The limits of autonomy – what happens where healthcare professionals consider the choice too risky?

R (JJ) v Spectrum Community Healthcare CIC [2023] EWCA Civ 885, a decision of the Court of Appeal handed down on 25 July 2023, raises stark issues about the limits of autonomy in healthcare decision-making.

As a result of a rare genetic condition, X-linked hypophosphatemia, JJ was quadriplegic and without teeth. While his cognitive and communication skills were unimpaired, his physical capacity was limited to pushing a button with one finger. Since 2016 he had been bed-bound and wholly dependent on care staff for all his personal care and for feeding. He was nursed in a supine position.  He was serving a lengthy determinate sentence of imprisonment.  He was cared for in the Healthcare Wing at HMP Liverpool by the staff of Spectrum Community Healthcare CIC (‘Spectrum’), a community interest company which provided NHS-funded healthcare services to prisoners.

As a result of JJ’s condition, eating food posed a risk of death or serious injury by choking or aspiration. Some foods poses a more significant risk than others. Until 2021, JJ ate a mixed diet of soft and non-soft foods. Meals would be sent to his cell and he would decide whether he was capable of eating them.  He would regularly supplement his diet with snacks brought from the prison canteen, including non-soft foods such as boiled sweets.   However, his care team became increasingly concerned at his risk of choking, and following a SALT assessment, began denying him any foods which did not fall within a so-called Level 6 diet of soft and bite-sized food.  JJ, who wanted to be able to eat boiled sweets, biscuits and crisps (referred to in the judgment cumulatively as “boiled sweets”), responded by refusing all food in protest, and challenging Spectrum’s decision by way of judicial review.  JJ had also made an advance decision to refuse treatment, confirming that food refusal was to apply even when his life is at risk and that he did not wish to be ventilated or to have cardiopulmonary antibiotics (CPR).

In October 2022, HHJ Sephton KC (‘the Judge’) dismissed JJ’s claim. JJ appealed to the Court of Appeal, which handed down judgment on 25 July 2023.

In a witness statement cited at paragraph 85 of the judgment, JJ described:

• how he has little or no quality of life. He is completely bed-bound, lying on his back for 24 hours a day, and is unable to do anything for himself other than call for help or control a television. He concludes his statement by saying that he has lost almost everything in his life and ‘being able to eat what I want represents my last shred of humanity and dignity. I want to be able to cling on to it for as long as I can’.

King LJ, with whom the Lord Chief Justice, Lord Burnett, and Lewis LJ agreed, crisply delineated the issue in the opening section of the judgment thus:

2. The issue before the court is whether a medical professional is acting lawfully in restricting the foods which are to be offered to a patient because, in their medical opinion, to do so would expose the patient to a high risk of choking and aspiration which might lead to his death.

3. Put the other way around, is a patient entitled to demand medical treatment which is not clinically indicated and therefore not offered to him by the doctor?

Having set out the background, and before turning to the grounds of appeal, King LJ made clear three contextual matters at paragraph 38:

(i) This appeal is an appeal from a decision about medical treatment or care made at first instance. It is not about prison or prisoner’s rights (see Prison Rules 1999/728 rule 24(1) Food: ‘no prisoner shall be allowed, except as authorised by a health care professional to have any food other than that ordinarily provided.’) As with all prisoners, therefore, JJ only has such choice of foods as are provided by the prison authorities.

(ii) The provision of food is treatment or care for the purposes of medical treatment decisions. Where, as here, the patient is unable to feed themselves, all food such as boiled sweets are part of treatment or care: Airedale NHS Trust v Bland [1993] AC 789 at p 858G.

(iii) This appeal raises no new points of law. The law in relation to both the common law and Article 8 of the European Convention on Human Rights (‘ECHR’) is well established and the arguments put forward on behalf of JJ relate to the proper interpretation of that law. I therefore refer only to those authorities that in my view address what I regard as the well-established legal position in relation to a patient’s autonomy in respect of their choice of medical treatment.

There were two grounds of appeal, dealt with in turn below:

Autonomy

 JJ argued that the Judge’s conclusion that the applicant’s autonomy could lawfully be overridden by Spectrum was not supported by the evidence and was contrary to established authority on the scope and extent of autonomy as a fundamental principle of common law.

King LJ rejected the first limb of this ground, holding (at paragraph 53) that

In my judgement, the judge’s decision that JJ’s ‘autonomy could lawfully be overridden’ by Spectrum was ‘supported by the evidence’ both in relation to the risk of harm to JJ and in relation to the risk of prosecution or regulatory action to the staff of Spectrum in the event that they fed JJ boiled sweets. Regardless of any prosecution or regulatory action, the death of JJ would inevitably lead to a coroner’s investigation and inquest which in itself would be both stressful and distressing for the carers involved.

En route to this conclusion, she noted at paragraph 45 that:

Guidance in relation to issues around eating is provided by the Royal College of Speech and Language Therapists ‘Eating and drinking with acknowledged risks’ and by the Royal College of Physicians ‘Supporting people who have eating and drinking difficulties’. This latter guidance was referred to by the Intervener[1] who, helpfully, drew the attention of the Court to the guidance found at ‘Box 2’ in relation to ‘Risk Feeding’ decisions. I note from reading this guidance that ‘in any ‘risk feeding’ decision, there needs to be a calibration between being risk averse, and placing carers in an impossible position in the name of patient autonomy’. This is a statement which is particularly apposite in the present case.

Turning then to what King LJ identified as the main issue in the case, namely whether Spectrum were entitled to override JJ’s capacitous decision, she noted at paragraph 55 that:

Ms Weereratne’s core submission was that this is a case about choice and that the court could not and should not have overridden JJ’s choice as to what food he eats in circumstances where he is of full capacity and understands and accepts the risk he faces of choking to death if he eats boiled sweets.

In support of this proposition, JJ’s team relied upon cases such as Ms B, relating to the refusal of treatment.  King LJ, however, considered that such cases were, in fact, of no assistance, and dealt with “a wholly different situation from that of JJ which is concerned with the provision of treatment and not the withdrawal of treatment” (paragraph 67).  Rather:

68.  The common law authorities so far considered therefore establish (i) that a patient with capacity can choose between various treatment options, which choices have to be respected by the clinicians even if the treatment chosen is not the one that was recommended by the treating team and (ii) a patient with capacity can refuse medical treatment. That then leaves the question as to whether, as advocated by Ms Weereratne, there is a common law right of autonomy which allows a patient to demand, and obliges a clinician to provide, medical treatment that is not offered to that patient by their doctors.

69. In my judgement, the answer is an unequivocal ‘No’ […]

That ‘no’ had been provided by the Court of Appeal in Burke, which JJ’s Counsel submitted:

70. […] had no application to JJ’s situation as Spectrum had said that they would feed the boiled sweets to JJ if ordered to do so. Further, she said that she would rely on the Montgomery principle to override the clinical judgment of the clinician on the basis that, as JJ is prepared to take the risk of choking and dying, the provision of boiled sweets is lawful given that Spectrum would be complying with JJ’s properly informed food choices.

This did not convince King LJ:

72. A party to proceedings confirming that they will comply with a court order or the terms of a declaration does not, in my view, serve to convert Spectrum’s position from that of a refusal to give JJ boiled sweets because it is unsafe to do so and is therefore ‘off the table’ as a treatment option which can be chosen by JJ, to being one of merely ‘ill advised’ and an option capable of being chosen by JJ in line with the Montgomery principles. Neither, contrary to Ms Weereratne’s submission does the fact that Spectrum have taken the precaution of identifying staff who would be willing to carry out a court order to give JJ boiled sweets in the event that a declaration were made, serve to create an option which JJ can choose.

Therefore, and following Burke in circumstances where “as here, Spectrum has concluded, in the light of the SALT assessments and the evidence of Dr Thomas [the associate medical director of Spectrum], that the treatment sought by JJ is not clinically indicated, then they are not legally obliged to provide it and the judge was right to find that to be the case” (paragraph 73).   Importantly, further, on the way to this conclusion King LJ noted (at paragraph 62) that the decision of the Supreme Court in McCulloch & Others v Forth Valley Health Board [2023] UKSC 26 – handed down between the hearing and the delivery of judgment in JJ “confirm[ed] that the determination of what are reasonable treatments to offer is a matter of professional skill and judgment on the part of the doctor offering those treatments.”

Article 8 ECHR

JJ also appealed on the basis that the Judge erred in concluding that Spectrum’s interference with his Article 8 ECHR rights was in accordance with the law and proportionate, and hence justified under Article 8(2) ECHR.

As King LJ identified, it was common ground that JJ’s Article 8 right to respect for private life was engaged and that Spectrum’s refusal to provide him with boiled sweets was an interference with that right. That therefore left consideration as to whether the conduct of Spectrum was in ‘accordance with the law’, was for a permitted reason under Article 8 and whether it satisfied the test of proportionality.

JJ’s first argument was that the common law authorities (including Burke) did not satisfy the requirement that the law be clear, foreseeable and adequately accessible.  Only legislation or formal governmental policy would satisfy the test, he argued.

King LJ dismissed this argument crisply, noting that it was “well established” that the common law sufficed for the purposes of the ‘accordance with the law’ requirement of Article 8(2), and (at paragraph 79):

In my judgement, the analysis of Lord Philips at para.[50] in Burke clearly contains “sufficient precision to enable the citizen to regulate his conduct”, even if it is not absolutely prescriptive in all situations. In any event, the provisions of the CQC regulations provide regulations dealing with the situation in which care and treatment are provided.

It was also submitted on JJ’s behalf that the Judge erred in his approach to proportionality by failing to consider less intrusive measures, in particular by moving JJ from a supine position and (ii) that the interference was not necessary to protect the professional autonomy of the clinicians in circumstances where Spectrum had indicated that it would feed JJ if the court declared it was lawful to do so.

In relation to the first of these limbs, King LJ noted that the issue of JJ being fed in a less supine position was not before the Judge and that not only did the Judge not have any evidence in relation to the issue, but that JJ had declined to have the physiotherapy assessment on offer which was specifically aimed at discovering if he could be nursed in a more elevated position.  King LJ rejected the second limb for essentially the same reasons as she dismissed the argument as developed in relation to the first ground of appeal, and made clear that she considered that the Judge “had conducted an exemplary and concise proportionality analysis” (paragraph 83).

Concluding observations

King LJ made clear that:

86. One can fully understand the dire situation in which JJ finds himself and a view that says that if JJ understands and is happy to take the risk of choking for the modest pleasure of eating a boiled sweet, then that is a matter for him. It may be that in certain different medical circumstances the balance would come down in JJ’s favour but not, in my view, in this case. JJ cannot feed himself. He cannot obtain boiled sweets from the prison shop, unwrap them and put them in his own mouth. The provision of boiled sweets in circumstances where JJ cannot even put a sweet into his mouth is different; it is treatment or care carrying with it the considerable risk that on any given day, giving JJ that boiled sweet may cause him to choke to death and in circumstances where JJs advance decision would prevent all but the most basic life-saving intervention on the part of the person who had given him the boiled sweet.

87. In my judgement the judge was right having considered the well-established authorities, to conclude that it was lawful for Spectrum to refuse to provide JJ with boiled sweets in those circumstances, and that had they done so and JJ had choked to death or suffered serious harm as a consequence of aspiration, they were at a more than fanciful risk of prosecution under regulation 12 CQC or in the criminal courts for gross negligence manslaughter.

Comment

In some ways, it is surprising that the issue raised in JJ’s case has not been the subject of appellate level consideration before, as – whilst JJ’s case is particularly stark – it is a situation which is not in fact that uncommon.  Despite the sustained efforts of his legal team to frame it as a pure question of choice, the Court of Appeal were very clear that it was not as simple as that, because it was a choice which had consequences for others.  Viewed through that prism, it flowed essentially inexorably that if those upon whom the consequences were to be visited could not properly countenance them that the appeal would fail (although it should be noted that it remains possible that JJ will seek permission to appeal from the Supreme Court).

More broadly, the judgment is important for implicitly endorsing the guidance of both the Royal College of Physicians and the Royal College of Speech and Language Therapists as to how to navigate the dilemmas that arise.  But, equally broadly, and in line with that guidance, it is important to be clear that the judgment is not saying that risk can simply be deployed as a ‘trump card’ in the context of an expressed wish by a person to be fed in a particular way.  As King LJ made clear, even in JJ’s situation, there might be circumstances in which the balance would come down in his favour – and in any other situation, a decision that a person is not be fed in the way that they wish must be based upon very clear evidence.

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[1] The Royal College of Physicians, on whose behalf I acted.