Highlights of the conversation between actor and producer Greg Wise, palliative care pioneer, Kathryn Mannix and LBC broadcaster Shelagh Fogarty.
If you want to make something frightening hide it away, make it unmentionable, try to pretend it doesn’t exist.
That’s what we have been doing with the subject of death and dying for decades and what The Art of Dying Well is determined to end, writes Elena Curti.
We’ve been working to end the taboo surrounding the ‘D’ word with articles and podcasts for a while now. But on 18 January we tried something new: a live event with an audience. You can watch a short film about it here.
Our discussion on Caring for the Dying brought together palliative care pioneer Kathryn Mannix, actor and producer Greg Wise, and LBC broadcaster Shelagh Fogarty.
This trio’s conversation was filled with humanity, wisdom, and humour. It was certainly appreciated by the audience who filled St Mary’s University’s theatre, The Exchange at Twickenham.
Here’s what some of them said afterwards:
“Thank you, thank you, thank you! I only stumbled across this event by chance and had I realised what a wonderful evening it was, I would have tried to bring a lot more people with me. Both speakers were fantastic…
“If this was the only time that I ever engage with this topic, then something would already be different about my own death and that of other people around me. Clearly, this is not the only time I am going to engage with this topic! ” Anna
“I really enjoyed the evening and thought it inspiring and very well attended. I look forward to seeing the photos and more. A great initiative.” Hilary
“My summing up of the evening was that it was a most inspiring one that I hope to continue throughout the rest of my life until my death. ” Helen
Much of the audience’s enthusiasm was down to the quality of our speakers. Kathryn Mannix has made it her mission to soothe our fears about death. She draws on her vast experience and relates a wealth of deathbed stories, all of them inspiring.
Greg Wise speaks eloquently as a carer who looked after his dying parents, and then his beloved sister Clare, who died of bone cancer. Greg put his work to one side and moved into her flat to be at her side for the last three months of her life.
And Shelagh Fogarty draws on her experience of witnessing deaths in rural Ireland where she has her roots, and of hosting regular discussions on the subject on her phone in programme on LBC Radio.
Underpinning the evening’s conversation was the conviction that love transcends death. As Greg says: “What I hold on to is the fact is that the relationship isn’t over. It continues. Death doesn’t stop you having a relationship with someone. They just don’t answer back.”
So what else did the evening tell us about dying well? Here are some of the main points:
A dying person is living until they draw their last breath. Amid all the anxiety of a diagnosis of terminal illness, it is all too easy to overlook this fact. Kathryn Mannix says that dying well is about living well for all of the time while we’re dying.
Make plans for your death. For instance, do you want to die at home or in hospital? At what stage do you want palliative care? This will help you and your loved ones. Kathryn advises that you should think about how you organise Christmas to find your coping strategy.
Everyone is different. Much to Greg’s frustration, his sister, Clare, refused to accept that she was dying and make plans. However, he knew she wanted him at her side and to be at home. By helping her to do that, he says that Clare had a good death.
There is a mystery about the timing of death. Greg’s sister died a minute after he told her she could go. He told her that he loved her, that things had become too difficult and that she did not have to stay any more. Kathryn says that dying after loved ones have given permission is quite common. She has also seen patients who should have died weeks earlier stay alive in order to hear important news, such as exam results or a baby’s birth. Often, they die in the 30 seconds that loved ones are absent from their bedside. If you watch our film, you will see that the permission to die is not always taken!
People often mistakenly believe that a dying person is suffering. This may be because they see the dying person apparently choking. Kathryn says that the patient is deeply comatose and not suffering at this time.
There should be more ‘normal’ deaths on television. Violent deaths dominate in dramas. Kathryn would love to see an ordinary community palliative care scene in one of our popular soaps.
Strong communities help us to die well. Shelagh Fogarty thinks that the Irish are much more comfortable talking about death, with small children attending wakes and funerals. Greg says he was fortunate to have friends and family living close by who rallied round when his sister was ill.
Lay people are training to be companions to the dying. These are known as
soul midwives and end of life doulas (a Greek word used to denote a companion or accompanier). It’s a relatively new trend and Kathryn believes they perform a valuable role.
Talk and read about death and dying. A good start would be the books Kathryn Mannix and Greg Wise have written on the subject. Kathryn’s book, With the End in Mind (HarperCollins), is filled with deathbed stories that are positive and reassuring. It is no accident that the paperback edition features a cup of tea on the cover. Greg’s book, Not That Kind of Love (Quercus Books), consists of blogs by his sister and then taken up by Greg when she became too ill to write.