Category: Philosophy of Living

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In Palliative Care, Comfort Is the Top Priority

By Paula Span

Palliative Care

Last year, when an oncologist advised that Betty Chin might benefit frompalliative care, her son Kevin balked.

Mrs. Chin, a retired nurse’s aide who lives in Manhattan’s Chinatown, was undergoing treatment for a recurrence of colorectal cancer. Her family understood that radiation and chemotherapy wouldn’t cure her, but they hoped doctors could keep the cancer at bay, perhaps shrinking her tumor enough to allow surgery or simply buying her more time.

Mrs. Chin, 84, was in pain, fatigued and depressed. The radiation had led to diarrhea, and she needed a urinary catheter; her chemotherapy drugs caused nausea, vomiting and appetite loss.

Palliative care, which focuses on relieving the discomfort and distress of serious illness, might have helped. But Mr. Chin, 50, his mother’s primary caregiver, initially resisted the suggestion.

“The word ‘palliative,’ I thought of it as synonymous with hospice,” he said, echoing a common misperception. “I didn’t want to face that possibility. I didn’t think it was time yet.”

In the ensuing months, however, two more physicians recommended palliative care, so the Chins agreed to see the team at Mount Sinai Hospital.

They have become converts. “It was quite a relief,” Mr. Chin said. “Our doctor listened to everything: the pain, the catheter, the vomiting, the tiredness. You can’t bring up issues like this with an oncologist.”

Multiple prescriptions have made his mother more comfortable. A social worker helps the family grapple with home care schedules and insurance. Mr. Chin, who frequently translates for his Cantonese-speaking mother, can call nurses with questions at any hour.

Challenges remain — Mrs. Chin still isn’t eating much — but her son now wishes the family had agreed to palliative care earlier.

Perhaps it’s not surprising that many families know little about palliative care; it only became an approved medical specialty in 2007. It has grown rapidly in hospitals: More than 70 percent now offer palliative care services, including 90 percent of those with more than 300 beds.

But most ailing patients aren’t in hospitals, and don’t want to be. Outpatient services like Mount Sinai’s have been slower to take hold. A few hundred exist around the country, estimates Dr. Diane Meier, who directs the Center to Advance Palliative Care, which advocates better access to these services.

Dr. Meier said she expects that number to climb as the Affordable Care Act and Medicare continue to shift health care payments away from the fee-for-service model.

Because most people with serious illnesses are older, seniors and caregivers should understand that palliative care offers more care as needed, not less. Unlike hospice, patients can use it at any point in an illness — many will “graduate” as they recover — without forgoing curative treatment.

Like hospice, however, palliative care focuses on quality of life, providing emotional and spiritual support for patients and families, along with drugs and other remedies to ease symptoms. Its practitioners help patients explore the complex medical decisions they often face, then document their preferences.

It pays off for patients and families. In 2010, a randomized trial of 151 patients with metastatic lung cancer at Massachusetts General Hospital found that those who received early palliative care scored significantly higher on quality of life measures than those receiving standard care, and were less likely to suffer from depression.

They were also less likely to get aggressive end-of-life treatment like chemotherapy in their final weeks. Yet they survived several months longer.

Other studies have found similar benefits. Compared with control groups, palliative care patients get greater relief from the breathlessness associated with lung diseases; they’re less likely to spend time in intensive care units; they report greater satisfaction with care and higher spiritual well-being.

And they do better if they seek palliative care early. A new study conducted at the cancer center at the University of California, San Francisco, found that of 922 patients who had died, most in their 60s and 70s, those who had received palliative care for 90 days or more were less likely to have late-life hospitalizations and to visit intensive care units or emergency rooms than those who sought care later.

The reduced hospital use also saved thousands of dollars per patient, a bonus other studies have documented.

“If people aren’t in excruciating pain at 3 a.m., they don’t call 911 and go to the emergency room,” Dr. Meier pointed out.

Yet palliative care remains underused. Even at the well-established U.C.S.F. cancer center, which began offering the service in 2005, only a third of patients in the study had received a palliative care referral.

“We hear this all the time: ‘They’re not ready for palliative care,’ as if it’s a stage people have to accept, as opposed to something that should be a routine part of care,” said Dr. Eric Widera, who practices the specialty at the university.

In fact, the cancer center at U.C.S.F. adopted a euphemistic name for its palliative team: “the symptom management service.”

“We deliberately called it that because of how much ignorance or confusion or even bias there was against the term ‘palliative care,’” said Dr. Michael Rabow, director of the service and senior author of the new study.

Although 40 percent of their palliative care patients can expect to be cured, “there clearly still are both patients and oncologists who have an inappropriate association in their minds,” he said. “They still associate palliative care with giving up.”

To the contrary, palliative care can help patients live fully, regardless of their prognoses. Consider Herman Storey, a 71-year-old San Franciscan, an Air Force veteran, a retired retail buyer and manager, a patient who feels quite well despite a diagnosis of inoperable liver cancer.

His oncologist at the San Francisco V.A. Medical Center — the Department of Veterans Affairs has been a leader in this specialty — referred him to the palliative care service last fall when Mr. Storey said he didn’t intend to pursue chemotherapy.

“They wanted me to reconsider,” Mr. Storey said, “but I don’t want to get sick and tired of being sick and tired.” Chemotherapy for a previous bout of cancer had helped him survive for three years; it had also made him very ill.

Dr. Barbara Drye, medical director of outpatient palliative care at the cancer center, walked Mr. Storey through his options. The suggested chemo might extend his life by several months, she explained. It would also take a toll.

“It can cause not only nausea and diarrhea, but it affects your taste,” she said. “Food tastes like cardboard. Fatigue can markedly decrease the amount of activity someone can do.”

This time, Mr. Storey decided against treatment. A skilled cook, proud of the duck confit dinner he served guests at Christmas, he wants to continue to enjoy cooking and dining out with friends.

Besides, he has plans: In May, he expects to visit Paris for the 11th time, to mark his 72nd birthday.

Dr. Drye, who helped Mr. Storey complete his advance directives, will arrange for home or inpatient hospice care when he needs it. Until then, she sees him monthly.

She has gently suggested that he take his trip a bit earlier; he has declined. “I feel great,” he told me.

So this is also life with palliative care: Mr. Storey and a companion have rented an apartment near the Place des Vosges. A Parisian friend will throw a dinner party for him, as usual. And he’ll eat at that little Alsatian restaurant where they always remember him.

Complete Article HERE!

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Let’s Talk About Death — Specificially Yours

By Steve Gordon

talk about death

In his only novel, The Notebooks of Malte Laurids Brigge, the poet and philosopher Rainer Maria Rilke had his protagonist expound on an old wisdom, one in which “people knew (or perhaps had an intuition) that they bore their death within them like the stone within a fruit. . . . It was something people quite simply had, and its possession conferred a peculiar dignity, and a tranquil pride.”

The stone within a fruit. It’s an intriguing way to think about mortality, a prosaic image to bring home that our mortal end is always a part of us, always there inside us, as surely as our lifeblood and, perhaps, our soul.

It’s an image that has come to mind often in the last few months as I’ve been talking to people about the new book Let’s Talk about Death: Asking the Questions that Profoundly Change the Way We Live and Die, which I co-wrote with Dartmouth College professor Irene Kacandes. The book was released in November, and Irene and I have spoken to several groups and many, many individuals about our experiences in writing it, and about their own experiences with death and dying. The latter is just what we had hoped would happen — that people would want to open up about a topic that tends to stay in the shadows. We’d also love for that opening up to spread to others around them in the form of conversations that might, in maybe unexpected ways, change their lives.

We can hope that our book will have that effect on as many people as possible. In the meantime, I have noticed a few threads of thought twining through the conversations and discussions we have had. Here are a couple.

When Irene and I realized that the writing exchange we had begun as a way to explore and share our thoughts and beliefs about mortality might end up becoming a book, we were particularly enthusiastic about bringing to the fore the subject of death. It’s almost cliché these days to note that our culture is youth obsessed and death averse. As a society, we’d just rather not talk about it. I still recognize that to be true in at least a superficial way, but there is another truth that sits comfortably alongside it: Despite the avoidance in our culture as a whole, there still are a great many people who are very interested in learning and talking about death and dying, but who are inhibited for any number of reasons. They’re uncomfortable bringing it up in a group. They want to talk about it but their (spouse, child, partner, friends) won’t go there. It’s scary. They don’t know where, or with whom, to start. And so on.

But the interest is undeniable, so in discussions about the book there has been no shortage of people ready to engage on the topic of that stone that rests inside them. And when people start to talk about death, they mostly have one thing in common: They tell stories. Stories about when a parent or spouse died. Stories about when a child died, or a friend. Stories about their own experiences with a life-threatening illness. There isn’t necessarily a point to each story beyond the telling itself. These stories are important, though. They are how we share what we know and believe. They’re how we learn what we ourselves believe, and maybe what we want in our lives and our eventual deaths. They’re honest and heartfelt stories, with a need-to-be-told quality. They just need a place to be told. I now wonder if what we have in our culture isn’t really death aversion, at all, but a logjam of death conversations waiting to be released.

There is another commonality among the people interested in engaging with me about the book: age. When Irene and I spoke recently to a full house at the Norwich Bookstore, I saw only two people I assumed were under 45 years of age. Everyone else seemed at least in their 50s; most were a good bit older than that. I know that’s not surprising. It makes sense that people getting into their later years, as well as people of any age facing life-threatening or life-ending disease, would be the most likely to want to talk about death and dying. And, after all, that group in Norwich was an engaged and articulate bunch. Still, I keep hoping for a broader age range. My son is 38, and I think of him as being squarely in our target audience. I recently spent some time with a 28-year-old man with incurable cancer, and had some wonderful conversations with him about what he was facing. I thought at the time that any other 28-year-old could benefit from talking with that fellow, followed perhaps by some internal dialogue about mortality, and then by sharing those thoughts with people close to them.

Why bother? I do sometimes ask myself that question. When Irene and I wrote a column last fall for an NPR science and culture blog, one of the people posting a comment afterward said that when it came to death, he would just “play it by ear.” It might be a good plan. Millions of people undoubtedly have gone through life without spending a lot of time thinking about death, and have managed to successfully die when their time came. But there are potential problems with avoidance. It’ll work fine, I guess, if you get hit by a bus or if you have a heart attack and you’re dead before hitting the ground. But what if you have a stroke, and are left aware but incapacitated for a long time? What if you get cancer, and have a decline of months or years before you die? What if the people around you aren’t prepared for you to die, and will struggle to cope? And what if it’s not you, anyway? What if your husband or wife has that stroke, or that cancer, and you’re facing death, once removed? Time spent thinking about mortality now, getting comfortable with it, accepting its inevitability, will certainly change your experience with those challenges, and perhaps change the way you look at the life you’ll live between now and then.

I don’t suggest that you become obsessed with death. Spend some time thinking about it. Engage family and friends in conversation to hear their ideas and beliefs. Use those conversations to refine, or at least better understand, what you yourself want and believe. Resolve to do this every now and then to note any changes in what you want and believe about death. And otherwise let it go. It won’t go far. It’ll be there when you need it.

Complete Article HERE!

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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!

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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!

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Government program funds funerals for B.C.’s deceased homeless

By IAN BAILEY

Homeless in his last days, Joerg Brylla did not leave assets to pay for a lavish funeral and eternal place of rest.

homeless-1

But, today, Mr. Brylla’s ashes are behind a brass plate labelled with his name and lifespan – 1945-2014 – in a brick wall at a North Vancouver cemetery. There’s a forest setting and a nearby pond. The cost to inter Mr. Brylla, who died of natural causes in a protest camp over affordable housing in Vancouver’s Downtown Eastside, was covered by the B.C. government as a part of a program that addresses the fate of the homeless when they die.

The Vancouver funeral home that handles many government-funded funerals happened to have space in the North Vancouver cemetery where it sent the remains of 69-year-old Mr. Brylla, also known as Bunny George – the focus of a recent Globe and Mail investigation into his eventful life and tragic death.

The situation reflects the reality of attending to the remains of the homeless in British Columbia – not only funeral costs, but also the rites and traditions of gathering to pay tribute to people who die without addresses, and often without salient facts of their lives being known.

In Mr. Brylla’s case, the North Vancouver cemetery fit within the budget set by the Ministry of Social Development, said Corey Dixon, assistant manager of the Glenhaven Memorial Chapel on East Hastings. Mr. Dixon said he did not have a specific cost figure at hand. He said Glenhaven handles 270 to 300 such funerals each year.

The social-development ministry said it spent $3.2-million in the last fiscal year on 2,000 services as part of its funeral supplement program, which can involve the deaths of homeless people, as well as others lacking funds to cover costs.

In a written response to questions from The Globe, Charlotte Poncelet, the executive director of the British Columbia Funeral Association, said funding has not increased since 2008, so its members “frequently financially subsidize these services because they believe that a person’s financial means does not diminish the significance of their life.”

Many people buried under the program are sent to the Surrey Centre Cemetery, which is more affordable than elsewhere in the Vancouver region, although families can make their own recommendations. Outside the Lower Mainland, people are buried wherever space is available.

At the Surrey cemetery, labourer Matthew Scozzafava said there is no paperwork to designate the homeless over others being interred. Sometimes, he and his crew are the only people on hand to bid farewell to the deceased.

“The only time we would know if they are homeless or not is if a loved one or a friend of the family or their friends have shown up and they tell us that sort of thing,” he said. He recalls one occasion where about 40 people from the Downtown Eastside came out to the service by vans and buses – “however they needed to get out here.” Sometimes, family of the homeless turn up after the fact.

But the final rest is only a prelude to tribute and commemoration, which is handled differently by various agencies. No one has ever died at Insite, the safe-injection site in the Downtown Eastside, but memorials for those who die homeless are especially important to the neighbourhood, said spokesperson Darwin Fisher. There are no newspaper obituaries for such individuals, Mr. Fisher said in an e-mail exchange. “But their life and the love and loss felt by the community needs to be acknowledged.”

At Insite, memorials are held in a nearby community garden or a coffee lounge on site. They can feature singing, drumming, speeches or a simple prayer with informal stories. Often, there’s a memorial poster with a photo of the deceased.

“I was so shocked when I overheard a person say, ‘I can’t wait to die so I can get a poster like that …’ It’s so sad that the person who uttered that felt so little loving acknowledgement in their life,” Mr. Dixon wrote.

homeless

Pastor Bob Swann of the First Baptist Church in downtown Vancouver, who presided over Mr. Brylla’s memorial service, said he does about one such tribute a year.

“Every story is quite unique,” Mr. Swann said, adding there is a service whenever word comes in that someone associated with his church’s shelter program has died – in dumpsters and elsewhere on the unforgiving streets, without addresses.

“The memorial service is more about those who remain, to teach them that, ‘Yes. This person has passed away, but they did, this, this and this,’ and they meant something to us and were part of our community.”

He said death equalizes the homeless with those who are better off. “We all leave here with nothing,” he said.

Complete Article HERE!

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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.

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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.