Dignity to the very end
Dying Matters is a coalition of 32,000 members across England and Wales which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life.
Membership is free, and offers range of benefits:
· Support in running local campaigns and events, including communications tools and resources
· Play a role in helping improve end of life care by helping people feel more comfortable talking about death and dying
· Free weekly e-newsletter drawing highlighting the best and most up to date resources relating to end of life issues
The Dying Matters coalition – which involves over 30,000 individuals and organisations – each year commissions an opinion poll. It’s partly to help us find interesting items to help generate press coverage, and partly to see if we are hitting our targets for behavioural and attitudinal change. But there are also some things we are interested in, so we ask.
One of the questions we asked in 2016 asked people to rank various factors in order of importance regarding their own end of life care. About a third of people rank being pain free as most important for a good death, followed by being with family and friends. In third, with 17%, was retaining your dignity. And retaining your dignity was the most popular second choice, picked by one in five.
There are interesting variations with age. Being pain free becomes more important to people as they get older, being most important for 29% of 18-24-year-olds by 34% of the over 65s, while being with family and friends is more important the younger you are. But retaining your dignity retained its position as the most picked second choice across the age groups. While the meaning of dignity may change for us as we grow older, we all seem to know what we mean by it, and how important it is for us.
Too many people are not treated by dignity and respect
But another question asked people if they think dying people in Britain are treated with dignity and respect. Only 31% feel they are; 50% feel they are not. Again, there’s a massive change with age. Only 37% of 18-24-year-olds feel the dying are not treat with dignity, but this rises to 62% of the over 65s.
Similarly, the annual VOICES survey of recently bereaved people found that only about six in ten who had lost a loved one in a hospital setting felt that the dying person was always treated with dignity and respect.
So being treated with dignity is clearly an important factor for people when they think ahead to their own death, but we feel that it doesn’t happen as well as it should. Clearly, retaining your dignity, and being treated with respect, is something we should expect as the norm in all situations, not just at end of life. You only die once
I go to my local corner shop two or three times a week, and the library at least twice a month. If the staff are rude or disrespectful, I have a sense of whether this is a one off. I get my car serviced annually, and if the staff are rude I can find another garage. But I’m only going to die once, and so there’s only one chance to get it right. Dying is not something we generally look forward to anyway, but, as shown by our surveys, there are aspects of it we want to be right. Worrying that they won’t be only makes the fear of dying worse.
We also know from research that if someone we love has a “good death” – however defined – it is easier for us to mourn, and to move on in grief to remembering the person we loved. But a bad death, including a sense that the dying person is not being treated with dignity and respect, lingers in the memory and can prevent us from grieving properly. We never get over the death of someone we love, but it is possible to learn to live with it, and a bad death gets in the way of this.
This isn’t just about staff, who are often overworked and under unimaginable pressure, and who also have to deal with the emotional impact of seeing patients they care about reaching the end of their lives. It isn’t just about where we die, and it isn’t just about the process.
Ambitions for good end of life care
What it is about was set out in a document called Ambitions for Palliative and End of Life Care, produced by a coalition of charities and medical bodies.
Two of the six ambitions are most relevant here. The first is the very first in the list: Each person is seen as an individual. This means that it is the individual’s choices that matter; that they are part of honest, informed and timely conversations about their health; and that each person gets to decide what matters most to them.
The second is: All staff are prepared to care. The skill, care and dedication shown by medical staff is amazing overall, but there are others. All staff – all – need to be sensitive, caring and empathetic. This might be the canteen or maintenance staff in a hospital, drivers, cleaners: all staff.
Words and documents alone won’t solve the issue, but the Ambitions Framework sets out what we should be aiming for. All of us will die. Most of us will care for someone we love as they die. Many of us could be involved in supporting someone we know as they lose someone they love. We all need to make our own wishes known if we want them to be followed.
Dame Cicely Saunders, founder of the hospice movement, said “you matter because you are you, and you matter to the end of your life.” We can’t accept second best in end of life care.
For more information on Dying Matters, please see www.dyingmatters.org or call 020 7697 1520