An unsafe swallow

An update from a regular series written by Mr Robert Wheeler, director, department of clinical law, where he considers various aspects of clinical law that our nursing and medical staff rely on when caring for patients.

It is not unusual for a clinician specialising in speech and language therapy (SALT) to be referred a person whose swallow may be ‘unsafe’; whereby liquid or other food may inadvertently enter the airway, usually because of neurological pathology. Clinicians in the hospital wing of a prison had been looking after a prisoner with X-linked hypophosphatemia, named JJ in court. He was quadriplegic, and had no teeth. His mental capacity to make clinical decisions was not affected. But his physical ability was restricted to the use of a single finger, with which to push a button. There was no prospect whatsoever of him feeding himself. He was wholly dependent on the staff for all of his personal care, including his feeding. He was nursed supine.

As a direct consequence of JJ’s quadriplegia (and supine position), choking on or aspiration of food placed in his mouth was foreseeable. During the previous seven years in custody at least four episodes of choking were recorded. Despite this risk, JJ continued to demand, but the prison authorities were refusing to administer, boiled sweets.

The issue for the court was whether this refusal was unlawful.

JJ was prepared to accept the responsibility for his decision to eat these sweets, but the prison staff were greatly concerned that placing a boiled sweet in his mouth could lead to his death; and that their complicity might lead to a charge of manslaughter. The risk of death was heightened by JJ’s Advance Decision to Refuse lifesaving treatment (ADRT), including cardiopulmonary resuscitation, or ventilation.

It is for these reasons that the local SALT team advised against providing him with boiled sweets.

JJ took a different view; his evidence to the court was that he had little or no quality of life; being completely bed-bound, lying on his back 24 hours a day, unable to do anything for himself other than call for help or control a television. In his statement, JJ concluded that ‘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’. The court found that the clinicians had suggested all the proportionate adjustments to reduce the risk that JJ might run by eating boiled sweets, including proposing a physiotherapy assessment to discover whether JJ might be nursed in a more upright position. He declined this assessment.

Recognising that both JJ’s right to respect to his private life was engaged, and his ‘dire situation’; the court accepted that on one view, ‘…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’. However, JJ could neither buy sweets from the prison shop, unwrap them, nor put them in his own mouth. So the provision of sweets in his case was different, equating to a ‘…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 the circumstance where JJ’s 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’.

The judge recognised that in different circumstances, the court might find otherwise. These circumstances might envisage a patient with an unsafe swallow who had not taken out an ADRT that excluded resuscitation; who was able to lift a cup of fluid to her lips if it was merely handed to her by a therapist or nurse; and who was able to sit upright, reducing the risk of aspiration.

But on JJ’s facts, it was lawful to refuse to provide him with boiled sweets. Had such sweets been placed in his mouth, and death or serious harm had followed, there was more than a fanciful risk of prosecution of whoever had fed him.

In hospital practice outside a prison, the same principle applies. If, in the light of any clinical assessment, a patient seeks a treatment which is not clinically indicated, there is no obligation to provide that treatment. But a second opinion should be offered. This is as relevant to a speech and language assessment as it is to any other clinical evaluation.

Re JJ [2023] EWCA Civ 885

Mr Robert Wheeler
Department of clinical law
June 2024