We need to talk about dying. Personal reflections. New campaign #TheDepartureLounge

Last night I attended the opening of the Academy of Medical Sciences’ (AMS) wonderful new public dialogue project #TheDepartureLounge . It’s all part of a campaign to encourage us to talk more about death and dying. The pop-up interactive initiative in Lewisham Shopping Centre really is great and the poetry on the night was a particular highlight. Next week the Academy continues in the same vein by hosting a night of comedy and discussion entitled ‘Dead Beats’ – details here. See also end of this blog.

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My grandfather’s death when I was 7 was a profound shock. I do not recall any real discussion of his illness up to that point. Even less so of his death. One minute he was part of my life. The next minute he was not. I am told that he collapsed on our doorstep once and I was hurried away indoors. But I was very young and it was the seventies.

His death precipitated in me a neurotic and long-lasting obsession with dying which lasted for some time. I worried over it. I feared it. I thought it was going to happen to me at any moment. ‘Is my heart going to stop’ was a question I would ask my parents again and again. I am sure that’s not unusual. But it was to me. In fact, it was terrifying.

Fifteen years ago my older sister died after six weeks in intensive care in Chelsea and Westminster Hospital. This after falling ill with sepsis at the tail end of being successfully treated for cancer. Rotten luck. To put it mildly.

That doesn’t tell half the story of course. Of the trauma of watching a loved one die. Of feeling powerless to give them their very own Champions League moment and defy all the odds. Every day I ask myself ‘if only I had believed a little bit more.’ But I didn’t.

I have tried to write a bit about those last weeks with Claire and how I remember her, here and here.

That last poem was actually inspired by my frustration with the ceremony and rituals that surround death at the expense of proper conversations. Death may be the end of a loved-ones personal story. But it need only be the full-stop at the end of a sentence in one’s own. I’m not big on marking occasions such as the day she died. I’d rather think of her every single day particularly when it’s a sunny day with clouds like florets. For some reason it triggers a memory in me of her walking me to school.

Now I am reaching that point in life where people of my own age who have shared a little of my journey are passing away. Last year an old schoolfriend spent her last days in a hospice. Far too young. We had only just got back in touch a few years before through Facebook. It was like walking into an old telephone exchange, putting a jack into one of the sockets and being reconnected with part of me that I had long thought lost. I wrote about it on these pages last year.

So it felt like an act of immense kindness to me when her husband got in touch and described her last days, cared for by incredible staff, surrounded by family, remembering, laughing. So long, Sara. To this day I can still hear you laughing while waiting for the school train in the morning.

He also did me another favour of course. By sharing his story he helped me see death and dying in another light. It might seem irrational to you but my experiences meant I didn’t think it was possible to die in such a way. Now I do.

Here is the official bit from the Academy from yesterday.
National campaign launched to encourage conversations about death

  • Six in ten people answering feel they know little or nothing about the final hours of life.
  • More people get their understanding about dying from conversations with family and friends or personal experience, than from medical professionals.
  • People are most worried about loved ones being in pain or frightened in the final hours or minutes of life.
  • One third of the public opted not to answer questions about end of life, suggesting that the topic remains taboo for some.
  • The Academy of Medical Sciences launches new website, installation and public dialogue to empower the public to speak about this challenging topic.

New data released today (Thursday 9 May) shows that six in ten people answering feel they know, at most, “just a little” about what happens to a person in their final hours of life. This is despite one in two people who were asked saying they have been present with someone at the end of life.

The Academy of Medical Sciences worked with Ipsos MORI to survey 966 British adults aged 18+ through face-to-face interviews (of whom 612 answered the questions), as the Academy launches a new national campaign calling for us all to be better informed about death and dying, to understand public values when it comes to end of life care, and anticipate how medical science can help meet their wishes and needs.

Professor Sir Robert Lechler PMedSci, President of the Academy of Medical Sciences said:

“It is striking that six in tenpeople feel they know very little or nothing about what happens to a person at the end of life, despite half of people having been with someone when they died.

“People are as just as likely to get their information about what happens at the end of life from documentaries as they are from medical professionals, and just under half of people rely on conversations with friends and family. Without doubt this shows we need to do more to give people access to reliable information about what happens at the end of life and encourage conversations about this important topic.

“Not knowing what may happen to a loved one as they die can exacerbate fears at the hardest times of our life. It may also mean that people struggle to think clearly about how best to fulfil the wishes of a dying family member or friend, let alone know what to ask doctors and nurses.”

Potential poll participants were informed of the survey subject matter and given the opportunity to opt out of answering these sensitive questions. An unexpected one in three participants chose not to answer the questions, suggesting that many people feel very uncomfortable talking about death. Challenging this taboo is at the heart of the Academy’s national campaign.

The poll also revealed that those who know at least a little about what happens at the end of life are as likely to get their information about what happens at the end of life from documentaries (20%) as they are from medical professionals (22%). Interestingly, information from films, dramas and soaps (16%) also falls in the top 5 sources of information. The most common sources of information come from conversations with family and friends (42%) and personal experience of being with someone in the final hours/minutes of their life (33%).

Professor Dame Lesley Fallowfield FMedSci, Professor of Psycho Oncology, University of Sussex, said:

“TV and films rarely ever depict ‘normal’ deaths. For many individuals, death is a gentle, peaceful and pain-free event. Although grieving the loss of loved ones can be a difficult process, some people do speak about their loved one’s death as having been a positive experience. We need to demystify death and talk about it more.”

The biggest concern for members of the public about being with someone as they died is that they would be in pain, with 62% of people identifying this as their biggest worry. 52% of people were concerned the person dying may be frightened, and 40% were worried that the person dying might be panicked.

The Academy is opening an innovative new pop up installation in Lewisham Shopping Centre [open to the public for one month from 10 May] called The Departure Lounge, where the public can come and learn more about the end of life in an enticing and stimulating space. The pop up shop combines the metaphor of travel with findings from medical science and personal stories from the end of life to explore what it means to die well and empower the public to talk more openly about death and dying.

The conversation will be expanded nationally via a website [live 9 May] and digital campaign as well as 30 smaller versions of The Departure Lounge popping up across the UK. The Academy will be working with Ipsos MORI to get further public views to feed into a long term policy project which will seek to ensure that medical and health research and policy around end of life care, death and dying reflects what people consider to be important.

Dr Katherine Sleeman, NIHR Clinician Scientist and Honorary Consultant in palliative medicine, Cicely Saunders Institute at King’s College London, said:

“Many people don’t know much about what palliative or hospice care involves, and some people worry that starting conversations about end of life care might hasten death. In fact, the opposite may be true – research shows the earlier people access specialist palliative care the better their quality of life, and some studies have shown that people who receive early specialist palliative care actually live longer.”

Dying Matters is a good source of information for people who want to know more about what happens in the hours and days of life and what symptoms may represent the end of life [see notes to editors for resources].

The project was developed by the Academy of Medical Sciences in partnership with public engagement specialists The Liminal Space, and was supported by The Health Foundation and Wellcome Trust. The project launch is timed to coincide with Dying Matters Awareness week (13-19 May 2019).

– ENDS –

 

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