Patient shapes the life he will tolerate: Respecting wishes in best interest decisions

Barnsley Hospital NHS Foundation Trust v MSP [2020] EWCOP 26, 3.6.2020

Whatever the media headlines, 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[47].

In a thoughtful and sensitive judgment, the Vice President of the Court of Protection has emphasised again how the principle of sanctity of life may give way to the right of self-determination; and how P’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.

The issue

MSP, a man in his thirties, was heavily sedated in ICU following abdominal surgery to insert a stoma. He was ventilated and receiving total parenteral nutrition[1]. MSP had experienced serious gastrointestinal problems for a decade and had written an “Advanced Directive” spelling out the terms on which he did – and did not – wish for medical treatment to prolong his life. With the need for a stoma now permanent, and the prospect of an equally permanent need for artificial nutrition and hydration, the question for the court was whether it was in MSP’s best interests to continue to receive such treatment.

The background

MSP was described by the court 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” [15].

MSP had suffered a decade of painful and complex abdominal problems, which had led to the insertion of a stoma in October 2019. MSP “utterly loathed life with a stoma” [4], and it was his request for stoma reversal surgery that had indirectly led to his present predicament. Severe peritonitis and sepsis after that surgery meant that further abdominal surgery had been necessary to try and save his life. This had led to the insertion of a new stoma which would now be irreversible.

Three months prior to surgery, and unknown to his doctors, MSP drafted a detailed document which he called an “Advanced Directive,” although this descriptor is now no longer recognised in English law. Hayden J found that MSP “gave considerable thought to the scope of the interventions that might fall to be considered.” In his signed document, MSP expressed his refusal of all life-sustaining treatment if his life was to be one with “a stoma, through an ileostomy, colostomy, urostomy or similar, that is expected to be permanent or with likelihood of reversal of 50% [or] under” [9].  He also refused treatment which would leave him with other, completely unrelated, disability or disfigurement.

However, in as much as it aspired to be an Advanced Decision under the Mental Capacity Act 2005, this clear and thoughtful document was flawed. Although it had been dated and signed, the signature was not witnessed by a second person [19]. This latter step is essential for an Advance Decision refusing life-saving treatment to be valid (sections 25(5), 25(6), and 26(1) MCA).

It was only after MSP had consented to the surgery and it had been carried out that MSP’s parents produced this document. Hayden J emphasised that he had no criticism of MSP’s parents or the doctors for this, but the consequences were significant. 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 that conversation that the stoma could be reversed, an outcome which had been ruled out by the findings during the surgery.

Although not specifically addressed in the judgment, another consequence was that there was no opportunity for doctors to discuss MSP’s Advanced Directive with him or to note that it was not witnessed and help him remedy that defect if he wished.

Had the Advanced Decision 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).

With MSP sedated and ventilated (and thus incapacitous), the NHS Trust turned to the Court to decide whether they should continue to treat MSP in ICU or should withdraw all active therapy and nutrition. The prospects of MSP surviving withdrawal of ventilation were said to be 60-70%, and accordingly, the Trust considered (and the Court agreed) that if ventilation was withdrawn, so too should artificial nutrition and hydration.  MSP’s death would then be inevitable [45].

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” [7]. MSP’s father told the court that his greatest fear was that “if his son was permitted to recover consciousness and discover his own plight, he would ‘kill himself’” [41]. Although this was not discussed in the judgment, it may be that this was the reason that there appears to have been no serious contemplation of treating MSP until he had recovered sufficiently to make the decision himself.

As described by Lady Hale in Aintree[2], section 4 puts the “emphasis on the need to see the patient as an individual with his own values, likes and dislikes, and to consider his best interests in a holistic way. Section 4 is complemented by the MCA Code of Practice which provides, when considering best interests: “All the factors in the best interests checklist should be considered, and in particular, the decision-maker should consider any statements that the person has previously made about their wishes and feelings about life-sustaining treatment.”[3] As such, the Court must seek to arrive at an objective assessment of whether continuation of life sustaining treatment is in this patient’s best interests. Those interests must be considered from the subjective position of the patient.

Hayden J recognised the position emphasised in Re J (1991), and in Aintree, that it is not for others to say that a life which the patient would regard as worthwhile is not worth living. He added, however, that “[i]t is axiomatic that the corollary must equally be true i.e. it is not for others to say that a life they would regard as tolerable would be considered to be so by P” [28].

“It is not for others to say that a life they would regard as tolerable would be considered to be so by P”

In this case, 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” [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.

The court accepted that MPS’s decision to undergo the surgery “seemed entirely contrary to his unambiguous rejection of the stoma, 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” [6]. However as noted by Counsel for the Trust, the fact that he “accepted an operation that gave him the possibility of life without a permanent stoma does not militate against [the Advance Decision] remaining his choice” [34].

There was “little doubt” in Hayden J’s mind 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[4] [46]. Rather, the court focused on MSP’s rejection of anything which artificially prolonged his life.

The principle of sanctity of life may give way to the right of self-determination.

Ultimately, Hayden J accepted the submissions of the Official Solicitor, appearing in person on MSP’s behalf[5], that “[h]is expressed wishes and feeling 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” [44]. He found that MSP had “made a practical, utilitarian calculation that life in these circumstances is not what he wants” [47]. How many of us are brave enough to do that?


In typically considered language, the Vice President concluded: “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” [47]. The authors emphatically agree. 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.

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.

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 litigation. It can only do that if the Advanced Decision is correctly drafted at the outset, and if clinicians are aware of its existence and properly informed of its contents (see previous blog on this subject, NHS Cumbria CCG v Rushton).

In brief, an Advanced Decision to refused lifesaving treatment must:

  1. be in writing (whether written by P, or someone else and recorded in the healthcare notes);
  2. be signed by P and witnessed; and signed by another person and
  3. state clearly that the decision is to apply, even where life is at risk.

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 where necessary, 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.



[1] Nutrition and hydration given by means of fluid directly into a vein – bypassing the gastrointestinal tract

[2] Aintree University Hospital NHS Trust v James [2013] UKSC 67 at [26]

[3] Mental Capacity Act 2005 Code of Practice, paragraph 5.32

[4] Prohibiting an evaluation of best interests which is motivated by a desire to bring about death

[5] And in a notable first, for which Hayden J expressed his gratitude, providing Out of Hours cover. This cover for serious medical treatment cases is now provided by the Official Solicitor together with senior members of her team


Bridget Dolan QC appeared for the Applicant Trust instructed by DAC Beachcroft, Leeds.