When I learned of the late Paul Kalanithi’s memoir When Breath Becomes Air, which published earlier this year, I felt drawn to its premise. A young doctor with great ambition receives a terminal cancer diagnosis and reports back from the twilight of his life on his quest to seek and find meaning.
Feeling unsure of my own purpose in life, I wanted Kalanithi’s journey to become a beacon to guide my own wandering. Perhaps, I hoped, he might be some kind of oracle.
But that is not the design of Kalanithi’s gripping, emotional book. You, dear reader, are not meant to passively observe Kalanithi’s final moments, glean his wisdom and walk away feeling assured in your path.
Instead you will bear witness to his yearning, suffering and grace. You will watch as lung cancer annihilates his dreams of becoming a renowned neurosurgeon and doctor-philosopher. You will ask yourself if you’ve ever worked as hard as Kalanithi, who commits himself to relentless hours as a medical resident performing high-stake surgeries — even as he tries to dodge death.
As unbearable as that sounds, the pull of this narrative is magnetic. More than a year into parenthood, I hadn’t finished a single book — yet I could barely put down When Breath Becomes Air. Almost nothing else felt as important.
That the book demands your presence is a credit to Kalanithi’s captivating prose. Whether he is describing in vivid detail a midnight hike in the Eldorado National Forest (“pitch-black, stars in full glimmer, the full moon still pinned in the sky”) or his desire to bridge the worlds of literature and neurosurgery (“I had come to see language as an almost supernatural force”), Kalanithi’s sentences are both urgent and poetic.
Others in a similar position might be tempted to sanitize their life. Here’s a man who is candid about his marital troubles. He confesses that he finds himself drifting into becoming a doctor who just goes through the motions:
All my occasions of failed empathy came rushing back to me: the times I had pushed discharge over patient worries, ignored patients’ pain when other demands pressed. The people whose suffering I saw, noted, and neatly packaged into various diagnoses, the significance of which I failed to recognize — they all returned, vengeful, angry and inexorable.
Kalanithi even admits that he suspected cancer months prior to the official diagnosis. His account would have been richer with an exploration of why he dismissed those prescient instincts, but the reader can’t fault a man who has so little time for self-examination.
When Breath Becomes Air is an imperfect book, but it draws its power and permanency from those limitations.
Kalanithi died before finishing the memoir in March 2015, at age 37. His final passage is a moving dedication to his infant daughter (and is followed by an explanatory epilogue from his wife). But before he writes those tender words, he leaves the reader with a gift of their own:
Everyone succumbs to finitude. I suspect I am not the only one who reaches this pluperfect stage. Most ambitions are either achieved or abandoned; either way, they belong to the past. The future, instead of the ladder toward the goals of life, flattens out into a perpetual present. Money, status, all the vanities the preacher of Ecclesiastes described hold so little interest: a chasing after wind, indeed.
Kalanithi makes no attempt at reassurance. The end is not tidy or filled with comforting platitudes. He makes no effort to find a reason in his death. I had read every page with anticipation, waiting for Kalanithi to share adages born of introspection and tragedy, I had missed the point all together.
Kalanithi’s wisdom lay in wrestling with the toughest questions humans can ask of themselves, even if they go unanswered. That bravery, standing at the edge of the abyss with fortitude, is what gives us meaning. And it’s what made Kalanithi a courageous doctor and human being.
When Breath Becomes Air is essential reading in a world where we try so hard to exercise control over the unpredictable. While the miracles of science and technology are worthy of our praise, we lose something vital when we forsake ambiguity for certainty.
Kalanithi understood that we learn who we are when we remain still in moments of confusion and crisis, when we pause to ask the terrifying questions. And then we keep moving forward even when it feels impossible.
“I began to realize that coming face to face with my own mortality, in a sense, had changed nothing and everything,” Kalanithi wrote. “Seven words from Samuel Beckett began to repeat in my head: ‘I can’t go on. I’ll go on.’”
As our longevity increases, we are starting to see death as something to be controlled and rebuffed, not as a collective sorrow to be shared
Where death was traditionally presented as a release from the mortal coil, now it is the enemy, something to be challenged and delayed.
Winter is a time for my suit, not for warmth but for attendance at funerals; it’s the season for dying. I walked back from one such event with Nicole, who has a progressive take on life.
“It’s all such a sham,” she exclaimed. While I agreed, I thought it wise to ask her what she meant, in case we were not in accord.
“I mean, who believes all that guff now, heaven, happy in God’s care and looking down with love hokum?”
That evening my grandson Daniel dropped by and remarked on the suit.
“Another one bitten the dust?”
Like so many of his age, he’s currently out of work, but I doubt the diplomatic service will be headhunting him. It was a surprise, therefore, when he engaged me in a serious discussion about death, what I thought, what he felt, how his friends saw it. As we talked on, it became clear that he was sensitive to the imminence of death in a way which I had never been at his age. Then I remembered that one of his old school friends had been wasted in Afghanistan.
Yet still it made no sense. After all, 100 years earlier everyone in this country would have known a casualty, and not just of war, but of birth, of infancy, of untreatable conditions aggravated by lack of hygiene and unsafe work; death was a regular visitor.
So, in our world of longevity, where over-65s are living longer than ever before, my grandson’s angst intrigued me. It was not untypical; I’d come across it in many young people. One explanation, as Nicole had implied, was the decline in religion. We have lost our sense of the numinous, of a dimension beyond. Where death was traditionally presented as the gateway to the hereafter, it is now simply the terminus of the here and now. The faith thesis depended for its efficacy on a less than celebratory approach to life. Death served to release us from what was presented as an uncomfortable, almost irrelevant mortal coil. And we prepared for it; to have paid for one’s funeral materially was the mark of a civilised person. Death was an integral part of life.
Today the mortal coil is all we believe we’ve got and its experience has become substantially more comfortable and convenient – and precious. There is now so much more to lose, to look forward to, to miss out on. Death has become an insult against lives that are so immediate, so now, so instant. It has become a challenge, as human knowledge of our biological flaws increases and the technology for repairing them improves. Indeed, it has acquired the status of a disease, one that perhaps we will never eradicate but that can be indefinitely delayed; or managed, its indignity evaded by an offshore arrangement in Switzerland. Either way, it’s something to be controlled. This transformation is in part due to social media and its capacity to inform us about every tragedy within nanoseconds of its event, making us pieces of the global village, where any man’s or woman’s death diminishes us.
Except, uncomfortably, we do not feel diminished by any death – we are increasingly selective. Daniel’s angst is a phenomenon of the rich world. The sad fact is that we in the developed world are all less and less attached to the world, because we are preoccupied with our personal archipelagos. The wars and disease, the deprivation and disasters, do not encroach on us, particularly the young. We are insulated against the death of strangers by a selfie culture that views the world through the lens of its own ego.
The developed world is starting to see death as a personal affront to be rebuffed rather than a collective sorrow to be shared. I’m not sure that’s progress.
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.
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.
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 ProfoundlyChange 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.
Since physiological support like respirators and defibrillators made it possible to prolong life, prolonging death has fueled a more subtle conversation
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.
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.”
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.”
Homeless in his last days, Joerg Brylla did not leave assets to pay for a lavish funeral and eternal place of rest.
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.
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.
