Abstract
The patient, a middle-aged woman, suffered a viral brain stem encephalitis, causing extensive and irreparable and devastating brain damage. She was totally helpless, totally dependent, fed by a gastronomy tube, kept alive by artificial nutrition and hydration (ANH). This situation had obtained for several years. Originally diagnosed as persistent vegetative state (PVS) or vegetative state (VS), subsequently the diagnosis was revised to minimally conscious state (MCS). The patient was mostly in a coma, but seemingly had some awareness of the environment, some positive experiences, some response, smiles and tears and sobbing sometimes, eye tracking movements, attempts at minor physical movements, a very limited movement of the head and body. The patient was moved daily from bed to chair to bed. Sitting in the garden she would turn away from the sun into the wind. The patient was not unrousable, but only marginally rousable, not unresponsive, but only marginally responsive.
Whereas by definition VS is virtually fixed and final, MCS means a spectrum of condition, a matter of fact and degree, with possible change over time, though clinically the chances of any marked improvement may be unpromising.
The family sought the withdrawal of treatment and life support. Their case was that the patient had merely an existence, not “life”, no quality of life at all. There was a real possibility of suffering pain and discomfort and distress. It was cruel to keep her alive. The situation had been static for years, there was no real prospect of recovery or improvement. In the Hillsborough case in the 1990s, the young man crushed into a perpetual coma, the highest court in the land had approved withdrawal of life-sustaining treatment and support, leading to a peaceful and dignified death: Airedale NHS Trust v Bland [1993] AC 789, the Bland case. A responsible body of medical opinion agreed the diagnosis and the prognosis. In the instant case, before the illness the patient had orally expressed the wish not to be subjected to a long lingering death by medical science, and the integrity and reliability of such evidence was accepted.
On behalf of the patient, and resisting withdrawal of treatment and life support, the official solicitor argued that the situation was MCS, not VS, and clinically stable; there was a reasonable prospect and a positive programme of extending or increasing stimulation under a care plan; opportunities for improved communication did exist. The medical profession has had experience of the unexpected and amazing progress suddenly made by some patients, the Lourdes syndrome, when the patient either suddenly or gradually starts speaking or walking or whatever. The fundamental guiding ethics of the doctor is the preservation of life, the healing of the sick, and the prevention of pain and suffering. No doctor welcomes withdrawal of life support, though in professional terms there will come cases where he realises the futility of further effort to preserve life, and he takes responsibility for the decision and the inevitable outcome. Common humanity may indicate that the preservation of life is far worse than allowing nature to take its course.
Such was the issue facing the judge in W v M, S and a NHS Primary Care Trust [2011] EWHC 2443 (Fam). See also (2011) 155 SJ no 37 p 2, Editorial comment. How far does the law allow the withdrawal of treatment, the switch off, if indeed at all, for the minimally conscious patient, “one step up” one might say from the vegetative state patient (paras 57–77).
The judge did not rule out withdrawal on principle, it could be authorised, there is a “balance”, but some extremely difficult hurdles would need to be overcome by those advocating withdrawal with its inevitable consequence. The clinical diagnosis of the patient must be clearly established, over time. The formal medical assessment tools must be used, the Sensory Modality Assessment Rehabilitation Technique (SMART) and the Wessex Head Injury Matrix (WHIM).
The balancing exercise
In executing the balancing exercise, the judge must consider throughout the best interests of the patient, objectively judicially assessed (Mental Capacity Act 2005, ss 1(5) and 4). Relevant factors include the likelihood of recovery, and the wishes of the patient (if known) and of the family. In deciding in the best interests of the patient clearly the judge will not be motivated by a desire to bring about death, though that will be the inevitable albeit unintended consequence of “doing the best for the patient”. The human rights, right to life, the right to freedom from inhuman and degrading treatment, and the right to respect for family life, are all wholly compatible with the best interests principle.
The burden of proof lies upon whoever is proposing withdrawal.
There is a sanctity or essential quality in life, the preservation of life, taking all reasonable steps to prolong life, is fundamentally important, but not absolute (para 220). Nobody, not even a judge, who bears the ultimate responsibility in the event of dispute, wants the responsibility of authorising death. There clearly must be exceptional circumstances. In W the patient had a form of sensation, was clinically stable, aware of herself and her environment, able to respond and to communicate albeit in a very limited way, recognisably alive.
What pain or suffering or discomfort or distress is the patient undergoing, so far as can be ascertained? (para 231). Might he be facing the prospect of intrusive and invasive and painful operations in a continuing desperate effort to save his life, with uncertain outcome anyway?
What are the prospects or likelihood for improvement or recovery? (para 238).
What is the quality of life and the capacity for enjoyment? (para 234).
The dignity of the patient must always be respected and protected (para 240).
What is the impact of the situation upon the family of the patient, for example severe strain and distress?
A person in command of his or her faculties always has the right to refuse treatment, and then it may not lawfully be imposed. The law recognises the principle of personal autonomy and self-determination. In anticipation of a possible future supervening state of helplessness, a person may in writing make an advance decision, or directive or declaration (AD), under the Mental Capacity Act 2005 ss 24–29, indicating that in specified circumstances specified treatment is not to be carried out or continued (para 223). In the event the AD is binding, but the judge will give it very strict interpretation (s 25(4)). The judge is applying the objective best interests test, and the wishes of the patient are very relevant, although the lay patient in good health may not fully anticipate or appreciate how it will be when disaster strikes.
A person of sound mind would do well to make a lasting power of attorney authorising the donee to make decisions about personal welfare and property and affairs in the event that the donor may lose capacity (Mental Capacity Act 2005 ss 9–23), including refusal of treatment and support, though not as to override a valid AD.
The wishes of the family, presumed to be motivated by the best interests of the patient, unless otherwise shown, may be taken into account, but as a marginal factor only (para 242). The patient is likely to have considered the impact of his life or death upon the family.
By its very nature the balancing involves weighing the factors, the advantages and disadvantages, on both sides of the scales (paras 247–248). There would be gains and losses, benefits and disbenefits, either way. The MSC patient is in a severely disabled state. Medically, therapeutically, emotionally, ethically and generally, what does his welfare require?
Result
Thus on balance in W v M, S and a NHS PCT the judge refused to authorise withdrawal (paras 249–255). But he saw no objection to a do not resuscitate (DNR) policy made in a proper medical manner, e.g. to take effect in the event of a serious infection which will mercifully carry the patient off.
Procedure
These cases are heard in the Court of Protection, under an assigned High Court Judge from the Family Division. The hearing may be ordered by the judge to be heard in open court, though the hearing and any reporting is subject to anonymity and no identification of the parties involved in view of the sensitivities of the issue for all concerned.
Significance
The traditional VS cases may be described as relatively simple and straightforward, being cases where there is finality in the state of the patient and all quality of life gone. The MCS cases represent a grey area, an area where the judge has a degree of discretion, where a balance has to be struck between competing arguments. The family of the patient will be emotionally involved. The doctors may be concerned not to appear to be advocating withdrawal, because the confidence of the public in the medical profession depends to a large extent upon the knowledge that the doctor will always do the best for the patient, even when the patient is in a very serious medical condition. But responsible doctors do not shrink from responsible decisions, however sad the consequences. The judges may find themselves involved in a substantially increased number of cases of this nature. In recent years the assisted dying or voluntary euthanasia movement has made no legislative progress though appears to be gaining considerable public support, partially as a result of the failed bills in the House of Lords, the much publicised vulnerability to prosecution of those assisting suicide and the Swiss Dignitas deaths. Where the patient has become incapacitated, as in W v M, S and a NHS PCT, the opportunities for seeking authorisation of withdrawal are increasing, along with the increasing use of the AD asking for withdrawal of treatment by the patient himself, and even the donee of the lasting power of attorney on behalf of the incapacitated patient.