Introduction
“Right-to-die cases do not need to go to court, judge rules” or “Judge changes rule on ending life support for terminally-ill” were typical of some of the inaccurate headlines which greeted the recent and important judgment of Peter Jackson J in M (by her litigation friend Mrs B) v A Hospital [2017] EWCOP 19.
The application to the Court of Protection had nothing to do with the so-called “right-to-die”, where a capacitous individual seeks medical intervention to end an intolerable life. Nor did it relate to the withdrawal of treatment for a patient who was ‘actively’ dying. Rather, it involved an application for a declaration that it was lawful to withdraw clinically assisted nutrition and hydration (‘CANH’) from a clinically stable 50-year-old patient with minimal awareness of herself or her surroundings due to neurological deterioration caused by Huntington’s disease. Tragic as they were, the facts of the case and the remedy sought were not unusual for serious medical treatment applications before the Court of Protection.
The real significance of the decision lies in the fact that, having received competing submissions on the issue, and despite expressing his decision to be on the facts of the case, Peter Jackson J determined that there is no legal obligation to seek authorisation from the Court before withdrawing CANH in PVS or MCS cases provided that: (judgment, §36-38)
- the clinicians act in accordance with prevailing professional guidance, currently the GMC’s Good Medical Practice guidance, the BMA guidance ‘Withholding and Withdrawing Life-prolonging Medical Treatment’ and ‘End of Life Care’, and the Royal College of Physicians’ Guidance on Prolonged Disorders of Consciousness;
- structured medical assessment has been undertaken;
- an expert second opinion has been obtained;
- the principles in the MCA are applied; and
- all concerned agree that the continuation of such treatment is no longer in P’s best interests.
Notwithstanding this, we suggest that if withdrawal of CANH is proposed in a PVS or MCS patient who is not ‘actively’ dying, an extremely cautious approach should be taken to dispensing with the need for a Court application.
Background
Not to make an application to Court to authorise the withdrawal of CANH from a patient in PVS or MCS would represent a clear departure from practice established since the decision in Airedale NHS Trust v Bland [1993] AC 789.
There are estimated to be between 4,000 and 16,000 patients in the UK in a vegetative state (“VS”), and many more in a minimally conscious state (“MCS”)[1]. Despite the requirement for judicial authorisation before CANH is withdrawn from patients with a disorder of consciousness who are otherwise stable, there have been very few applications to Court. The Official Solicitor, who is appointed as P’s litigation friend in the vast majority of these cases knows of only 24 applications brought since 2010 for the withdrawal of CANH in people with a prolonged disorder of consciousness.
The reasons for the dearth of applications are multi-factorial and complex. Experience suggests that many clinicians are unaware that once a diagnosis of PVS has been made, authority suggests that continuation of CANH is theoretically unlawful[2]. Clinicians may shy away from discussion about ending the life of a stable patient, and are not always properly supported by legal advice from their employer or the commissioning body, so some cases drift without a proper analysis of best interests. Family members may have unrealistic hopes of recovery, and may be intimidated by the legal process itself, especially because for many people, to make or even support an application suggests a desire to bring about the death of someone loved. Cases have taken too long in the past, which may itself be a deterrent. So too are the costs involved, both for hard-pressed funders and particularly family members who – indefensibly – are rarely able to obtain public funding for cases of this nature.
The justification for mandatory Court authorisation of withdrawal of CANH in cases of this nature began with Airedale NHS Trust v Bland, where three of their Lordships stated that the protection of patients and the reassurance of the public made it desirable that until a body of experience and practice had built up, an application should be made to the Family Division in any case where it was considered by the clinicians in charge of a PVS patient that continued treatment and care no longer confer any benefit. A careful reading of the speeches indicates that the House considered that the Court should also be approached in cases where P is in a MCS and therefore has greater awareness, where the conventional best interest analysis was said to apply.
The MCA did not change the requirement to make an application.
Professionals are under a statutory duty to have regard to the MCA Code of Practice[3], and the Court is required to take account of its provisions if relevant to a question in civil proceedings. Despite dicta in R (Burke) v GMC [2006] QB 273 to the effect that the obligation to obtain prior judicial sanction before withdrawing CANH was not a matter of law but a matter of practice, paragraphs 6.18 and 8.18 to 8.19 of the MCA Code of Practice explicitly provide that some treatment decisions are so serious that they must be taken by the Court; this includes decisions about the proposed withholding or withdrawal of artificial nutrition and hydration from patients in PVS.
Paragraph 5 of Court of Protection Practice Direction 9E (made under the power in r.71 of the CoP Rules) is unequivocal in its terms, and states that:
“Cases involving any of the following decisions should be regarded as serious medical treatment for the purpose of the Rules and this practice direction, and should be brought to the court … (a) decisions about the proposed withholding or withdrawal of artificial nutrition and hydration from a person in a permanent vegetative state or a minimally conscious state … ”[4]
Briggs
The decision in M v A Hospital followed hot on the heels of the decision of the Court of Appeal on 31 July 2017 in Re Briggs[5] allowing the appeal against Charles J’s ruling that a dispute as to whether withdrawal of CANH was in the best interests of a patient in MCS could be brought as a DOLS challenge under s.21A MCA. In passages which were clearly obiter dicta, Eleanor King LJ stated that:
“26. To suggest that every case should go before a judge (even where all concerned are in accord as to what was in the best interests of the patient) would not only be an unnecessary pressure on the overstretched resources of the NHS Trusts and add to the burden on the courts but, most importantly, would greatly add to the strain on the families having to face these unimaginably distressing decisions. In my judgment, the Practice Direction provides valuable procedural guidance but should not be interpreted as introducing a requirement that all cases where a decision is to be made about the withdrawal of CANH must come before a court.”
and
“108. (i) If the medical treatment proposed is not in dispute, then, regardless of whether it involves the withdrawal of treatment from a person who is minimally conscious or in a persistent vegetative state, it is a decision as to what treatment is in P’s best interests and can be taken by the treating doctors who then have immunity pursuant to section 5 MCA. … (ii) If there is a dispute in relation to medical treatment of an incapacitated person, and, specifically, where there is a doubt as to whether CANH should be withdrawn, then the matter should be referred to the court for a personal welfare determination under sections 15-17 MCA.”
Peter Jackson J’s decision in M v A Hospital therefore follows a judicial direction of travel away from the need to make applications in PVS/MCS cases as a matter of course.
The status of paragraphs 36-38 in Peter Jackson J’s judgment
Can M v A Hospital be treated as determinative of the issue of whether an application to Court is required in an otherwise stable patient with PVS or MCS when the criteria identified by Peter Jackson J apply? That question can only be answered by understanding the unusual procedural history of the application itself.
M began to show signs of her Huntington’s disease in childhood. It is a devastating inherited neurological condition which is progressive, incurable and ultimately fatal. While she was living at home, her husband was her main carer. In 1994, she became permanently resident in the respondent hospital, where her mother, Mrs B, and other family members visited regularly. By 2003, she was no longer able to go out and was dependent on CANH. She was fully bedridden for the last 10 years of her life. All family members were clear that M was unconscious for most of the time and showed no awareness of her surroundings; they considered that she had no quality of life, in complete contrast to the bright and energetic person she had been before the ravages of her illness. Neither M’s husband nor her mother recalled any specific discussions with M over her end of life care, but both were clear that she was the sort of person who would not wish treatment to continue once it was no longer benefiting her, and when her life was being prolonged for no useful purpose.
The medical evidence came from M’s previous and current responsible clinicians and an external second opinion from a specialist in the clinical care of patients with Huntington’s disease at UCL Institute of Neurology, Queen Square, London. The clinicians agreed that M was not comatose, and probably retained some general awareness of her situation as well experiencing discomfort. There was complete consensus between the responsible clinicians, the specialist second opinion, the multidisciplinary team including the clinical nurse leader, the social worker and consultant clinical psychologist that on balance it was in M’s interests that treatment should be withdrawn.
In December 2016, the Hospital instructed solicitors, who discussed the issues involved with the Official Solicitor. In February 2017, Mrs B consulted solicitors. Emergency legal aid was granted to M for a s.21A DOLS application (before that avenue was closed by the Court of Appeal in Briggs). Proceedings were issued by Mrs B as M’s litigation friend, with the Hospital as the respondent. Directions were made on paper by Pauffley J on 17 May 2017, a directions hearing was held by Peter Jackson J on 25 May 2017, and the application proceeded to a final hearing on 22 June 2017.
As Peter Jackson J described (§1 and §29), the applicant had explicitly questioned whether proceedings were necessary in her submissions when the application was made. She submitted that there was no legal duty, nor was it a requirement of good practice, to bring to court a decision to withhold life sustaining treatment where the treating doctors, a second opinion doctor and the family agreed that CANH was not in P’s best interests. It was suggested that doctors would follow the MCA and their professional guidelines, and that would provide sufficient protection to P. The applicant essentially sought a determination from the court, “if required”, that it would be in M’s best interests not to continue to receive CANH, with the consequence that she would die. Written submissions filed on behalf of M at the final hearing on 22 June 2017 maintained her stance in relation to the necessity of the proceedings, a position with which the respondent Hospital largely agreed.
The necessity of making an application to the Court in relation to the lawfulness of withdrawing CANH was therefore clearly put in issue in the proceedings, but without any party opposing the applicant’s case that no application was in fact required.
At the final hearing in June, Peter Jackson J determined the substantive application before him by making the orders requested, and gave short reasons with a fuller judgment reserved. As the latter judgment[6] makes clear, the judge unhesitatingly accepted the evidence of the family and the clinicians, finding that they had reached their positions after the most careful thought, placed M at the centre of their concern, and concluded that she would not have wanted to go on living like as she was, nor to endure the inevitable decline of her terminal condition.
On 24 July, CANH was withdrawn from M, who then received palliative care, and on 04 August 2017, she died.
In the meantime, given the Official Solicitor’s general interest in the issue and his previous involvement in the pre-proceedings stages, the judge invited observations from him on the issue of whether court proceedings were required in this case or more generally where there is no dispute as to best interests. The Official Solicitor responded to the judge’s invitation, filing substantial written submissions on 01 August 2017.
In his submissions, the Official Solicitor noted that he was not a party to the application, and that as an application had been made to the Court, the question of the necessity of the proceedings was academic. He submitted that whilst he would welcome an authoritative answer as to whether there was a continuing requirement to bring all CANH withdrawal cases to Court, his primary position was that any decision on this latter point should be made either by Parliament or at appellate level after full argument in a case where the issue was live. He discouraged the judge from determining the issue in the manner the applicant sought, “which can only lead to further obiter comments that are made absent a true lis, without full argument and where there is no basis for appeal.”
Notwithstanding those caveats, for the reasons summarised in §34 of Peter Jackson J’s judgment, the Official Solicitor made detailed submissions to the effect that all cases where it was proposed to withdraw CANH from an MCS or PVS patient should be brought to Court. The applicant filed written submissions in response on 04 August 2017 and the judge then went on to determine the issue of whether proceedings had been required without oral argument.
In his reserved judgment, Peter Jackson J accepted that it would be inappropriate for the Court “to comment gratuitously” on an issue of the importance of the necessity of proceedings (§36). He did not accept that he was doing so, saying that as the questions had been raised and argued, “It is not good enough for the court to say that, because proceedings have in fact been issued and determined, the question of whether they were necessary in the first place has thereby become moot.” (§36).
That is not to say, however, that his decision on the issue was part of the ratio decidendi of the case. One course open to him at the final hearing on 22 June 2017 was to determine the necessity of the application as a preliminary issue. Had he concluded that an application was not necessary, he could then have declined to make any determination as to M’s capacity or best interests at all, and refused to make consequential declarations or orders under ss.15-16 MCA. If he had adopted that approach and concluded that it was not necessary as a matter of law for this case to have been brought to Court for the reasons set out in §28-38 of his judgment of 20 September 2017, there is no doubt that his reasoning would have been necessary step in his decision, and therefore part of the ratio of the case: see R (Smith) v Oxfordshire Assistant Deputy Coroner [2011] 1 AC 1, §135.
What has been described in some quarters as a “landmark decision” about the necessity of applying to Court for withdrawal of CANH in PVS or MCS cases is therefore in reality obiter dicta and no more.
Although Peter Jackson J recognised (§36) that his decision had to be seen in light of the facts that he not heard oral argument and that the Official Solicitor had not been formally involved in the proceedings, his conclusions were made with the benefit of extensive submissions and are closely reasoned. Some obiter dicta are given more weight than others: as Megarry J stated in Brunner v Greenslade [1971] Ch 993, 1002H: “A mere passing remark, or a statement or assumption on some matter that has not been argued, is one thing; a considered judgment on a point fully argued is another, especially where, had the facts been otherwise, it would have formed part of the ratio. Such judicial dicta, standing in authority somewhere between a ratio decidendi and an obiter dictum, seem to me to have a weight nearer to the former than the latter.”
If the issue of whether proposed withdrawal of CANH required Court authorisation were to be litigated in a live case again, a judge would doubtless afford considerable respect to the decision in M v A Hospital and require very persuasive arguments as to why Peter Jackson J’s reasoning in §36-38 was wrong before departing from it.
It remains to be seen whether the Official Solicitor will appeal the decision.
Contrasting views on the merits of the decision
For
Many will welcome Peter Jackson J’s decision and agree with a fundamental plank in his reasoning, that to treat PVS and MCS cases differently from other serious medical treatment cases involving up to and including the withholding and withdrawal of life-support is anomalous. Removal of the delays in decision-making that the Court process can involve, and the additional stress involved to all concerned, will be welcomed[7].
The decision is also in line with the greater emphasis rightly placed by the courts in recent years on the factors set out in s.4(6) MCA: P’s past and present wishes and feelings, the beliefs and values that would be likely to influence his decision if he had capacity, and the other factors that he would be likely to consider if he were able to do so (see cases such as Aintree University Hospitals Foundation NHS Trust v James[8] or Wye Valley NHS Trust v B[9]). This is because the removal of any requirement to bring an application allows discussions to take place which centre round the decision P himself would have made, so far as this can be ascertained, potentially placing less emphasis on the formal diagnosis.
Against
Some may feel that the judge did not grapple with the relevance of the MCA Code of Practice, and paragraph 6.18 of the statutory Code of Practice which specifically identifies the seriousness of the decision to withdraw CANH from a PVS patient as a reason why Court authorisation is mandated. Baroness Hale DJSC echoed this theme in N v ACCG[10], suggesting that the seriousness of some treatment decisions would make reliance on s.5 MCA insufficient.
Neither did Peter Jackson J address one of the Official Solicitor’s central arguments ‘head-on’ and in detail, namely that the risk of misdiagnosis of PVS/MCS remains so high, that without a mandatory independent second opinion, P’s Art.2 ECHR rights would be infringed without the safeguard of judicial scrutiny of any proposal to withdraw CANH in cases of this nature. In support of this, the Official Solicitor contended that the current professional guidance, which is not binding, was not robust enough to meet the requirement derived from Lambert and others v France[11] for a formally prescribed procedure involving independent review of any decision for withdrawal of CANH.
The Official Solicitor drew the Court’s attention to 24 cases that were known to him brought since 2010 where withdrawal of CANH from a person suffering with a disorder of consciousness was proposed. In 8 out of 20 cases (40%) where a purported diagnosis of PVS was given at the outset of the proceedings that diagnosis was found to be incorrect. That figure of 40% is in keeping with the often-quoted research figure for misdiagnosis of PVS[12]. Of those 8 cases of misdiagnosis, 7 had been brought since the publication of the PDOC National Clinical Guidelines in 2013, the most authoritative professional guidance on the subject. CANH was continued in 5 of those 8 cases, contrary to the initial application. Most worryingly, in 3 out of the 24 cases (12.5%) despite agreement pre-issue between the family and the doctors that CANH should be withdrawn, the outcome of the court case was that CANH was continued.
Thus, some will feel that there is an added risk that treatment will be withdrawn in circumstances where forensic scrutiny by the Court would result in a different outcome.
Potential difficulties with an appeal
Whatever its merits, the Official Solicitor is likely to face procedural difficulties in appealing Peter Jackson J’s decision.
The fact that the Official Solicitor was not a party to the application is not of itself a bar (see George Wimpey UK Ltd v Tewkesbury Borough Council[13], but he would have to show that he was adversely affected by the decision, a matter which may be open to some debate given that his interest in any particular case is dependent upon his appointment as P’s litigation friend.
More fundamental may be the fact that the Court of Appeal will not entertain an appeal where the lower court was itself engaged on a determination of hypothetical or academic issues: see In re X (Deprivation of Liberty)[14]. An appeal against obiter dicta is at risk of falling foul of this doctrine.
What reliance can therefore be placed on the decision in M v A Hospital?
There are cases involving patients with a prolonged disorder of consciousness where applications are either before the Court already, or where the Official Solicitor has been notified pre-proceedings. Permission is, of course, required to withdraw an existing application: CoP r.87A. The necessity of an application authorising withdrawal of CANH provided to a PVS or MCS patient may well receive further judicial consideration.
In the meantime, given its status, to what extent can clinicians, their employing bodies and family members safely rely upon the decision in M v A Hospital in practice?
Absent a contrary decision from another High Court judge, or any higher court having the opportunity to consider the issue at appellate level, the decision in M v A Hospital will remain persuasive authority.
Section 5 MCA provides a defence in relation to acts in connection with care or treatment in certain circumstances:
(1) If a person (“D”) does an act in connection with the care or treatment of another person (“P”), the act is one to which this section applies if—
(a) before doing the act, D takes reasonable steps to establish whether P lacks capacity in relation to the matter in question, and
(b) when doing the act, D reasonably believes—
(i) that P lacks capacity in relation to the matter, and
(ii) that it will be in P’s best interests for the act to be done.
(2) D does not incur any liability in relation to the act that he would not have incurred if P –
(a) had had capacity to consent in relation to the matter, and
(b) had consented to D’s doing the act.
(3) Nothing in this section excludes a person’s civil liability for loss or damage, or his criminal liability, resulting from his negligence in doing the act.
Provided that the criteria set out by Peter Jackson J are met, the clinicians will have taken reasonable steps to establish the lack of capacity, will reasonably believe that P lacks that capacity, and will reasonably believe that it will be in P’s best interests to withdraw CANH. It would be difficult to argue that they were negligent in not seeking Court sanction given the obiter dicta in Briggs and M v A Hospital. On its face, therefore, they will be entitled to the protection of s.5 MCA against any liability. The reality, of course, is that if the family unanimously support the withdrawal of CANH as being in P’s best interests, litigation about the decision is not a realistic possibility.
An extremely low threshold for a Court application remains appropriate
There will undoubtedly be a view that removal of Court scrutiny of withdrawal of CANH from all PVS/MCS cases will diminish a valuable protection for the incapacitated individual with a prolonged disorder of consciousness. Errors in the diagnosis are common (see above). Experience shows that common problems which contribute to the high rate of misdiagnosis include: (1) reaching a diagnosis too soon (in a case of PVS, earlier than 6 months for non-traumatic and 12 months for traumatic brain injury, and in MCS earlier than 3-5 years after onset); (2) not following RCP guidelines; (3) not using expert consultants / assessors; (4) not optimising the circumstances of the assessment e.g. by failing to withdraw sedative drugs; and (5) not taking account of all evidence (care records, family observations).
Cases also undoubtedly arise where the clinical team fail to make adequate enquiry about P’s wishes, feelings, beliefs and values. A lack of rigour in the evidence-gathering risks silencing the voice of P himself, who is meant to be at the centre of the proceedings, or substituting the wishes and feelings of the family for those of P.
Cases have also been known where family members who agreed with the doctors that treatment should be withdrawn have failed to disclose the existence of dissenting family members. Furthermore, as Baker J recognised in “A matter of life and death”[15], family witnesses have “inevitably imperfect recollections of what was said and very probably have their own views and opinions that may consciously or unconsciously influence their account of what was said by P…”
Such errors would lead not only to decisions about the withdrawal of CANH which are contrary to P’s best-interests, but would also risk depriving clinicians of the protection which s.5 MCA would otherwise offer against civil or criminal liability.
Whilst Eleanor King LJ suggested in Briggs that an application to Court should be made where there was a dispute or where there was “a doubt” as to whether CANH should be withdrawn (§108), Peter Jackson J was more liberal in his opinion over when an application could be made. Having recognised that his decision related to “the facts of this case” (§37) and that “…every case is intensely fact-specific” importantly, he went on to state that “those considering withdrawal of CANH should not hesitate to approach the Court of Protection in any case in which it seems to them to be right to do so.” (§38).
For all the reasons set out above, we suggest that clinicians and those responsible for their actions will be very well advised to adopt an extremely cautious approach to dispensing with the need for a Court application if withdrawal of CANH is proposed in a PVS or MCS patient. It is only if it can be demonstrated robustly that the case unquestionably falls within the criteria identified by Peter Jackson J that the team should contemplate withdrawal of CANH without the prior sanction of the Court. Any doubts whatsoever over the clinical diagnosis, the prognosis, what P’s own views would have been, or whether all relevant family members agree that withdrawal is in P’s best interest should be resolved by making the application for Court authorisation of the withdrawal of CANH. Not only is the scrutiny involved likely to reduce any risk to P, it will give added protection to the treating team.
The relief that is commonly sought is a declaration under s.15 MCA as to the lawfulness of the proposed course of action. It was common ground in the written submissions before Peter Jackson J that declaration is a formal statement of the legal position, rather than being something that ‘makes’ the legal position what it is: see R (Burke) v GMC[16], Re M (Incapacitated Adult) (Best Interests Declaration: Potential Contempt)[17]. Thus, it could be thought, if the withdrawal of treatment of CANH from a patient in PVS in lawful in accordance with the principles in ss.1-5 MCA, obtaining declaratory relief to that effect would add nothing. That, however, would be a mistake. The function of the Court of Protection is to take, on behalf of adults who lack capacity, the decisions which, if they had capacity, they would take themselves. The Court has, in addition to the declaratory jurisdiction referred to in s.15 MCA, the more extensive powers conferred by s.16. Those powers can include an order consenting to the withdrawal treatment on behalf of P: s.16(2). Such an order goes further than a declaration: where P is capacitous it is his withdrawal of consent to the continuation of CANH which makes its withdrawal lawful, and conversely its continued provision an unlawful assault; in the same way, it is the proxy consent given by the Court under s.16 which will have the same effect, rendering lawful what would otherwise be unlawful: see N v ACCG per Lady Hale at §28[18].
As such, an application to Court for authorisation for withdrawal of CANH from a PVS/MCS patient remains capable not only of securing additional protection for P, but of giving the clinicians and their employer ‘legal protection’ in relation to a course of action which results in P’s death.
The importance of each of those factors should not be dismissed.
Footnotes
[1] Parliamentary Office of Science and Technology Briefing Paper No.489, March 2015.
[2] Airedale NHS Trust v Bland [1993] AC 789 at 883; although we consider that position is irreconcilable with the provisions of the MCA, the decision of the Supreme Court in Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, and the decision of the European Court of Human Rights in Lambert & Ors v France (2015) Application No.46043/14.
[3] See s.42(4) and (5) MCA respectively.
[4] The Code of Practice is silent in relation to MCS.
[5] [2017] EWCA Civ 1169.
[6] Given on 20 September 2017.
[7] See, e.g. Professor Derick Wade, “Back to the bedside? Making clinical decisions in patients with prolonged unconsciousness”, The Journal of Medical Ethics Vol 43: July 2017; 439.
[8] [2014] AC 591.
[9] [2015] EWCOP 6.
[10] [2017] UKSC 22, §38.
[11] (2015) ECHR (Appn 46043/14).
[12] See Keith Andrews: ‘Misdiagnosis of the vegetative state: retrospective study in a rehabilitation unit’ (1996) British Medical Journal, p 313 and Cruse D. et al. (2011); ‘Bedside detection of awareness in the vegetative state: a cohort study’. The Lancet. 378: 2088–2094.
[13] [2008] 1 WLR 1649.
[14] [2016] 1 WLR 227.
[15] The Journal of Medical Ethics Vol 43: July 2017 427 at 432
[16] [2006] QB 273, §71.
[17] [2015] Fam 239, §50.
[18] [2017] AC 549.