Withdrawal of treatment from minimally conscious patients

Introduction

On 28 September 2011, Baker J, sitting as a judge in the Court of Protection, handed down judgement in the case of W v M and Others (2011) EWHC 2443 (Fam) (hereafter W v M). The case, widely perceived to be a landmark decision, was the first time that the courts in England and Wales have been asked to authorize the withdrawal of artificial nutrition and hydration (ANH) from a patient in a minimally conscious state (MCS). M, then aged 43, was due to depart for a skiing holiday with her partner when, the evening before, she went to bed early complaining of a headache. The following morning she was found by her partner in a drowsy and confused state. An ambulance was then called and M was transferred to hospital, where her condition deteriorated rapidly. She drifted into a coma and was diagnosed as suffering from viral brain stem encephalitis. After she regained consciousness it became apparent that she had suffered extensive, irreparable and devastating brain damage. Eventually M was diagnosed as being in a MCS, rendering her dependent on ANH via a gastrostomy tube and being totally reliant on others for all aspects of her basic daily care. There was a consensus of medical opinion which suggested that there was no realistic prospect of any improvement in M's condition. Once her family accepted this diagnosis, they applied to the High Court for declaration that M lacked capacity to make decisions as to her future medical treatment (which was never disputed) and that it would be lawful to discontinue and withhold all life-sustaining treatment, including ANH. The case was transferred to the Court of Protection where Baker J refused to grant the declarations sought in a judgement which placed the emphasis in cases such as these firmly on preservation of life. It is argued here that the emphasis was placed incorrectly. This paper begins by highlighting the differences between the conditions of the permanent vegetative state (PVS) and the MCS, before proceeding to discuss the balancing act which must be performed in the assessment of best interests. The article then focuses on where the emphasis was placed in this exercise as compared with where it should have been placed. The piece finally concludes by analysing some of the enduring questions which have been left in the wake of this important decision.

PVS versus minimally conscious: the subtleties

In Airedale NHS Trust v Bland ¹ the House of Lords was confronted with the question of whether or not ANH treatment could lawfully be withheld from a patient who was diagnosed as being in a PVS. ² They answered in the affirmative and since then the law in England and Wales has remained settled, but the precedent was narrow in scope. Their Lordships stressed that their ruling was confined only to those patients who were actually diagnosed as being in a PVS, and restricted an accurate diagnosis of this condition as having to be made by two independent doctors within a minimum 12-month time-frame. They also placed an additional safeguard on their judgement which required a declaration of lawfulness from the courts before ANH could be withdrawn from PVS patients in any future cases. One effect of this, inter alia, was that it removed treatment decisions of this type from being solely within the remit of doctors’ clinical discretion.

In many respects the ruling in Bland has stood the test of time and its status remains intact, at least insofar as PVS patients are concerned. However, medicine, science and technology do not stand still and, over a period of time, knowledge of the unconscious state has increased. Advances in diagnostic techniques have also made it easier to differentiate between different levels of consciousness, which has led to the formal recognition of a condition which shares many of the characteristics of the PVS, but which is not exactly the same. It was only a matter of time before this condition, known as the MCS, presented a legal challenge to extend the ruling in Bland.

It is acknowledged by the medical community themselves that the immediate difficulty when dealing with any question relating to the MCS is that while it is a condition that is recognized, it is not a condition that is widely understood. At the time of the Bland decision there was still a certain amount of disagreement about the precise nature of the PVS condition. ^3,4 While some difference of opinion remains, which will almost certainly continue to exist in cases where the mysteries of the brain are concerned, medical understanding of the PVS has improved considerably to the point at which the key features of the condition are generally accepted by the majority of doctors. The condition is thus characterized by the complete absence of awareness of self-environment, lack of behavioural responses to stimuli, no evidence of language comprehension or expression, intermittent wakefulness, bowel and bladder incontinence and variable preservation of cranial nerve and spinal reflexes. ⁵ Despite the presence of all these factors, there is sufficient preservation of autonomic functions to permit the patient to survive with appropriate medical care. In short, all higher brain activity is effectively lost, but the brain stem continues to function. Crucially, however, a mass of watery fluid fills the space which should be occupied by the brain and, as such, there is no hope of recovery of any sort.

The MCS is a state just above that of the PVS, but which involves extremely significant limitations on consciousness. A MCS is diagnosed by evidence of self or environmental awareness on a reproducible or sustained basis. So, for example, a patient may behave in one or more of the following ways: follow simple commands, respond either verbally or by gestures, demonstrate intelligible verbalization or engage in purposeful behaviour in relation to relevant environmental stimuli. ⁵ Difficulties are nevertheless encountered because there is no clear definition of the various levels of consciousness within the MCS. ⁵ Thus, we know that a MCS patient is experiencing something ‘more’ than a PVS patient, but we do not know precisely what they are experiencing within that condition; there is a broad spectrum in which there are some patients who are only just above the PVS and others who are bordering on full consciousness. Where these patients lack capacity, which in the majority of cases they will, it falls to the court to make treatment decisions for them based on what is in their best interests. This is no mean feat for any judge amid the clear medical uncertainties associated with the MCS.

Balancing best interests

In a legal sense, the crucial distinguishing factor between W v M and its predecessor Bland was the manner in which the question of best interests was approached and interpreted. The nuances of the MCS, as compared with the PVS, allowed the courts to consider the question of best interests from a slightly different angle, which was undoubtedly a decisive factor in the final outcome of W v M.

Adult patients who lack capacity fall under the jurisdiction of the Mental Capacity Act 2005. This legislation provides for a range of substitute decision-making processes for those individuals who cannot make decisions for themselves. The courts can therefore make decisions about an individual's medical treatment, provided those decisions are made in that person's best interests. ⁶ At a glance this seems straightforward enough, but the problem is that best interests, as a concept, is fraught with definitional ambiguities. Traditionally it was dictated largely by the medical understanding of the term, ⁷ but the new legislation embraces a more expansive definition. Section 4 (6) of the Mental Capacity Act 2005 instructs the court, as the substitute decision maker, to consider, so far as is reasonably ascertainable, (a) the person's past and present wishes and feelings, (b) the beliefs and values that would be likely to influence the decision if the person had capacity and (c) the other factors that the person would be likely to consider if he were able to do so. Section 4 (7) (c) also states that the views of anyone engaged in caring for the person or interested in his welfare must be taken into account. The upshot is that best interests is not to be viewed in the narrow one-dimensional way that is once was; it now requires a much wider assessment of ‘medical, social and emotional factors’. ⁸ In order to fulfil this objective, the courts must ordinarily engage in a careful balancing exercise of a range of factors when forming their opinion as to what is in a patient's best interests. ^8,9

In this lies the difference between a PVS and a MCS case; in Bland, the House of Lords held that in respect of patients in a PVS there was, in effect, no balancing exercise needed because the scales tip in one direction in every case – in favour of withdrawal. This is because maintaining treatment can never be said to be in a PVS patient's best interests; the treatment has exhausted its therapeutic purpose and is futile in the sense that the patient is unconscious and has no prospects of recovery. The accuracy of this, nowadays, could potentially be called into question. In the same way medicine and science do not stand still, neither does the law. Bland was decided at a time when best interests were dominated by medical reasoning and, as posited earlier, this is no longer the case. The machinery of the Mental Capacity Act 2005 demands that decisions made for all patients lacking capacity must be done so in their best interests and, given that such wide criteria must now be considered under the Act, it seems plausible that a balancing exercise should be performed in respect of PVS patients. This is in recognition that their best interests may not be confined solely to the medical understanding of the term. ¹⁰ Nonetheless, even if a balancing act has to be performed, it is submitted that the pendulum would still swing in the favour of withdrawal in PVS cases. MCS cases, however, are different because the balance may swing either way, depending on the facts, and the expert evidence, in a particular case. ⁵ In some instances it may be clear that continuing medical treatment will be in a patient's best interests, whereas in others, after meticulous consideration of all the factors for and against, withdrawing life-sustaining treatment may well be the most apposite course of action. Thus, in W v M, the courts had to consider the respective benefits and drawbacks of continuing the life-sustaining treatment and withdrawing it.

As a legal principle, the balancing exercise itself is not without faults. It is incredibly difficult to measure the importance of certain factors as and against each other when they are not always easily comparable. That being said, more of an effort can and should be made in some cases and this is particularly true of the balancing act which was performed by Baker J in W v M.

The advantages of withdrawing ANH from M were identified as follows: M would be freed from the pain and discomfort that she is currently experiencing and the prospect of increased pain in the future, she would not have to endure further intrusive treatment with unpleasant side-effects, she would be spared from the distress she demonstrates after seeing her partner S and after hearing certain pieces of music and she would be freed from the indignities associated with her current circumstances. M would be allowed to die with dignity in accordance with the wishes of her family members, reflecting not only what she would have wanted, but also what was in her best interests based on her family's views. Finally, she would be spared further years of surviving in a MCS and, even though she may experience some pain and discomfort as a result of discontinuing the ANH, those experiences would be limited in time and controlled by medication and experienced end-of-life care. ⁵

On the other side, the advantages of continuing the MCS were summarized as such: M would be kept alive for a further 10 years and, as preservation of life is a fundamental principle, she would be spared the effect of withdrawal of ANH which would cause her pain and distress and ultimately lead to her dying by starvation and dehydration; she would continue to experience life with a degree of awareness of herself and her environment; and she would continue to gain pleasure from company, listening to conversation, music and the sensory experience of the ‘snoozeroom. ^5,11 A planned programme of stimulating experience would be likely to extend the enjoyment in her life, and her surroundings and environment could be altered to add to her pleasure. Also, as she is clinically stable, she would continue to experience life at this level for a number of years. ⁵ After considering all of the above, Baker J concluded that the importance of preserving life was the decisive factor in the case which precluded the withdrawal of ANH. This, it is submitted, was a rather narrow way of looking at best interests in this particular case.

Placing the emphasis

There were a total of nine advantages identified in withdrawing treatment and only seven in respect of continuing it. The numerical difference is neither here nor there because the balancing act is patently more complex than simply adding up the number of factors on each side and reaching a conclusion as to which course of action is in the patient's best interests based on which has the most. Some factors, quite rightly, will carry more weight than others and ought legitimately to be given precedence. Even so, one would expect to see evidence of a transparent decision-making process, which reveals solid and cogent justifications for placing additional weight on one particular factor at the expense of others. Some insight is provided into the decision-making process in Baker J's judgement, but the justifications for singling out preservation of life over and above anything else are far from compelling. Baker J stated:

…I do not agree…that M's overall experiences are clearly negative…I therefore accept that M does have positive experiences and that, although her life is extremely restricted, it is not without pleasures, albeit small ones. Furthermore, I accept the evidence of Ms Gill-Thwaites and Mr Badwan that there is a reasonable prospect that M's positive experiences and quality of life can be extended by changes to her care plan that carefully expose her to increased stimulation. I am fortified in that belief by the knowledge that such a plan would be implemented by this truly dedicated care team. ⁵

In cases such as these, it is contended that quality of life ought to be the guiding principle, and the judgement stopped short of analysing the considerations which truly underpin this important value. Baker J's conclusion that M's life was not without pleasure seems to have been influenced heavily by the professional opinion in the case about what can be done to improve M's positive experiences, but this does not address the wider holistic question of whether or not M has a reasonable quality of life. A wider range of social and emotional factors have to be weighed in the balance before it can be said that ‘small pleasures’ provide a strong enough basis for best interests to be served by preserving life. Very little consideration seems to have been given as to how the one advantage of continuing treatment relates to, and compares with, the many advantages of withdrawing treatment which seem equally if not more persuasive.

The problem for Baker J was that he knew that the patient was conscious, but could not be certain about the precise level of that consciousness. This immediately sets cases such as these apart from those which concern the PVS because in the latter the patient has no awareness, feelings or experiences. The level of M's awareness and ability to experience pleasure and pain remains in doubt. Baker J was thus guided by the expert evidence in the case which hinged largely on what is referred to as the sensory modality assessment and rehabilitation technique (SMART). The SMART, developed initially in this country by Ms Helen Gill-Thwaites, is widely recognized both here and abroad and has been validated by the medical profession as an acceptable method of diagnosing the level of awareness and consciousness in a brain-damaged patient. ⁵ While it is undoubtedly one of the most effective assessment techniques available, it still cannot provide a definitive answer as to the exact level of a patient's consciousness. ⁵ Two SMART assessments were carried out on M, one in 2007 and another in 2011. The 2007 assessment supported the diagnosis of M being in a MCS, evidenced by the fact that she demonstrated a level of responsiveness. It was established that M could track a photograph of a baby and, perhaps more significantly, could press a switch to command not once but twice. This demonstrates that there was some level of cognitive process of understanding taking place at that time, but sadly her carers could not carry this forward and develop her responses into a yes/no answer in order that she could begin the process of communication. ⁵ The second SMART assessment yielded similar results in terms of the MCS diagnosis, though M's meaningful responses were less consistent during the course of the formal component of the assessment. ¹²

The fact that the patient demonstrated a level of awareness and response was viewed as a positive factor in continuing treatment and it undoubtedly would have been a very bold move to authorize the withdrawal of ANH in the face of this evidence, but the declaration could have been granted and it would have been supported by a solid legal basis. The argument that awareness and response was a positive in M's case cuts both ways. M's responses could have been indicative of pleasure; equally they could have been signs of pain, discomfort and distress. Evidence from the professional care team was taken as suggesting otherwise, but, with the greatest respect, their close involvement with the patient and her situation may have clouded their judgement about M's sense of enjoyment in her life. ⁵ This is not a slight on their professional views and competencies; it simply acknowledges that they cannot answer definitively the key questions that they were being asked and so a more questioning attitude should have been adopted in respect of that evidence. What is clear is that M cannot communicate and so she cannot tell us what level of pain and discomfort she is feeling, albeit it is fairly certain that she is experiencing some. ⁵ Can it really be said to be in M's best interests to subject her to a possible further 10 years of indeterminate pain, distress and discomfort? Bearing in mind that it was generally accepted that M is not going to get better, nor in any real sense of the word improve, her pain and suffering can only be controlled at best and deteriorate further at worst. Maintaining her in this state, for the sake of preserving sanctity of life at all costs, leaves an unsavoury taste in the palate. This feeds into a wider debate: what of M's quality of life?

The inherent problem with the concept of quality of life is that it is subjective. Only M can tell us what counts as quality of life to her and as she cannot it is left for someone else, in this case a High Court judge, to engage in an objective assessment of what counts as being in her best interests. One consequence of judicial objectivity when it comes to this matter is that there is still a wide margin for varying interpretation; some judges will choose to view the concept narrowly and others will view it more expansively. Baker J chose the former, to the point where it could be argued that there was hardly any consideration given to quality of life at all. To him, the fact that M had a life meant that there had to be some quality in it, which in turn meant that it had to be preserved. This is an even narrower interpretation of best interests than we historically saw when the concept was guided by the medical profession under Bolam, a position which the law has been trying to distance itself from for some time. ¹³

No one can say with any degree of certainty what M would say or feel about her current predicament. Similarly, it is pure speculation about how she would react to the question of whether or not she would want to be maintained or allowed to die. However, it is perhaps interesting for readers to consider this: if you could take M, as she once was before her unfortunate illness, out of her current position and allow her to look down from above on herself as she is now, how do you think she would react to that question? It is perhaps correct that the law should treat such speculative inquiry with a degree of caution, but there is certainly scope to suggest that judges ought to be more sensitive to considering how the patient themselves would perceive their existence now. Quality of life, in order to become a meaningful investigation, cannot be considered solely in relation to the present; some assessment has to be made of the quality of life the patient once enjoyed compared to what they are faced with now, and in the future.

Legal scholars will no doubt point out that this runs dangerously close to the ‘substituted judgement’ approach, an assessment which allows the court to act as they believe the patient would have acted had she possessed all her faculties. While accepted in certain cases in the USA, this line of reasoning has been rejected in England. ^14,15 Yet, in actual fact, there was no need to adopt a specific substituted judgement approach in W v M because under the new best interests test specific consideration has to be given to M's past and present wishes and also any beliefs and values that would be likely to influence her decision. ^16,17 There was unchallenged evidence that M felt that someone in the position of Tony Bland should be allowed to die. Moreover, before her illness M was an intelligent, lively, hard-working and independent individual. These features, which have since disappeared from her life, will never be regained, which led her partner to conclude that she would have been ‘horrified’ by the thought of living in her current condition. ⁵ The court all but disregarded this important evidence and in doing so effectively condemned M to a continued undignified existence, where, for all we know, she may feel trapped and unable to tell us what she wants, be in severe pain and horrified by her future prospects. When one considers best interests in light of these considerations, is it really as straightforward as saying preservation of life is the ace card here? ¹⁸

The argument is not that sanctity of life is an unimportant consideration, it is acknowledged that there is an intrinsic value in life itself; it is simply that in this case there were a number of sufficiently overpowering factors which the court should have placed greater emphasis on in order to reach a different conclusion about what was in M's best interests. It may well be that the speculative nature of these considerations would not, to many, tip the balance in favour of withdrawing treatment and this point is accepted. However, they certainly should have been given greater consideration than they actually received, since mere consciousness, a varied level of response and preservation of life alone are not enough to justify the outcome in M's case.

Enduring questions

W v M raises a number of wider policy questions which are also worth considering.

First, the case calls into question the effectiveness of the law relating to advance decisions. ¹⁹ There was no legally valid advance decision in W v M, but it has already been noted that there was indirect evidence about what her wishes would have been. ⁵ This underscores the problem in MCS and other brain-related injury cases. Tragic illnesses of this kind are often unexpected and, for a variety of reasons, affect younger people. It is an incredibly cautious (some may say pessimistic) person who drafts an advance decision at an early stage in their adult life in fear of the unexpected. It is therefore highly unlikely that a legally valid advance decision will have been made by patients who find themselves in a MCS, which is troublesome given that it is in these cases where they will be needed the most. These problems can be tempered, at least to an extent, by the courts giving adequate consideration to the past wishes of the patient and also to any values and beliefs that may have influenced their decision, but they must do this to greater effect than they did in W v M if that legal requirement is to have any worth. ²⁰ One danger for the courts, though, in attaching too much weight to these considerations in the best interests exercise is that, more often than not, evidence of past wishes and beliefs will come from the patient's relatives and loved ones. What, then, ought to be the position in respect of these views?

Relatives’ views should be scrutinized carefully and certainly ought not to be treated as definitive, but they should equally, as a matter of law, be given their due. There was no cause to suspect that M's family and partner were acting out of anything other than compassion in bringing the case and there was certainly no suggestion that they were being untruthful. Yet their views and wishes seemed largely to be overlooked when there is certainly a case to suggest that their views, which if nothing else were at least an indicator of what M would have wanted, coupled with the considerations pertaining to M's quality of life, could have been enough to tip the balance in favour of withdrawal. It is, after all, incredibly painful and distressing for relatives to see their loved ones continue to suffer in this way. M's family pursued their case through the correct channels and ought to be praised for doing so. Others who hear about the outcome in this case and share similar frustrations may not. A powerful assertion perhaps, but we have seen relatives pursue unlawful avenues before to put their loved ones out of their misery, to the detriment of all concerned. Recently, Frances Inglis was convicted of murdering her severely brain damaged son. Here the patient was not in a MCS and so the case is slightly different from W v M, but nonetheless parallels can be drawn between the two. The family members in W v M, in all probability, share the same sense of frustration and helplessness that Frances Inglis did, knowing that their relative is suffering and that there is no realistic prospect of recovery, and that the law will not help them. ²¹ As reluctant as one may be to admit it, the decision in W v M does nothing to discourage those who feel that they have no other option than to take the law into their own hands.

A further interesting point concerns the question of capacity. In this particular case it was accepted by all parties that M lacked capacity, as would the majority of MCS patients. ⁵ Nonetheless, she did have a level of responsiveness. Her carers tried, unsuccessfully, to develop M's responses into a functional way of communicating. What would have been the situation if M's responses could have been turned into meaningful sustained and replicable communication? For instance, at some stage there was evidence to the effect that M could respond to pressing and releasing a switch on command. What if M was asked the question: ‘Do you wish for medical treatment to continue? Click once for yes and twice for no.’ If she had demonstrated a sustained ability to respond ‘no’ to this question, would the courts take this as a positive form of communication in which she was expressing a wish to discontinue treatment? Current research indicates it would be highly unlikely that a patient in a MCS would be able to respond and communicate in this way, ^22,23 but the doctors in M's case must have thought it not to be beyond the realms of possibility to develop a heightened cognitive process in her because they did try to bring her on to the next level. ²⁴ If this situation were ever to arise it would be very interesting to see what the courts would do. The immediate argument would no doubt be that if a patient can demonstrate a continued response and communicate this somehow to evidence a decision then they have been wrongly diagnosed as being in a MCS in the first place, but the spectrum of consciousness within the MCS is not yet fully understood to the extent that one can completely discount this hypothetical possibility. Presumably a level of consciousness and response, which in M's case were undoubtedly key factors in maintaining her life, would have to be viewed in the opposite way in a case where a patient repeatedly expressed a wish, via some form of sustained response, to refuse treatment. If treatment were to be continued regardless, surely there is an argument that it would constitute tortious battery, as it would have done in cases such as B v An NHS Trust. ²⁵

Finally, the case considered the use of Do Not Resuscitate Orders (DNR Orders). Baker J stated that the continued use of a DNR Order would be acceptable. This was because M would suffer hypoxia if her heart stopped beating, which would cause further damage to her brain. If she were to be successfully resuscitated, the damage to her brain would probably increase and in turn her level of consciousness and awareness would deteriorate. Other treatment decisions, however, such as the provision of a course of antibiotics, remained within the scope of clinical discretion and whether or not this was in the patient's best interests would depend on the future circumstances. ⁵ In contrast to his position throughout the majority of the case, Baker J actually relied upon quality of life arguments to support the continued DNR Order. Thus, it would seem the emphasis placed on preservation of life was acceptable, but only up to a point. Baker J was seemingly happy for the law to support the position that M's life should not be preserved, but only in a situation where nature has been allowed to take its course. This feeds into a much wider debate about why the law should condone certain passive inactions, but fail to sanction any positive steps to hasten a patient's death and put an end to their pain and suffering. This discussion is beyond the remit of this paper. Nonetheless, it suffices to say for present purposes that the nature of M's death had treatment been allowed to be discontinued, starvation and dehydration, are in the eyes of this author the most convincing factors for refusing the declaration, but that is not to say that those reasons are sufficiently overpowering to support an argument for preserving M's life in this particular case. Paradoxically, it is only advances in medical treatment and technology that have allowed M to be maintained in her current state; had nature been allowed to take its course in the first place M would not be in the position that she is now.

Conclusions

For those who harbour concerns about the nature of the judgement in W v M, some comfort can be taken from the fact that its value as a precedent moving forward is limited. Baker J did stress that all future MCS cases must be referred to the Court of Protection in order for the parties to obtain a declaratory ruling; therefore the indication is clearly that each case will be need to be considered on its own merits. ⁵ One purpose (and effect) of this, among others, is that it prevents any floodgates argument from gathering momentum. There may have been a concern among some that if the law sanctioned the withdrawal of treatment in M's case, where would it end? Baker J quelled these fears somewhat by requiring future court referral, but, with that in mind, one may be left wondering why he felt the need to reach the overall decision that he did based on the facts of this case. There is also further cause for concern. At various points in the judgement it was acknowledged that M was, and possibly still is, at the lower end of consciousness and awareness within the MCS. ⁵ While the expert opinion did fluctuate at points about the state of her consciousness, it was accepted that she is never going to recover nor improve. ^5,26 If the courts are not prepared to grant a declaration that it is lawful to discontinue treatment in what appears to be an extremely severe case of MCS, when will they ever be prepared to do so?

Scholars opposed to the critical nature of this piece will be quick to point out that Baker J, insofar as applying the correct law, did nothing wrong. He performed a balancing exercise in the best interests’ assessment and simply placed emphasis on a factor that he perceived to be more important than those which are argued for here. That may be the case, but by definition there will always be some level of consciousness in MCS patients and so the courts must be prepared to look beyond the mere preservation of life and consider the wider factors in the quality of life assessment if they are ever going to find a legal justification for allowing withdrawal of treatment from patients in this horrific condition.