Does the right to autonomy include a right to…

The unusual facts

JJ is a serving prisoner, who as a result of a rare genetic condition is quadriplegic and without teeth. His cognitive and communication skills are unimpaired, and there was no dispute that he had capacity to choose his diet. However, due to his physical disability he is wholly dependent on care staff for personal care and, as relevant here, feeding.

He wanted to be fed solid foods in the form of boiled sweets, biscuits and crisps by carers. Indeed, he considered that given his disabilities, being able to eat what he wanted represented his “last shred of humanity and dignity”. There was no issue that, as here, where a patient is unable to feed themselves all foods form part of their medical treatment.

The prison healthcare provider Spectrum Community Health CIC became concerned by JJ’s consumption of such solid foods as giving rise to a risk of choking and aspiration. It arranged a speech and language therapy (SLT) assessment which considered that boiled sweets were “high risk” although it noted that he accepted this risk. Due to the difficulty in dealing with a choking episode due to the position in which JJ was being fed, Spectrum considered there was a “considerable risk of dying if he is provided with solid foodstuffs”.

Given this evidence, a significant concern for Spectrum was the possibility of prosecution or regulatory action being taken against it or its staff. It cited possible action arising pursuant to the professional obligations of medical staff, the conditions of CQC registration which requires care and treatment to be provided in a “safe way”, the Health and Safety at Work etc Act 1974 and gross negligence manslaughter.

The judgment

JJ pitched the case as one about “choice” and asserted Spectrum was not permitted to override his choice of food. The Court rejected this submission. Whilst it noted the right of a patient to choose medical treatments proposed to them, it held a patient cannot compel a medical treatment option which is not proposed:

“56. It is trite law that any person with capacity has the right to choose which medical treatment proposed to him by a treating medical practitioner to receive or to refuse. The question on this appeal is whether, when a patient wishes to choose treatment that is not clinically recommended and therefore not offered, that patient can nevertheless require the clinician to provide the treatment in question.

57. In my judgement, the law is clear: a clinician cannot be so compelled. A patient may only choose between the treatment options that are available to him, although as between those available options he or she may choose one which the clinician believes to be the least appropriate or even positively ill advised.”

Applying that to the facts of the case, the Court went on to find:

“73. …Where, as here, Spectrum has concluded, in the light of the SALT assessments and the evidence of Dr Thomas, 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.”

JJ also relied upon his Article 8 right to assert Spectrum was legally obliged to feed him solid food. The Court rejected the argument that the interference with his right was in accordance with the law, considering that authorities on this point (R (Burke) v GMC [2005] EWCA Civ 1003) contained sufficient precision. Further, the Court approved the first instance judge’s assessment of proportionality. The Judge had concluded the course taken was for the protection of health and for the protection of the rights of others, and such was justified.

Comment

The judgment of the Court of Appeal makes clear that a patient cannot demand treatments of their choosing. That principle often arises in more obvious ways, such as where a treatment sought is experimental, or a drug is requested that is too expensive. However, it also arises where a treatment is not clinically indicated.

The Royal College of Physicians intervened in the case on the basis that “whilst the facts of JJ’s case…are stark, they are not entirely unusual”. It noted there is often a dilemma where a person with the relevant decision making capacity expresses a clear preference for what they wish to eat and drink, but that preference gives rise to a risk.

In such cases, it will be a clinical judgment as to what is or is not clinically indicated and therefore offered as an available treatment. Guidance exists on this in the context of feeding from the Royal College of Speech and Language Therapists (‘Eating and drinking with acknowledged risks’) and the Royal College of Physicians (‘Supporting people who have eating and drinking difficulties’) which were cited by the Court. However, where the clinician decides a treatment is not clinically indicated, then it is not a treatment that a patient can demand. The Court’s approach respects and defers to clinical judgment exercised.

Leon Glenister acted for the successful Respondents.