Boiled sweets and the boundaries of personal autonomy

The recent judgment by the Court of Appeal in R (JJ) v Spectrum Community Healthcare CIC weighs up key issues to consider where personal autonomy and choice leads to risky consequences for the individual, and for health and care professionals and organisations.

This case involved an in-mate patient (JJ) at HMP Liverpool who is quadriplegic and without teeth. Spectrum, a community interest company, provides NHS-funded healthcare services to HMP Liverpool’s prisoners. JJ wishes to choose what he eats and has the mental capacity to do so. In particular, he wants to eat boiled sweets, but because of his physical condition, he is unable to swallow properly. Doctors and Speech and Language Therapists (SALT) have assessed him as being high risk of aspiration and choking. As a result, Spectrum refused to feed him the foods of his choice. JJ understands the consequences and accepts the risks.

JJ’s case was that Spectrum’s refusal breached his Article 8 ECHR (right to respect for private and family life) human rights. The Court of Appeal upheld the decision of the High Court and rejected JJ’s case.

Personal autonomy and available options

There is a fundamental distinction between a patient choosing a less desirable treatment from a list of available treatments which the clinician presents and the patient choosing a treatment which is clinically unavailable. “A patient may only choose between the treatment options that are available to him” and a court cannot compel medical professionals to administer treatment that they believe to be adverse to a patient’s clinical needs.

Further, the autonomy of a capacitous patient can be overridden where harm to them could place the caregiver at risk of prosecution. It was considered that Care Quality Commission guidance and the Health and Safety at Work etc Act 1974 could be breached by caregivers, if they were to feed JJ boiled sweets in accordance with his wishes, but contrary to the SALT assessment.

Article 8 rights

Spectrum’s decision to refuse feeding JJ boiled sweets was found by the High Court to breach his Article 8 rights. It was also held that such interference was in accordance with the law and was proportionate. The Court of Appeal upheld this decision on the basis that the interference was for “the protection of health” and for “the protection of the rights and freedoms of others”.  The Court confirmed that even in JJ’s situation, there might be different medical circumstances where “the balance would come down in JJ’s 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.

What this means for health care professionals and providers?

• It is well established that a patient can only choose from options that are being offered and clinicians cannot be forced to offer something that is not indicated or would be adverse to a patient’s clinical needs.
• Decisions need to be evidence based – what is the evidence of risks?
• Risk cannot simply be deployed as a ‘trump card’ in the context of an expressed wish by a person to be fed in a particular way.
• Health and care professionals and providers may have a lawful basis in refusing to feed certain foods to patients who might present a feeding risk in consuming them, even if the patient has capacity to choose the food.
• In balancing such decisions, health and care organisations should consider their interests and the interests of its staff from potential criminal and regulatory prosecutions and reputational damage when acting contrary to the wishes of capacitous patients which carry the risk of death or serious injury.

It remains to be seen whether JJ will seek permission to appeal from the Supreme Court. If you’d like to discuss any of the issues raised here, please do get in touch with our health and care team.