Candidates avoid the aid in dying debate, but it’s time to start talking about it

Since physiological support like respirators and defibrillators made it possible to prolong life, prolonging death has fueled a more subtle conversation

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With an aging population and state-by-state legislation creeping along, aid in dying is not a discussion national politicians should avoid.
With an aging population and state-by-state legislation creeping along, aid in dying is not a discussion national politicians should avoid.

Several factors have made politicians, particularly at the national level, reluctant to wade into the aid-in-dying conversation. Catholic leaders and their evangelical “pro-life” allies have eviscerated any politician willing to discuss aid in dying, shutting down dialogue and branding advocates as “pro-death”. By claiming to represent American religions, these vocal opponents have bifurcated the issue along political lines, all but silencing those who are religious but disagree.

Yet a conversation is taking place, with or without the presidential candidates. Since the 1970s, when physiological support, like respirators and defibrillators, made it possible to prolong life, prolonging death has fueled a more subtle conversation about what medical decisions patients and their families can make. Aid in dying is now approved by 68% of Americans, a number that rose by a striking 10 points in the course of a year, according to a Gallup poll conducted in May 2015. It’s now legal in five states with at least a dozen more considering bills or legislation.

Still, the issue was absent from the presidential race until a terminal cancer patient finally asked a question last week. Jim Kinhan, an 81-year-old with a face as rosy as his sweater, asked Hillary Clinton at a New Hampshire town hall meeting on 3 February about her position on the legalization of aid in dying.

“I wonder what leadership you could offer within an executive role that might help advance the respectful conversation that is needed around this personal choice that people may make, as we age and deal with health issues or be the caregivers of those people, to help enhance and – their end of life with dignity.” His voice was raspy, his question respectful. The Washington Post reported that Clinton “looked a bit nervous”. After a slight pause and some careful word selection, Clinton failed to take a position.

Republican candidates have also been silent about aid in dying, but it’s difficult to imagine anyone in the current conservative field will step away from the Republican party platform as they vie for traditionally Republican social conservatives. The campaign of Jeb Bush and his role in the Terri Schiavo case have even worked against the cause, helping to refresh patient concerns regarding autonomy in a way that defies party lines and past reticence.

But, unlike the fight to end abortion, which has (wrongly) focused on women’s sexual decisions and succeeded in shaming female medical choices, aid in dying is an issue that addresses male choice. That gender difference – and the fact that Republican voters skew older than Democrats – could catch up with the party and its candidates in the future. Republicans would do well to pay attention.

New Hampshire, where Kinhan lives, is home to one of the oldest populations in the country, and legislators there have tried twice in the past to establish study committees. Both times governor Maggie Hassan has vetoed the proposals. This year, as Hassan prepares to leave office, a Concord senator has tried again, introducing SB 426. It’s spurring the kind of dialogue in the state that Kinhan was hoping Clinton’s national campaign could get behind.

In the past, the very terms used to describe aid in dying have proven controversial. For more than a decade, polls showed that approval ratings depended on how questions about aid in dying were asked. If the term “assisted suicide” was used when polling, those willing to claim support for the laws were fewer. But that has begun to change; voters, exposed to repeated state-level conversations about aid in dying, and who now see that the laws have succeeded in the “laboratory of the states”, have come to understand that “assisted suicide” is not “suicide”. It is not something our culture should be united in preventing.

In an op-ed for the Concord Monitor at the end of January, Kinhan addressed the contrast between aid in dying and suicide. “The transparency and shared process of end-of-life choice is in strong contrast to the behavior known as suicide,” he wrote, emphasizing the difference between choosing not to suffer from a terminal disease and choosing to end one’s life out of despair.

“This choice is not dark and secretive,” Kinhan continued. “Personally, it rings loudly and joyfully of my readiness for what lies ahead and for thankfulness for what life has gifted me.”

Compassion & Choices, the nation’s largest aid in dying organization, has announced a call for questions for candidates. They will host an event on 17 February that gives voice to seniors who have concerns about end-of-life care. Hopefully candidates will realize what Kinhan and the movement to legalize aid in dying have shown: it’s time for a national conversation.

Complete Article HERE!

At my father’s bedside, I learned what death looks like

NHS end-of-life and palliative care must focus more on the dying person’s needs and wishes – but for that we need to have proper conversations

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Jon Henley with his father, mother and son in 2003
Jon Henley with his father, mother and son in 2003

My father spent 10 days dying.

He was 84 and he had lost his wife – my mother, whom he adored, and without whom he felt life was a lot less worth living – three years earlier. He died of old age, and it was entirely natural.

The process, though, did not feel that way at all, at least not to me. Dad had been bedridden for months and was in a nursing home. He stopped eating one day, then started slipping in and out of consciousness. Soon he stopped drinking.

For 10 days my sister and I sat by his bedside, holding his hand, moistening his lips. Slowly his breathing changed, became more ragged. During the last few days, the tips of his fingers turned blue. His skin smelled different. His breath gradually became a rasp, then a rattle.

It sounded awful. We were sure he was in pain. The doctor reassured us he wasn’t; this was a human body dying naturally, shutting down, one bit at a time. We had not, of course, talked about any of this with Dad beforehand; we had no plans for this, no idea of what he might have wanted. It would have been a very difficult conversation.

The doctor said he could give him something that would make him at least sound better, but it would really be more for us than for my father. “My job,” the doctor said, “is about prolonging people’s lives. Anything I give to your father now would simply be prolonging his death.”

So we waited. When it finally came, death was quite sudden, and absolutely unmistakable. But those 10 days were hard.

Death is foreign to us now; most of us do not know what it looks, sounds and smells like. We certainly don’t like talking about it. In the early years of the 20th century, says Simon Chapman, director of policy and external affairs at the National Council for Palliative Care, 85% of people still died in their home, with their family.

By the early years of this century, fewer than 20% did. A big majority, 60%, died in hospital; 20% in care homes, like my father; 6% in hospices, like my mother. “Death became medicalised; a whole lot of taboos grew up around it,” Chapman says. “We’re trying now to break them down.”

There has been no shortage of reports on the question. From the government’sEnd of Life Care Strategy of 2008 through Julia Neuberger’s 2013 review of the widely criticised Liverpool Care Pathway to One Chance to Get it Right, published in 2014, and last year’s What’s Important to Me [pdf] – the picture is, gradually, beginning to change.

The reports all, in fact, conclude pretty much the same thing: the need for end-of-life care that is coordinated among all the services, focused on the dying person’s needs and wishes, and delivered by competent, specially trained staff in (where possible) the place chosen by the patient – which for most people is, generally, home.

“It’s not just about the place, though that’s important and things are moving,” says Chapman: the number of people dying in hospital has now dropped below 50%.
“The quality of individual care has to be right, every time, because we only have one chance. It’s about recognising that every patient and situation is different; that communication is crucial; that both the patient and their family have to be involved. It can’t become a box-ticking exercise.”

Dying, death and bereavement need to be seen not as purely medical events, Chapman says: “It’s a truism, obviously, but the one certainty in life is that we’ll die. Everything else about our death, though, is uncertain. So we have to identify what’s important to people, and make sure it happens. Have proper conversations, and make proper plans.”

All this, he recognises, will require “a shift of resources, into the community” – and funding. Key will be the government’s response to What’s Important to Me, published last February by a seven-charity coalition and outlining exactly what was needed to provide full national choice in end-of-life care by 2020. It came with a price tag of £130m; the government is expected to respond before summer.

In the meantime, though, a lot of people – about half the roughly 480,000 who die in Britain each year – still die in hospital. And as an organisation that has long focused on curing patients, the NHS does not always have a framework for caring for the dying, Chapman says.

But in NHS hospitals too, much is changing. There has been a specialist palliative care service – as distinct from end-of-life care, which is in a sense “everyone’s business”, involving GPs, district nurses and other primary care services – at Southampton general hospital and its NHS-run hospice, Countess Mountbatten House, since 1995, says Carol Davis, lead consultant in palliative medicine and clinical end-of-life care lead.

People die in hospital essentially in five wards: emergency, respiratory, cancer, care of elderly people and intensive care, she says: “Our job is about alleviating patients’ suffering, while enabling patients and their families to make the right choices for them – working out what’s really important.”

Palliative care entails not just controlling symptoms, but looking after patients and their families and, often, difficult decisions: how likely is this patient get better? Is another operation appropriate? What would the patient want to happen now (assuming they can’t express themselves)? Has there been any kind of end-of-life planning?

Of course many patients in acute hospital care will not be able to go home to die, and some will not want to, Davis says: “Some simply can’t be cared for at home. If you need two care workers 24/7, it’s going to be hard. Others have been ill for so long, or in and out of hospital so often, they feel hospital is almost their second home. So yes, choice is good – but informed choice. The care has to be feasible.”

In 2014, the report One Chance to Get it Right [pdf] identified five priorities in end-of-life care: recognise, communicate, involve, support, and plan and do. (“Which could pretty much,” says Davis, “serve as a blueprint for all healthcare.”) The first – recognise, or diagnose – is rarely easy. How does a doctor know when a patient is starting to die?

“There are physical signs, of course,” says Davis. “Once the patient can’t move their limbs, or can no longer swallow.” But, she says, “we have patients who look well but are very ill, and others who look sick but are not. In frail elderly people – or frail young people – it can be hard to predict. Likewise, in patients with conditions like congenital heart disease, where something could happen almost at any moment.”

Quite often, Davis and her team face real doubts. “Right now,” she says, “I have a patient in intensive care, really very ill. They probably won’t pull through, but they might. I have another doing well, making excellent progress – but they’ve been in hospital for three months now. They’re very, very weak, and any sudden infection … You just can’t predict.”

Which is why communication, and planning, and involving the family – all those difficult and painful conversations that we naturally shy away from – are so very important.

It could well be, for example, that my father would actually have wanted his death to be prolonged: he certainly clung on to life with a tenacity that startled my sister and me. We will never know, though, because we didn’t talk about any of it.

“It is our responsibility – all of our responsibility – to find the person behind the patient in the bed,” Davis says. “One way or another, we have to have those conversations.”

Complete Article HERE!

Meeting Death with Words

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Meeting-Death-With-Words
Memoirs rarely tremble with such life as when expressing their author’s death.

A memoir of dying is exceptionally wrenching because we know the end at the beginning, and so meet with an effortful, pulsing person who will soon be neither. Pages rarely tremble with such life as when expressing their author’s death.

End-of-life memoirs have become increasingly prevalent of late. Christopher Hitchens wrote of his demise with customary pugnacity. Oliver Sacks recorded his fading remembrances, as did Tony Judt. Jenny Diski is currently chroniclingthe indignities of her last stretch, while Clive James composes newspaper columns on his future disappearance. Our aging population, granted so many extra years by medical science, anxiously tiptoes toward the dark matter, guided by those articulate enough, unlucky enough, to know what to say.

Often, the memoir starts with a prominent author declaring the diagnosis in a major periodical (Hitchens in Vanity Fair; Sacks in the Times; Diski in The London Review of Books). The diagnosis is usually terminal cancer, whose time frame may lend itself to contemplation, though not to more extensive pursuits. Typically, the author recites the markers of tragedy: foreboding symptoms overlooked, a collapse, the condemning scans, the switch to the wrong side of the window between healthy and ill. Some writers embody Hitchens’s line about “living dyingly,” straining to remain themselves, expressing dark humor and secular defiance, downshifting from existential fears to the banal process of death. Others pore over what they’ve had, been, seen. Touchingly, both Judt and Sacks cite nostalgia for gefilte fish. Food—that first pleasure—can be so important at the end, even when it cannot be swallowed.

Another mode is the lyric goodbye, typified by the poetry of James, particularly “Japanese Maple,” a rare popular hit for contemporary verse when it was published in The New Yorker. Of the maple tree, he wrote:

Come autumn and its leaves will turn to flame.
What I must do
Is live to see that. That will end the game
For me, though life continues all the same.

But a complication followed—among the only pleasant complications available to a terminal patient: James failed to die. Indeed, he continues to write, having survived that maple flaming twice over. In his new column for the Guardian, called “Reports of My Death,” he confesses to a twinge of embarrassment, as if he’d duped everyone with that guff about dropping dead. (A famous case of this desirable awkwardness involved the humorist Art Buchwald, who moved into a Washington hospice, in 2006, expecting to die, only to thrive there, dining on McDonald’s and holding court for months before ultimately moving back out.)head:heart

Other end-of-life writing is hortatory: memoirs with lesser literary aspirations but greater motivational ones, such as “The Last Lecture,” by Randy Pausch, a computer-science professor; the book, a parting address about achieving childhood dreams, was a best-seller. Another example is “Chasing Daylight: How My Forthcoming Death Transformed My Life,” by Eugene O’Kelly, an executive at the accounting firm KPMG who spent his final hundred days eschewing his hard-driving ambition in lieu of moral fulfillment. What most end-of-life memoirists share is a desire to wring the essence from what they’ve been—either to clasp on to it or, finally, to release it. These are works of defiance, sometimes escapism. Above all, they are expressions of the noble delusion: create because nobody endures, and create in order that you endure.

A compelling, crushing addition (and, sadly, a subtraction) is “When Breath Becomes Air,” by Paul Kalanithi, a neurosurgeon of immense promise who died of lung cancer, in March, at the age of thirty-seven, having labored on a memoir that stands as a manifesto for the genre, pressing readers to look at the impending darkness. “The fact of death is unsettling,” he writes. “Yet there is no other way to live.” When Kalanithi saw the CT scans of his chest, he surveyed a map of his own death. Others, including his shattered father, insisted that the young man would beat it. Kalanithi was too talented a diagnostician to concur. But a question pursued him: How long have I got left? This prompted a much shared Times Op-Ed that became the seed of his book.

In past centuries, those who were dying might have known that the end neared, but nobody had the tools to estimate when. Today, we have Kaplan-Meier survival curves, and yet doctors grow coy when pressed for a number. Keep up your hope! Kalanithi himself had dodged the subject with patients. When he becomes one himself, he aches to know. His oncologist refuses even to discuss it.

But it is time itself that conditions our behavior, even our identity. When we consider ancient populations whose life expectancy was less than forty years, we picture wretches, limited in scope, and fundamentally different from us as a result. Presumably, our descendants will view us in the same way, as being cursed with the appallingly brief span of eighty-something. For now, that is our anchoring point, an acceptable innings, with seventy too soon, sixty unfairly so, and so on. It’s a pact that the secular make with nothingness: we’ll accept just this life, but give us our share! While healthy, Kalanithi had divvied up his remaining years: twenty as a surgeon and scientist, followed by twenty as an author. Abruptly, he had to recalculate. If ten years remained, he’d devote himself to science. If two, he’d write. Which was it to be?

Raised in suburban New York, then in a small town in Arizona, Kalanithi was a bright son of southern-Indian immigrants, his father a cardiologist, his mother a trained physiologist, although she is recalled in his book more as her son’s minister for education. Her academic urging propelled him toward English literature at Stanford, which he studied along with human biology. At the graduate level, however, literary studies frustrated him, touching on the stuff of life, but with wool rather than with steel. The scalpel called. Soon, he was dissecting cadavers at Yale Medical School, where, he remembers, a surgeon drifted in to explain various scars on a corpse, his elbows leaning on the dead man’s face. Kalanithi returned to Stanford for his neurosurgical residency, and he excelled. He stood at the brink of a glittering career. But there was the weight loss, the back pain, the suspicions batted away. Chances are it’s just …

When the elderly face death, they dread losing what they’ve had. When the young face death, they dread losing what they haven’t had. Which is worse? Kalanithi’s wife worries that, if they conceive a child, it could render his farewell more excruciating. But life, he argues, is not about avoiding suffering.

Meds stabilize his disease for a spell. He soldiers through the completion of his residency. On a subsequent scan, a large new tumor appears. “I was neither angry nor scared. It simply was. It was a fact about the world, like the distance from the sun to the earth.” He conducts his last case as a doctor, his final walk from surgery, witnessing the dissolution of an identity so arduously attained. Kalanithi attended the birth of his newborn daughter, and grew deeply attached to her. “I hope I’ll live long enough that she has some memory of me.” Cady was eight months old when Kalanithi died. “Words,” he writes, “have a longevity I do not.”

The literary world has been circling the subject of death for at least a decade, notably via acclaimed accounts of bereavement such as Joan Didion’s “The Year of Magical Thinking” and “Blue Nights”; Kay Redfield Jamison’s “Nothing Was the Same”; and Joyce Carol Oates’s “A Widow’s Story.” Academic thinkers are joining in, too; among the volumes appearing this past year are “The Worm at the Core: On the Role of Death in Life,” by the psychology professors Sheldon Solomon, Jeff Greenberg, and Tom Pyszczynski; “The Work of the Dead: A Cultural History of Mortal Remains,” by Thomas W. Laqueur, a historian; and “The Black Mirror: Looking at Life Through Death,” by Raymond Tallis, a former professor of geriatrics.

All this attention comes not from a greater understanding of mortality but from a greater ignorance of it. The promises of religion are replaced by the promise of science, yet medicine fails to vanquish its ultimate foe, instead rendering death more obscure, a matter for procrastination. The preëminent thanatophobe of our day, the novelist Julian Barnes, wrote a two-hundred-and-fifty-page memoir on his fear of nonexistence, “Nothing to Be Frightened Of.” The title isn’t intended to be soothing: by “nothing” he means “nothingness.” He writes, “If death ceased to be talked about when it first really began to be feared, and then more so when we started to live longer, it has also gone off the agenda because it has ceased to be there, with us, in the house.”

In richer parts of the world, death is likely to arrive in a nursing home, or in a hospital—precisely where we most dread spending our dwindling hours. The exit from life, as Atul Gawande observes in his treatise “Being Mortal,” has become overly medicalized in recent decades, causing us to forget centuries of wisdom. We have ended up with a system that treats the body while neglecting its occupant. But the discontent is mounting, Gawande says: “We’ve begun rejecting the institutionalized version of aging and death, but we’ve not yet established our new norm. We’re caught in a transitional phase.”

How much should each of us be pondering death? Some people flee the topic. (Few of them, I suspect, have read this far.) Others brood over it. As a matter of preparation, the death-minded aren’t necessarily better off, since they are so unlikely to predict their manner of departure. (How many flight-phobics will fall to earth clutching their chests?) Nor does one know the person to whom one’s own death will occur, given how the violence of disease changes a patient.

But death contemplation is more than prep work. It’s a world view, with nothingness conferring meaning on what precedes, just as a novel gains meaning from its conclusion and would lose sense were it to patter on interminably. Writers—perhaps from a vocational need for endings—seem especially attuned to the looming conclusion of themselves. Or maybe it’s the other way around: those gripped by thoughts of death are prone to artistic pursuits, in the hope that something of themselves will remain.

When medieval painters incorporated memento mori into their compositions—the skull dabbed into a portrait of courtly gents, say—they were proclaiming, “Beware earthly delights, for hell is everlasting!” In our times, the skull has become a fashion accessory or an attempt at irony in dreary artworks. The contemporary emblem of death is the bucket list, inverting the memento mori into “Partake of earthly delights, for life won’t be everlasting!”

The problem is not a lack of spirituality, though. The problem is how to partake of earthly delights. Should one engage in pleasures at the end? Should one strive for lasting accomplishment? The answer depends on what haunted Kalanithi: How long have I got? The answer is so hard to find, harder still to admit. Paradoxically, time is precisely where our society errs in handling death, having licensed our doctors to extend existence, irrespective of the character of the additional weeks. Unfortunately, dying is something we are figuring out only through doing. And now perhaps through the telling, too.

Complete Article HERE!

This doctor helped dying people end their lives with dignity. Then he was diagnosed with cancer.

By Brooke Jarvis

doctor and cancer

Peter Rasmussen was always able to identify with his patients, particularly in their final moments. But he saw himself especially in a small, businesslike woman with leukemia who came to him in the spring of 2007, not long before he retired. Alice was in her late 50s and lived outside Salem, Oregon, where Rasmussen practiced medical oncology. Like him, she was stubborn and practical and independent. She was not the sort of patient who denied what was happening to her or who scrambled after any possibility of a cure. As Rasmussen saw it, “she had long ago thought about what was important and valuable to her, and she applied that to the fact that she now had acute leukemia.”

From the start, Alice refused chemotherapy, a treatment that would have meant several long hospitalizations with certain suffering, a good chance of death, and a small likelihood of truly helping. As her illness progressed, she also refused hospice care. She wanted to die at home.

Six months after Rasmussen started seeing Alice, he wrote in her chart about his admiration for her and her husband: “Together they are doing a wonderful job not only preparing for her continued worsening and imminent death but also in living a pretty good life in the meantime.” But there were more fevers and bleeding and weakness. In late January, she asked him to write her a prescription for pentobarbital.

Three days later he arrived at her farmhouse with four vials of bitter liquid. Though the law didn’t require it, he liked to bring the drug from the pharmacy himself, right before it was to be used, so that there would be no mistakes.

Over nearly three decades as a physician in Oregon, Rasmussen had developed many strong beliefs about death. The strongest was that patients should have the right to make their own decisions about how to face it. He remembers the scene in Alice’s bedroom as “inspiring, in a sense” — the kind of personal choice that he’d envisioned during the long, lonely years when he’d fought, against the disapproval of nearly everyone he knew and all the way to the U.S. Supreme Court, for the right of terminal patients to decide when and how to die.

By the time he retired, Rasmussen had helped dozens of patients end their lives. But he kept thinking about Alice. Her pragmatism mirrored the image he had of how he would face such a diagnosis. But while he had often conjured that image — had faced it every time he walked a dying patient through a list of inadequate options — he also knew better than to fully believe in it. How could you be sure what you would do before the decisions were real?

“You don’t know the answer to that until you actually face it,” he said later — after his own diagnosis had been made, after he knew that he had cancer and that he would soon die. “You can say you do, but you don’t really know.”

The knowledge hid in the back of Rasmussen’s mind — a flitting worry you don’t look at directly — for a few days before he really comprehended it.

He was on his way home from a meeting of the continuing-education group he had joined after his retirement. One of the group’s members had asked him to let the others know that she had been diagnosed with a glioblastoma — a type of brain tumor whose implacable aggression he knew well. A glioblastoma can cause seizures, memory loss, partial paralysis, even personality changes. You can treat the tumor with surgery, chemotherapy, and radiation, but it will always come back, often in more places. The timeline can be uncertain, but the prognosis never is. The median period of survival after diagnosis is seven months.

As Rasmussen drove away from the meeting, his left hand was draped on the wheel of his Tesla. It felt, as it had for several days, oddly numb, as if he’d been holding a vibrating object for too long. He’d ignored the feeling, chalking it up to spending too much time power-washing pinecones off his cedar-shake roof.

Maybe it was what had happened at the meeting, or the clarity of a wandering mind. All at once he focused on the sensation — on how localized it was, on the fact that it hadn’t gone away — and he knew. Something was wrong. “I’ve either got MS,” he thought, “or I’ve got a brain tumor.”

Instead of driving home he went straight to an urgent-care clinic, where a doctor sent him to the E.R., where another doctor gave him an MRI, which showed a tumor. It was, he learned later, a glioblastoma about an inch in diameter. Barring an accident, it would be the thing that killed him, sometime in the suddenly too near future.

Eight days after his MRI, Rasmussen went to the hospital to have part of his skull cut away and his tumor sliced out. He had considered whether having surgery violated his usual advice about not wasting one’s final months seeking painful and unlikely cures, but because his tumor was localized and fairly accessible, he and his surgeon decided that the odds were good enough to try.

The surgery was a success — though Rasmussen lost the use of his left arm, the entire visible tumor was removed, and he was able to leave the next day. Of course, success was only a slower form of failure: He was still going to die. He never let himself, or anyone around him, forget that his reprieve was temporary. “It’s not if I pass away,” he corrected his lawyer, his accountant, his friends. “It’s when I die.”

Before he retired, Rasmussen had often tried to help his patients and their families think of the process of dying as an opportunity, a chance for clarity and forgiveness, for thoughtful, meaningful goodbyes. He hoped to hold on to that belief for himself. When he pictured a good death, the image was simple: calm and peace, without much physical suffering, and his family with him in the house where he’d lived for 18 years with Cindy, his wife; where the kids had grown up; where the windows looked out on his bird feeders and his flowers.

It wasn’t time yet. Five months after the surgery, he stopped chemo and radiation. He began to feel better, stronger, and was even able to use his left hand a little. Still, every time he had a headache or nausea he wondered whether the tumor was growing back. But whenever he started to feel sorry for himself, he’d administer a stern mental shake: “We all die,” he’d tell himself. “It’s never fair to anybody. So buck up.”

Privately, he had no idea whether or not he’d take advantage of Oregon’s assisted suicide law. He consulted a list that he’d kept of his Death With Dignity patients. At first most had been urgent cases: people with all kinds of terminal diseases, who were suffering intensely and wanted to take the drug right away. As time passed, people began coming to him sooner after their diagnoses, before they knew how their diseases would develop. Some only asked questions, and others wanted to have the pentobarbital handy, a just-in-case comfort that made them feel more in control. The majority of his patients never took the medication.

Every death was different, though most had details in common: reminiscing in advance, goodbyes filled with love, family members saying that it was OK to stop struggling. There was the death with the Harley-Davidsons: He’d pulled up to the house and there were motorcycles everywhere, people in leather drinking beer on the lawn, just the party his patient wanted.

Of course, not everyone wanted a party, and he respected that too. Often there were only a few family members, and sometimes it was just him and the patient, alone together at the last. Only once did someone ask to die completely alone, in quiet privacy behind the closed door of a bedroom.

He remembered a woman whose mastectomy had not stopped her breast cancer from metastasizing to her lungs. Her huge family came in for the weekend. They had a picnic on Saturday, went to church on Sunday, and then all the kids and grandkids filed through her bedroom to say goodbye. He waited outside the door until they were done and then he brought her a dose of pentobarbital. She drank it and died. That one stuck with him: “It was about as ideal a death as I possibly could have imagined.”

In July of last year, Rasmussen went in for a new MRI. The scan showed the tumor, the same size and back in the same place it had been the year before. He consulted with his surgeon, who told him that the tumor was once again a good candidate for removal. Rasmussen would most likely lose the use of his left arm altogether, but if all went very well, he would have a one-in-three chance of living to the second anniversary of his diagnosis.

“I’ll leave tomorrow for the trip,” he told Cindy after meeting with the surgeon — meaning a cross-country road trip that he’d been talking about. Cindy was stunned. She hadn’t thought he’d actually go. But he was adamant, and then he was gone.

He drove east through Idaho, Montana, South Dakota, along long, open stretches of quiet road. He brought recorded lectures to keep him company: one about St. Francis, a series on the Higgs boson, and a particularly interesting lecture about gnosticism.

As he drove, he tried to visualize what his life would be like if he underwent surgery or stopped treatment altogether. He imagined losing more of the use of his left side and eventually ending up in hospice, bedbound. That part didn’t bother him so much. He knew it was coming no matter what. But he didn’t like thinking about stopping treatment, not yet. It was too passive, too final. It just made him too sad.

Somewhere around the ninth day of his trip, he had a thought that excited him. “The task of learning to be a hemiparetic person,” of living with paralysis on his left side, could be an adventure, another learning experience. “To take on a challenge is always satisfying,” he explained later. Relief washed over him. He had made a decision.

He wasn’t planning to have the surgery right away, but an hour after arriving home he had a seizure. Four days later he was back in the O.R., and surgeons were once again scooping a tumor from his brain. He woke to find himself paralyzed not just in his arm, but throughout the left side of his body. For days he was noticeably quiet. After three days he moved to a nursing-care facility. The first morning there, he called Cindy to tell her that he’d been very sad the night before. “Did you cry?” she asked.

“No, I didn’t cry,” he replied. “But I was mourning the loss of my independence.”

On Oct. 1, he was admitted to the hospital for a new MRI. The results showed that his tumor had not only grown back but expanded into the middle of his brain. “I want to go home,” he said.

Cindy set up a hospital bed in the living room looking out over his gardens. His stepchildren arrived from New York and Seattle. For four nights Cindy and the kids stayed by his bed, each night thinking it would be the last. Instead, he grew stronger for a time — a month that Cindy calls “one of the most meaningful experiences I’ve ever had and probably will ever have.” He visited with friends and family, watched a slide show of old pictures, listened as music therapists played his favorite songs on the ukulele.

Rasmussen had already started the paperwork for Death With Dignity, but he didn’t want to add the final touch, his own signature. Near the end of October, he was speaking only a few labored words at a time. One day he asked Cindy to help him stand so he could get up to go to the bathroom, something he hadn’t done in weeks. He was so weak and frail that Cindy told him it was impossible. She says she saw the realization happen then: “This is it.”

On Oct. 29, Rasmussen signed the paperwork and his siblings flew in from Wisconsin, Illinois, and North Carolina. He planned to take the drug the next week, after what Cindy calls “a memorial service while he was still alive.” Sixteen people gathered around Rasmussen; one by one they told him what he had meant to them and what they would remember about him.

He was alert but not talking much on the morning of Nov. 3. His family intertwined their arms in a circle around him and put piano music on the stereo. He raised the cup of secobarbital mixed with juice — papaya, orange, and mango, his favorite — and drank it down. His eyes closed. Cindy, sobbing, realized how similar the scene was to what he used to describe when he came home from someone else’s death. “It was awful,” she says. “But at the same time, I was glad that he was able to end his life on his terms.”

Half an hour later, he quietly stopped breathing.

Dying docs opt for less aggressive end-of-life care

By Sabriya Rice

Doctors facing death may be less likely to seek surgery or visit the intensive-care unit during the last six months of their lives when compared to non-clinicians. They are also less likely to ultimately die in a hospital, according to studies posted Tuesday in JAMA that looked at use of end-of-life services.

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“Actual experience with hospital deaths may differentially motivate physicians to avoid them,” the authors of one report wrote. Physicians may also opt for less rigorous care, because of their “knowledge of its burdens and futility,” the researchers added.

Policy surrounding end-of-life care has been highly politicized in recent years. Physicians have argued for Medicare to support conversations about the pros and cons of end-of-life treatments. Opponents on the other hand feared this could result in so-called “death panels,” and care decisions based on financial concerns.

Last fall, the CMS moved forward with plans to create distinct Medicare billing codes and rates for end-of-life care planning. The policy was welcomed by physicians, who said it would allow them more opportunity to have conversations about end of life as part of yearly checkups.

While medical advancements have helped people to live longer, they have also led to increased demand for end-of-life care and associated costs. By 2050, the population of people age 65 and over is projected to be 83.7 million, almost double that of 2012, in part due to aging baby boomers. The population of people living to be age 80 and older is projected to reach 30.9 million, according to the U.S. Census Bureau (PDF).

Also, hospice usage among Medicare fee-for-service patients has been growing. Rates nearly doubled from 26% in 2002 to 47% in 2012, according to a 2015 report from the Medicare Payment Advisory Commission (PDF). Spending on hospice care also rose from just under $1 billion to $3.4 billion during that time period.

The Jan. 19 issue of JAMA delves into a number of studies, commentary and viewpoints on death and dying in this current environment. In one commentary, surgeon Dr. Atul Gawande of Boston’s Brigham and Women’s Hospital calls the picture of care at the end of life “disturbing.” Holding palliative care consultation and end-of-life discussions as a last resort is “incorrect and harmful,” he wrote.

End-of-life care must consider both how much treatment is needed and balance that with the quality of life it provides to the patient. Given their knowledge of healthcare, two studies specifically aimed to examine the intensity of treatments chosen by doctors nearing death, compared with members of the general population.

One analysis looks at records of Medicare beneficiaries age 66 and older who died between 2004 and 2011 in Massachusetts, Michigan, Utah and Vermont. Death records were used to obtain education and occupation status so researchers could differentiate physicians’ end-of-life choices from those of the general population.

The study found that in the last six months of life, on average about 25% of a total 2,376 physicians who died had surgery and 26% were admitted to the ICU. That’s compared with just over 27% of the general population (159,255) of patients. On average, 32% of the general population died in a hospital; less than 28% of physicians did. The study was conducted by researchers from Brigham and Women’s Hospital; the Mayo Clinic in Rochester, Minn.; and Weill Cornell Medicine, New York.

The other analysis used U.S. Census Bureau mortality survey data and the National Death Index to look at individuals between ages 30 and 98 who died between 1979 and 2011. Physicians and health professionals such as dentists, nurses and pharmacists were less likely to die in a hospital compared with the general population.

The authors of that report were from the New York University School of Medicine, the U.S. Census Bureau and the National Cancer Institute.

Both studies say familiarity with healthcare and greater financial resources may be associated with lower likelihood of aggressive end-of-life care. Elderly clinicians may have the financial means to pay for other options, such as palliative care or having a skilled nurse at home, the authors say.

Complete Article HERE!

How to Talk to Your Grown Kids About Your Mortality

Do these three things and your children will thank you

By Elizabeth Fishel and Jeffrey Arnett

difficult conversations
During a car ride, Peter brought up to his two twentysomethings what his end-of-life wishes would be: No heroic measures, because he wouldn’t want to suffer and wouldn’t want his family to endure it. One of the boys took this in stride, but the other became very upset, asking: “Why are you talking about this? It’s horrible that you’re so calm about death.”

Death comes to us all, but in the 21st century, it comes later than ever for most people. Because of medical advances, life expectancy has stretched to record highs, and in the United States and other countries most people can expect to live into their 70s or 80s. Perhaps for this reason, we generally prefer to ignore death and avoid talking about it, even when we’re in our 60s or older. And our young-adult children, certain of their own immortality, may also prefer to think of their parents as living forever. Bringing up our mortality may provide a rude awakening to grown children of any age.

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But we ignore it at our peril, or rather, at the peril of those we love. They may not want to hear us talk about the inevitable visit from the Grim Reaper, but if we neglect the responsibility to prepare for our death — and to prepare them for it — we do them a disservice and leave them with a stressful mess when the time comes. That’s a legacy few of us would wish.

So, here are three crucial issues to make sure you address and discuss:

1. Make a Will

You need to have a will, and once you do you need to make sure your loved ones know about it. Because we tend to prefer to think of death as many years away no matter what age we are, many of us fail to fulfill the basic responsibility of making a will. Various surveys indicate that about 50 percent of American adults have not had one drafted. The percent who have made a will rises with age, but even among 55- to 64-year-olds, 40 percent have no will.

Here’s the problem with that: If you die without a will, the state takes over your estate and makes the decisions about who gets what. Who would want that?

So, no excuses: If you haven’t prepared a will yet, do it as soon as you’re done reading this post! There are many inexpensive online options or you can hire anestate planning attorney if your estate is complex or you’d like the assurance that all the legal steps have been taken correctly.

2. Make Funeral Plans

Figure out plans for your funeral and burial or cremation and make sure family members know what ,and where, the plans are. We’re not crazy about talking about this aspect of death, either, but again, wouldn’t you rather decide on this now, rather than leaving it to your grieving family members to handle hastily after your death? You may find consolation, too, in the thought that the post-death commemoration will be done as you would have wished, even though it is a party you will not be able to attend.

3. Make Your End-of-Life Plan

You also should come up with your end-of-life plan and make sure your loved ones know about it. Medical interventions are extremely effective at keeping us alive at the end of life, even after any prospect of restoring us to consciousness, much less good health, has passed. People vary in how they view this issue, from those who want all possible steps to be taken to those who would prefer not to prolong the inevitable.

Ask your doctor how to make an “advance directive” that will contain your instructions or look up the instructions online from a reputable source like AARP or state government websites (each state has its own laws concerning end-of-life care).

Don’t assume your loved ones will know what to do; they probably won’t, and you don’t want them to have to make those decisions amid the stress and sadness of losing you.

Difficult as these conversations and plans may be, for your children’s sake and for your own peace of mind, discuss them now, while you are lucid and healthy. Your children may not thank you today, but they will appreciate the guidance when the time comes. That’s one last gift of love you can give them after you’re gone.

Complete Article HERE!

Doctors need to learn about dying, too

By Susan Svrluga

Doctors will finally be reimbursed for talking about death with their terminally ill patients, but, Michael Nisco argues, very few of them know how to do that.  Nisco, the hospice national medical director for Amedisys Home Health and Hospice Care, has taught at Stanford and Harvard medical schools. He founded the physician specialty training program in palliative care at the University of California San Francisco Medical School.

He writes that medical schools must do a better job of preparing physicians to help patients even when they can no longer heal them.

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Dying Patients Deserve Physicians Educated in End-Of-Life Care

By Michael Nisco, MD

Starting this year, Medicare will, for the first time ever, reimburse physicians for having end-of-life discussions with terminally ill patients.

In the ideal scenarios, doctors ask patients to identify how and where they want to spend those final days, and then recommend the best options.

Question is, will physicians, as a result, be motivated to initiate more of these crucial conversations? Will patients? And will this long-overdue reform ultimately improve, both clinically and economically, how well the U.S. health care system delivers end-of-life care?

Nobody knows for sure. But this much is certain: Many physicians have received no training along these lines. Few are educated in how to carry on this kind of talk with patients in the first place, much less in shepherding patients compassionately toward death.death-cab-for-cutie-transatlanticism-reissue

In 1999, only 26 percent of residency programs in the United States offered a course on care at the end of life as part of the curriculum, the Journal of the American Medical Association reported. Indeed, of 122 medical schools researchers surveyed more recently, only eight had mandatory coursework in end-of-life care.

Physicians all too often skip having an end-of-life discussion, or at least delay it as long as possible, even in the face of a major health crisis. Physicians are rarely prepared to conduct such momentous conversations with patients, least of all about anything as sensitive as advance care directives. We typically think and act short-term rather than looking ahead. But it’s more than that: Such conversations guarantee deep discomfort.

Acknowledging the approach of death means delivering a poor prognosis — and admitting to ourselves that we’re about to fail our patients forever. Doctors are hardly immune to living in denial. We can be unduly optimistic about how long even the sickest of the sick are going to stay alive.

After all, nobody wants to look death in the eye.

Code DeathAnd in bypassing this opportunity and doing what we believe to be right, we’re actually committing a wrong, bringing serious consequences. Patients pay the price. Those who need to be alerted to and informed about end-of-life care may wind up ill-advised and even ignorant about the choices available and what they might mean.

Terminal patients should have the opportunity to enter hospice care sooner than most do to take advantage of its clinical, emotional and spiritual benefits. They should also be granted the right to die at home if they so choose rather than in a hospital or a nursing home.

Pressure for these discussions to be imperative rather than optional is growing, and fast. The decision from the Centers for Medicare & Medicaid Services to compensate doctors for having these talks is only the latest breakthrough on this front.

In 2014, the Institute of Medicine came out with an influential report, “Dying in America: Improving Quality and Honoring Individual Preferences near the End of Life,” that, among other calls to action, urged Medicare to approve such reimbursements for these counseling sessions. The American Medical Association soon urged the same. Massachusetts even became the first state to pass a law requiring doctors to discuss with terminally ill patients how they want to be cared for at the end of life.

Of course health care professionals in current practice should adopt the proper protocols, too. Accordingly, Amedisys Home Health and Hospice Care has undertaken its own national educational initiative. Over the last year, more than 3,000 of our employees, across our 80 hospice centers, have come together to watch the PBS documentary “Being Mortal,” based on the book by Atul Gawande, and discuss how to apply its lessons to caring for our patients every day.

We’ve secured Continuing Medical Education accreditation so we can credit every physician, nurse practitioner and physician assistant who completes an online course featuring the film. We’re also screening the film for physicians, nurses, social workers, home health workers and the general public at hundreds of locations across the country.death-poems-death-poetry-dark-poems-dark-poetry

The broader solution here, at once simple and complex, is that more medical schools should develop curricula about performing end-of-life care in general and conducting discussions about it in particular.

We have to change how people die in this country – and, more specifically, teach the next generation of physicians how best to care for the dying. Here’s a prescription to get us started:

  • Care at the end of life should be taught as an essential clinical skill throughout the continuum of medical education.
  • Medical students should be exposed in all stages of training to dying patients and multidisciplinary teams who can instruct in a humane model of palliative care.
  • Medical schools must train and hire more educators to demonstrate state-of-the-art palliative care for medical students, residents, fellows, medical school faculty, and physicians in practice.
  • The following major goals should be the focus: establishing suitable communication skills; acquiring essential technical knowledge for treating symptoms and relieving pain; and learning to address the psychosocial, cultural and spiritual needs of patients.

Unless action is taken, we may see more physicians telling stories like this one, from Charles von Gunten’s “Why I Do What I do”:

The young man was ‘end stage’ and we could do nothing for him. He was short of breath and unable to talk and looked terrified. I had no idea what to do. So I patted him on the shoulder, said something inane, and left.  He died hours later. The memory haunts me. I was ignorant and failed to care for him properly.

These improvements are already desperately overdue. Palliative care is the responsibility of all physicians, yet only an estimated 6,500 physicians are certified in hospice and palliative care. Only if we improve our overall approach will our patients and families ever truly have a chance to complete their life’s journey with honor and dignity.

Complete Article HERE!