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How Doctors Die | Essay | Zócalo Public Square


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Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds–from 5 percent to 15 percent–albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how …

Read the full story here: How Doctors Die | Essay | Zócalo Public Square

On Losing My Mother


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As my mother entered the final phase of her life due to terminal cancer, these past few months I was faced with the challenge of putting A Course in Dying into practice. What was most remarkable to m

Read the full story here: On Losing My Mother

My First Death Café


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There’s a gathering buzz around the Death Café phenomenon – there have been 3859 in 40 countries including Iceland and South Korea – and so when one was announced in my ‘hood and in the perfect location, Kensal Green Cemetery’s Dissenter’s Chapel*, I knew I had to go. After all, I have said on numerous occasions that our ethos at AoA includes breaking through the death barrier. Not to live forever like the Immortalists*, but in order to shatter the taboo. I’ve also stated that I’d like to ‘review’ funerals but I have yet to be offered one.

The night before the Death Café – a social franchise where people gather, drink tea, eat cake, and discuss death with the stated aim ‘is to help people make the most of their (finite) lives’ – I started to research what was happening around death instead of the classic funeral. I found a video of a woman in Britain who picked up her mother’s body from the mortuary, placed it in her camper van and drove to a field where she and her friends dug a very deep hole and gently lowered her mother into it. No undertakers, no coffin, no service, this was the ultimate in DIY and legal. Excellent. But most people have no idea what is legal and what is not around death and dying.

Which is exactly why a Death Café is such good news. There’s so much to find out and exchange.

I invited my friend, Amanda who lives round the corner from me. We met in Ladbroke Grove outside the entrance. She had managed to ignore the Death part, and only seen the café. She thought she was meeting me for a coffee and a chat, although was slight bemused and bewildered at the location.

“No, it’s a Death Café where we’ll be talking about our mortality,” I whispered loudly whilst urging her into the newly decorated Dissenter’s Gallery which even has a little potential bar these days. And am instantly drawn to a large woven artwork by local artist, Zoe Landau Kouson , which looks as though it has writhing knots of brilliant breasts all over it. Feeding breasts, dancing breasts, tribal breasts, animal breasts and more.

Twelve of us sit in a circle on hard wooden chairs with the ideal Death café view – through the large nineteenth century iron gate – are the leaning gravestones, the modern graves and the Victorian tombs all thrown together in nature and peace.

The de rigeur tea and biscuits are pretty rudimentary – in Sussex they probably do a funereal spread with coffin cupcakes and Death by Chocolate – but hey, it’s the participants that count. And these people are marvelous in their eclecticism.

Mark, our unpaid facilitator during this two hour dialogue, has a skull broach on his lapel just for confirmation of his status. He explains the roots of the Death Café – originally Le Café Mortal started by Swiss anthropologist and sociologist, Bernard Crettaz in 2004 in order ‘to break the tyranny of silence around death’ – the idea was taken up by a mother, Sue Barsley Reid and son, Jon Underwood in Hackney,2010. They haven’t looked back. Death Cafés are popping up everywhere these days and a very good sign that is.

I remember writing an article in Time Out in the mid-80s at the height of the Aids deaths where I suggested that the advent of these often oh-too-young people leaving us so tragically would change our ways of dying forever. And to some extent, that has happened. Aids funerals were bold and brave and out there in a way that proclaimed we die as we live – there were coffins that stood up, there was waving to the coffins as they departed behind the curtain, there was Barbara Streisand singing. Funerals have become freer – I went to a Catholic one the other day and even that had much more individuality than in the past – and more personal. And yet open conversation about, for instance, plans for death and dying still remain rare.

And so, we share one by one about why we’ve come. I say that my 90 year old mother nearly died of sepsis recently, which has been instrumental in me thinking about wanting to take control of my own death. In some ways impossible but in other ways worth reflecting upon. And then I explain that I edit this magazine, and that we recently had an article where someone with a brain tumor living in Australia decided to buy some Nembutal so that he could enable his own death rather than wait for an increasingly painful end. Finally, he was in a hospice and could no longer play the harmonium, he found a window of opportunity, went to the toilet and took the Nembutal.

Before I know it, Amanda who thought she was just popping out for a little catch up, is talking about how she felt like an orphan as both her parents had died. An American woman wants to talk about cultural differences, another young man is becoming a hospice nurse and more that I’m not allowed to reveal because of the confidentiality clause.

I’m impressed by our collective energy and enthusiasm for the topic, and the multitude of attitudes and interests.

And I’m moved when we start to share more deeply about a good death might look like. Amanda talks passionately about wanting to die without the anguish that she felt both her parents experienced when they were approaching death. “I really want to be able to accept what’s happening,” she says. I really feel the depth of her sharing. This is Saturday morning, and suddenly there’s such an intimacy in this wonderful little chapel.

Talking so openly about death and what it means to us personally brings a warmth and closeness. There’s a feeling of community already where this sort of exchange is possible. It’s strangely exhilarating in the way that being about to talk about your secret desires and fears can be.

Josephine Speyer, a psychotherapist specializing in loss and bereavement, as well as being the co-founder of The Natural Death Centre (they do a great handbook about everything you need to know about death) who also holds Death Cafes is present. She has a softness that curls around us as she talks about a powerful moment when her husband appeared to her soon after he died. She’s also a keen advocate for death education and says that knowing what to do when her husband died suddenly, helped a lot.

There are moments of lightness too. One woman who is a friend of Kensal Green cemetery tells us about her favourite funeral. “It was one where my friend donated his body to science so there was no funeral, just a party in a restaurant where we remembered him.”

The representative from Dignity in Dying confesses that she hasn’t made a will. I haven’t either. But we are the minority in the room as Mark gets us to put our hands up. “Well, that is unusual,” he announces, “most people here have made their wills.”

The American couple don’t have children and they explain that making a will has felt like an act of generosity for them. Basically, they have given their assets to chosen family and friends, the result being that they feel content with their decisions.

Neither Amanda nor I want to leave. This is a dialogue we could have kept on contributing to and being fascinated by. Funnily enough, we left inspired, moved and determined to visit a Death Café again soon. There’s something so compelling about this level of realness.

 

 

 

Look up a Death Café near you on deathcafe.com or start one up yourself through the website.

*The Dissenter’s Chapel was built as part of Kensal Green Cemetery’s eastern part for non-Anglicans to perform their own rites, and is still in use for funerals today.

*There is now a Dissenter’s Gallery, which is managed by Michael Speechley, which is involved in all sorts of exciting projects including the Death Café. Dissentersgallery.com

*The Immortalists are a community in the US who believe that they will live forever.

 

Can I Embrace Death?


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I’ve just turned 49. I can hardly believe it. I feel young, often mischievous (close friends call me that) and alert in spirit, and yet, 49 is not considered young in body anymore and the evidence of age is becoming ever more apparent in my skin and around my eyes.

I’ve also noticed that as I’ve moved further into my forties, ageing, sickness and death have moved into my consciousness much more.

In March this year, I was forced to look ageing, illness and death straight in the eye with the death of my beloved aunt – a kind, patient and generous person (modest too) – aged 79. My aunt was like a second mum to my sister and I. She didn’t have a family of her own and was very much a part of our childhood, supporting my single mum and often holidaying with us.

During the last two years of her life she suffered unbearable emotional and physical pain, endured endless operations and was in and out of hospital. Despite a strong will to live, her body could not take any more.

I got a call from my mother just before Easter, saying that I needed to come. I was just about to go on a two-week retreat in the Scottish Highlands but I changed plans, booked a flight to Germany and went straight to hospital from the airport. I got to spend the final hours with her, witnessing her last breath just after 5am – something I’ll never forget. She was gone forever.

Death as we all know, is the one certainty we all share in life and yet it is something we find very uncomfortable to sit with, to talk about.

Can we find a way to turn towards that which many of us consider the most intolerable and painful experiences in life – ageing, sickness and death – with an open heart-mind? They are, after all, experiences that we all have to face – whether we want it or not.

Would we find it easier to talk about ageing and death if we learnt to relax into and accept that the life is a process, a continuous cycle of becoming and ceasing, embedded in a larger cosmic cycle of life and death.

Seeing my aunt’s suffering caused me enormous emotional pain. It also taught me a lot about myself. I discovered that the distress that I was experiencing came from not wanting to accept her suffering and from not knowing how to tolerate the unbearable. I wanted it my way; I wanted my aunt to be well again, I didn’t want her to suffer. I didn’t want to suffer seeing her suffering.

When I was able to see things as they were, when I was able to sit and see my aunt’s sick and decaying body, and the presence of her nearing death for what it was, I felt something in me relax and soften, which helped me to turn towards the experience with patience. I was then able to offer a loving attitude towards my own pain and discomfort in the midst of the unbearable.

Taking responsibility for one’s death

My aunt’s death was also a wakeup call for me to reflect on my own death and to begin to take responsibility for it.

My aunt had no will and this caused much difficulty for my family.

Shortly after my aunt’s death, I made an appointment with a solicitor to make a will. I asked two of my closest friends to become my executors. I asked another friend whether she would be willing to lead my memorial service. I decided to be simply buried in a green burial – to dissolve back into nature.

By taking responsibility for my death, I must face up to the fact that I too will die, that I too may suffer from sickness, that I too may need care, that I too will leave a life and affairs behind for others to deal with.

Taking responsibility for our own death is a tremendous gift to ourselves and to the people we leave behind.

Accepting the life/death cycle – turning towards what is intrinsic and inevitable in life, rather than pretending it doesn’t happen; to feel enriched and empowered by the cycle of life and death we are all born into.

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