Removal of life support was in patient’s best interests and respected his autonomy
12 June 2020
COVID-19 has changed many things about society, and one of the most significant is the erosion of the taboo surrounding death. After all, we have daily bulletins on death figures. As Dignity in Dying Sarah Wootton says, in her forthcoming book “Last Rights”,
The coronavirus pandemic has thrust death and dying into the mainstream.
This sensitive and compassionate judgment by Hayden J following a remote hearing of the Court of Protection is therefore worth our attention, as we all become more aware of how acutely things slip out of our control, not least of all our health.
The application from the Trust concerned a 34-year-old man (MSP) who has had significant gastrointestinal problems for approximately 10 years, requiring repeated invasive surgery. At the time of the hearing he was unconscious and on life support in ICU. The issue framed in the application was whether the Trust should continue to provide ITU support or withdraw treatment other than palliative care.
Between 2013 and 2020 MST underwent significant abdominal surgery and had a stoma inserted in 2018. The court noted that he “utterly loathed” life with a stoma. He did express his consent to the stoma being inserted at the time, but this consent seemed entirely contrary to his unambiguous rejection of this procedure, expressed bluntly to three consultants with whom he had discussed it. It also appeared entirely inconsistent with everything he had said to his mother, father and step-sister on the point.
Significantly, on 4th February 2020 MSP had written a carefully crafted Advance Directive which he had copied to his parents and to his step-sister. Outside the hospital setting these were the only three people who knew MSP had a stoma. He did not even wish his grandmother to be told. In this Advance Directive he stipulated, among other things, that he would refuse the “formation of a stoma, through an ileostomy, colostomy, urostomy or similar, that is expected to be permanent or with likelihood of reversal of 50% or under”.
The judge also emphasised other details of this document, such as the meticulous listing of music he wanted played should he fall into a coma, only to illustrate the “enormous amount of time and thought” that MSP had given to this document.
This application revolved around MSP’s own expressed wishes. It required them to be scrutinised, not only in the context of what he had said and written but by reference to the way he had lived his life, his personality and his beliefs. He emerged from his parents’ accounts as
a highly intelligent man, voraciously interested in the world, politics and affairs. He was an A star student, hard-working and respected by his colleagues at school, university and in the workplace. He is 6ft 3, handsome and meticulous in his appearance.
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.
At the time of the hearing, MSP was sedated and ventilated. He had an endotracheal tube in situ and was breathing spontaneously with the support of the ventilator. He was supported nutritionally with total parenteral nutrition. His doctor emphasised that MSP was receiving very little organ support and accordingly, if the hospital were to withdraw life sustaining care this would mean extubating MSP and permitting him to breathe on his own. Given that he was breathing spontaneously with only a small amount of support, at the time, it was conceivable that MSP would not die because of this, unless sedated to the extent that his breathing and cough reflexes were supressed. Accordingly, if MSP’s wishes were to be given effect, what required to be identified was whether it is in his best interests for artificial nutrition and hydration to be withdrawn.
The judge cited various cases under the Mental Capacity Act on the patient’s best interests, including Aintree University Hospitals NHS Foundation Trust v James  UKSC 67 , where the Supreme Court made it clear that the court below had been wrong to focus on what “the reasonable patient” would decide, and emphasised that the patient’s own wishes and feeling must be properly considered: “the things which were important to him… should be taken into account because they are a component in making the choice which is right for him as an individual human being.”
The preponderant evidence pointed strongly to MSP not wishing to live with a stoma or, as he had put it, with any “ongoing medical treatment that will prevent me from living independently, either long term or indefinitely”. Whilst this document was not binding as an Advance Directive (it only had one signature), it nonetheless represented, in the judge’s view, “a clear and eloquent expression” of MSP’s wishes and feelings. Nor did it stand alone. It was reinforced by the “choate and consistent” evidence of MSP’s parents, his step-sister (communicated via the parents) and the clear evidence of three consultants, each of whom was left with no doubt at all that MSP would not want to live either with the stoma or TPN and that the combination of both would be unbearable for him. MSP’s father told the judge that if his son was permitted to recover consciousness and discover his own plight, he thought he would “kill himself”.
MSP’s original authorisation of the procedure was predicated on the assumption that the stoma could potentially be reversed. The physician who inserted it had not seen MSP’s Advance Directive, but had communicated to MSP the possibility of the stoma being reversible. Therefore MSP’s consent at this point was not inconsistent with his wishes as expressed in the Directive.
Whether the history of the case was justified [the physician]’s optimism is logically irrelevant. MSP rejected life with an irreversible stoma and in terms which were unambiguous and consistent. In these circumstances he made it clear that he rejected all medical treatment or procedures or interventions that artificially sustain his life. Manifestly, this extends to parenteral feeding.
In the exercise of his personal autonomy MSP was entitled to take that decision which this court “is required to and does respect”. Accordingly, and for these reasons, the judge considered that the plan to remove ANH and continue sedation that would eventually lead to MSP’s death is what he would have wanted.
MSP has endured a decade of serious ill health. The quality of his life and his mobility has been desperately reduced. His confidence and self-esteem has been adversely impacted. His capacity to forge and maintain interpersonal relationships has been significantly eroded. He has made a practical, utilitarian calculation that life in these circumstances is not what he wants. In a real sense 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. This is an important facet of personal autonomy which requires to be guarded every bit as jealously for the incapacitous as for the capacitous.