Plea to record end-of-life wishes, after dispute over life-prolonging treatment of woman left brain-damaged from Covid
The national charity Compassion in Dying and the daughter of a man kept alive against his wishes are appealing to people to record their own wishes for the end of life, following a decision handed down on Friday 3 September 2021 by the Court of Protection to withdraw life-prolonging treatment from a woman left paralysed and brain-damaged from Covid-19.
The woman, who cannot be identified, is in a minimally-conscious state, lacks capacity to make or communicate her own decisions and left “no direct record” of her wishes regarding medical care and treatment. Doctors treating her at Addenbrooke’s Hospital in Cambridge have estimated that the woman, in her 50s, has just months to live and have declared that her condition cannot be improved. Her family members and medical team disagree about whether continuing or removing life-prolonging treatment is in her best interests, and so the decision was referred to the Court of Protection in August 2021. Justice Hayden ruled on Friday 3 September 2021 that ventilation should be discontinued by the end of October, while all other care to keep her comfortable will continue to be provided.
Davina Hehir, Director of Policy and Legal Strategy at Compassion in Dying, said:
“Our thoughts are with the woman and family at the centre of this tragic case. It painfully demonstrates how crucial it is that we not only talk about but record our wishes for life-prolonging treatment now, while we are able to, as sadly any of us could become seriously unwell and unable to make these decisions for ourselves. While no one can demand treatment, you can express a desire to accept all treatment deemed appropriate, and anyone can refuse life-prolonging treatment in advance should they wish. Without a clear record of your wishes, these important decisions will fall to doctors who may not know you and who may disagree with your loved ones about what is in your best interests. This can sometimes result in lengthy legal proceedings at an already upsetting time for your family, as in this case.”
“If you have strong feelings about the treatment you do or don’t want in the future should you become seriously unwell, write your wishes down and share them with your loved ones and GP. You can record important information about yourself, your values and preferences in an Advance Statement, including a wish to receive all life-prolonging treatment offered to you; you can refuse life-prolonging treatment and prioritise comfort care in advance using a Living Will, formally known as an Advance Decision; and you can appoint a trusted person to make such decisions on your behalf using a Lasting Power of Attorney. Taking these steps provides invaluable peace of mind in the present, and helps ensure your wishes are known in future.”
Compassion in Dying’s plea is echoed by the daughter of a man left unable to make his own decisions following a stroke in 2016, who has since been receiving life-prolonging treatment in the form of a feeding tube against his wishes, she believes.
Before his stroke the man, who cannot be identified, repeatedly expressed a desire to refuse life-prolonging treatment should he become seriously ill in future. For a few weeks after his stroke while he was still able to communicate, he reiterated this wish, refusing food and drink and telling doctors he wanted to be allowed to die. But doctors and the hospital’s legal team disagreed about whether he was mentally competent to make such a decision, and he had never documented his wishes in a Living Will. It took more than four years before the case was heard in the Court of Protection last March – the first ever heard by video-link. The judge ruled that he should continue receiving this treatment, despite testimony from the man’s daughter and multiple family members that he would not want this. Doctors estimate he could live several more years in this condition.
His daughter said:
“I love my Dad dearly and the thought of finally losing him is devastating, but I know he would want to be at peace. Without written proof of my Dad’s wishes, however, I have been repeatedly dismissed. It is mental torture, knowing Dad is suffering, fighting so hard to have his wishes respected but being ignored again and again. I beg people to speak to your loved ones about the future, about what is most important to you when it comes to the end of your life, and, most importantly, make a Living Will if, like my Dad, you don’t want to be kept alive in a state you feel is intolerable.”
Free, specialist support to help you think through and record your wishes is available from Compassion in Dying online and via our information line at 0800 999 2434 or email@example.com.
For more information or interview requests, please contact Genéa Saunders: firstname.lastname@example.org and Ellie Ball : email@example.com / 07725 433 025.
Notes to Editor:
Living Wills (Advance Decisions to Refuse Treatment)
Advance Decisions to Refuse Treatment, commonly known as living wills or advance directives, are legally binding documents which allow an individual to record any medical treatments they do not want to be given in future, including CPR, 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 website helps people to record their wishes for care in a legally binding way.
Have any questions? Talk to us.
0800 999 2434