• Man’s wish to refuse life-sustaining treatment and a permanent stoma was detailed in his Living Will but this was rendered invalid without a witness signature, requiring an application to court
  • As Compassion in Dying experiences a surge in demand for Living Wills during the coronavirus pandemic, charity appeals to public to ensure their documents are witnessed and shared with loved ones and GP, to help ensure their wishes are followed without need for court case

A judge has ruled yesterday (Wednesday 3 June 2020) that life-sustaining treatment should be withdrawn from a 34 year-old critically ill Barnsley man, in accordance with his wishes.

The anonymous man, referred to in the judgment as MSP, had a history of painful and complex abdominal issues and had earlier this year made a Living Will (also known as an Advance Decision or Directive) clearly stating his wish to refuse life-prolonging treatment in certain circumstances if he became seriously ill. The court heard that MSP had spoken frankly to several family members and medical consultants about his wish to refuse intensive care treatment in future and his wish not to live long-term or indefinitely with a stoma (an opening in the abdomen through which to divert faeces and urine, collected in an external bag).

MSP’s health deteriorated rapidly last month, leaving him in intensive care and unable to make decisions about his medical treatment. A valid Living Will would have instructed doctors to follow MSP’s wish not to receive treatment to artificially sustain his life, however MSP’s Living Will was rendered invalid by the absence of a witness signature. An application therefore had to be made to the Court of Protection to decide what was in his best interests.

Following a remote hearing, a decision was handed down yesterday by Justice Hayden that it would be in MSP’s best interests for artificial nutrition and hydration to be withdrawn and only palliative care provided.

Compassion in Dying, a national charity that has supported over 56,000 people to prepare for the end of life, has experienced a surge in demand for Living Wills during the coronavirus pandemic. Living Wills completed through its free MyDecisions.org.uk site have increased 44% in the period since lockdown (23 March 2020) compared to the same period last year. The charity now urges people to ensure they have signed, witnessed and shared copies of their Living Will with their loved ones and GP, to help ensure their wishes are known and followed in future without the need for a court case.

In his decision Justice Hayden said:

“There is no doubt, in my mind, that [MSP] 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…

“Whilst this document is not binding as an Advance Decision, it nonetheless represents a clear and eloquent expression of MSP’s wishes and feelings…It is 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…

“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.”

Davina Hehir, Director of Policy and Legal Strategy at Compassion in Dying, said:

“Our thoughts are with MSP and his family at this difficult time. While we welcome the fact that MSP’s wishes will now be followed and we commend the efforts of the hospital and the court to reach a decision quickly and sensitively, his family have had to endure a distressing court case in order to have MSP’s wishes heard and respected. Tragically, if MSP’s Living Will had been witnessed and shared with his medical team, his doctors would have been duty-bound to follow it and his family would have been spared this ordeal.

“Since the coronavirus outbreak, there has been a dramatic surge in people making Living Wills to refuse certain life-sustaining treatments should they become critically ill with covid-19 or another illness. We urge those who are sensibly taking the time to consider what they do and do not want at the end of life to ensure that their Living Will is signed, witnessed and that copies are shared with their loved ones and GP. Free, specialist support is on hand from our nurse-led Information Line and online to help you consider what matters most to you, how to record your wishes and how to ensure they are valid while social-distancing measures are in place.

Contact us free on 0800 999 2434 or info@compassionindying.org.uk.”

***ENDS***

For further information or interview requests, please contact Ellie Ball, Media & Campaigns Manager, at ellie.ball@compassionindying.org.uk or 07725 433025.

Notes to Editor:

The decision in this case is available at: https://www.bailii.org/ew/cases/EWCOP/2020/26.html

Compassion in Dying’s guide to planning for the end of life in light of the coronavirus pandemic can be accessed here: https://coronavirus.compassionindying.org.uk/making-decisions-about-treatment/

Living Wills (Advance Decisions to Refuse Treatment)

Advance Decisions to Refuse Treatment, commonly known as Living Wills, are legally binding documents which allow an individual to record any medical treatments they do not want to be given in future, in case they later lack capacity and cannot make or communicate such a decision. Providing an Advance Decision is valid and applicable it is legally binding under the Mental Capacity Act (2005).

About Compassion in Dying

We can help you prepare for the end of life. How to talk about it, plan for it, and record your wishes.

We help people through our free information line, publications and resources, and through our work with diverse communities. We specialise in supporting people to make Advance Decisions (‘Living Wills’) and to talk about their goals and priorities when living with a life-changing illness. Our free MyDecisions.org.uk website helps people to record their wishes for care in a legally binding way.

Have any questions? Talk to us.

0800 999 2434
info@compassionindying.org.uk