Liability of Trust for Withholding Treatment
19 January 2023
The Court of Protection emphasised that there was no obligation to provide treatment and, perhaps more importantly, there was no entitlement to do so in the face of a patient’s resistance. This reflected a mature understanding of the importance of individual autonomy and respect for human dignity: NHS Surrey Heartlands Integrated Care Board v JH [2023] EWCOP 2 : Hayden J, VP
The NHS Surrey Integrated Care Board (the ICB) sought a declaration pursuant to s26(4) Mental Capacity Act 2005 (MCA 2005) that the respondent had made an advance decision in 2017 which was valid and which applied to any invasive test or treatment (including life sustaining treatment).
For the avoidance of doubt, the draft declaration sought a recording “that a person does not, therefore, incur liability for the consequences of withholding such tests or treatment from JH.”
JH was diagnosed with what is now recognised as Autistic Spectrum Disorder at the age of 16 in 1995. His doctors also identified that he had a phobia of hospitals largely triggered by a background of gastrointestinal pain and discomfort as a child (which had plagued him for the rest of his life), hormone treatment and extensive hospital tests and invasive procedures.
As a result of very poor nutritional intake, JH was now deficient in the full gamut of vitamins, was probably anaemic, noticeably undernourished and emaciated and weighed in the region of six stones, he rarely left the house and was identified as being in immediate and obvious risk.
The advance decision was manifestly constructed carefully, with the assistance of JH’s family and friends and, although the date was muddled, the rest of the detail was pellucid. The document was structured around the relevant provisions of ss24-26 inc of the MCA 2005.
Careful provision was made about the circumstances in which he would wish to refuse treatment, including brain injury, diseases of the central nervous system and terminal illness.
A capacity assessment undertaken in 2017 concluded that JH had capacity although later clinicians wavered about the correctness of that assessment. The MCA erected a presumption of capacity as a vital safeguard to protect adult autonomy, although it did not require those decisions to be, objectively, wise.
Dr W became JH’s GP in 2009, he was absolutely dedicated to the care of his patient above and beyond professional duty or obligation, and it was clear they had a convivial relationship.
Having heard the doctor’s impressive evidence and having considered the advance decision document in detail, the court was entirely satisfied that JH had capacity in 2017 to make decisions regarding the refusal of his medical treatment. His Lordship emphasised, however, that if he had found that JH lacked capacity either in December 2017 or indeed at the time of the hearing, he could not have contemplated a situation in which the envisaged investigations could have been forced upon him.
The strength of his feelings, the consistency with which they had been held for so many years, and his obvious distress at the contemplation of such an intrusive investigative process would, in the court’s judgment, be brutally corrosive of JH’s autonomy. It would both compromise his dignity and cause him great personal trauma.
Counsel had reminded the court that if the court determined that it was in JH’s best interests to have further investigations he would not undergo them willingly and would have to be physically restrained. He also told Dr W that undergoing investigations such as colonoscopy would make him feel violated and it was not something he could tolerate. The court agreed with Dr W that any further investigations should not be undertaken against JH’s will because of the distress it would cause him.
Granting the declaration sought, the Vice President said refusing these procedures may not be a decision that many of us would consider to be right but that was not what fell into question here. The court was required to protect JH’s capacity to take decisions for himself, both those that may be, objectively, ill-advised, as well as those that might, more generally, be regarded as wise.