End of life care: Three fascinating conversations

End of life care: Three fascinating conversations

Reflections on the Art of Dying Well podcast, including interviews with Dr Kathryn Mannix and playwright Harriet Madeley.

Episode 15 of the Art of Dying Well podcast

Let’s hear it for the podcast. One of the advantages of this still relatively new medium is its responsiveness. Light on its feet and reliant on the bare minimum of technology it can react quickly to fast-moving events and change its agenda and running order even as the host is speaking.

In-depth discussion of current issues around death and dying

The podcast is versatile, too, and able to bring together into one space eclectic mixtures of guests to do nothing more (nor less) than talk to each other – leaving us to eavesdrop contentedly as if we were somehow invisibly in the room.

Such was the effect of the latest Art of Dying Well podcast which assembled three women with three very different experiences of working alongside those at the end of life.

The Colours – delving into end of life issues on stage

First up was actor and writer, Harriet Madeley, whose latest stage play, ‘The Colours’, features five people nearing the end of their lives talking with humour and honesty about their all too human condition.

Harriet, a talented actor herself, was the main creative force behind this unique piece of work. Based on interviews conducted with palliative care doctors and patients in Welsh seaside hospices, creatively moving through fantasy, memory and reality. The play was described in The Stage as ‘an immensely warm, humorous, poignant piece’ and recently finished a successful run at London’s celebrated Soho Theatre.

The fragility of life and the inevitability of its end

Asked why she had chosen this theme Harriet replied that she had found herself reflecting on her status as an only child while simultaneously considering the many miscarriages her mother had had as a younger woman. “I had this sense that I was very nearly not alive,” she said strikingly, “and therefore that I could very easily stop being alive”. It was clearly a shocking realisation but one she turned to her advantage in her work exploring in part the fragility of life and the inevitability of its end.

Interviews with hospice staff and residents

The play was based on interviews she conducted with the staff and residents of two hospices in Wales and subsequently wove into a narrative that mixes the personal with the universal. The theatre, she believes, is the perfect medium for humanising difficult subject matter and presenting it in fresh and surprising ways.

A liberating experience

Far from being depressing, Harriet said, it was a liberating experience – both for the residents and the actors – to be able to bring such material into the open and to present it in such an imaginative but altogether natural way.

She admitted she had had some negative feedback when sounding out the desirability of such a project in the first place. Wouldn’t it be an altogether gloomy experience, people wondered, not only gathering the raw material but presenting it on stage as “entertainment”? Such reservations, Harriet reassured us, melted away when people first
listened to the recorded interviews – as she herself knew they would even as she was recording them.

Death is a universal experience

Real people, real stories. Who can fail to be drawn in by such particular yet universal subject matter? It’s become a commonplace to say that hospices are not places where people come to die but where they come to live. And such has been Harriet’s experience of meeting people at the Ty Olwen Hospice in Swansea and the Velindre Cancer Centre in Cardiff where the recordings were made.

Transferring those experiences to a performance space in London’s achingly trendy Soho was the challenge the playwright, director and designer had to confront. But…ahem…this was drama after all and that’s what creative people do all the time – whether bringing Burnham Wood to a draughty church hall or Elsinore to the West End. Erm, it’s called theatre.

The need to be informative about palliative care

The image of sand came into the picture early on – both as the literal basis of the play’s beach location and as a metaphorical device for underscoring the inexorable passage of time. All this creative thinking was vital to the success of the production. Yes, it had to be informative about aspects of palliative care but, equally, it never had to lose sight of the inescapable fact that what the audience was turning up for was a drama not a lecture.

A potentially fatal diagnosis

Harriet’s insights were never less than fascinating but those insights took a radically unexpected turn when she disclosed that some time earlier she herself had been diagnosed with a potentially fatal liver condition for which life expectancy was reckoned to be somewhere between nine and eighteen years. So now this was personal.

Gradually she discovered that listening to people talking about simply living their lives under the imminent threat of mortality helped her to cope with the news. She appreciated people’s warmth and candour all the more and this appreciation clearly made its way into the finished production which has ended its run in London and now goes on tour.

So audiences will still be able to catch up with characters like Joe and Erica realising that a diagnosis of cancer, rather than being a full stop to everything, has suddenly become a springboard into a new life. A new and ultimately more fulfilling life than the one lived before.

Offsetting the fear of a terminal condition

It’s this life-affirming quality that Harriet hopes will offset the fear people experience when first diagnosed with a terminal condition. In other words the diagnosis can cease to be a death sentence and start to become an opportunity to find self-knowledge and real meaning in life – however long or short that life turns out to be. Or as the pioneer of palliative care, the late Cicely Saunders once said “You matter because you are you and you matter till the end of your life. We will do all we can not only to help you die peacefully but also to live until you die.”

Dr Kathryn Mannix on how explaining pain can lessen both fear and pain

From presenting hospice experiences on stage to learning about the three step analgesic staircase is a bit of a gear shift but that’s what a podcast can do with unselfconscious ease. And it’s what this podcast did with the help of the palliative care specialist, Dr Kathryn Mannix, who began with her conviction (born out of experience) that explaining pain can lessen pain. When those with painful, life-limiting conditions are helped to understand the
physical nature of what they’re experiencing and, in particular, how various medications will work on their system, much of the fear and a lot of the pain can be reduced too.

Palliative care and pain management

So she treated us to the mysteries of the analgesic staircase; a three-step process beginning with painkillers like paracetamol, progressing through the stronger agents like codeine and arriving at the third and final stage of morphine. “The trick,” she said, “is to take the pain away, not to take the brain away” before going on to explain persuasively that palliative care clinicians are now adept at gauging the right dose of medication for each individual to ensure that a patient is conscious and pain free.

From the Chaplain’s Chair

The podcast’s final contributor was Dr Lynn Bassett, a hospice chaplain, who introduced us to the concept of silence in the spiritual and physical care of terminally ill patients. But, she explained softly, there’s silence and there’s silence. What she had in mind was not simply the absence of words or an awkward pause in the conversation, or potentially worse, a visitor sitting mutely by the bedside reading a book.

The right kind of silence

No, the right kind of silence, she explained, was more a reassuring presence than an absence – an unspoken agreement by both parties to experience the silence together, fully appreciating it and being fully present together in that moment. It may take a bit of adjusting to but once people become comfortable in that silence they will find wonderful things happening in that safe and wordless space where people can talk of the things that really matter in life. “Communion” seems a pretty good word for it.

A natural conclusion of the life that has gone before

Just a few minutes earlier we had been hearing about drugs and the science of palliative care. Now we were being introduced to the art of silence. That’s what the best podcasts can do. “A good death is not an epilogue tagged onto the end of the book of life,” Lynn explained movingly. “It is a natural conclusion of the life that has gone before.”
So, yes, indeed. Let’s hear it for the podcast.

Listen and find out more about the Art of Dying Well podcast here.

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