On the 29 May 2020, Mr Justice Hayden received an urgent application (made out of business hours) by Barnsley NHS Foundation Trust.
The application related to a 34 year old man with a history of complicated and painful abdominal problems dating back 10 years. He was known as “MSP” throughout the case to protect his confidentiality. The application was made to the court for a decision to be made to whether the NHS staff should continue to provide intensive care support, or should withdraw treatment other than palliative care.
In October 2019, MSP underwent surgery where an ileostomy was formed (an opening in his abdomen). There was a significant prolapse in February 2020, and MSP was reported to find this very distressing, and he requested that the stoma be reversed. The evidence put before the court was that MSP “utterly loathed life with a stoma.”
On 4 February 2020, MSP prepared what he named an “advance directive” and sent copies to his parents and step-sister. He had prepared a detailed written statement and included that he would wish to refuse “[t]he formation of a stoma, through an ileostomy, colostomy, urostomy or similar, that is expected to be permanent or with likelihood of reversal of 50% of under” and that music should be played if he was to go into a coma, and at his funeral.
S25 of the Mental Capacity Act 2005 provides that an advance decision must be signed by the person making the decision or someone in their presence, and signed by a witness. MSP’s advance statement was a detailed written record that he would not want to continue to receive treatment in the event that this meant that he would have to live with an irreversible stoma, however, the statement that he had made in writing did not comply with the legal requirements to amount to a binding “advance decision”.
In mid-May 2020, MSP returned to hospital with significant abdominal pain and sepsis. His condition had become life threatening and medical professionals advised that he required a stoma to be formed immediately. MSP underwent surgery and an irreversible stoma was formed on 27 May 2020.
The advance directive / written statement made by MSP then came to the attention of medical professionals, and an application was made to the Court of Protection by the NHS Trust whilst MSP was sedated and being ventilated in ITU.
The judge stated that “if MSP’s wishes are to be given effect, what requires to be identified is whether it is in his best interests for artificial nutrition and hydration to be withdrawn. This application revolves around MSP’s own expressed wishes. It requires them to be scrutinised, not only in the context of what he has said and written but by reference to the way he has lived his life, his personality and his beliefs. His parents have been the conduits through which this information has been placed before the court.”
The judge heard detailed evidence from MSP’s family, including his mother. He then commented that:
“There is no doubt, in my mind, that he had come to a clear and entirely settled decision that he was not prepared to contemplate life with a stoma or indeed any significant life changing disability. It is not for me, or indeed anybody else, to critique those views or beliefs, but merely to identify them. They are a facet of MSP’s broader personality, the expression of which is integral to his own personal autonomy.”
The judge commented that the objective in these cases must be to focus on the views and feelings of the person concerned, and to re-assert their autonomy in such situations.
The judge emphasised in this case the importance of complying with legislative provisions and the code of practice when preparing an advance decision.
The detailed statement written down by MSP just a few months earlier in February 2020 was not legally binding and so the professionals and the judge in this case did not have to follow it in making a decision.
However, the judge commented that: “The preponderant evidence points strongly to MSP not wishing to live with a stoma or, as he puts it, with any “ongoing medical treatment that will prevent me from living independently, either long term or indefinitely. Whilst this document is not binding as an advance decision, it nonetheless represents a clear and eloquent expression of MSP’s wishes and feelings”. One of the important factors that the Court of Protection takes into account when making a decision on behalf of someone lacking mental capacity is any evidence of the person’s wishes and feelings.
The statement made by MSP in February was not the only evidence of his wish to refuse treatment in this situation. Evidence was heard from several family members and it was clear that all felt that it would be unbearable for MSP to live with a stoma. MSP’s father’s evidence included that in his view, MSP would kill himself if he was to recover consciousness and discover that he had an irreversible stoma.
The judge concluded that:
“In the exercise of his personal autonomy he is entitled to take that decision which this court is required to and does respect. Accordingly, and for these reasons, I consider that the plan advanced by Dr W is in MSP’s best interests [i.e. withdrawal of artificial nutrition and hydration with continued sedation which, ultimately, will compromise respiration and lead to MSP’s death]. It is important that I make it entirely clear that Dr W puts forward this plan only in the event that I conclude that it reflects what MSP would have wanted. Having heard all the evidence, which I regard as compelling and cogent, I am satisfied that the plan accords with MSP wishes and feelings.”
MSP’s right to autonomy and choice to die in the event that his condition to deteriorate to the point of having an irreversible stoma were upheld in this sad case.
The decision goes against the principle of the sanctity and preservation of life, and is contrary to s4(5) Mental Capacity Act 2005, which explicitly prohibits an evaluation of best interests which is motivated by a desire to bring about death.
The judge also made clear that the anonymity of MSP, his family and the treating doctors were to be protected until three months after his death, to respect the extent to which MSP wanted to conceal his stoma.
This case highlights the importance of making advance decisions where any strong wishes and views are held about future care and treatment, and the importance of ensuring that the decisions comply with legal requirements. Perhaps more importantly, any advance decisions or written statements should be clear enough to enable professionals to understand the views and preferences.
Should you find yourself in a similar difficult situation in respect of a prior decision made by a loved one that now lacks capacity to make a decision themselves, due to a lack of consciousness or mental impairment, or have any questions relation to this article, our specialist Court of Protection team may be able to assist. Please do not hesitate to get in touch with us on 01616 966 229.