What if you were told you had a week to live? Would those close to you know how best to support you and the wishes you have? Would they know about the plans you’ve made for after your death? For one in ten of us, they wouldn’t. This is why Dying Matters are encouraging people to talk, plan and live for this year’s awareness week on 18 – 24 May and in Leeds we’re opening this conversation with a series of events and discussions. Talking about death can feel uncomfortable, but to get the best end possible we need to break the taboo. Every adult, of whatever age, needs to look ahead and ask “what if?”
Planning for death seems to go against every instinct we have. For the majority of us who consider ourselves well and healthy, we may wonder why it’s so important to think about dying when we’re so busy living our lives. But issues like knowing what would happen to our children if we died suddenly, or who would speak on our behalf if we became too ill, are extremely important. Not only are dealing with these things easier to sort out when we’re healthy but they can make it less stressful for us and our families when the time does come.
While the optimistic few of us believe we’re immortal, death is something that all of us will have to face. For most in Britain the topic remains a taboo with 83 per cent feeling uncomfortable talking about it. Culturally, it seems superstition is the main culprit holding us back, with many believing talking about death will tempt fate. Unfortunately, this fear has led to many not having the end they would have wished for – only 29 per cent let somebody know their funeral wishes, as little as one in three write a will and 70 per cent of the 500,000 people who die in England each year, die in hospitals when they would have rather spent their last days at home.
This is why the work Dying Matters, a coalition formed by the National Council for Palliative Care, is so vital. For this year’s Dying Matters awareness week, the theme is ‘Talk, Plan, Live’ which aims to open a national conversation about death and dying. To support the week and open the conversation locally, Leeds has a busy programme of events, from death cafés, film screenings, to will writing drop in sessions, there’s plenty going on and lots of ways you can get involved! Why not join the conversation on Twitter? Just use the hashtag #DyingMattersLDS
For the awareness week Carole Clark, our Ageing Well Officer, spoke to Dr Nicola Turner, a Consultant in Elderly Medicine at Leeds Teaching Hospitals Trust about her experiences working with people at the end of their lives and why it’s important to plan:
“We see the difficulties that arise at the end of life when patients and their families are totally unprepared for the inevitable. The medical profession needs to take its share of the “blame” as we’re often not good at being honest with people about how poorly they are – we try to focus on the positive more than is realistic.”
Nicola shared a story of a patient who had severe heart failure and only a short time to live:
“The lady had very severe heart failure and it became apparent that she was not responding well to intravenous treatment – all hope was not lost, but it was clear to me that even if she survived this episode she still had a very poor prognosis – so I told her that openly and honestly and we talked about what was most important to her given that time was short. With her permission, we also brought the family in and told them the situation too – this allowed them all to be open and honest with each other – she saw one grandson turn 18 and a computer was brought in so that she could Skype her other grandson in New Zealand. Sadly she didn’t live to see her granddaughter married – but she was able to talk to the girl about her plans.
Her final deterioration was quicker than we had anticipated and she died very peacefully in hospital with her family around the bed. Her wish had been to die at home – and had we started talking about death sooner with her we might have achieved this goal for her, but in the event we couldn’t get things in place quickly enough for her to have any quality time at home so she and family decided they preferred to stay on the ward. I think this death was a good as we could make it – but had conversations started earlier death at home might have been possible.”
Nicola’s story is one of many highlighting the importance of talking to loved ones and planning for when the time comes. You may have worries about what will happen in the future, but addressing these issues now is the best way forward and can help put your mind at rest.
All of us have opinions about how we do and don’t want to die but as nation we have a big problem communicating this. Whether it’s how long we want doctors to keep us alive, to what we’d like to happen after our deaths, we need talk to our loved ones about these wishes and make the necessary legal measures to allow the end of our lives to be about appreciating what we have, rather than what we are about to lose.
Here are some tips for talking to your loved ones about dying:
- Choose the right place and time, no one finds it easy to talk when they’re rushed or stressed
- If you start the conversation, consider beginning with a question rather than a statement: “Have you ever wondered what would happen…?” “Do you think we should talk about…?”
- Listen to what the other person is saying, rather than always steering the conversation yourself
- Be totally honest right from the start, there may be laughter or tears but don’t be afraid of either
Finally, we want to hear your feelings on death and dying, have you had the conversation with your loved ones? Written your will or discussed your funeral wishes someone?
Just complete this survey
Want more information?
For support and resources visit: www.dyingmatters.org
To find out what’s happening locally visit: http://www.leeds.gov.uk/dyingmatters
If you’re interested in the work Leeds’ Hospices do, visit:
St Gemma’s: www.st-gemma.co.uk
Want to read more around the subject of ageing and death?
Dr Atul Gawande’s book ‘Being Mortal’ looks at medicine and what matters in the end
Dr Gawande also discusses these issues as part of Radio 4’s Reith Lectures