No doubt the case received the media attention that it did because it is the first case in which a judge has sanctioned the cessation of treatment being given to a patient lacking capacity who possesses (a minimum level of) awareness.
Earlier judgements have authorised the withdrawal of CANH from patients in the persistent vegetative state (PVS), with the most famous of these being Airedale Trust v Bland  1 All ER 821 (HL) involving the Hillsborough Disaster’s ‘96th and final victim’. The condition of PVS is one in which there is a complete lack of conscious awareness. Because of the nature of Anthony Bland’s condition, described by one of the judges in the House of Lords as a ‘living death’, with no prospect of an improvement, it was judged that continuing life-sustaining treatment would be futile. Thus, it was not in his best interests to continue to receive it.
MCS differs from PVS because the patient possesses a minimal and inconsistent level of consciousness. The condition encompasses a range of responsiveness from patients who are able to follow commands to patients who ‘show only non-reflexive movements such as orientation to noxious stimuli [and] pursuit eye movements’. MCS tends to involve a more variable prognosis than PVS.
It is an application of the best interests test which determines the appropriate course of action in cases where patients lack capacity under the Mental Capacity Act 2005. As part of this assessment, the Act requires that there be consideration, so far as is reasonably ascertainable, of the person’s past wishes and feelings and the beliefs and values that would be likely to influence his decision if she had capacity. Yet in an earlier case involving another patient (M) who was in MCS, the judge determined that continued treatment was in her best interests even though her family were strongly of the view that she would not have wished her life to be continued (M v An NHS Trust  EWHC 2443 (Fam)). The judge in the High Court prioritised the preservation of life and emphasised the positive experiences M was still able to have which could reasonably be expected to continue, such as listening to music. His decision has been persuasively critiqued by Alexandra Mullock for its failure to take sufficient account of the patient’s autonomy as expressed through her family’s views.
In this new case, M sought a declaration as to whether it was in the best interests of her mother, Mrs N, to continue to receive CANH. Mrs N was in the very advanced stages of Multiple Sclerosis. Hayden J noted the ‘pain, increasing dependency and remorseless degeneration that has now categorised her life for so long’, although, given that she was in the MCS (which she had been in since 2008), it was unlikely ‘that she has the capacity to experience pain at all’ (paras 60 and 74). Her life expectancy was predicted as being in the region of three to five years. The judge took some time to consider Mrs N’s views and values when formerly competent, as presented by her family. Her indomitable spirit, strong personality and loathing of the idea of being dependent and incapacitated make a powerful impression in his judgement and he was clearly concerned to place Mrs N at the centre of his best interests assessment.
It is notable that Hayden J emphasised that the case was not about a right to die. Indeed, he stated, ‘no such right exists’ (para 70). Rather, he said, ‘What is in focus here is Mrs N’s right to live her life at the end of her days in the way that she would have wished’ (para 70, my emphasis.) Is there an important difference between recognising someone’s right to die as they would wish and someone’s right to live at the end of life as they would wish?
Phrasing the issue as a right to live at the end of life in the way one would wish is certainly more euphemistic. It suggests the right to be let alone to live one’s life as one would wish (respecting what we might call one’s negative autonomy) as opposed to a right to die, a right to ask for intervention to end one’s life (respecting one’ positive autonomy). A doctor who withdraws treatment from a patient with capacity who wishes that their life be prolonged no longer would be acting lawfully. A doctor who administers a lethal dose of a drug to a patient who wishes to die would not. Perhaps Hayden J was simply looking to clarify that this was not a case of the latter, involving an assisted death.
However, we might ask whether this distinction actually boils down to nothing more than mere semantics in Mrs N’s case. The reality is that her family’s views clearly revealed that she would not wish to live the life that she was possessed of. The judge’s granting of the declaration meant that Mrs N got what she would have wanted: an end to a life which she would have found appalling and ‘grotesque’ (paras 60 and 75). Is this not effectively a right to die, albeit involving respect for negative autonomy?
If so, was Hayden J engaging in a moral fiction to make the case appear less controversial? With Margaret Brazier, I have previously argued that medical end of life cases are replete with such moral fictions, orchestrated narrative framing which divides ‘good’ from ‘bad’ behaviour and permissible from prohibited behaviour. When it came to defining the question that it fell to him to answer in this case, Hayden J emphasised that it concerned the appropriateness of continuing treatment (good behaviour) rather than whether the patient’s life should be brought to an end (bad behaviour) (para 13). When viewed in this way, it is harder to perceive the case as involving medical behaviour that ends life.
But this is exactly what it is about. Treatment is being provided which, if discontinued, will lead to the patient’s death. The crux of the matter is that this is deemed to be acceptable medical behaviour that ends life. This is what differentiates Mrs N’s case from others such as that involving Tony Nicklinson. However, the question of whether this continues to illustrate the ‘morally and intellectually misshapen’ law alluded to by Lord Mustill in the Bland case remains.
Suzanne Ost (@SuzanneOst3737) is Professor of Law in the Law School at Lancaster. She researches in the areas of medical law and ethics and child sexual exploitation. She is the co-author of Medicine and Bioethics in the Theatre of the Criminal Process and is the Editor-in-Chief of the Medical Law Review.