DAC Beachcroft was appointed to represent Barnsley Hospital NHS Foundation Trust in a complex Serious Medical Treatment case; concerning whether it was in a patients best interests to continue to receive life sustaining treatment when set against the clear wishes he had expressed not to, despite the fact that his chances of survival were good.
Here, Peter Merchant, partner, discusses the background to the matter and the implications for clinicians of Mr Justice Hayden’s decision.
Background
The patient, a 34 year old male referred to as MSP, had experienced serious gastrointestinal problems for a decade, and had previously undergone surgery including the fashioning of a stoma which at his request had been reversed in May 2020.
In late May 2020 he underwent an operation which resulted in the need for a stoma for life. In the aftermath of the operation, the treating clinicians, reflecting conversations they had had with MSP pre surgery and with his parents post-surgery, considered that this was not an outcome that MSP would wish for and also considered that continued life sustaining treatment did not accord with an “Advance Directive” he had personally prepared in February 2020.
However, it was only after MSP had consented to the surgery and it had been carried out that MSP’s parents produced the “Advance Directive”.
Further to this, Mr M, the clinician who discussed the insertion of the second stoma with MSP, said that his conversation would have been “of a different complexion” if he had been aware of the Directive. Mr M also acknowledged that he had been optimistic in the original conversation that the stoma could be reversed, an outcome which had been ruled out by the findings during the surgery.
The Advanced Directive was unwitnessed and therefore not legally valid. Following the operation his condition was such that MSP was unable to confirm his wishes. Had the “Advanced Directive” been valid, there would have been no question to raise with the court. Since it was not binding, a decision had to be reached in accordance with what was in MSP’s best interests (section 4 MCA).
A question for the Court
The question for the court was whether it was in MSP’s best interests to continue to receive such life sustaining treatment when set against the clear wishes he had expressed in the “Advance Directive” and the fact that his chances of survival were good, albeit that he would live the remainder of his life with a stoma and the daily need for TPN.
In the judgement, the Court of Protection ordered that it was in MSP’s best interests, and reflecting MSP’s “Advance Directive”, that treatment be withdrawn from MSP and he be allowed to die. Mr Justice Hayden’s thoughtful and sensitive judgment sought to draw a distinction between the many people with stomas and other lifelong health conditions who do not find life intolerable, and MSP who did not wish for his life to be preserved in such circumstances, and who had made a clear expression to this effect. He emphasised how the principle of sanctity of life may give way to the right of self-determination; and how MSP’s best interests may be best served by giving effect to what the patient would choose for themselves were they able to do so, even if that choice means death. Perhaps anticipating the public reaction his judgment would cause, Hayden J wrote that ‘…it is not for others to say that a life they would regard as tolerable would be considered to be so by P’ [para 28]. He went on to emphasize that ‘this is not a case about choosing to die, it is about an adult’s capacity to shape and control the end of his life.’ [para 47]
The Court’s decision
Thousands of people lead happy, active and fulfilled lives with a stoma in place. But there was “powerful evidence” from MSP’s parents, his step-sister, and from his earlier conversations with three different consultants that MSP would never accept living with a stoma. “No amount of support, love or understanding could change MSP’s mind.” Not only had he direct experience of life with a stoma, but Hayden J found having a stoma “ran entirely contrary to MSP’s perception of who he was. Its existence was corrosive to his self-esteem” [para 7].
Although the document prepared by MSP was not binding as a valid Advanced Decision under the MCA, “it nonetheless represents a clear and eloquent expression of MSP’s wishes and feelings” [para 41]. There was abundant evidence that its contents reflected MSP’s settled views. The contents were consistent with what he had said, what he had written, the way he lived his life, his personality and his beliefs.
There was “little doubt” that had Mr M been pessimistic about the prospects of reversal, “MSP would have rejected the procedure and chosen to die.” He went on to emphasise that the decision for the court was not whether to “correct the error by bringing about the death which MSP would prefer to life with an irreversible stoma” since that would fall foul of section 4(5) MCA [para 46]. Rather, the court focused on MSP’s rejection of anything which artificially prolonged his life.
Ultimately, Hayden J accepted the submissions of the Official Solicitor, appearing in person on MSP’s behalf, that “[h]is expressed wishes and feelings weigh most heavily in the balance, to the extent that they are determinative here. In other words, the presumption of preservation of life is rebutted by the countervailing weight to be afforded to MSP’s autonomy” [para 44]. He found that MSP had “made a practical, utilitarian calculation that life in these circumstances is not what he wants” [para 47].
Advance decisions
The presumption of the preservation of life is a critical starting point in any case considering the continuation (or not) of life sustaining treatment; but the quality of life which each of us finds tolerable is ultimately a deeply personal issue which very few of us would want to be dictated by another.
The case is also another lesson for all who want to decide for themselves what treatment might be given to them on losing capacity. The purpose of an Advance Decision is to avoid unwanted medical treatment and court applications. It can only do that if the Advanced Decision is correctly drafted and properly executed at the outset, and if clinicians are aware of its existence and properly informed of its contents. In brief, an Advanced Decision to refuse lifesaving treatment must: be in writing (whether written by P, or someone else and recorded in the healthcare notes); be signed by P and witnessed; and signed by another person; and state clearly that the decision is to apply, even where life is at risk.
This was a complex Serious Medical Treatment case, where the clinicians and patient’s family were all seeking to make the best decisions on behalf of the patient, against competing dilemmas between his consent for surgery and the ‘Advance Decision’ document he had previously prepared. The decision by the Court of Protection to uphold his wishes in the Advance Decision document, demonstrates that where a person has had the courage to make such a decision, those protections will ensure that clinicians can be confident that they are respecting the patient’s wishes, and that they are facilitating what the patient would deem a good death without the need to go to court. This has to be the best possible outcome for the patient, for their agonised and grieving family, and for the doctors as well.
