I’m 34 years old, and I’ve never seen a dead person.
This strikes me as odd. I ask my friends about it. Some of them are doctors and are surprised; a few have been to open-casket funerals. But many are like me: they’ve witnessed any amount of on-screen, simulated carnage, and nary a real-life death.
Flick around television channels of an evening and there’s no shortage of corpses. In nightly crime dramas they’re being unearthed in the foundations of buildings, stumbled upon by unsuspecting dog-walkers, stretched on slabs at the city morgue.
I can’t help but feel, lamely, that it’s different in real life. And that our ancestors would have found my glib familiarity with fictional homicide, combined with my complete inexperience when it comes to “normal,” everyday death, bemusing.
American surgeon and writer Atul Gawande observes that as recently as 1945, most deaths occurred in the home. By the 1980s, that figure was down to 17%. A 2014 report from the Grattan Institute noted that 70% of Australians want to die at home, but only about 14% do: “dying in Australia is more institutionalised than in the rest of the world.”
Even in fiction – whether on page or screen – the routine sort of dying doesn’t appear as much as it used to. I’ve spent an inordinate amount of my life reading Victorian novels, which major on the deathbed scene. Charles Dickens and his contemporaries are often sneered at for the sentimentality of these moments. But, if I’m honest, I find it difficult to gauge their unrealism.
Most of us simply have not been there. We have not sat up nights, part of a family chain of round-the-clock care. We have not listened for final words, fielded final requests, sat vigil over the body of a loved one once the struggle is over. We have not seen death as part of the furniture of our lives; it has been banished from the familiar rooms where the rest of our memories accumulate.
It’s natural that, as the experience of tending the dying has disappeared from the lives of almost everyone not professionally involved in the task, it has disappeared too from the stories we tell. And perhaps it makes sense as well that, as we’ve gradually cordoned death off from everyday life, various forms of assisted dying have become more and more plausible, even appealing to us.
I’ve watched the euthanasia debate gear up once again, with recent laws passed in Victoria and narrowly defeated in NSW. I’ve felt uneasy about it, but also unqualified to comment. I am not elderly, or terminally ill. I have not had to suffer with a loved one as they died a painful, protracted death. I’ve never even seen a dead person! What do I know about it?
But I have begun to ask, lately, if my (relative) youth and (near-total) ignorance are precisely why I should care where this conversation takes us, and why my opinion ought to count.
This society is the one I will likely live in for some decades yet, and the one I’ll die in when the time comes. It’s the one in which classmates and friends of mine have been committing suicide for the last twenty years, and where the generations behind us are bumping up against an ever-spiking youth suicide rate. It’s the society that will shape how we approach our own deaths, and what choices are then opened up or circumscribed for us, what choices seem rational or normal or honourable. It’s the one where we never seem to talk about what dying is really like, or should or could be like.
What is decided now about death and dying matters to me. The question, What is a good death? matters to me.
The phone buzzes for thee
I downloaded an app recently called WeCroak. Bianca Bosker, in a write-up for The Atlantic, calls it “the anti-app” because it exists not to push advertising or to pull me into its orbit, but to communicate a single message: “Don’t forget, you’re going to die.”
WeCroak explains that in Bhutan, they have a saying that contemplating death five times a day brings happiness. So five times a day, at random intervals, my phone buzzes, and there’s the little frog, with the same reminder: “Don’t forget, you’re going to die.”
Click through and you get a bonus quote about death, or life. Sogyal Rinpoche:
“Death is a mirror in which the entire meaning of life is reflected.”
Is an art, like everything else.”
“Life is to be lived, not controlled, and humanity is won by continuing to play in face of certain defeat.”
Bioethicist Margaret Somerville explains that we all have a fear of death – natural and understandable – and that we once dealt with that fear in a given place, at a certain time:
“We went to synagogue, mosque, prayer house, church, whatever it was, to engage in what I call ‘death talk’. We need to have this discussion of death with other people to be able to live reasonably comfortably with the knowledge that we will die, to accommodate that fact into the living of our lives.”
For generations, Christians specifically petitioned God for the lingering kind of death that most of us now dread. They wanted time to die “well” – to get their spiritual lives in order before departing.
She describes the euthanasia debate as a form of “death talk” filling that void; and euthanasia itself as a “control mechanism for the fear of death,” a way of dealing with a “free-floating anxiety” about our inevitable demise for which we have no outlet.
The Bhutanese are mostly Buddhist, but the idea that regular reminders of death are key to a useful, contented life is common in the Western religious tradition as well. The ancient Jewish book of Ecclesiastes is blunt, and startling: “It is better to go to a house of mourning than to go to a house of feasting, for death is the destiny of everyone; the living should take this to heart.”
Likewise, the Hail Mary confronts those who pray it again and again with that moment of future extremity, urging the mother of God to “pray for us sinners now and at the hour of our death.” The Book of Common Prayer entreats the Almighty to preserve us “from sudden death.”
For generations, Christians specifically petitioned God for the lingering kind of death that most of us now dread. They wanted time to die “well” – to get their spiritual lives in order before departing. We want to go in our sleep, quickly and quietly, no pain, no burden to anyone else. Essentially, we want to skip the dying part that precedes death – we don’t want to be there, to be present, when it happens.
Death at a funeral
An Anglican minister I know told me about a funeral he conducted recently. He didn’t know the deceased, who was a policeman. There were about 130 people there, mostly cops and bikies. The funeral service involves a sermon, which in this case went something like: we stand in the presence of death here, a sobering reality; comfort may be found in Jesus, the good shepherd; it is better to go to the house of mourning than the house of feasting, because this is the end for us all.
Two days later, he got a phone call from the brother of the dead man, who wanted to thank him, and also offer some “feedback.” This was a first for my friend after a funeral; but he’s always happy for feedback, he told the man. The brother explained: “Some of the cops in particular … they just thought that you talked a little too much about … death.” Sounding just a bit sheepish, he started to backtrack: “Not that that’s probably not appropriate at a funeral …”
Not even in church these days will you usually hear much about death. In December 2008, I sat in the pews of a church in Cambridge as the vicar explained to his congregation the diagnosis he had just received: gallbladder cancer, which had spread to the liver and was past either surgery or radiotherapy. The oncologist had given him a prognosis of six to nine months.
I had arrived in the UK and on the doorstep of this church only weeks before. Mark had greeted me warmly at the entrance. (He was delighted to hear I’d just moved to Cambridge from Sydney, and asked eagerly whether I knew the Andersons? I refrained on this occasion from pointing out that Sydney is a pretty big place, actually – partly out of politeness, but partly because, well, I did know the Andersons.)
Mark had been vicar of St. Andrew the Great for more than twenty years. He was loved and respected by both the oldest and the newest members of the church. But in the months that followed he spoke often and freely from the pulpit of his failures – including his neglect of a task that he believed was incumbent on him as a pastor: preparing us for death. He quoted Sir Thomas Browne: “The long habit of living indisposeth us for dying.” With humour, honesty and a radiant joy, he gently turned our attention again and again to the reality of death and how the process of dying could be navigated. He showed us what it was to die well; helped to expand our moral imagination when it came to the prospect of our own deaths.
Who is preparing you to die? Who fills that role for most of us? Andrew Denton, television personality and founder of Go Gentle Australia? Dr Philip Nitschke, director of Exit International?
In October last year, Exit International announced the launch of the “Sarco” capsule, a euthanasia machine developed in the Netherlands by Nitschke with engineer Alexander Bannink. The press release images show a sleek, space-age-looking lozenge plonked in a green field, or on a beach at sunrise. The Sarco can be 3D printed and assembled by anyone. The user then completes an online mental questionnaire in order to access the capsule, clambers inside, closes the lid and waits as liquid nitrogen depletes the oxygen level in order to bring about a rapid and peaceful death. The capsule can then be detached from the reusable base and used as a coffin, and another one then printed in its place for the next user.
I did some googling when I came across this macabre story to make absolutely sure it wasn’t satire. Nope; serious news outlets were reporting it across the board. I couldn’t help but wonder: has Philip Nitschke never read a dystopian novel? A novel where life becomes so “civilised” – so hygienic, so controlled, so un-messy – that it crosses the line from humanity to horror?
Is uninterrupted comfort and pleasantness truly my highest goal for the length and breadth of my life? Is it a worthy one?
In Aldous Huxley’s Brave New World, “the Savage” John, in his climactic conversation with the Controller, Mustapha Mond, objects to his society’s determination to edit out everything that might be unpleasant. “We prefer to do things comfortably,” the Controller explains.
“But I don’t want comfort. I want God, I want poetry, I want real danger, I want freedom, I want goodness. I want sin.”
“In fact,” said Mustapha Mond, “you’re claiming the right to be unhappy.”
“All right then,” said the Savage defiantly, “I’m claiming the right to be unhappy.”
“Not to mention the right to grow old and ugly and impotent; the right to have syphilis and cancer; the right to have too little to eat; the right to be lousy; the right to live in constant apprehension of what may happen to-morrow; the right to catch typhoid; the right to be tortured by unspeakable pains of every kind.” There was a long silence.
“I claim them all,” said the Savage at last.
How is it that we read the dystopias of Orwell or Huxley and see Donald Trump, but not assisted dying?
The search for meaning
Like “the Savage,” I feel pretty hesitant about “claiming” the right to grow old and ugly, to get cancer, to be hungry or in pain. I avoid physical and emotional discomfort, let alone outright pain, at just about any cost. I dread the losses and indignities of serious illness as much as the next person. I’m drawn to the logic of euthanasia, that a “good death” primarily means one that involves a minimum of suffering, of any kind.
But I’m also repelled by it. Is uninterrupted comfort and pleasantness truly my highest goal for the length and breadth of my life? Is it a worthy one?
Contemporary Western culture is historically and globally unique in its approach to suffering. Every other culture and religion seems to have provided its members with a story and a set of resources that help them face up to terrible hardship and evil. Some interpret suffering as a means to the development of character; others as part of a cycle of karma and reincarnation leading to eternal bliss, or a road to enlightenment. The common theme is that, in spite of its horrors, suffering can be an important means to fulfilling the purpose of our lives. As the anthropologist Richard Shweder writes: “Human beings apparently want to be edified by their miseries.”
Not so for the modern secular West. If the material world is all there is, and the meaning of life is found in freedom and happiness, then suffering can only be an interruption to our individual stories, an anomaly to be smoothed out as quickly as possible by medical, psychological, or political means. As New York pastor and writer Timothy Keller puts it:
“The end result is that today we are more shocked and undone by suffering than were our ancestors … Life for our ancestors was filled with far more suffering than ours is. And yet we have innumerable diaries, journals, and historical documents that reveal how they took that hardship and grief in far better stride than we do.”
Our conversations about mental health in particular are starting to push back against this narrative. Psychiatrists have questioned whether the Bible of their craft, the DSM (Diagnostic and Statistical Manual of Mental Disorders), has unhelpfully medicalised and then medicated ordinary, and important, human experiences of grief and sadness. Psychotherapist and anthropologist James Davies explains:
“The growing influence of the DSM was one among many other social factors spreading the harmful cultural belief that much of our everyday suffering is a damaging encumbrance best swiftly removed – a belief increasingly trapping us within a worldview that regards all suffering as a purely negative force in our lives.”
Our society does an impressive job of eliminating much of the pain and loss that was inevitable for previous generations. It doesn’t do nearly so well at providing us with resources for how to deal with suffering when it does come knocking – as it still does, with absolute inevitability. The appeal of assisted dying rests on the premise that suffering can only be pointless, and that the most dignified response available to us is to bypass it politely.
Not all alternatives to this response are explicitly religious. Man’s Search for Meaning , that stunning contribution to the human understanding of suffering written by psychiatrist and Holocaust survivor Viktor Frankl, is a kind of meditation on Nietzsche’s contention: “He who has a why to live for can bear with almost any how.”
The book’s original title was Saying Yes to Life in Spite of Everything: A Psychologist Experiences the Concentration Camp. Frankl describes his three years in Auschwitz and other camps in terms profoundly unfamiliar to us. His account is not an attempt to grapple with evil, but an exploration of how even the outermost extremity of human suffering can be laden with meaning, can become, astoundingly, an opportunity rather than an impossible burden and waste:
“Suffering had become a task on which we did not want to turn our backs. We had realized its hidden opportunities for achievement, the opportunities which caused the poet Rilke to write, ‘Wie vie list aufzuleiden!’ (How much suffering there is to get through!) Rilke spoke of ‘getting through suffering’ as others would talk of ‘getting through work’. There was plenty of suffering for us to get through.”
Frankl’s almost cheerful contention that suffering can be a human task and a human achievementis disorienting, even appalling to the twenty-first-century ear. But it’s hard to maintain that, either personally or professionally, he does not know of what he speaks.
What is a good death?
Is there a right and a wrong way to die? Or a worse and a better way? We do on the whole, I think, want to “live well” and devote our energies both to figuring out what that means and then trying to achieve it. But it sounds odd to suggest that dying is also a moral enterprise, a task that some might perform “better” than others. There’s no right or wrong way to grieve, we say. Everyone grieves differently. And surely dying is the same.
One of the obstacles to approaching death as something we might want to “do well” is the silence in which the experience itself is shrouded.
Certainly when it comes to grieving, past generations would have assumed that there were right – or better – ways to go about it. There were rituals to perform, motions to be gone through, outward symbols of inner processes accepted and understood by everyone. Wearing black for twelve months after a husband’s death seems restrictive, but is there something healthier about it than our own attempts to “move on,” to resume “normal” life within days or weeks of a seismic loss? Is there a comfort and purpose in knowing exactly what is to be “done,” what is expected of us, at a time of shock and deep sadness?
One of the obstacles to approaching death as something we might want to “do well” is the silence in which the experience itself is shrouded. Dread feeds on the unknown. For instance: how much does it hurt to die? A fearful lot, surely. The stories that do filter through the wall of silence are of excruciating final days or even weeks, deeply traumatic for the sufferer and also for their family. Is that simply what death is like?
The experts say no. In a recent article for The Conversation, researchers from the University of Wollongong write that more than 85% of palliative care patients have no severe symptoms by the time they die; that pain, fatigue, insomnia and breathing issues actually improve as people move closer to death. They cite the Australian Palliative Care Outcomes Collaboration, which found that 7.4% of patients reported severe pain at the beginning of palliative care, and 2.5% reported severe pain in the last few days.
A 2015 paper in the medical journal Psycho-Oncology, “Conceptual analysis of suffering in cancer: a systematic review,” also emphasises the non-linear trajectory of suffering. The authors note that, rather than simply getting worse and worse as an illness progresses, pain oscillates, it comes and goes. They also observe that pain and suffering are not the same thing; and that one of the pathways to follow suffering is an experience of transcendence, rather than continued suffering.
I feel cautiously reassured by findings like these. I’m also struck by the fairly high consistency of medical opposition to assisted dying. Of the World Medical Association’s 109 constituent National Medical Associations, 107 oppose euthanasia and physician assisted suicide. In 2016 the British Medical Association voted 63% to 37% against changing its stance on the issue even to a neutral one; it was the seventh time in ten years that the proposal had been raised, and voted down, at their annual meeting.
If doctors oppose euthanasia in greater numbers than the general public; if palliative care doctors oppose it in greater numbers than their colleagues in other fields, as also seems the case; then it does look rather like the closer you get to the daily realities of death and caring for the dying, the less appealing euthanasia looks.
And yet, those stories. Heart-rending accounts of physical and mental anguish, undiminished by the drugs available; the helplessness and fury of loved ones; the full ugliness of death. Regardless of how rare this is, the only humane response seems to be: how can we make sure this never has to happen, to anyone? Can’t we do something? This is only to acknowledge that lines are blurry; the jaggedness of human experience is irreducible, imperative, and not to be gainsaid. We face terrible choices and do our best.
The law passed late last year in Victoria legalises assisted dying, as distinct from euthanasia: doctors will not be directly administering drugs to end patients’ lives, but rather patients will have the right to request a lethal drug in order to end it themselves. The distinction is not a minor one. But the question behind both is the same: what makes life worth – or no longer worth – living?
If it takes a culture where pain and suffering are assumed to be largely purposeless to make assisted dying legal, the value that we place on individual autonomy is presumably also a factor.
Atul Gawande, in his book Being Mortal: Illness, Medicine, and What Matters in the End , tells the story of Susan Block, a palliative care specialist who teaches doctors how to manage end-of-life conversations with patients and their families. Despite her expertise, when it came to her own father’s illness, she found it incredibly difficult to discuss his wishes with him.
The night before her father Jack Block, a professor emeritus of psychology, was going under the knife for a risky procedure to remove a mass growing in his spinal cord, she forced herself to initiate the topic. “I need to understand how much you’re willing to go through to have a shot at being alive,” she told him, “and what level of being alive is tolerable to you.” His answer shocked her. If he was able to eat chocolate ice cream and watch football on television, he told her, he was willing to put up with whatever else came with that. “I would never have expected him to say that,” Block said. “I mean, he’s a professor emeritus. He’s never watched a football game in my conscious memory. The whole picture – it wasn’t the guy I thought I knew.”
It was a crucial conversation, not least because complications arose following the surgery and Susan was asked by the surgeons whether or not they should proceed, at the risk of quadriplegia and ongoing pain. Would he be able to eat chocolate ice cream and watch football? she asked them. They said yes, and she gave them the go-ahead. What followed was two years of painful rehab and severe disability – as well as ten years of life in which Jack wrote two books and more than a dozen scientific articles.
Suffering need not be meaningless; and our humanness may be found as intensely, if not more so, in our limitations as in our supposed autonomy.
If we tend to measure our lives according to our levels of independence and productivity, then dying “with dignity” will involve choosing death at a time before those things are stripped from us. So the question becomes – a question with profound implications for the most vulnerable among us, including those with life-long disabilities – in what does our humanness consist? Are we most human at our most self-sufficient, or when most interdependent with others?
“The younger we are, the more people we need to live,” writes the Catholic priest Henri Nouwen in an extended meditation on death and dying, “and the older we become, the more people we will need again to live. Life is lived from dependency to dependency.”
The story of Jack and Susan Block suggests that, when it comes down to it, our lives continue to be valuable to us – and to others – even with the loss of many or most of the things that once gave interest and purpose to our days. Suffering need not be meaningless; and our humanness may be found as intensely, if not more so, in our limitations as in our supposed autonomy.
I want to know what it is to die well. I want to be shown. I have no idea if it is a fair or reasonable demand to make, least of all of people navigating the anguish and upheavals of a terminal illness. It doesn’t feel fair at all, actually. Like life. But if there are good or better ways to encounter and engage this universal process; if the chain of that knowledge has been broken, and no generation now alive has retained it; then the art of human dying is one that we will need to rediscover by personal experience and example. We will need to figure out anew how a “good” death can be one of presence, rather than of abdication.
It is not, I think, the proposed laws that bother me so much as the cultural framework that has made them look inevitable – that has made an early exit look like the most humane, compassionate option.
I read the records of past lives and past deaths left us in the pages of history and of literature, and get glimpses of how radically different things looked to those who came before. And I know I’m missing something. Alice James, the sister of novelist Henry and philosopher/psychologist William, when she received a terminal diagnosis a year before her death, was able to write in a letter:
“It is the most supremely interesting moment in life, the only one in fact when living seems life, and I count it the greatest good fortune to have these few months so full of interest and instruction in the knowledge of my approaching death. It is as simple in one’s own person as any fact of nature, the fall of a leaf or the blooming of a rose, and I have a delicious consciousness, ever present, of wide spaces close at hand, and whisperings of release in the air.”
And just like that, my own culture’s definition of a good death seems thin, insubstantial, impoverished. I feel cheated. I want a richer conversation, a fuller picture. I want to know what it is to die well.
This article first appeared in ABC Religion & Ethics.
Natasha Moore is a Research Fellow with the Centre for Public Christianity. She has a PhD in English from the University of Cambridge, and is the author of Victorian Poetry and Modern Life: The Unpoetical Age.