Back in August the English newspaper, ‘The Independent’, ran an article on the phenomenon of Death Cafes (to which the link appears below). I got to skype with the founder of the Death Cafes here in the UK, Jon Underwood, last week.
As you’ll read in the article, “What is believed to be the first official British death cafe took place in September last year, organised by former council worker Jon Underwood. Since then, around 150 people have attended death cafes in London and the one I [the journalist] visited was the 17th such happening.
"We don't want to shove death down people's throats," Underwood says. "We just want to create an environment where talking about death is natural and comfortable." He got the idea from the Swiss model (cafe mortel) invented by sociologist Bernard Crettaz, the popularity of which gained momentum in the Noughties and has since spread to France.
Underwood is keen to start a death cafe movement in English-speaking countries and his website (deathcafe.com) includes instructions for setting up your own. He has already inspired the first death cafe in America and groups have sprung up in Northern England too.
Jon is an extremely affable and open person. It was a delight to connect and for us to share our work, which is so similar at heart. A Buddhist meditator, he was intrigued by the notion of our training being for those who want a conscious death, and undertook to distribute some flyers where appropriate.
Check out his website: (deathcafe.com) and to read the article, click on
As I reported a few days ago, the October 20th issue of New Scientist’s cover story is ‘Death’. The subtitle reads: ‘Inescapable…Universal…Uplifting, that last adjective suggestive of some deep insights to be shared. The accompanying drawing is very lively, especially considering it is all full of skeletons! Grinning, empty-eyed and boney figures play music, eat watermelon, sign-paint, smoke, serve soup from a huge tureen, and so on; there’s even a stray skeleton dog or two sniffing about for spare scraps.
Maybe that’s the first of the deep insights right there: Dying, being dead, is pretty much the same as living.
The first article starts with a poignant death scene: ‘Pansy’ dying peacefully one winter afternoon, her daughter Rosie and her friends, Blossom and Chippy by her side. As Pansy is expiring, they stroke and comfort her and, once she has finally drawn her last breath, they move her limbs and examine her mouth to make sure she is in fact dead. Twice, one of her friends, Chippy, tries to revive Pansy by beating on her chest, and that night Rosie keeps vigil by her mother’s side.
Those were some of the observations of researchers watching the death of a chimpanzee in December, 2008.’ ‘It is hard not to wonder what was going on in the minds of Rosie, Chippy and Blossom’ the article continues, ‘before and after Pansy’s death. Is it possible that they felt grief and loss? Did they ponder their own mortality? Until recently these questions would have been considered dangerously anthropomorphic and off-limits. But not any more’. And much more of interest follows around the evolution of not only behaviour around death but around body disposal too.
‘Plight of the living dead’ makes scary reading: we learn that in 1968 as team of men who formed the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death, in order to harvest organs for transplants began declaring dead some who were not but simply in deep coma. ‘Through more than 4000 years of history,' we read towards the end, ‘we have learned that human life is tenacious, and many signs of death are misleading. Yet today we dissect for their organs patients who in any era before 1968 would be considered very much alive.’ As I said, scary stuff.
Author of Immortality: Testing civilisation’s greatest promise, Stephen Cave, opines in his article ‘The Quest for Immortality’ that ‘Death gets bad press’ – because death is always an unwelcome guest, always comes too soon and is feared and loathed. He suggests that our fear of death, this ‘frantic defiance and denial’ result in some of our greatest achievements.’ It’s an interesting point and one I personally had not considered. Fascinating reading throughout and it was his concluding paragraphs that really caught my attention:
“[Researchers identified] an important distinction between conscious and non-conscious death reminders. The latter – subtle or subliminal prompts – tend to cause us to cling unthinkingly to the values of our community. This can be positive if those valued are positive, but can also be negative if they induce us to aggressively defend those values against others.
“Conscious death reminders, on the other hand, stimulate a more considered response, leading people to re-evaluate what really matters. The more we actively contemplate mortality, the more we reject socially imposed goals such as wealth or fame, and focus instead on personal growth or the cultivation of positive relationships.
“Which suggests that we do not yet think about death enough.”
There are two more articles. The first is ‘Earthly remains’ which will be of interest to those who want to know exactly what happens as the dead body breaks down (stages include putrefaction, active decay and then breakdown of the skeleton.) “It may not be pretty” concludes author Caroline Williams, “but it’s one of the few definites in life: ashes to ashes, dust to dust; in the end there’s not a lot left.”
The last article, ‘Don’t fear the reaper: most of us do but it doesn’t make sense’, probably grabbed me the least. The author Shelly Kagan is a philosopher and set out to show us that it’s not logical to be afraid of death and therefore we shouldn’t be. I reckon she misses a very basic point. That is, that we are not rational beings and so it’s an exercise in futility to try and argue away our feelings, especially one as loaded, as basic, as that of fear.
The psychotherapist in me was exasperated with her basis premise, and that feeling only escalated as I plodded through her totally lucid, logical argument. But maybe – as they say – that’s just me….
Archa Robinson, based in Cornwall, and offering her own groups on meditative living and dying (livinganddying.com.au), sent the name of this hospice to me today: the Dechen Shying Spiritual Care Center.
Situated in Ireland, overlooking the sea, its location is certainly 'to die for'!
A friend from the Uk who, like me, is interested in meditation and dying, sent me the name of the Dechen Shying Spiritual Care Center in Ireland.It provides care for the dying, and courses for those wishing to work there, too.
The location is, well, to die for! Check it out.
Though I've led meditation groups all over the world, yesterday's 'Turning In' -- a one-day workshop -- in Sydney's eastern suburbs, was a first for me.
Participants (of whom there were 20) were chiefly new to meditation, and clearly their expectations about meditation -- as hard work, dry and somewhat serious -- were blown apart. The schedule started with Osho Nataraj, a wonderful dance meditation of one hour's duration, and, after the breakfast break, was followed by Osho Nadabrahma, a much less active technique. The Vipassana sitting and walking meditation was preceded by some minutes of 'Gibberish' -- a fun way to release all the noise and activity in one's mind and any residual physical tension. In my experience, it's much easier to be still and silent, and to watch the various thoughts, feelings and bodily sensations that come and go, if one does some form of activity, such as Gibberish, first.
After lunch, to wake up our energy we danced to one of the tracks on Karunehs's wonderful 'Global Spirit.' From my place in the front, watching over the group, it was such a blast to see hjow enthusiastically everyone entered the dance....where only an hour ago they had all been like statues, serenely watching their breath. Such a clear demonstration of Osho's wonderfully rich vision that embraces the exuberant and the esoteric, that sees no contradition in letting the inner child out to play after the non-nonsense Buddhist Vipassana. No wonder he calls his take on meditation: Zorba the Buddha!
There was a time for discussion immediately after lunch, and then we launched into Hara Stop! -- a strategy by which to first find one's inner locus of consciousness or centering, and then to test if one can stay connected to it despite being immersed in a simulation of a busy day in the city. Osho Kundalini -- always a favourite, with its gentle shaking and dancing before the passive stages, was the final meditation.
After it, we all sat together to assess how the day had been. Asked to provide one word to sum up what the experience had given them, or their verdict on it, participants said, variously: "Bliss ... alive... balanced... serene... harmonious... interesting... outstanding", and more....
For my part, the workshop was as fun and enriching as any workshop I have led in Europe and elsewhere. I realised that I don't need to rush off overseas whenever I long to be immersed in this kind of experience! Like truth itself, it is right here, on my doorstep.
Our next scheduled workshop is Saturday February 5th: The Osho Retreat. See my workshop schedule for more details.
After facilitating two afternoon workshops at my former (Psychotherapy and Counselling) College, the Jansen Newman Institute in St Leonards, Sydney -- and some toing and froing of emails -- I've been accepted onto the program next year. I will be facilitating a 4-day elective on Meditation, in addition to facilitating some meditation sessions through the students' year which will, like any other subect, be mandatory.
It has been cheering to feel that the academic head has been totally supportive all through the negotiating period, and to have arrived at this happen agreement!
Having to design an elective, which includes an assignment that students are required to write up in the formal style along with academic referencing, puts meditation in a whole new framework for me, and I am stimulated with the challenge. I'd like to see the day when meditation is given an even larger time slot....
Love to hear from anyone else who has taught/ is teaching meditation in a similarly formal setting.
A passion I have developed this year is for photo-taking of the wonderful nature that surrounds me in and around where I am living in Sydney. A single leaf, a flower insisting on thrusting its way between bricks to participate in life, the many intriguing textures of walls and trees, the stupendous colours of tree trunks and their bark.... I am entranced!
To see a small slide show of some of my photos...
I spoke to an oncologist who told me about a twenty-nine-year-old patient she had recently cared for who had an inoperable brain tumor that continued to grow through second-line chemotherapy. The patient elected not to attempt any further chemotherapy, but getting to that decision required hours of discussion—for this was not the decision he had expected to make.
First, the oncologist said, she had a discussion with him alone. They reviewed the story of how far he’d come, the options that remained. She was frank. She told him that in her entire career she had never seen third-line chemotherapy produce a significant response in his type of brain tumor. She had looked for experimental therapies, and none were truly promising. And, although she was willing to proceed with chemotherapy, she told him how much strength and time the treatment would take away from him and his family.
He did not shut down or rebel. His questions went on for an hour. He asked about this therapy and that therapy. And then, gradually, he began to ask about what would happen as the tumor got bigger, the symptoms he’d have, the ways they could try to control them, how the end might come.
The oncologist next met with the young man together with his family. That discussion didn’t go so well. He had a wife and small children, and at first his wife wasn’t ready to contemplate stopping chemo. But when the oncologist asked the patient to explain in his own words what they’d discussed, she understood. It was the same with his mother, who was a nurse. Meanwhile, his father sat quietly and said nothing the entire time.
A few days later, the patient returned to talk to the oncologist. “There should be something. There must be something,” he said. His father had shown him reports of cures on the Internet. He confided how badly his father was taking the news. No patient wants to cause his family pain. According to Block, about two-thirds of patients are willing to undergo therapies they don’t want if that is what their loved ones want.
The oncologist went to the father’s home to meet with him. He had a sheaf of possible trials and treatments printed from the Internet. She went through them all. She was willing to change her opinion, she told him. But either the treatments were for brain tumors that were very different from his son’s or else he didn’t qualify. None were going to be miraculous. She told the father that he needed to understand: time with his son was limited, and the young man was going to need his father’s help getting through it.
The oncologist noted wryly how much easier it would have been for her just to prescribe the chemotherapy. “But that meeting with the father was the turning point,” she said. The patient and the family opted for hospice. They had more than a month together before he died. Later, the father thanked the doctor. That last month, he said, the family simply focussed on being together, and it proved to be the most meaningful time they’d ever spent.
Given how prolonged some of these conversations have to be, many people argue that the key problem has been the financial incentives: we pay doctors to give chemotherapy and to do surgery, but not to take the time required to sort out when doing so is unwise. This certainly is a factor. (The new health-reform act was to have added Medicare coverage for these conversations, until it was deemed funding for “death panels” and stripped out of the legislation.) But the issue isn’t merely a matter of financing. It arises from a still unresolved argument about what the function of medicine really is—what, in other words, we should and should not be paying for doctors to do.
The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.
More often, these days, medicine seems to supply neither Custers nor Lees. We are increasingly the generals who march the soldiers onward, saying all the while, “You let me know when you want to stop.” All-out treatment, we tell the terminally ill, is a train you can get off at any time—just say when. But for most patients and their families this is asking too much. They remain driven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve. But our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and to escape a warehoused oblivion that few really want.
There is no single way to take people with terminal illness through the process, but, according to Block, there are some rules. You sit down. You make time. You’re not determining whether they want treatment X versus Y. You’re trying to learn what’s most important to them under the circumstances—so that you can provide information and advice on the approach that gives them the best chance of achieving it. This requires as much listening as talking. If you are talking more than half of the time, Block says, you’re talking too much.
The words you use matter. According to experts, you shouldn’t say, “I’m sorry things turned out this way,” for example. It can sound like pity. You should say, “I wish things were different.” You don’t ask, “What do you want when you are dying?” You ask, “If time becomes short, what is most important to you?”
Block has a list of items that she aims to cover with terminal patients in the time before decisions have to be made: what they understand their prognosis to be; what their concerns are about what lies ahead; whom they want to make decisions when they can’t; how they want to spend their time as options become limited; what kinds of trade-offs they are willing to make.
Ten years ago, her seventy-four-year-old father, Jack Block, a professor emeritus of psychology at the University of California at Berkeley, was admitted to a San Francisco hospital with symptoms from what proved to be a mass growing in the spinal cord of his neck. She flew out to see him. The neurosurgeon said that the procedure to remove the mass carried a twenty-per-cent chance of leaving him quadriplegic, paralyzed from the neck down. But without it he had a hundred-per-cent chance of becoming quadriplegic.
The evening before surgery, father and daughter chatted about friends and family, trying to keep their minds off what was to come, and then she left for the night. Halfway across the Bay Bridge, she recalled, “I realized, ‘Oh, my God, I don’t know what he really wants.’ ” He’d made her his health-care proxy, but they had talked about such situations only superficially. So she turned the car around.
Going back in “was really uncomfortable,” she said. It made no difference that she was an expert in end-of-life discussions. “I just felt awful having the conversation with my dad.” But she went through her list. She told him, “‘I need to understand how much you’re willing to go through to have a shot at being alive and what level of being alive is tolerable to you.’ We had this quite agonizing conversation where he said—and this totally shocked me—‘Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.’
“I would never have expected him to say that,” Block went on. “I mean, he’s a professor emeritus. He’s never watched a football game in my conscious memory. The whole picture—it wasn’t the guy I thought I knew.” But the conversation proved critical, because after surgery he developed bleeding in the spinal cord. The surgeons told her that, in order to save his life, they would need to go back in. But he had already become nearly quadriplegic and would remain severely disabled for many months and possibly forever. What did she want to do?
“I had three minutes to make this decision, and, I realized, he had already made the decision.” She asked the surgeons whether, if her father survived, he would still be able to eat chocolate ice cream and watch football on TV. Yes, they said. She gave the O.K. to take him back to the operating room.
“If I had not had that conversation with him,” she told me, “my instinct would have been to let him go at that moment, because it just seemed so awful. And I would have beaten myself up. Did I let him go too soon?” Or she might have gone ahead and sent him to surgery, only to find—as occurred—that he survived only to go through what proved to be a year of “very horrible rehab” and disability. “I would have felt so guilty that I condemned him to that,” she said. “But there was no decision for me to make.” He had decided.
During the next two years, he regained the ability to walk short distances. He required caregivers to bathe and dress him. He had difficulty swallowing and eating. But his mind was intact and he had partial use of his hands—enough to write two books and more than a dozen scientific articles. He lived for ten years after the operation. This past year, however, his difficulties with swallowing advanced to the point where he could not eat without aspirating food particles, and he cycled between hospital and rehabilitation facilities with the pneumonias that resulted. He didn’t want a feeding tube. And it became evident that the battle for the dwindling chance of a miraculous recovery was going to leave him unable ever to go home again. So, this past January, he decided to stop the battle and go home.
“We started him on hospice care,” Block said. “We treated his choking and kept him comfortable.
Eventually, he stopped eating and drinking. He died about five days later.”
Susan Block and her father had the conversation that we all need to have when the chemotherapy stops working, when we start needing oxygen at home, when we face high-risk surgery, when the liver failure keeps progressing, when we become unable to dress ourselves. I’ve heard Swedish doctors call it a “breakpoint discussion,” a systematic series of conversations to sort out when they need to switch from fighting for time to fighting for the other things that people value—being with family or travelling or enjoying chocolate ice cream. Few people have this discussion, and there is good reason for anyone to dread these conversations. They can unleash difficult emotions. People can become angry or overwhelmed. Handled poorly, the conversations can cost a person’s trust. Handled well, they can take real time.
Can mere discussions really do so much? Consider the case of La Crosse, Wisconsin. Its elderly residents have unusually low end-of-life hospital costs. During their last six months, according to Medicare data, they spend half as many days in the hospital as the national average, and there’s no sign that doctors or patients are halting care prematurely. Despite average rates of obesity and smoking, their life expectancy outpaces the national mean by a year.
I spoke to Dr. Gregory Thompson, a critical-care specialist at Gundersen Lutheran Hospital, while he was on I.C.U. duty one recent evening, and he ran through his list of patients with me. In most respects, the patients were like those found in any I.C.U.—terribly sick and living through the most perilous days of their lives. There was a young woman with multiple organ failure from a devastating case of pneumonia, a man in his mid-sixties with a ruptured colon that had caused a rampaging infection and a heart attack. Yet these patients were completely different from those in other I.C.U.s I’d seen: none had a terminal disease; none battled the final stages of metastatic cancer or untreatable heart failure or dementia.
To understand La Crosse, Thompson said, you had to go back to 1991, when local medical leaders headed a systematic campaign to get physicians and patients to discuss end-of-life wishes. Within a few years, it became routine for all patients admitted to a hospital, nursing home, or assisted-living facility to complete a multiple-choice form that boiled down to four crucial questions. At this moment in your life, the form asked:
1. Do you want to be resuscitated if your heart stops?
2. Do you want aggressive treatments such as intubation and mechanical ventilation?
3. Do you want antibiotics?
4. Do you want tube or intravenous feeding if you can’t eat on your own?
By 1996, eighty-five per cent of La Crosse residents who died had written advanced directives, up from fifteen per cent, and doctors almost always knew of and followed the instructions. Having this system in place, Thompson said, has made his job vastly easier. But it’s not because the specifics are spelled out for him every time a sick patient arrives in his unit.
“These things are not laid out in stone,” he told me. Whatever the yes/no answers people may put on a piece of paper, one will find nuances and complexities in what they mean. “But, instead of having the discussion when they get to the I.C.U., we find many times it has already taken place.”
Answers to the list of questions change as patients go from entering the hospital for the delivery of a child to entering for complications of Alzheimer’s disease. But, in La Crosse, the system means that people are far more likely to have talked about what they want and what they don’t want before they and their relatives find themselves in the throes of crisis and fear. When wishes aren’t clear, Thompson said, “families have also become much more receptive to having the discussion.” The discussion, not the list, was what mattered most. Discussion had brought La Crosse’s end-of-life costs down to just over half the national average. It was that simple—and that complicated.
One Saturday morning last winter, I met with a woman I had operated on the night before. She had been undergoing a procedure for the removal of an ovarian cyst when the gynecologist who was operating on her discovered that she had metastatic colon cancer. I was summoned, as a general surgeon, to see what could be done. I removed a section of her colon that had a large cancerous mass, but the cancer had already spread widely. I had not been able to get it all. Now I introduced myself. She said a resident had told her that a tumor was found and part of her colon had been excised.
Yes, I said. I’d been able to take out “the main area of involvement.” I explained how much bowel was removed, what the recovery would be like—everything except how much cancer there was. But then I remembered how timid I’d been with [a previous patient], and all those studies about how much doctors beat around the bush. So when she asked me to tell her more about the cancer, I explained that it had spread not only to her ovaries but also to her lymph nodes. I said that it had not been possible to remove all the disease. But I found myself almost immediately minimizing what I’d said. “We’ll bring in an oncologist,” I hastened to add. “Chemotherapy can be very effective in these situations.”
She absorbed the news in silence, looking down at the blankets drawn over her mutinous body. Then she looked up at me. “Am I going to die?”
I flinched. “No, no,” I said. “Of course not.”
A few days later, I tried again. “We don’t have a cure,” I explained. “But treatment can hold the disease down for a long time.” The goal, I said, was to “prolong your life” as much as possible.
I’ve seen her regularly in the months since, as she embarked on chemotherapy. She has done well. So far, the cancer is in check. Once, I asked her and her husband about our initial conversations. They don’t remember them very fondly. “That one phrase that you used—‘prolong your life’—it just . . .” She didn’t want to sound critical.
“It was kind of blunt,” her husband said.
“It sounded harsh,” she echoed. She felt as if I’d dropped her off a cliff.
I spoke to Dr. Susan Block, a palliative-care specialist at my hospital who has had thousands of these difficult conversations and is a nationally recognized pioneer in training doctors and others in managing end-of-life issues with patients and their families. “You have to understand,” Block told me. “A family meeting is a procedure, and it requires no less skill than performing an operation.”
One basic mistake is conceptual. For doctors, the primary purpose of a discussion about terminal illness is to determine what people want—whether they want chemo or not, whether they want to be resuscitated or not, whether they want hospice or not. They focus on laying out the facts and the options. But that’s a mistake, Block said.
“A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances,” she explained. “There are many worries and real terrors.” No one conversation can address them all. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.