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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

My first death


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Unlike many people of my vintage, I'd never experienced dying up close. Last year the universe sent me on a crash course, reuniting me with my friend Bob whom I’d met at university in 1979. This isn't just a story of death. It's one of friendship, the kind that doesn't need Facebook Likes to remind it. I hadn’t seen or spoken to Bob in 26 years but it seems he'd been sitting in my subconscious. 'Bob' is how I've always introduced myself at parties when I don't really know anyone. It sorts the dull men from the potential. I bought a cult toy back from New York years ago. It had a name but I renamed it Bob. For some unknown reason my godchildren call several of their toys Bob.

I wasn’t meant to be in Melbourne last August. I was meant to be working in Qatar. I didn’t care for the place but, unusually, I'd taken a contract purely for the money. They took the job away the day I arrived so I flew to Australia. Three weeks later as I was suggesting to a policeman he should close Melbourne’s meth labs, instead of fining me for my inability to cross at the lights, my sister switched on her car radio and heard an interview with Bob who'd become a famous children’s screenwriter. And then she heard the words ‘brain tumour.’ Bob had a Stage Four Glioblastoma Multiforme.

“Fancy name,” he said when me met. “Basically, it means Mr Imminent is at the door.”

The boy from Western Australia wasn't just my friend. He was my Lebanese mother's adopted Jewish son and a favoured guest at family gatherings. It took us one three-hour conversation to reignite our friendship. After that we were inseparable. I stayed at his flat and looked after him. People said later "You're amazing for doing that." I told them I was fortunate to be with Bob again.I wasn't there because he was dying. I wanted to be with my intelligent, incendiary and incredibly funny friend.

"I've taken up smoking again Leens," he said when we met. “I figured I’d die from lung cancer instead. That way people won’t feel sorry for me, they'll just say I deserved it.”

These past months have been a time of fierce joy shadowed by despair and tears. Joy generally doesn't turn up without conditions. There were times we both knew we'd never be more alive: I can't recall rolling on the kitchen floor with laughter in many, many years. Bob looked after me as much as I cared for him, reconnecting me to people from our mutual past and introducing me to the parcel of scriptwriters, cyclists and musicians who coloured his life. At night feasting on Lebanese food parcels from my mum with a film primed to go, he’d grab my hand and say, “It doesn’t get better than this Leens. We’re living like kings.” Bob liked a ritual. We sat at the kitchen table as he smoked his evening cigarettes, then hugged each other before he wobbled off to bed. As people heard our story they shook their heads in disbelief. “You’re meant to be together for this time.”

Somehow I found strength when he needed it, shoring him up before hospital visits and distracting him from the demons who inconveniently popped up when we were trying to enjoy the moment.In January 2016, the Glioblastoma brought out the heavies. The seizures started and his left side was no longer his. I kept telling myself it would be ok. As aggressive as the tumour was, he wasn't in pain. I didn’t figure on the emotional suffering, the anguish of having a lucid brain in better working order than most healthy people ever have. Very early on he'd told me he wasn’t going to let the cancer decide. Following his diagnosis he'd done copious amounts of of reading on the Glioblastoma and joined Exit International. "I've got Nembutal," he told me. He'd bought it from China. "When the time is right, I'll use it." We knew it would be more difficult when he went into palliative care, but Bob knew all the legalities as did a close circle of friends. As long as we weren't there, he could do whatever he wished. Endless discussions were held about how to get around the first part of that sentence, but it wasn't possible. We all hoped he wouldn't do it but we also knew that was just the living being selfish.

Those eight weeks Bob spent in palliative care - far longer than most people- showed me why we need to be able to make choices about what we think is a good death. Opposite Bob lay Graham, drugged to the eyeballs and getting increasingly foetal everyday. Quality of life is an individual issue and Bob knew this wasn't the dignified manner in which he wished to die. He’d pushed himself mentally and physically all his life, and to be reduced to whimpering in the manner of a wounded kangaroo wasn’t in his plans. It was his wish and mine that I’d be rubbing his head when he died. Instead, along with a few other confidantes, I was reduced to distant bystander, wondering when it would be. The deadline kept shifting but two weeks ago it was patently obvious he'd had enough. Earlier that week he'd had a huge setback when his right hand seized, as he was playing his beloved harmonica. The last thing he liked doing was now out of reach.

I saw him 24 hours before he died. I'd already been to see him that day but at 6pm I was struck by a sudden urgency to be with him. When I arrived he was in his wheelchair staring at the wall. He looked so vulnerable, confused and childlike.

"Hello," I said, coming up behind him. He was startled.

"Who's that?"

"Me Bobby. What are you doing?"

"Dreaming. I think I was dreaming." It was the way he said it but watching this huge character, this giant of a man suddenly dissolve into a lost child was too much for me.

I put my arms around him. He sparked up for a while, he asked me if I had plans because he was worried I didn't plan enough and then he was tired. We hugged which we always did and he played with my hair not wanting to let go. Because I was trying to be grown-up and strong, the sobbing accelerated. Now he was comforting me. “I don’t say I love you enough Leens, but it sounds trite.” I told him it wasn’t but trite itself was highly overused and beneath him. He laughed. I cried all through the night and into the next morning. I figured we'd have a few more days but his calmness worried me. They put him on watch the night he died because he'd yelled at the psychiatrist but he was a clever bastard. He found a window around 10pm. It was time enough to wheel himself into the toilet, mix up the bitter powder, drink it and get back into bed. He fell asleep for the last time.

Bob detested the smiley cancer industry. Like Hitchens, the idea that he was fighting a brave battle was swatted aside. “It’s a fucking illness,” he said. The prevailing narrative of survivors and bravery overlooks the reality that most people diminish and die in the most painful circumstances. From the moment you're diagnosed as terminal, death becomes a process based on a collective view of what is best. I'm not questioning palliative care: it's one of the only alternatives we have. But it's not for everyone (and by the way how many doctors do you see curled up in palliative care?) While we ramp up the fetishisation of cancer and parade those who've fought the good battle, it seems to me we're avoiding the hard discussion, the one about most people dying horrible deaths and being unable to die the way they choose.

All Bob wanted was a few people to be around him at the end. But because he didn't follow the script, he had to die alone. It's not so much his death that upsets me: it's that I wasn't allowed to be there to rub his head.

TV Icon Mary Tyler Moore Dead At 80 | The Huffington Post


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TV icon Mary Tyler Moore died on Wednesday after being hospitalized in Connecticut, her rep confirmed to The Huffington Post. She was 80.

“Today, beloved icon, Mary Tyler Moore, passed away at the age of 80 in the company of friends and her loving husband of over 33 years, Dr. S. Robert Levine. A groundbreaking actress, producer, and passionate advocate for the Juvenile Diabetes Research Foundation, Mary will be remembered as a fearless visionary who turned the world on with her smile,” her rep Mara Buxbaum told The Huffington Post in a statement.

Read the full story here: TV Icon Mary Tyler Moor Dead at 80 | The Huffington Post

George Michael obituary: “a full scale phenomenon”


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george-michael Gill Allen/AP

George Michael, who has died aged 53, was Britain’s biggest pop star of the 1980s, first with the pop duo Wham! and then as a solo artist. After Wham! made their initial chart breakthrough with the single Young Guns (Go for It) in 1982, Michael’s songwriting gift brought them giant hits including Wake Me Up Before You Go-Go and Careless Whisper, and they became leading lights of the 80s boom in British pop music, alongside Culture Club and Duran Duran. His first solo album, Faith (1987), sold 25m copies, and Michael sold more than 100m albums worldwide with Wham! and under his own name.

Read the full story here: George Michael obituary: "a full scale phenomenon"

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.

 

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