ‘properly conducted’ means in practice was not, however, explored in any detail.

The Court disagreed with the Official Solicitor’s view that the balance sheet approach was inappropriate in cases where the patient is clinically stable, as M is here.  The Court saw no justification for such an approach, and noted that it would both undermine the requirement under s4 MCA 2005 to consider all the relevant circumstances in deciding best interests, and engender tortuous debates on the meaning of clinical stability.

The judge was surely correct in his assessment, as otherwise one would have to accept that clinical stability would in itself be sufficient to warrant continued treatment, however grim the patient’s quality of life.  This, in my view, is an unpalatable position.  Of course, the balance sheet is no more than an aid to decision-making, but it is nonetheless useful to focus the mind on all the relevant factors.

From the evidence of M’s care home staff, the judge took it as read that M had some awareness of self and her environment, some understanding of language, had spoken some words (such as “hello” and “where am I?”), opened her eyes, made noises, moved her arms in a way indicating her mood and needs, and responded to music.  The two medical experts agreed that M was in MCS (albeit at different levels of consciousness within that category) and that further improvement was unlikely, but they disagreed over whether withdrawing ANH was in M’s best interests.  One expert stated that she was “unable to identify any aspect of her [M’s] life that gives her positive pleasure”; the other expert believed that some aspects of her life gave her pleasure.

As one expert observed, the question about withdrawal of ANH is more complex for patients in a minimally conscious state than in a vegetative state.  The reasons are threefold: 1) there is less clinical certainty about level of awareness in MCS than VS, 2) there is greater uncertainty, given the current state of knowledge, on when a patient with MCS is beyond meaningful recovery, and 3) unlike patients in VS, those in MCS probably have near normal perceptions of pain and so will probably experience pain and discomfort when ANH is withdrawn.

And so the judge proceeded to perform the delicate act of balancing the pros and cons.  The pros of withdrawal included freedom from further pain, distress and discomfort, an end to the apparent indignities of her life, and respecting her alleged wishes.  Cons included prolonged life, and continued – perhaps, in the future, more frequent – moments of pleasure.  The judge ascribed the greatest weight to preserving life, and hence concluded that withdrawing AHN would not be in her best interests.

Many readers would doubtless have balanced the factors differently and arrived at a different conclusion.  However comprehensive the balance sheet, it does not remove the need to ascribe a weight to each factor.  This is not an objective task, but involves value judgments, and reasonable people may value the same factor differently.

The judgment ends with practical observations for future cases.  First, a decision to withdraw or withhold ANH from a person in VS or MCS should not be made without referral to the court.  Second, the patient’s diagnosis should, as far as possible, be accurate, using the proper assessments.  Third, it is regrettable – and potentially in breach of Article 6 ECHR (right to a fair trial) – that families such as those of M may not be eligible for public funding in such applications.  Fourth, the issues involved in cases of this sort are so important that the press should be free to report them, as long as the privacy of the individuals concerned is protected.

For many people, a life in MCS is a more terrifying prospect than a purely vegetative existence.  Consciousness is a double edged sword, bringing the possibility of pleasure as well as of untold suffering.  Tragic cases such as that of M are stark reminders that advance decisions can be of tremendous benefit to ourselves, our loved ones, and the medical team if the fateful moment arrives unexpectedly, whether at our desk, on the bus, or, like M, on the first morning of a skiing holiday.

Daniel Sokol is a pupil barrister at 1 Crown Office Row and Honorary Senior Lecturer in Medical Ethics at Imperial College London

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