Figures announced as urgent need for greater advance care planning raised in Lords social care debate

Uptake of living wills in the past month has surged 160% compared to the same period last year, Compassion in Dying reveals today (Friday 24 April 2020). The charity, which helps people prepare for the end of life and is the UK’s largest provider of free living wills, has seen a dramatic increase in the use of its services, coinciding with the spread of coronavirus in the UK.

Analysis of the charity’s MyDecisions site, which enables people to create an advance care plan containing their wishes for end-of-life care and treatment, reveals a 160% increase in completed living wills between 20 March and 20 April 2020 compared to the same period last year. Living wills, also known as advance decisions or advance directives, allow people to refuse life-prolonging treatment in future should they become seriously ill and unable to make or communicate these decisions.

MyDecisions has also seen a 226% increase in completed advance statements, which allow people to record anything else that is important to them regarding their future care and treatment, such as their preferred place of care and information about their daily routine.

Compassion in Dying’s specialist, nurse-led Information Line (0800 999 2434) has also experienced a spike in calls over the past fortnight, up 48% compared to the same period last year, with people seeking information about what treatment options would be available if they became seriously ill with coronavirus, what it is like to die with the virus and how to ensure what matters to them isn’t lost if they need urgent care.

Compassion in Dying’s latest figures come as the importance of advance care planning in care homes and other healthcare settings was raised by Baroness Meacher in the House of Lords yesterday (Thursday 23 April 2020):

“I welcome the advice of the Chief Medical Officer and Chief Nursing Officer on 7th April, encouraging vulnerable patients to discuss their treatment preferences and to record those preferences in an advance care plan. Only then can they be sure that their wishes are respected. This advice should apply much more widely. None of us knows when we will be struck down with a stroke, heart attack or a deadly virus. Every one of us needs an advance care plan.”

Diana Melly, widow of the jazz singer and writer George Melly, has a living will and a ‘Do Not Attempt CPR’ notice in place. She said:

“I am 82 and have underlying health conditions. I know that if I become seriously ill with coronavirus, or any other illness for that matter, I would want to remain at home with end of life care rather than receiving invasive treatments with no guarantee of success. George was able to have a good death at home after refusing treatment for terminal lung cancer, and I want the same for me.

“Having my wishes recorded allows me to face this pandemic with a sense of calm and control. I can get on with living in the here and now, knowing that I have done what is right for me and will have more control over my future.”

Usha Grieve, Director of Partnerships and Information at Compassion in Dying, said:

“The coronavirus pandemic has thrust death and dying into the spotlight like never before. But far from people shying away from these issues, our latest figures indicate what we have long known: that when given the opportunity, people want to talk about the end of life and put plans in place, to give them greater control over their future and to help their family when the time comes.

“Most calls to our Information Line have been from people over the age of 60 and from people with existing health conditions, with many wanting to refuse life-prolonging treatment such as intubation if they become seriously ill with the virus, and instead wanting to stay at home and be kept comfortable. We have developed tailored information in response to these enquiries and helped people translate their concerns and priorities into a legally-binding advance care plan. The sense of reassurance this gives people and their families is immeasurable.

“As this pandemic continues, we know that, sadly, more people are likely to become seriously unwell. By supporting people to record their wishes now, we can help ensure that what matters most to them is honoured in future, that their family isn’t left guessing and that their doctors are given the information they need to make the decisions that are right for their patients. We are here to help members of the public as well as health and care professionals in all settings who want to support the people they care for: just visit compassionindying.org.uk or call us on 0800 999 2434.”

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For more information or for interview requests please contact Ellie Ball, Media & Campaigns Manager at Compassion in Dying at ellie.ball@compassionindying.org.uk or 07725 433 025.

Notes to Editor:

How to make your wishes for care and treatment known if you get coronavirus

Compassion in Dying’s tailored information, developed in response to enquiries on our Information Line and with assistance from lawyers and clinicians, can be found here.

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 individuals 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 decisions. Providing an Advance Decision is valid and applicable, it is legally binding under the Mental Capacity Act (2005) and therefore must be followed by doctors.

Advance Statements

Advance statements allow people to record their wishes, feelings, beliefs and values, in case they later become unwell and require care and treatment. This can include information such as their preferred place of care, food preferences, religious or spiritual views, information about their daily routine, fears they may have around treatment or care, and information about their personal care. While advance statements are not legally-binding, they do have legal weight and should be taken into account when decisions are made.

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