In Re Y  UKSC 46, the Supreme Court has given the definitive answer to a question that has been becoming increasingly pressing – when is it necessary to seek the approval of the court before Clinically Assisted Nutrition and Hydration (‘CANH’) is withdrawn from a person with a prolonged disorder of consciousness (‘PDOC’)? Importantly, in so doing it has also answered the wider question of when it is necessary to go to court before withdrawing or withholding any form of life-sustaining treatment from a person lacking the capacity to consent to or refuse such treatment.
Ever since the decision of the House of Lords in Bland, it has been recognised that CANH constitutes a medical treatment and that (as with any other medical treatment) it can be withdrawn where it is no longer in a patient’s best interests without the medical practitioners being guilty of the offence of murder. Indeed, in Aintree, the Supreme Court made clear that the continued provision of CANH (or any other medical treatment) which was not in the patient’s best interests would be actively unlawful.
The House of Lords in Bland suggested that it would be good practice for applications to be made to (then) the High Court for endorsement of the decision to withdraw CANH from those patients in a permanent vegetative state, at least until a body of experience and practice had built up which would obviate the need for such an application. That would be so even where there was agreement between the families and the treating clinical team that continuing CANH was not in the person’s best interests. Through a process of accretion described in the judgment of Lady Black in Y, the suggestion became crystallised into what was understood by many (in particular clinical practitioners) to be a legal requirement, and extended to include similar decisions in relation to those in a minimally conscious state. And so this position would have remained, causing, in many cases, considerable distress to families at the delay caused by the need to go to court in order to get endorsement of an agreed decision, had it not been for a series of awkward questions asked in 2017 as to the precise basis upon which the Code of Practice and Practice Direction 9E appeared to mandate that such decisions went to court.
Those awkward questions were ultimately posed in stark form in Y’s case, where the NHS Trust responsible for the care of man in an MCS, whom both the family and treating team agreed should no longer receive CANH, went to the High Court to get a declaration that it did not need to approach the Court of Protection for endorsement of this position. The Trust went to the High Court rather than the Court of Protection, so that there could be no suggestion that it was accepting the jurisdiction of the Court of Protection to make the decision (as had had happened in Re M, leading to somewhat sterile arguments as to whether the resulting decision that the Trust need not have come to court was, or was not, obiter).
O’Farrell J held at first instance that the Trust did not, as a matter of law, have to seek the endorsement of the Court of Protection where the decision to withdraw CANH was an agreed one. The Official Solicitor, acting as Y’s litigation friend, sought and obtained leave to ‘leapfrog’ the decision to the Supreme Court, albeit, by the time that the case reached the Supreme Court Mr Y had died after contracting acute respiratory sepsis. The Supreme Court nonetheless determined the appeal should go ahead because of the general importance of the issues raised.
The Official Solicitor submitted that, in every case, court approval had to be sought before CANH could be withdrawn from a person with PDOC, thus ensuring that the patient’s vulnerable position was properly safeguarded by representation through the Official Solicitor, who could obtain independent expert medical reports about his condition and prognosis, and make submissions to the court on his behalf if appropriate. The Official Solicitor derived this requirement essentially from the common law and/or the European Convention on Human Rights (ECHR), in particular Article 2 and Article 6. He also submitted that his position found support in the statutory Code of Practice to the MCA 2005, and it was irrelevant that neither the MCA 2005 nor the Court of Protection Rules specifically impose the requirement for which he contended. The intervenor Care Not Killing supported the Official Solicitor, drawing particular attention to difficulties in diagnosis.
The Trust and CCG (the latter as the body funding Y’s cases, and jointly represented with the Trust) argued, in response, that (1) Bland established no more than a rule of practice, (2) it was time for that blanket rule of practice to be dispensed with, and replaced by adherence to the detailed available professional guidance, and (3) there was no breach of human rights involved in withdrawal of CANH from a patient in a PDOC if continuation was not in their best interests. The British Medical Association, the Intensive Care Society and the Faculty of Intensive Medicine, intervening, supported the Trust/CCG’s arguments, and also put before the court relevant professional guidance, material setting out the realities of decision-making in different clinical situations, highlighting the difficulty of carving out CANH withdrawal in PDOC from other forms of decisions routinely taken by doctors in conjunction with families.
In a detailed tour d’horizon, taking in the common law, the MCA 2005, the jurisprudence of the Court of Protection, the ECHR and relevant medical guidance, Lady Black, delivering judgment on behalf of the Supreme Court, concluded in clear terms that there was no requirement either at common law or under the ECHR for court approval to be sought in the way contended for by the Official Solicitor. Importantly, Lady Black also then took a step back from her “intense focus upon the law” to consider the issue in its wider setting. At paragraphs 116 ff, she held as follows:
116. It is important to acknowledge that CANH is more readily perceived as basic care than, say, artificial ventilation or the administration of antibiotics, and withholding or withdrawing it can therefore cause some people a greater unease. However, it was decided as far back as the Bland case that CANH is in fact to be seen as medical treatment. It is not easy to explain, therefore, why it should be treated differently from other forms of life-sustaining treatment, and yet that is the consequence of the legal position for which the Official Solicitor contends.
117. Furthermore, the Official Solicitor’s focus is on only one sub-set of patients who are, for one reason or another, unable to take their own decisions about their medical care and in respect of whom life-sustaining treatment is under consideration. This is a point that Peter Jackson J made in In re M (Incapacitated Person: Withdrawal of Treatment), and it emerges with some force from the written submissions of the BMA and of the ICS and the FICM. It is not only those, such as Mr Y, who suffer an acute episode and are then stabilised, who may require CANH. The need for it can arise also, for example, in the advanced stages of a degenerative neurological condition such as Huntington’s disease or multiple sclerosis, or in the advanced stages of dementia, where there may be a recognised downward trajectory. Presently, the BMA say, in the case of patients who have suffered a severe stroke, or are significantly cognitively impaired but conscious, or are suffering from a degenerative neurological condition or other condition with a recognised downward trajectory, decisions to withhold or withdraw CANH are made on a regular basis without recourse to the courts. The BMA can see no principled or logical reason for requiring court review in relation to patients with PVS and MCS but not for a patient with a different condition. Similarly, it can find no logical reason why one form of medical treatment, CANH, is treated differently from other forms of medical treatment such as artificial ventilation.
118. The submissions of the ICS and FICM are illuminating as to what occurs in units delivering critical care to patients. Most admissions to such units occur as an emergency, without the patient having made any advance decision about treatment, and possibly already so unwell that he or she has impaired consciousness or is unable to communicate wishes. Most decisions relating to medical treatment in the critical care setting, including as to whether life-sustaining treatment is withheld or withdrawn, have to be made without the participation of the patient. They are, we are told, “almost invariably taken on the basis of (in England & Wales) best interests and (in Scotland) benefit, on the basis of consensual decision-making as between the clinical team and the patient’s family and carers”. In that critical care setting, CANH is not considered differently from any other form of life-sustaining treatment. This is said to reflect “the reality in critically ill patients that it is the withdrawal of invasive or non-invasive ventilation, vasoactive medical and renal replacement therapy, and the ‘double effect’ from administration of medications to ensure patient comfort towards the end of life, that leads to the natural death of the patient, rather than cessation of CANH.” It is likely, where CANH is withdrawn from a patient who is clinically stable but suffering from a prolonged disorder of consciousness, that death will result from the withdrawal of CANH, so to this extent there is a difference between the two groups of patients. However, once CANH is seen as medical treatment, there is a parallel between the cases.
In an important passage finally dispelling what has become something of a myth that the diagnosis is all in determinations as to whether life-sustaining treatment should be continued, Lady Black made it clear that:
119. In any event, I have difficulty in accepting that there are readily apparent and watertight categories of patient, with PDOC patients clearly differentiated from, say, patients with a degenerative neurological condition or critically ill patients, in such a way as to justify judicial involvement being required for the PDOC patients but not for the others. The dilemmas facing the medical team and those close to the patient may well be very similar in each of these cases. It would be a mistake to think, for example, that the intensive care doctor simply does whatever is necessary to stop the patient dying, no matter what the cost to the patient, any more than does the doctor looking after a PDOC patient or the stroke patient or the patient with Huntington’s disease. In all of these cases, the medical team take their decisions as to treatment, whether it is CANH, or some other form of treatment such as artificial ventilation or cardio-pulmonary resuscitation or the administration of antibiotics, by determining what is in the patient’s best interests. In so doing, the doctors will often have difficult diagnoses to make, reaching a prognosis may be challenging, and the evaluation of the patient’s best interests may not be entirely straightforward. All these tasks may call for considerable professional skill and individual judgement.
Lady Black made clear that she was sceptical as to whether it would, in fact, be possible to obtain a speedy court judgment in every case, as the Official Solicitor submitted should be the case, and, moreover, that:
121. As King LJ observed in In re Briggs, quite apart from the pressure that court cases place on the overstretched resources of NHS trusts, they add greatly to the strain on families facing acutely distressing decisions. In a case where all the proper procedures have been observed and there is no doubt about what is in the best interests of the patient, there is much to be said for enabling the family and the patient to spend their last days together without the burden and distraction, and possibly expense, of court proceedings. In addition, I do not disagree with Peter Jackson J’s observation that there is a risk that the need to go to court might deflect clinicians and families from making true best interests decisions and might lead in some cases to inappropriate treatment continuing by default. Equally, it is not inconceivable that it might, as the BMA suggest, generate a reluctance, in some cases, to start CANH because of the procedures attending its withdrawal.
Although Lady Black accepted that diagnosis was not straightforward, and that developments in medical science “inevitably create new challenges of diagnosis and management, new uncertainties, for the medical profession,” she noted that the survival of patients such as Anthony Bland, then so unprecedented, “is now a well-established feature of medical practice.” Importantly, Lady Black then went on to outline how decision-making should happen:
124. […] The documentation supplied to us shows that the difficulty that there is in assessing the patient and in evaluating his or her best interests is well recognised. The process is the subject of proper professional guidance, covering vitally important matters such as the involvement in the decision-making process of a doctor with specialist knowledge of prolonged disorders of consciousness, and the obtaining of a second opinion from a senior independent clinician with no prior involvement in the patient’s care. The second opinion, as contemplated in the guidance (see paras 79 and 80 above, for example), is, in my view, a crucial part of the scrutiny that is essential for decisions of this sort, and the guidance sets parameters which should ensure that it is an effective check, in that the clinician who provides the second opinion must (so far as reasonably practical in the circumstances of the case) be external to the organisation caring for the patient, and is expected to carry out his or her own examination of the patient, consider and evaluate the medical records, review information about the patient’s best interests, and make his or her own judgement as to whether the decision to withdraw (or not to start) CANH is in the best interests of the patient. Thus the interests of patients and their families are safeguarded, as far as possible, against errors in diagnosis and evaluation, premature decisions, and local variations in practice.
125. If, at the end of the medical process, it is apparent that the way forward is finely balanced, or there is a difference of medical opinion, or a lack of agreement to a proposed course of action from those with an interest in the patient’s welfare, a court application can and should be made. As the decisions of the ECtHR underline, this possibility of approaching a court in the event of doubts as to the best interests of the patient is an essential part of the protection of human rights. The assessments, evaluations and opinions assembled as part of the medical process will then form the core of the material available to the judge, together with such further expert and other evidence as may need to be placed before the court at that stage.
Lady Black therefore concluded that:
126 […] having looked at the issue in its wider context as well as from a narrower legal perspective, I do not consider that it has been established that the common law or the ECHR, in combination or separately, give rise to the mandatory requirement, for which the Official Solicitor contends, to involve the court to decide upon the best interests of every patient with a prolonged disorder of consciousness before CANH can be withdrawn. If the provisions of the MCA 2005 are followed and the relevant guidance observed, and if there is agreement upon what is in the best interests of the patient, the patient may be treated in accordance with that agreement without application to the court. I would therefore dismiss the appeal. In so doing, however, I would emphasise that, although application to court is not necessary in every case, there will undoubtedly be cases in which an application will be required (or desirable) because of the particular circumstances that appertain, and there should be no reticence about involving the court in such cases.
Following this decision, the position is now entirely clear. Where the provisions of the MCA 2005 are followed and the relevant guidance observed, and if there is agreement upon what is in the best interests of the patient, life-sustaining treatment (whether CANH or another form of such treatment) can be withdrawn (or withheld) without needing to make an application to the court. Of course, as Lady Black observed, if at the end of the process of decision-making the way forward is finely balanced, or there is a difference of medical opinion, or a lack of agreement to a proposed course of action from those with an interest in the patient’s welfare, a court application can and should be made – so that the court can be asked to make this crucial decision on behalf of the patient. One immediate practical implication is that the joint guidance being worked on by the BMA, GMC and RCP can proceed to publication on the same basis that the interim guidance had been predicated; that guidance will set out a detailed decision-making process along the lines identified by Lady Black in her judgment.
Whilst the Supreme Court did not engage – as some had hoped it might – with the slightly Delphic observation of Lady Hale in N v ACCG that the general authority in s.5 will usually suffice to act in relation to the care and treatment of a person lacking capacity “unless the decision is so serious that the court itself has said it must be taken to court,” the same logic as set out by Lady Black in relation to life-sustaining treatment would, on its face, apply equally to other decisions that might fall to be made under the umbrella of s.5 (for instance, moving a person from their own home), with the added condition that, in many such cases, the person themselves may well be able to express wishes and feelings which should feature heavily in the mix in terms of identifying whether a court application is mandated.
One might ask whether the House of Lords in Bland that their (understandable) desire for caution merited the delay that ensued – and the return to the Supreme Court – before, in essence, it could be confirmed that a sufficient body of experience had been built up, and codified in clinical guidance, and the court could hand decision-making back to clinicians to undertake in conjunction with families. Be that it as it may, this judgment now makes the position absolutely clear.
Whilst the judgment is undoubtedly welcome at many levels, the handing back of this responsibility does carry with it the real need to ensure that the MCA is understood and applied with care and with attention to its spirit, as well as its letter, in the clinical context. The BMA/GMC/RCP guidance outlined above will undoubtedly help in the specific context of CANH withdrawal. One might also think that the decision of the Supreme Court only makes it more important that careful consideration is given by Parliament during the passage of the Mental Capacity (Amendment) Bill as to whether s.5 needs to be given the additional ‘teeth’ in relation to decisions relating to serious medical treatment that had been proposed by the Law Commission but which the Government, at least at present, does not consider to be necessary.