New report finds half of dying Britons are not dying well
At a pivotal time for end of life care in Britain the need for advance care planning is reinforced
Divided in Dying, a new report from charity Compassion in Dying, finds that almost half of those who have lost someone close to them through a short or long illness, feel their loved one died badly (45%). In cases where the dying person had recorded their end of life wishes, relatives and friends are more likely to report that they had a good death (58%).
Alongside recording end of life wishes (19%), better communication between the doctor and their loved one (39%), co-ordination of care (33%) and being able to die in a place of their choice (31%) were also identified as key aspects which could have improved the situation for the person who died in a bad way. Compassion in Dying surveyed over 2400 British adults who were asked to recall the experience of the last relative or close friend who died.
With the recent decision to replace the Liverpool Care Pathway (LCP) with personalised care plans, Compassion in Dying believes that this report reinforces the importance of advance care planning at the end of life and the urgent need to put in place workable guidance as soon as possible.
Danielle Hamm, Director of Compassion in Dying said:
“This survey reinforces what our service users tell us; that if the patient is at the centre of decisions made about their end of life care and treatment, they are much more likely to experience a good death. This highlights the importance of promoting Advance Decisions to refuse treatment, and to support patients in taking control of their end of life decision-making.
“With the decision to phase out the Liverpool Care Pathway and replace it with personalised care plans, the Divided in Dying report comes at a pivotal time for end of life care in Britain. We know that planning for the end of life and good communication in end of life care are key to ensuring people die well, we must now shift the focus to ensure that this knowledge results in a change in practice and attitudes. The division between those dying well and those dying badly must become a problem of the past.”
Terry Collins, whose story features in the report, said:
“I remember when my mother went into hospital I realised how important it was to make your wishes known. It was clear she was coming to the end of her life but because she hadn’t recorded her preferences to refuse life-sustaining treatment, the final decision lay with the medical team. My heart sank when the possibility of keeping her hydrated was raised – a decision that was made with the best intentions but was not what my mother would have wanted. By pure good fortune the hospital staff understood our concerns and they stopped intrusive treatment so that she could die peacefully.
“After seeing how close I had come to watching my mother suffer against her wishes I knew it was imperative to make an Advance Decision and to appoint a Lasting Power of Attorney. It brings me great comfort knowing that I have control over my death even if I am unable to communicate at the end of my life. My family will benefit too as they will not have to worry about trying to make decisions for me at what may be a traumatic and difficult time. I hope others will realise the importance of being one step ahead and take charge of their own end of life care before it’s too late.”
Note to Editors:
For more information please contact Michael Charouneau, Press Support Officer on 020 7479 7733
The End-of-Life Rights Information Line
The End-of-Life Rights Information Line is available on freephone 0800 999 2434, or by emailing email@example.com or writing to Information Line, Compassion in Dying, 181 Oxford Street, London W1D 2JT. The phone-line will be open between 11am and 3pm Monday to Friday.
Compassion in Dying
Compassion in Dying is a national charity (no. 1120203) that aims to support people at the end of life to have what they consider to be a good death by providing information and support around their rights and choices. We are a leading provider of free Advance Decisions in the UK and we also conduct and review research around patient rights and choices in end-of-life care.
Compassion in Dying was set up in 2007 by the campaigning organisation Dignity in Dying to take on the charitable aspects of its activities. The two organisations now work in partnership.
While Compassion in Dying aims to increase people’s understanding of and empowerment around existing end-of-life rights through information, research and education, Dignity in Dying campaigns to extend and defend individuals’ rights at the end of life.
For more information on Compassion in Dying visit www.compassionindying.org.uk
All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 4,007 adults of which 3454 consented to taking the survey. Fieldwork was undertaken between 2nd – 4th April 2013. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+).