• Living Wills/Advance Directives
• Law
• Competence/incompetence

There are some decisions about the ‘serious medical treatment’ of patients who lack capacity which cannot be taken by doctors, acting in their patients’ best interests, but which instead must be referred to the Court of Protection. According to the Mental Capacity Act 2005 Code of Practice therapeutic sterilisation is one example, and the withdrawal of artificial nutrition and hydration (ANH) from a patient in a permanent vegetative state (PVS) is another. The Court of Protection Rules go further than this, and suggest that any proposed withholding or withdrawal of ANH from a person in a minimally conscious state (MCS) must also be brought to the court.1

The continued need for court approval of treatment withdrawal in the case of PVS patients is interesting, given that provided the diagnosis of PVS is correct, court approval is now essentially a formality. As Ryder J explained in A Primary Care Trust v CW:2 whether or not the withdrawal of life-sustaining treatment measures is in CW's best interests will depend upon whether or not his diagnosis of PVS is correct. If it is correct, in other words if he has no awareness of self or environment and no prospect of recovery, then the provision of any treatment is futile and cannot be in his best interests.

For patients ‘with no awareness of self or environment’ then, the prevailing assumption is that life-prolonging treatment is not in their best interests, because it is futile. Of course, it could be argued that the best interests test is not, in fact, terribly helpful for patients who permanently lack consciousness. In the landmark case of Airedale NHS Trust v Bland,3 Lord Mustill admitted that: The distressing truth which must not be shirked is that is that the proposed conduct is not in the best interests of Anthony Bland, for he has no best interests of any kind … [A]lthough the termination of his life is not in the best interests of Anthony Bland, his best interests in being kept alive have also disappeared.

For a patient like Tony Bland, according to Lord Keith, ‘it must be a matter of complete indifference whether he lives or dies.’

By contrast, the patient at the heart of Baker J's recent decision in W v M was in a MCS, which meant that, unlike Tony Bland, she did have some sensory experiences. M could feel pain and suffer the discomfort of needing to have her incontinence pad changed. When she had emptied her bowels, one witness explained that M would issue ‘a very load moan that can be heard throughout the unit.’ She would make a different noise—‘a low monotone’—when she was cold. More heart-wrenchingly, it appeared that some external stimuli could make M cry. Seeing someone else's wedding video; being played certain Elvis, Lionel Richie and Rod Stewart tracks, and sitting alone after her long-term partner had left the care home all seemed to result in tears rolling down her cheeks. It was said that she had occasionally uttered recognisable words, such as ‘what?’; ‘where am I?’ and ‘bloody hell’.

There was also evidence from some witnesses that M experienced positive sensations. M grimaced in a stiff breeze, but would also turn her face to the sun. She was occasionally said to tap her wrist in time to music, and some of the staff at her care home thought that they had seen her smile. The fact that she could be made comfortable—perhaps after her pad was changed—was, according to Baker J, in itself a positive experience, rather than the more neutral absence of discomfort.

Imagining myself in M's shoes, I would regard a life in which I was totally dependent on others for all aspects of daily care; immobile; doubly incontinent; moved by a hoist; being played songs that made me cry and uttering occasional words like ‘where am I’ and ‘bloody hell’ as, to put it bluntly, a living hell. Even when the good experiences that M was said to have are weighed in the balance, it is hard to see how the occasional pleasure of sunshine on one's face or of relaxing when one's wheelchair is pushed over smooth as opposed to rough terrain, would be sufficient to compensate for the routine daily pain and discomfort to which M was subjected.

Unlike Tony Bland, utterly unaware of the misfortune which had befallen him, it is possible that M could grasp something of the horror of her situation. As the husband of J movingly explained in An NHS Trust v J,4 a case in which it was proposed that a woman in a PVS should receive a short course of zolpidem just in case it was able to temporarily revive her, it had always given J's family some comfort that she did not know what had happened to her. We cannot know why M cried and moaned when subjected to certain stimuli, but it is troubling to consider that she may have understood enough about her situation to be disturbed by it.

Although the House of Lords judgment in Bland remains the leading authority on treatment withdrawal, the Mental Capacity Act 2005 (MCA) now applies to decisions about the treatment of patients, like M, who lack capacity. The test is still the best interests test, but decision-makers now have a checklist to help them determine what would be in the patient's best interests. And it is at this point that, for a number of reasons, Baker J's judgment becomes especially interesting.

First, it is widely agreed that the MCA seeks to enlarge, as far as possible, those patients who are able to exercise a degree of autonomy over their medical treatment. The wishes, feelings and values of patients who have lost capacity without making a valid and applicable advance decision (AD) are not irrelevant. On the contrary, the Act recognises that ‘best interests’ is not limited to an objective assessment about what is clinically most appropriate for the patient, but rather it also encompasses much more subjective considerations about what treatment would best fit with the patient's values and preferences.

The MCA Code of Practice fleshes out this requirement to take the person's previously expressed views into account: 5.32 As with all decisions, before deciding to withdraw or withhold life-sustaining treatment, the decision-maker must consider the range of treatment options available to work out what would be in the person's best interests. All the factors in the best interests checklist should be considered, and in particular, the decision-maker should consider any statements that the person has previously made about their wishes and feelings about life-sustaining treatment…. 5.41 The person may have held strong views in the past which could have a bearing on the decision now to be made. All reasonable efforts must be made to find out whether the person has expressed views in the past that will shape the decision to be made. This could have been through verbal communication, writing, behaviour or habits, or recorded in any other way (for example, home videos or audiotapes).5

And there was plenty of evidence of M's wishes and feelings in this case. When her maternal grandmother had gone to live in a nursing home, M had said she did not want to be looked after in that way. When her father became ill and had to go into a care home, M had said ‘Don't ever put me in a place like that’; she had said that she wanted to ‘be off quick and not dependent on others’. After watching a television report about the Tony Bland case, M had expressed the view that ‘it would be better to allow him to die’. And M's partner of 30 years said that she would have been ‘horrified’ by the thought of living in her present condition.

Of course, Baker J is right that the section 4 checklist does not make these previously expressed views decisive, but they are nevertheless important. Baker J, however, considered that not only were they not binding, but also that they did not carry much weight. The court, he said, should be ‘particularly cautious about attaching significant weight to statements she made before her collapse’, and Baker J decided not to attach significant weight to them.

By contrast, Baker J was of the view that the principle of the ‘preservation of life’ or the ‘right to life’ carried very great weight. This principle does not appear in the section 4 checklist, and while Baker J is of course correct that the right to life is a basic principle, it is not a ‘duty to live’. If the ‘right to life’ is the trumping value in the application of the best interests test, it is perhaps odd that the statutory draftsmen did not specify this, but instead emphasised the importance of the person who lacks capacity's previously expressed values and beliefs.

Baker J noted that if M had made an AD to refuse treatment, it would have been binding. One of the distinctive features of patients who lapse into a PVS or a MCS is that few of them will have seen it coming. M was about to go on a skiing holiday when she became drowsy and confused and lapsed into a coma. Sudden brain injuries or conditions like M's viral encephalitis are not like progressive degenerative conditions, in which advance care planning is increasingly the norm. If we are going to accord any weight to the wishes of a patient like M, it is unlikely to be through a binding AD. Rather, the MCA specifically provides for patients like M who will not generally have made an AD to cover their sudden brain damage by enabling their wishes and feelings to be relevant, and accorded significant weight, in the absence of a binding AD.

Second, it is noteworthy that Baker J explicitly accorded more weight to the views of M's professional carers than he did to those of her devoted family. M's partner of 30 years, with whom she had had a ‘very close, loving, stable and permanent relationship’, and her sister, to whom she was extremely close, were adamant that M would not have wanted to be kept alive. By contrast, Baker J found that ‘common sense suggests 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’. He found that M's professional carers had ‘extensive and recent experience of M's behaviour’, and as a result, he gave ‘considerable weight’ to their evidence.

It is true that the MCA does not give the views of related caretakers greater weight than those of professional carers. But in both cases, carers are consulted in order to elicit their views as to what is now in the person's best interests, and in order to establish what the person herself would have wanted. M's professional carers may have known more about M's reactions to stimuli than her family, but they knew nothing of M's previously expressed wishes and values. By contrast, it might be supposed that her partner of 30 years would be especially well placed to know what M would have wanted.

Third, Baker J applied what has become known as the ‘balance sheet’ approach. This involves setting out the burdens of continuing treatment on one side of the balance sheet and the benefits on the other, so that they can be weighed against each other. Is this the right approach post-MCA? Interestingly, Baker J quotes from Thorpe LJ in Re A (Male Sterilisation)6 in which he suggests that the ‘balance sheet’ approach was the right one ‘pending the enactment of a checklist’ (my emphasis). Now that we do have a checklist, should the decision in fact be taken by going through the factors in the checklist and weighing them against each other, rather than by constructing a balance sheet?

Of course, in most cases there will be little to choose between these two approaches, but because Baker J's trumping principle—‘the preservation of life’—sat on one side of the balance sheet, it in practice outweighed important factors on the other side of the sheet, such as evidence of M's pain and discomfort, her previously expressed wishes and the views of those close to her as to what she would have wanted.

Finally, while the right to life played a leading role in Baker J's judgment, the right to be free from inhuman and degrading treatment was not mentioned at all. Yet some of the descriptions of the stimuli to which M was subjected brought tears to my eyes. In one particularly gruesome passage, Physio L explains how M started to cry when she was played Elvis's ‘You were always on my mind’. The track was played again, and she once again started to cry. When the track was paused, M stopped crying. Staff then resumed playing this track and M started to cry again. As if this was not enough, they then tried a number of other Elvis tracks to which M showed no reaction. They then tried ‘You were always on my mind’ yet again, and M once again started to cry. On another occasion, M screamed when a Rod Stewart track was played, and tears ran down her face. I was reminded of the Dorothy Parker quote: ‘what fresh hell is this?’ M may have tapped her wrist when some 70s music was played, and turned her face to the sun when she was taken out of her care home, but, unlike a patient in a PVS, she also appeared to have some clearly negative experiences.

Of course, it is impossible for us to know what it would be like to be in a MCS. Baker J was sensitive to the fact that the cognitively healthy should not arrogantly assume that a restricted existence is necessarily one without pleasure and enjoyment. Instead, he was of the view that even though ‘the pleasures of life … may appear smaller, that does not mean they can be disregarded’. Being made comfortable could, according to Baker J, be a ‘profoundly positive sensation’.

But what is interesting about Baker J's judgement is how marginal M's previously expressed wishes and feelings were to the essentially paternalistic assessment of whether M's profoundly restricted existence was on balance positive or negative for her. I would regard life in a MCS as a fate not only worse than death, but worse than being in a PVS. Yet the law treats PVS as a good reason to withdraw ANH, while the existence of minimal consciousness requires life to be artificially prolonged. On this point, with the greatest respect, I think that the law might have this the wrong way round: unlike the PVS patient, life may be positively burdensome for someone in an MCS.

If I want my wishes to trump the court's preference for the preservation of life, I need to do so very precisely indeed. I also need to make sure that my precise wishes are in writing, and that my signature was properly witnessed. Previously expressed wishes and clear statements about not wanting to be dependent and not wanting to be in a care home are simply not enough to override the principle of the preservation of life. The moral of this sad story is that all of us—even when we are completely healthy—need to think about whether we would wish to have ANH withdrawn if we were ever in a MCS, otherwise we risk being played music that makes us cry and being kept alive in part because stopping moaning when one has just had one's incontinence pads changed is said to be evidence of contentment.