Maneesha James Blog

Tibetan Buddhist Hospice in Ireland

Sat, 04 Dec 2010 01:20:00 GMT

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'!

Irish Hospice

Sat, 04 Dec 2010 00:58:00 GMT

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.

First Meditation Group in Australia!

Sun, 07 Nov 2010 03:28:00 GMT

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.

'Lecturing' in Meditation

Fri, 22 Oct 2010 03:40:00 GMT

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.

This item has no title.

Mon, 11 Oct 2010 20:58:00 GMT

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...

http://www.oshonews.com/wp-login.php

The New Yorker 'Letting Go' 6th and Final Part

Sun, 12 Sep 2010 01:55:00 GMT

THE NEW YORKER

Letting Go

What should medicine do when it can’t save your life?

by Atul Gawande August 2, 2010

An extract: Part 6

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.

***

The New Yorker 'Letting Go' Part 5/6

Sun, 12 Sep 2010 01:53:00 GMT

THE NEW YORKER

Letting Go

What should medicine do when it can’t save your life?

by Atul Gawande August 2, 2010

An extract: Part 5

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.

Part 6 follows

***

The New Yorker 'Letting Go' Part 4/6

Sun, 12 Sep 2010 01:51:00 GMT

THE NEW YORKER

Letting Go

What should medicine do when it can’t save your life?

by Atul Gawande August 2, 2010

An extract: Part 4

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.

Part 5 follows

***

The New Yorker 'Letting Go' Part 3 of 6

Sun, 12 Sep 2010 01:48:00 GMT

THE NEW YORKER

Letting Go

What should medicine do when it can’t save your life?

by Atul Gawande August 2, 2010

An extract: Part 3

In 1985, the paleontologist and writer Stephen Jay Gould published an extraordinary essay entitled “The Median Isn’t the Message,” after he had been given a diagnosis, three years earlier, of abdominal mesothelioma, a rare and lethal cancer usually associated with asbestos exposure. He went to a medical library when he got the diagnosis and pulled out the latest scientific articles on the disease. “The literature couldn’t have been more brutally clear: mesothelioma is incurable, with a median survival of only eight months after discovery,” he wrote. The news was devastating. But then he began looking at the graphs of the patient-survival curves.

Gould was a naturalist, and more inclined to notice the variation around the curve’s middle point than the middle point itself. What the naturalist saw was remarkable variation. The patients were not clustered around the median survival but, instead, fanned out in both directions. Moreover, the curve was skewed to the right, with a long tail, however slender, of patients who lived many years longer than the eight-month median. This is where he found solace. He could imagine himself surviving far out in that long tail. And he did. Following surgery and experimental chemotherapy, he lived twenty more years before dying, in 2002, at the age of sixty, from a lung cancer that was unrelated to his original disease.

“It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity,” he wrote in his 1985 essay. “Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die—and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy—and I find nothing reproachable in those who rage mightily against the dying of the light.”

I think of Gould and his essay every time I have a patient with a terminal illness. There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The trouble is that we’ve built our medical system and culture around the long tail. We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.

When there is no way of knowing exactly how long our skeins will run—and when we imagine ourselves to have much more time than we do—our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do.

They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?

In late 2004, executives at Aetna, the insurance company, started an experiment. They knew that only a small percentage of the terminally ill ever halted efforts at curative treatment and enrolled in hospice, and that, when they did, it was usually not until the very end. So Aetna decided to let a group of policyholders with a life expectancy of less than a year receive hospice services without forgoing other treatments. [For example, a patient] could continue to try chemotherapy and radiation, and go to the hospital when she wished—but also have a hospice team at home focussing on what she needed for the best possible life now and for that morning when she might wake up unable to breathe.

A two-year study of this “concurrent care” program found that enrolled patients were much more likely to use hospice: the figure leaped from twenty-six per cent to seventy per cent. That was no surprise, since they weren’t forced to give up anything. The surprising result was that they did give up things. They visited the emergency room almost half as often as the control patients did. Their use of hospitals and I.C.U.s dropped by more than two-thirds. Over-all costs fell by almost a quarter.

This was stunning, and puzzling: it wasn’t obvious what made the approach work. Aetna ran a more modest concurrent-care program for a broader group of terminally ill patients. For these patients, the traditional hospice rules applied—in order to qualify for home hospice, they had to give up attempts at curative treatment. But, either way, they received phone calls from palliative-care nurses who offered to check in regularly and help them find services for anything from pain control to making out a living will. For these patients, too, hospice enrollment jumped to seventy per cent, and their use of hospital services dropped sharply. Among elderly patients, use of intensive-care units fell by more than eighty-five per cent. Satisfaction scores went way up. What was going on here? The program’s leaders had the impression that they had simply given patients someone experienced and knowledgeable to talk to about their daily needs. And somehow that was enough—just talking.

The explanation strains credibility, but evidence for it has grown in recent years. Two-thirds of the terminal-cancer patients in the Coping with Cancer study reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death. But the third who did were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive-care unit. Two-thirds enrolled in hospice. These patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Moreover, six months after the patients died their family members were much less likely to experience persistent major depression. In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.

PART 4 follows
***

The New Yorker 'Letting Go' When medicine can't save your life. PART 1

Sun, 12 Sep 2010 00:27:00 GMT

THE NEW YORKER

Letting Go

What should medicine do when it can’t save your life?

by Atul Gawande August 2, 2010

An extract (I’ve dropped the patient’s stories for the sake of brevity)

Modern medicine is good at staving off death with aggressive interventions — and bad at knowing when to focus, instead, on improving the days that terminal patients have left.

If you were the one who had metastatic cancer—or, for that matter, a similarly advanced case of emphysema or congestive heart failure—what would you want your doctors to do?

The issue has become pressing, in recent years, for reasons of expense. The soaring cost of health care is the greatest threat to the country’s long-term solvency, and the terminally ill account for a lot of it. Twenty-five per cent of all Medicare spending is for the five per cent of patients who are in their final year of life, and most of that money goes for care in their last couple of months which is of little apparent benefit.

Spending on a disease like cancer tends to follow a particular pattern. There are high initial costs as the cancer is treated, and then, if all goes well, these costs taper off. Medical spending for a breast-cancer survivor, for instance, averaged an estimated fifty-four thousand dollars in 2003, the vast majority of it for the initial diagnostic testing, surgery, and, where necessary, radiation and chemotherapy. For a patient with a fatal version of the disease, though, the cost curve is U-shaped, rising again toward the end—to an average of sixty-three thousand dollars during the last six months of life with an incurable breast cancer. Our medical system is excellent at trying to stave off death with eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day intensive care, five-thousand-dollar-an-hour surgery. But, ultimately, death comes, and no one is good at knowing when to stop.

The subject seems to reach national awareness mainly as a question of who should “win” when the expensive decisions are made: the insurers and the taxpayers footing the bill or the patient battling for his or her life. Budget hawks urge us to face the fact that we can’t afford everything. Demagogues shout about rationing and death panels. Market purists blame the existence of insurance: if patients and families paid the bills themselves, those expensive therapies would all come down in price. But they’re debating the wrong question. The failure of our system of medical care for people facing the end of their life runs much deeper. To see this, you have to get close enough to grapple with the way decisions about care are actually made.

Recently, while seeing a patient in an intensive-care unit at my hospital, I stopped to talk with the critical-care physician on duty, someone I’d known since college. “I’m running a warehouse for the dying,” she said bleakly. Out of the ten patients in her unit, she said, only two were likely to leave the hospital for any length of time. More typical was an almost eighty-year-old woman at the end of her life, with irreversible congestive heart failure, who was in the I.C.U. for the second time in three weeks, drugged to oblivion and tubed in most natural orifices and a few artificial ones. Or the seventy-year-old with a cancer that had metastasized to her lungs and bone, and a fungal pneumonia that arises only in the final phase of the illness. She had chosen to forgo treatment, but her oncologist pushed her to change her mind, and she was put on a ventilator and antibiotics. Another woman, in her eighties, with end-stage respiratory and kidney failure, had been in the unit for two weeks. Her husband had died after a long illness, with a feeding tube and a tracheotomy, and she had mentioned that she didn’t want to die that way. But her children couldn’t let her go, and asked to proceed with the placement of various devices: a permanent tracheotomy, a feeding tube, and a dialysis catheter. So now she just lay there tethered to her pumps, drifting in and out of consciousness.

Almost all these patients had known for some time that they had a terminal condition. Yet they—along with their families and doctors—were unprepared for the final stage. “We are having more conversation now about what patients want for the end of their life, by far, than they have had in all their lives to this point,” my friend said. “The problem is that’s way too late.”

In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression. Spending one’s final days in an I.C.U. because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or “It’s O.K.” or “I’m sorry” or “I love you.”

People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.

Part 2 follows
***

The New Yorker 'Letting Go' When medicine can't save your life PART 2

Sun, 12 Sep 2010 00:25:00 GMT

THE NEW YORKER

Letting Go

What should medicine do when it can’t save your life?

by Atul Gawande August 2, 2010

An extract

PART 2

In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.

The author recounts accompanying a hospice nurse on her visit to see patient at home…. He concludes: “I confessed that I was confused by what [the nurse] was doing. A lot of it seemed to be about extending [the patient’s] life. Wasn’t the goal of hospice to let nature take its course?

“That’s not the goal,” [the hospice nurse] said. The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in your priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focussing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.

Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise.

In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer. When Cox was transferred to hospice care, her doctors thought that she wouldn’t live much longer than a few weeks. With the supportive hospice therapy she received, she had already lived for a year.

[The hospice nurse mentioned earlier] enters people’s lives at a strange moment—when they have understood that they have a fatal illness but have not necessarily acknowledged that they are dying. “I’d say only about a quarter have accepted their fate when they come into hospice,” she said. When she first encounters her patients, many feel that they have simply been abandoned by their doctors. “Ninety-nine per cent understand they’re dying, but one hundred per cent hope they’re not,” she says. “They still want to beat their disease.” The initial visit is always tricky, but she has found ways to smooth things over. “A nurse has five seconds to make a patient like you and trust you. It’s in the whole way you present yourself. I do not come in saying, ‘I’m so sorry.’ Instead, it’s: ‘I’m the hospice nurse, and here’s what I have to offer you to make your life better. And I know we don’t have a lot of time to waste.’ ”

Hospice has tried to offer a new ideal for how we die. Although not everyone has embraced its rituals, those who have are helping to negotiate an ars moriendi for our age. But doing so represents a struggle—not only against suffering but also against the seemingly unstoppable momentum of medical treatment.

You’d think doctors would be well equipped to navigate the shoals [about how to address the question of patients’ often-unrealistic life expectancy], but at least two things get in the way. First, our own views may be unrealistic. A study led by the Harvard researcher Nicholas Christakis asked the doctors of almost five hundred terminally ill patients to estimate how long they thought their patient would survive, and then followed the patients. Sixty-three per cent of doctors overestimated survival time. Just seventeen per cent underestimated it. The average estimate was five hundred and thirty per cent too high. And, the better the doctors knew their patients, the more likely they were to err.

Second, we often avoid voicing even these sentiments. Studies find that although doctors usually tell patients when a cancer is not curable, most are reluctant to give a specific prognosis, even when pressed. More than forty per cent of oncologists report offering treatments that they believe are unlikely to work. In an era in which the relationship between patient and doctor is increasingly miscast in retail terms—“the customer is always right”—doctors are especially hesitant to trample on a patient’s expectations. You worry far more about being overly pessimistic than you do about being overly optimistic. And talking about dying is enormously fraught.

PART 3 follows

***

Workshops for Student Therapists

Tue, 07 Sep 2010 06:56:00 GMT

Hi Friends,
suddenly a spate of activity on my blog after a silence of some weeks. Not because I've been sitting about twiddling my thumbs; au contraire!

I've written earlier, here, of the workshop for volunteer palliative care workers at Greenwich Hospital, Sydney. More recently I ran an afternoon workshop at my former college (Jansen Newman Institute, St. Leonards) for student therapists. (To see their feedback, go to maneeshajames.com/Testimonials). It was a gas facilitating that session (and amusing to see my name down as 'Lecturer' on the formal feedback form: a 'Meditation Lecturer'? -- something of an oxymoron!)

A repeat of this workshop is due on September 20th. I've also been invited to design a meditation workshop for nurses by the head of nursing at Greenwich Hospital, and a fellow therapist has proposed a workshop for practising therapists.

All these developments are exciting -- I love teaching! -- and the challenge for me is to put all that I've gained through my years with Osho, my meditation master, into a language that is accessible to whomever I am talking, while not compromising its integrity. There are many therapeutic modalities being developed these days that utilise various facets of the meditative approach. And there are some writers, too, who combine expertise in their field with their understanding and experience of meditation, a case in point being Jon Kabat-Zinn. I've been reading (again) David Wallin's terrific book, Attachment in Psychotherapy, as he has so much to say about 'mindfulness' and therapy that I find intriguing and with which, for the most part, I agree.

So, exciting times!

Eulogy: a UK magazine on Death

Tue, 07 Sep 2010 06:23:00 GMT

British Broadcasting CorporationHome

2 August 2010 Last updated at 11:48 GMT By Mario Cacciottolo BBC News

A magazine and website have been launched which discuss the topic of death and dying, using a mixture of celebrity culture and real-life experiences. But are the characteristically reticent British ready to talk about their mortality in this way?

For something that happens more than 1,000 times a day in the UK, death may appear to be under-represented as a, if you'll excuse the marketing jargon, consumer issue.

“Start Quote

The baby boomer generation lived how they wanted to live, and I suspect they will want to die how they want to die”

End Quote Jim Thornton Co-founder Eulogy

Browse through the magazine racks of a well-stocked newsagents and all the other big life events are catered for. There are periodicals dedicated to seminal life events such as marriage, parenthood, buying a new home as well as other life stages and niche interests.

Jim Thornton is hoping to add his journal to this roster of titles. Called Eulogy, it is a newly-launched magazine and website that discusses death, dying, and the practicalities faced by those left behind. It doesn't sound like the sort of publication one would leap up from the sofa and tear open on hearing it drop through the letterbox each month.

Mr Thornton, a 47-year-old creative director of a communications company, says he was prompted into bringing Eulogy to life after suffering tragedy in his own family.

"Both my in-laws died in separate car accidents within 14 months of each other. This made me realise that there's no central resource for support, comfort or advice. Arranging a funeral is like arranging a wedding, only you have one week in which to do it, and you're not emotionally prepared for it."

Cultural influences

Mr Thornton talks about the need for the "cultural zeitgeist" to allow a publication which discusses mortality to become palatable among the public.

He cites Princess Diana's death as something of a milestone and mentions recent examples, such as the extended coverage given to reality star Jade Goody's funeral, actress Natascha McElhone writing a book about her husband's sudden death, and actress Sheila Hancock discussing the passing of her husband, the actor John Thaw.

Eulogy's first edition contains interviews with several celebrities

And he describes the regular tributes paid by ordinary members of the public, to repatriated soldiers killed in Afghanistan and whose bodies pass through Wootton Bassett, as "quite astonishing".

He adds: "People are talking about death in a much more open and less morbid way.

"The baby boomer generation lived how they wanted to live, and I suspect they will want to die how they want to die, although we will not advocate any particular form of dying."

He also believes that the blending of the nation's population with other cultures has shifted the UK's perception and attitude.

"I think it's one of the advantages of multi-culturalism, as it's loosened up how people treat death and approach funerals.

"Ghanaians, for example, have an industry where they decorate coffins in things the deceased were passionate about. We're seeing influences of that over here now, I've heard of a man having his gravestone as a BMW complete with parking ticket.

Funeral streaming

Jim Thornton started Eulogy after experiencing two sudden deaths in his own family

"As British we were stiff-lipped, but now we're encouraged to celebrate life, and not the death."

The first edition's editorial contains several interviews with personalities such as Emma Freud and Molly Parkin, but Mr Thornton says content will become a mix of "personality, real life, issues and debates".

The magazine is intended to drive people towards the website, which will be free to browse, and is being developed in stages.

Eventually, the site will have the ability to stream funerals live, so people abroad can see a loved one laid to rest, he promises.

There will be advice on arranging funerals, discussions on legal matters surrounding someone's will, and also a "online vault" where people can place photos, videos and messages in tribute to a loved one.

Professor Tony Walter runs a masters degree in Death and Society at the University of Bath.

He says while Eulogy is the first monthly magazine on the topic of death he has heard of, death itself is not the taboo that many think of it as.

Afterlife discussion

He refers to a study he conducted with colleagues in the mid 1990s, which examined the coverage of all the major UK newspapers.

“Start Quote

I do plenty of funerals and I'm astounded at how many people talk about death after it has happened to a loved one, but not before.”

End Quote Rev Simon Heron

"About 50% of the stories and photographs were about death, and this will go up at a time of a crisis.

"Death is not a taboo subject among the media or in society, but the question is whether it's something that happens enough to an individual to bring in regular custom for a magazine. It's difficult to predict whether its content will be helpful.

"In the 1990s I wrote a book about afterlife beliefs, and found that people couldn't stop talking to me about that topic, whether it was about the concept of heaven or reincarnation.

"But I later wrote a book about death itself and people weren't so keen to talk about that."

The Reverend Simon Heron is a Church of England priest in Frindsbury, Kent. He posted on Twitter that, having seen the launch edition of Eulogy, he suspected "the first issue may well be the last".

Why the scepticism? Mr Heron doubts that "society is ready for something like this" because, he believes, dying is not topic that people want to look forward to.

"I don't think enough people talk about death," he says. "I do plenty of funerals and I'm astounded at how many people talk about death after it has happened to a loved one, but not before.

"I was no more convinced when I put [the first edition[ down. I couldn't see who they are trying to market it to."

'Changing attitudes'

But Tom Memery, development director at Omega, the national association for end of life care, says having a magazine covering "these difficult subjects" was a "positive move for society".

"Any new initiative that tackles issues around death and dying is to be supported," says Mr Memery. "I think the advertising in the magazine could be a useful resource. Just as parents looking for a nanny might read The Lady, there may be some services people can find here.

"But I find it hard to contemplate who might buy it - 500,000 people die in the UK every year and people are more willing to address bereavement when it happens to them, but I can't see them dashing to the newsagent to buy this magazine.

"Would people want to read this when they were distraught?"

Mr Memery says he would welcome more mainstream media coverage of death and dying, such as national newspapers discussing these "really challenging subjects".

"Only then do I think we will start to change attitudes."

Write Away!

Tue, 07 Sep 2010 06:17:00 GMT

Write Away!

Expressive Writing as a Healing Tool

Waiting to see an oncologist this morning ( happily, not as a client but as a counsellor) this morning, I came across this aricle by Dr Karen Baikie, a clinical psychologist based in Sydney. It's from a magazine, Verve, for women with breast cancer...

Because emotional memories are stored as fragments in different parts of the brain (unlike factual memories), chronology and sequencing are absent, “ so we tend to remember pieces and not necessarily in the right order, which can amplify the trauma and the stress we feel from the event, because we cannot remember enough o resolve it…. When we write it tends to be in a more autobiographical form; that is, we tend to write in stories.

“So, as we disclose our thoughts and feelings related to a traumatic event, we are actually putting them into a sequence [and making them facts] ….and ultimately stripping the emotion away. Emotional writing helps us top re-organise and restructure traumatic, emotional memories. “

Guidelines for Expressive Writing

1) Write in a place and at a time where you will be undisturbed

2) Write for 20 minutes without pausing 3-5 times weekly

3) Write by hand or computer, whichever is faster

4) No need to worry about grammatical structure, spelling mistakes etc; the flow’s the thing!

5) Write about whatever is troubling you – deep thoughts and feelings about an event or situation that has deeply affected you

6) It’s fine if you write about the same event each session, or about something different each time.

7) You may feel vulnerable afterwards. Have a friend at hand whom you can, at least, call, if needed.

Outcomes include…

* Fewer illness-related visits to the doctor

* Fewer days in hospital

* Reduced absenteeism from work

* Quicker re-employment after job loss

* Improved memory, and immune system functioning

* Improved moods

* Lowered blood pressure

For more about the originator of Expressive Writing, visit…

www.utexas.edu/features/2005/writing

An Introduction to Meditation workshop

Wed, 04 Aug 2010 05:17:00 GMT

Last week I facilitated a workshop for volunteers at Greenwich Hospital, here in Sydney: An Introduction to Meditation.

Through a series of very small and simple techniques, participants were given the opportunity to discover certain qualities and experiences associated with meditation: being in the present, relaxed, aware and centred; conscious ventilation; being responsive rather than reactive; and accessing our capacity to be joyful and loving, and so on.

My aim was to provide not just a lovely day which, however delightful in the moment, would be forgotten as if it had never happened some weeks down the line, but one which would also give participants a repertoire of techniques that they could take away and immediately integrate into their everyday living.

The feedback included appreciation of having been given an eclectic assortment of approaches. Perhaps the majority of those new to meditation have the idea that it is either about chanting a mantra (as in TM) or sitting passively, watching the breath (as in the Buddhist tradition).

The notion that any activity done with awareness is a meditation was new to most of the group, I imagine. Probably none anticipated that as one of the methods we’d be doing a form of meditation called gibberish (and would find it to be, in fact, a fun and effective form of tension release)!

Some participants were overjoyed to have a day just for themselves, to nourish and rejuvenate them. We all need that, and especially, perhaps, those who – like the volunteers – are with the sick and dying.

A follow-up day (in fact, a morning) in a few weeks’ time will give participants an opportunity to talk about how it has been for them to introduce meditation into their everyday lives, and to discuss how to be – and remain – motivated to meditate.

Maneesha James Blog

Tibetan Buddhist Hospice in Ireland

Irish Hospice

First Meditation Group in Australia!

'Lecturing' in Meditation

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The New Yorker 'Letting Go' 6th and Final Part

The New Yorker 'Letting Go' Part 5/6

The New Yorker 'Letting Go' Part 4/6

The New Yorker 'Letting Go' Part 3 of 6

The New Yorker 'Letting Go' When medicine can't save your life. PART 1

The New Yorker 'Letting Go' When medicine can't save your life PART 2

Workshops for Student Therapists

Eulogy: a UK magazine on Death

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Write Away!

An Introduction to Meditation workshop