Today is the start of Dying Matters Awareness Week, which is all about preparing people for the end of life. Kathy Gorman , assistant head of clinical quality at NHS Southern Derbyshire Clinical Commissioning Group, explains how we all can benefit by talking more openly about dying, death and bereavement and by making our end-of-life wishes known.
DEATH is a taboo subject for many of us, but without communication and understanding, death and terminal illness can be a lonely and stressful experience, both for the person who is dying and for their friends and family.
Over the past seven years, the focus of my work has been end-of-life care. For much of that time I have been involved in education, so I have spent a lot of time talking about death and listening to different people's experience of death.
When people hear what I do some think it's great but many people say "how morbid" or "how depressing".
That reaction to discussion of death and dying is very common and highlights a problem health and social care staff have in trying to improve end-of-life care. Many people have avoided discussions about death, so they have never thought or told anyone what is important to them about how they are cared for.
However, each of us has different ideas about how we would like to be cared for at the end of our life. For some people, listening to Mozart and having scented roses will be important, while for others being surrounded by their family is the most important thing.
In order to provide high-quality end-of-life care it is important to understand people's wishes and preferences so we can do our best to give them a "good death".
Unfortunately, many of us will lose our ability to say what we want or do not want as we get towards the end of life.
Many families have discouraged older relatives from discussing death and dying as they were afraid of upsetting them. Care home staff I have worked with find this very difficult as they want to give the best care possible for their resident but they have no record of what the person would have wanted.
The resident may have never spoken to their family or friends about their wishes, so the family and staff have to guess.
Karen Jenkinson, matron at Stanley House Nursing Home, said: "We are passionate about getting end-of-life care right for all our residents and also the experience for their families, friends and loved ones. It makes such a big difference when people have openly talked about their wishes, views and plans.
"Managing end-of-life care can be very difficult if there is no information available to us but very rewarding when we are able to get it right."
NHS Southern Derbyshire CCG has made end-of-life care a key priority. One important issue we are looking at is how many people currently die in their preferred place.
Currently, just over 40% of people in Southern Derbyshire die in their own home. The Dying Matters Coalition reports that 63% of people wish to die at home. So, we are working with a range of providers to increase the number of people who are identified as being at end of life so they can be given an opportunity to discuss their wishes and preferences.
We know that when people's wishes and preferences are documented they are much more likely to be met. It is a staggering fact that 81% of people have not written down any preferences around their own death, and only a quarter of men (25%) and just over one in three women (35%) across England have told anyone about the funeral arrangements they would like to have after they die. What is more, nearly two-thirds of people (60%) have not written a will – including a quarter (25%) of over-65s.
A lack of conversation is perhaps the most important reason why people's wishes go ignored or unfulfilled; therefore we are encouraging people to take up the Dying Matters week challenge:
Dying Matters aims to encourage the nation to take five crucial actions to be ready for the end of life.
Be ready for it: five things you can do
1. Make a will
2. Record your funeral wishes
3. Plan your future care and support
4. Register as an organ donor
5. Tell your loved ones your wishes
When I have taken part in events with the public I have found that the area people find hardest to discuss is about planning future care and support but the important part is just to open up the conversation.
I have had a conversation with my family about my wishes so when, hopefully a long time in the future, I get towards the end of my life it will be easier to revisit my wishes.
All the time I can express my wishes I will be free to change my mind. However, if in the meantime I lose the ability to communicate my family will have good idea of what I would have wanted.
As part of Dying Matters Awareness week, Southern Derbyshire CCG, together with Derby Hospitals, will be holding an event tomorrow, from 1pm to 4pm at Quad on Derby Market Place, where we will have a range of information stalls from organisations such as Marie Curie and Age UK. There will also be a free viewing of the film Bucket List. Everyone is welcome to attend as there is no need to book in advance.
This could be an important step to having a conversation with someone close to you about your wishes.
Talking about death doesn't bring death closer. It's about planning for life, hence the idea of writing a bucket list – listing those things you would like to do before you die. It could be anything from going up the Eiffel Tower to trying jellied eels! It's about enjoying life.
What would be on your bucket list?
For further information about Dying Matters visit www.dyingmatters.org
*POLL: Two severely disabled men will go to the Court of Appeal later to try to change laws governing the right to die. Paul Lamb, from Leeds, was paralysed from the neck down in a car accident and wants a doctor to help him to die. The 58-year-old, who has taken up the case begun by the late Tony Nicklinson, is seeking a ruling that would give doctors a defence to a murder charge. The other man, a 48-year-old known only as Martin, is seeking a change to the prosecution of assisted suicide. What is you view? have your say on our poll.