This case concerned an application brought by NHS Surrey Integrated Care Board (ICB). It sought a declaration pursuant to section 26(4) of the Mental Capacity Act 2005 (MCA) that the advance decision made by an individual, JH, was valid and applicable to any invasive test or treatment it might otherwise offer. In this way, the NHS Trust would not be accountable for a decision, based on this document, not to treat JH, including life-sustaining treatment, if he were to lose capacity through his physical deterioration.
JH was a man who suffered from lifelong gastrointestinal problems, Asperger’s Syndrome and growth deficit. In December 2017, he had produced an advance decision which set out in great detail what he would tolerate with regards to his future care. Notably, he was deeply resistant to any form of invasive medical treatment. This stemmed from his past trauma of spending a great deal of his childhood attending hospital and being subjected to extensive investigations that necessitated incessant hospital involvement, and left him profoundly anxious and entirely unprepared to attend hospital. JH had, therefore, declined virtually all forms of health monitoring, which left his life at great risk, particularly because he had refused both the COVID-19 and flu vaccinations. This question had become even more critically related to risk and welfare consequences, as JH was now noticeably and visibly undernourished and emaciated, weighing around six stone. Indeed, his General Practitioner, Dr W, felt that the risk was real in the sense that if JH was exposed to an infection, he would not have the physical stamina or strength to resist it.
Given the real risk to life that JH was facing, the ICB sought a declaration that the advance decision he had made in 2017 was valid. The offence of complicity in the Suicide Act 1961 is unique in that it creates a situation where an accessory may incur liability when the principal does not commit an offence. This provided a challenging backdrop to the facts of this case and spurred the ICB to seek a second declaration that ‘a person does not, therefore, incur liability for the consequences of withholding tests or treatment from JH’. Of particular concern to the ICB was whether JH had had capacity at the time to make a valid advance decision, and if it remained valid despite being completed in 2017.
Hayden J made clear that, in line with the case law, doctors were not obliged to provide treatment, especially in the face of the patient’s resistance – and forbidden in the face of a capacitated refusal – an established understanding which reflected the importance of an individual’s autonomy and respect for human dignity. He went on to discuss the advance decision, which was found to be constructed carefully, was pellucidly clear, and logical. It was constructed with the assistance of JH’s family and friends and contained very careful provisions about the circumstances in which JH would wish to refuse treatment. The applicant’s real issue of concern, however, arose from whether JH had capacity at the time of the advance decision (December 2017). Importantly, he emphasised that the MCA codified the presumption of capacity as a vital safeguard to protect adult autonomy. Having heard the evidence and considered the advance decision in detail, as well as the particular fact that it was discussed by JH with his family and close friends, the judge agreed with the capacity assessment undertaken in 2017 and found that JH did have capacity.
Hayden J noted that many people hold irrational and inaccurate views regarding their health. In the context of the COVID-19 vaccinations, a significant proportion of the population do not trust or accept the accuracy of the peer-reviewed medical opinion and guidance. However, the judge held that these phenomena, which were a simple facet of human nature, were not to be equated to a lack of capacity. Similarly, JH’s views towards medical treatment and misconceived beliefs that his stomach pains were related to his Asperger’s Syndrome, could not begin to be sufficient to rebut the statutory presumption.
Importantly, Hayden J felt that the strength and consistency of JH’s feelings towards intrusive investigative procedures would mean that going against the advance decision would be incredibly corrosive of JH’s autonomy, compromise his dignity, and cause a great deal of personal trauma. In this case, therefore, JH’s decisions regarding his future treatment could not be characterised as unwise for him. For all these reasons, Hayden J granted the declaration sought by ICB.
CASCAIDr Comment: The concept of an advance decision surviving one’s loss of capacity was first developed through the common law, with the two key cases being Re AK (Adult Patient) and HE v A Hospital NHS Trust. That development was ultimately translated into ss.24-26 of the Act.
Hayden J noted that the presumption of capacity applies as much to advance decisions as to any other. The fact that an individual could be averse to lifesaving treatment or intervention, particularly in this case where JH had so ‘much going for him’, may trigger suspicion about that individual’s capacity. However, this case makes it clear that the court’s role is not to rule against decisions that may prematurely end someone’s life. Rather, the court is required to protect an individual’s capacity to make decisions for themselves, no matter how objectively ill-advised and unwise they may be (IF the person has managed to hold on to the presumption, that is); one’s unwise life choices are not there to be reversed by the court but upheld, bar those cases where an individual is held not to have capacity. Although this may seem contrary to the popular understanding of the Court’s role of protection, it serves to illustrate the strength of freedom of choice individuals have in this country – the cornerstone of a well-functioning democracy, some might say.