Case Summary: Barnsley Hospital NHS Foundation Trust v MSP [2020] EWCOP 26

• Serious medical treatment
• Withdrawal of clinically assisted nutrition and hydration
• Advanced decisions

Practitioners, healthcare providers and commissioners should be mindful that:

• The presumption that life should be preserved will be rebutted where P’s clear wishes and feelings and personal autonomy weigh heavily against it. In such cases, P’s wishes and feelings in relation to how s/he wishes to shape and control the end of his/her life will be determinative. 

• It is crucial to ensure that an Advanced Decision is valid and legally binding, and brought to the attention of the relevant clinicians as soon as possible.

• For an Advanced Decision to refuse life-sustaining treatment to be legally binding, it must be written at a time when P had full capacity, clearly stating that the refusals apply even where life is at risk, signed by P and signed/witnessed by another person.

• Even if an Advanced Decision is not legally binding, however, it will be given weight where it represents a clear and consistent expression of P’s wishes and feelings in line with other available evidence as to P’s views.

MSP was a 34-year-old man who had a 10 year history of significant gastrointestinal problems. On 4 February 2020, MSP wrote an Advanced Decision, detailing a refusal to life-sustaining treatment which would result directly or directly in an irreversible stoma. This Advanced Decision was not properly executed.

In May 2020, MSP was admitted to hospital with a life-threatening obstruction of the small bowel. The on call consultant gastroenterological surgeon, who had not seen a copy of the Advanced Decision, advised him that formation of a stoma was required to save his life. MSP capacitously consented to the operation, contrary to his previous consistently expressed views.  Following the operation, the consultant gastroenterological surgeon became aware of the Advanced Decision. MSP subsequently required to be sedated and ventilated and an application was made by the Trust for a decision as to whether clinically assisted nutrition and hydration should be withdrawn.

Mr Justice Hayden ruled that it would be in MSP’s best interests to withdraw clinically assisted nutrition and hydration. MSP’s clear and consistently expressed wishes, including in the Advanced Decision, were that he was not prepared to contemplate life with an irreversible stoma. These wishes and feelings, and his personal autonomy, were determinative and rebutted the presumption that life should be preserved.

MSP was a 34-year-old man who had a 10 year history of significant gastrointestinal problems, including a gastric ulcer which required surgical and ICU treatment in 2013. In 2019, MSP had surgery for an ileostomy which prolapsed in February 2020. MSP clearly and consistently expressed that he had hated life with a stoma.

On 4 February 2020, MSP wrote an Advanced Decision which was copied to his parents and step-sister. This document detailed the forms of life-sustaining medical treatment which were to be refused, even if his life was at risk or would be shortened as a result. This included life-sustaining treatment which would result directly or indirectly in the formation of a stoma expected to be permanent or with a likelihood of reversal of 50% or under. This Advanced Decision was not witnessed by a second person and was therefore not legally binding.

At MSP’s request, the stoma was reversed on 14 May 2020 and he returned to the care of his parents. However, a few days later, MSP was re-admitted to hospital and diagnosed with a life threatening obstruction of the small bowel.  MSP was informed by the on call consultant gastroenterological surgeon that the formation of a stoma was required immediately to save his life.  MSP capacitously consented to the stoma being inserted, contrary to his previous objections to a stoma expressed to various clinicians and family members, and contrary to the contents of the Advanced Decision. It was not until after the operation was carried out that MSP’s family brought the Advanced Decision to the clinicians’ attention. The consultant gastroenterological surgeon gave evidence that had he seen the Advanced Decision prior to his discussion with MSP, the conversation would have been “of a different complexion”.

Following sedation and ventilation, and MSP’s loss of capacity, an application was brought by the Trust for a decision as to whether it was in MSP’s best interests to withdraw clinically assisted nutrition and hydration.

Mr Justice Hayden concluded that it was in MSP’s best interests to withdraw clinically assisted nutrition and hydration. Mr Justice Hayden considered there was strong evidence that MSP had come to a clear and settled decision that he was not prepared to contemplate life with an irreversible stoma or any significant life changing disability. These views were a facet of MSP’s broader personality, integral to his personal autonomy, which was the key issue. MSP’s clear and consistently expressed wishes and feelings in this case were determinative and rebutted the presumption that life should be preserved. “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.”

• The presumption that life should be preserved will be rebutted where P’s clear wishes and feelings weigh heavily against it.

• An Advanced Decision that is not legally binding should still be given weight where consistent with other evidence on P’s wishes and feelings.

• Where refusals of life-sustaining treatment are concerned, the key issue is to maintain P’s personal autonomy in respect of how P wishes to shape and control the end of their life.