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Breaking down the taboo surrounding death

Posted on 13 May 2013 | 8:05am

A nice cheery start to the week. Not just any old week, but Dying Matters Awareness Week. Did you not know?

It kicks off tonight with the Inaugural Dying Matters Lecture in London, delivered by Professor David Cunningham, and followed by a panel discussion chaired by me, with publisher Gail Rebuck and her daughter Georgia Gould joining Professor Cunningham on the panel.

Why him? Because he was the surgeon who cared for Philip Gould. Why Gail and Georgia? Because Gail was married to Philip, and Georgia is their daughter. Why me? Because Philip was my best friend, and also because in my work with Time to Change, I am in the taboo-breaking business.

I can hardly believe it is now a year and a half since Philip died. I think about him every day. I thought about him a lot yesterday, when I was at Alex Ferguson’s last home game as Manchester United manager, because Philip died when I was at a dinner in Manchester celebrating Fergie’s 25 years in charge, and I got the call amid an amazing performance from modern bagpipe band the Red Hot Chilli Pipers.

He taught us a lot in the manner of his dying, and that will be part of the lecture tonight. He wrote a wonderful book, When I Die. He updated his earlier political book, The Unfinished Revolution, and inspired another, The Unfinished Life. His death was also a big part of my own short book, The Happy Depressive.

The message from all of them was that he engaged with his death, learned from the experience of dying, used it to make sense of his life, his politics, his relationships. It was almost as though he was enjoying it. ‘Philip,’ I said to him at one point ‘you can’t really be happy that you’re going to die?’

‘Well no,’ he said, ‘but I feel I have lived a good life and I feel these days and weeks have been amazing, maybe the most intense days and feelings of my life. It has made me feel whole. It has made me appreciate my life, my politics, my family, my friendships, more than I would if I had gone on and on and died of old age. I really do feel happy about that.’ I definitely feel different about death, and about life, for having seen how he faced up to death.

Dying Matters Awareness Week is organised by the Dying Matters Coalition, and was set up in 2009 by the National Council for Palliative Care to try to break the taboo about discussing dying and to make it easier for all of us to get our wishes met at the end of our lives.

Dying Matters now has over 30,000 members across England including charities, care homes, hospices, hospitals, funeral, legal and financial services, pensioner, carer and bereavement services and individuals including those with life limiting conditions.

At the end of the event this evening, seeing how twitter now has to be part of any happening, I will be promoting something called Final Tweets, or #FinalTweets as we call it in Twitterland. Dying Matters are asking people to tweet what their final last words would be, be they pithy, poetic, poignant or prophetic. Final Tweets should be no longer than 128 characters and can be tweeted, emailed or posted – and the plan is to publish a selection of people’s Final Tweets. More details can be found at www.dyingmatters.org/page/final-tweet

And here is mine, which I have just tweeted.

‘Glad I’ve gone before Fiona. Not sure I’d cope without her. Kids be happy but change the world. Ashes Turf Moor pls #FinalTweets

And here is the top of the press release on new research suggesting more of us have to face up to our own mortality.

MILLIONS RISKING LEAVING IT TOO LATE TO DISCUSS DYING WISHES

New research for the Dying Matters Coalition shows that the majority of people in Britain have not discussed or made any plans for when they die, and are risking not getting appropriate end of life care and making it harder for their families to deal with bereavement.

The British Social Attitudes (BSA) research released to coincide with Dying Matters Awareness Week (13-19 May) finds encouraging signs that older people are increasingly taking action to make their end of life wishes known but that most people are leaving it too late to face up to their own mortality. This is despite the fact that almost two-thirds of us (63%) have been bereaved in the last five years.

Today’s study reveals that although 70% of the public say they are comfortable talking about death, most of us haven’t done anything to discuss our end of life wishes or put plans in place:

  • Only just over one in three people (35%) have a will, down on 39% in 2009 – with the impact of economic pressures being a possible cause of this decline.
  • Fewer than a third of people (28%) have registered as an organ donor or have a donor card – although the number of organ donations after death has risen by 50% since 2008, more than 1,000 people on the transplant waiting list die each year (NHS Blood and Transplant figures).
  • Only 11% of people have written down their funeral wishes/made a funeral plan.
  • lucy

    I hope Dying Matters does make progress. It’s sad but true that it takes a bereavement to focus our thoughts on what happens at the end of our life. None of know what happens at the very end, but many of us have seen relatives before they have passed away. We shouldn’t need the wake-up call of a death but life gets in the way and we forget to make plans. A friend who I had lost touch with took his own life about 18 months ago. I wondered at the time if he had made the same plans that an older person would have made. Were his finances in order? Were his family supported? Even, did he get the music he wanted at his funeral? I think the most important thing to remember is that it’s ok to be frightened of dying, but you can still make plans to ensure you are cared for as you would want to be cared for.

  • Dave Simons

    This is the one area of experience in which it can be truly said, ‘We’re all in it together’. Over the last three years we’ve seen what a predictable fraud has been the application of that sentence to other areas of experience, especially austerity, but it is very applicable to mortality.

    None of us actually know what life is all about or what happens after death. Nevertheless it’s good to have fellow travellers. Perhaps we experience a little death every night when we go into a dreamless sleep – not, I hasten to add, the ‘little death’ of certain song lyrics. The body is still ticking over but consciously where are we? In death the body gradually shuts down. We’ve all been there before, pre-natal, but we don’t even remember our earliest moments of childhood. Ultimately the honest answer to all this is ‘We don’t know’.
    But yes, it’s obviously a good idea to sort out the practicalities relating to the inevitable.

  • ma cook

    if your relative died on the lcp with no consent though, their bereavement counselling is a bit …um…perfunctory!

  • Anonymous

    Dying is one of those facts of life that nobody wants to think about, because, obviously, it comes to us all eventually. But when it comes very too close in calling, like in the passing away of a parent or close relative or friend, it does tax the mind when the mind tends to turn to thoughts of mortality.

    My tactic is to say – YAH!, up yours God, and carry on regardless, what comes comes. I hope I just drop dead just like that, with my boots on, but sadly none of us can have such a wish, as things usually are. That is why so many people do adventure sports, to play sticking two fingers up at the grim reaper with his scythe.

    Watched a WWII film from 1943 yesterday on C4 Film channel, with Gordon Jackson in it, “Millions Like Us”, as a heavy bomber Sergeant air radio and gunner – got married, and was gone the next day or so, just like that. It could have been me, gone at before 23, if time was different.

  • Death defines us in everything we do. We measure our success and failure by how we believe we will judge ourselves at ‘the end’.

    When my grandmother passed away in early 2010 I was able to spend quality time with her in those final days (thanks in no small part to the truly inspirational level of care she received from the NHS). In her own home she was able to be surrounded by loved ones. Unable to speak following her stroke communication was made through the slightest of gestures: a squeeze if the hand, a smile, a sparkle on the eye.

    In those moments we shared alone I wanted to so much to ask one simple question: “How do you feel?”

    A question that, in one form or another, we are asked throughout our lives. We take it for granted.

    But when it comes to ‘the end’, if we are able to be aware that it *is* the end, we shy away from asking that most basic, simple and true of all questions.

    I regret not asking her.

    I have already spoken to my own dad (it was his mother who passed) about this. We have agreed that when the time comes, and if there is an opportunity to do so, I want to talk to him about how he is feeling. How *it* feels.

    If there is anything as fantastical and unearthly as life after death we have also agreed that I will be reminding him that it is his mission to try and let me know.

    We spend so much of our formative years learning to communicate that to experience our final moments, no matter how long they may last, conversing in platitudes and small talk seems a betrayal of everything we experience as human beings sharing our lives together.

    It’s good to talk. Always.

  • Michele

    I’d not been aware last week was for Dying Matters Awareness although I caught a very interesting interview on Saturday afternoon during this programme :
    http://www.bbc.co.uk/programmes/b01shqch
    (slide along timer bar to 37mins)

    which was on while I was risking my own untimely end during a few hours sadly attacking a very high-up ivy ………..
    It was about the profession of undertaker / celebrant becoming more and more occupied by women, I posted last year about an amazing funeral I’d just attended conducted by one such.

    Coincidentally, also on Saturday, I was surprised to see the media had released a photo of the little girl who had drowned on holiday last week.
    They had been careless (?) enough to not only release her name but also the photo of her wearing a badged school sweater which means some of her fellow pupils were more likely to come to know of her being dead during the weekend.

    Hopefully that carelessness (?) will still have allowed at least some to receive as much comforting as their having found out with each other at assembly today could have.

  • Michele

    I’ve mentioned above a funeral I attended last year that was for a lovely man who’d died of a heart attack while on life support, surrounded by extended family who shared the impression he must have been in pain and panic, hearing, feeling and knowing what was happening.

    It was comforting a couple of weeks ago when a heartwarming programme about our Emergency Services was on TV and a man who’d been brought back from death (by his wife following instruction from a 999 operator) said his experience wasn’t as terrifying for him as he’d come to know it had been for those around him. He even described it as calm and painless.

  • Michele

    Finally looked in at the OP’s link to final tweets, some grrrreat ones 🙂

    http://www.dyingmatters.org/page/final-tweets

  • Michele

    Another of life’s bigger moments / decisions etc is the one Grace has asked about why so many people presume marriage to be a default development and display puzzlement or even mistrust for those that don’t/won’t do it if in a settled long term relationship.

    I hope she won’t be upset to think of being confused with someone who shares her name ! 😛
    http://uk.linkedin.com/in/gracecousins1

    Paxo did give FM the chance to describe her non-husband as a pussy cat.

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