By all accounts, my grandfather died a good death.
At the end, he was surrounded by his loved ones while a mix of benzos and barbiturates glided through his veins, until the purr of his breath slowly slipped away underneath the oxygen mask that straddled his face. Those of us who were there left the room when the machines were unplugged and his body still warm, abated, albeit slightly, by the comfort that we were there to witness him die. In the adjoining room, we exchanged stories about him and assured ourselves that because he was surrounded by his loved ones, as deaths go, his was just about as good as it gets.
This was over two years ago, well before a pandemic would reconfigure the end-of-life landscape, forcing many of us to ponder the likely possibility of our most perennial mortal fear: that of actually dying alone. “A brutal hallmark of the pandemic is the way it isolates its victims even in their final moments,” report Jennifer Levitz and Paul Berger for The Wall Street Journal. “Patients die alone in hospital rooms, cut off from their spouses, children, siblings and often their pastors or rabbis. The emotional end-of-life moments, if they happen at all, unfold over an electronic tablet or phone, with a stranger serving as an intermediary.”
For many, but especially the elderly, the mere thought of dying in an empty room, with no one familiar there to witness their fade into black, can cause so much terror that it can even, in and of itself, be fatal. “As the quarantine wears on, Dr. [Robert] Roca [chairman of the council on geriatric psychiatry at the American Psychiatric Association] said, isolated elders are especially prone to brood on their fears, and to magnify them,” write Joseph Goldstein and Benjamin Weiser for the New York Times. “This brooding, in turn, intensifies loneliness and anxiety, which both have severe health consequences. The virus does not create these fears, but it enlarges them in people who are most vulnerable. It is one thing to imagine dying on a ventilator, or not being able to get one; it is another to imagine doing so alone.”
Such is the case for retired nurse Shatzi Weisberger, who told the New York Times that she would “not go to the hospital under any circumstances,” for fear of dying among strangers, “cut off from the people she cared about.” The same is true for Ilin Lo, who “lives alone in Fresh Meadows, Queens, and until recently relied on the Nan Shan Senior Center in Flushing for both food and social connection.” “I’m very afraid of dying alone,” she told the New York Times, speaking through an interpreter. “If I had a normal illness I could ask my children to come to New York. But with the coronavirus, I cannot ask them.”
In many parts of the world, but especially in the West, headlines about patients dying alone in their homes or in hospital beds, without any relatives, haunt the living. Sean Hughes, a lecturer in palliative care at Lancaster University in the U.K., tells me that this fear is an outpouring of our feelings toward loneliness writ large. “We carry negative views about being ‘alone’ in many contexts — not just at the end of life — and are given to conflate this with ‘loneliness,’” he tells me. “The two things are clearly not the same.”
Allan Kellehear, a medical and public health sociologist with interests in death, dying and end of life care, notes in his paper on this subject that there are serious problems with the common habit of confusing “alone” with “lonely,” not least because, “as several researchers have observed in purely theoretical terms, the first experience does not necessarily lead to the second.” “‘Dying alone’ does not even mean the dying were isolated (or lonely), and those isolated (or lonely) don’t always experience ‘dying alone,’” writes Kellehear.
This conflation — which stems less from not actually having anyone around when we die, but rather from the cultural perception that contends that a person alone isn’t loved — gets to the heart of why the fear of dying alone is so heightened. “I always assumed that I would spend the perimenopausal years of my life living alone in an unfurnished studio apartment, shouting incorrect Jeopardy! answers at my ancient television set and keeping company with none but a feral cat,” Samantha Irby begins in her essay I Planned On Dying Alone for New York magazine. Her takeaway is the same as it is in countless other essays, movies and books contending with the mere possibility of dying alone: Now that I’ve found a partner, my life is better in part because at least someone will be there to watch me die.
Her rumination on finding love and avoiding the assumed worst possible outcome for an end of life scenario — that of dying alone — extends out of the common fear of living without love. In that respect, not dying alone becomes something to be conquered. Alternatively, it’s framed as “I’m okay with dying alone,” becoming an assertion of self-actualization.
Pushed to its inevitably absurd limit, our fear of dying alone incites its own brand of gallows humor, with one particular joke so pervasive that my colleague Ian Lecklitner based an entire article on it earlier this year: “If I Die, How Long Will My Dog Wait Before Eating Me?” This idea of being devoured by our pets has become cultural shorthand for every fear about dying alone that we harbor, but even so, it’s really a distraction — an image gruesome and shocking enough to provoke a nervous giggle, but hiding the real horror, which is that we have so little human interaction, no one notices when we disappear.
But it’s hard to say which came first — our cultural perception and subsequent fear-mitigating humor, or the actual fear itself. According to a 2004 analysis of newspaper accounts of people who die alone, it’s obvious that the media has, for years, regarded dying alone as a “bad death.” “Dying alone is represented as a fearful fate and a moral affair, often being the outcome of an undesirable personal character, either of the deceased or of onlookers, or involving the failings of society at large,” writes the study’s author. In the same paper referenced above, Kellehear categorizes the media’s depiction of those who die alone as “Tragics.” “The media are most fond of this social image,” writes Kellehear. “Here, those who die alone are considered the ‘forgotten.’ People who die alone are tragic figures — either they have lived a life as a social failure, without love, respect or social accomplishments, or they have been isolated through no fault of their own and it is ‘society’ that has cruelly withdrawn its supportive social web or canopy from them.”
Hughes suggests a similar problem in the way that dying alone has often been portrayed in movies. “Culturally, I think we in ‘the West’ perhaps (without wanting to over-generalize) have unconsciously imbibed a notion of what constitutes a ‘good death,’” he says. “This has features of calm, peacefulness, acceptance, warmth, often with a loving family gathered around the bed while the person slips quietly away. Many older films portray dying this way, for example.” As such, anything to the contrary of that idealized image — which, of course, includes dying alone — is considered a “bad death.”
Nonetheless, there is also the far more serious reality that many people do, in fact, die a “lonely death.” In Japan, the specter of this lonely death is referred to as kodokushi. Jason Danely, a senior lecturer in anthropology at Oxford Brookes University, tells me that over the course of his research on caregivers of older family members in Japan, the issue of the lonely death came up often and has emerged as an epidemic of sorts for older generations there. The phenomenon began in 2000, when the corpse of a 69-year-old Japanese man, which had been consumed by maggots and beetles, was discovered three years after his death.
But according to Danely, while this image — that of maggots eating through a years-old corpse — is the sort of visceral image people think about when they contemplate the possibility that they will die alone in their homes, the fact is that most people, especially those who die in hospitals without their family around, aren’t actually alone at all. “Kodokushi isn’t merely about dying in the absence of loved ones, but about being unnoticed or forgotten at the end of life,” he says. “Those dying in the pandemic in hospitals or care homes wouldn’t be considered kodokushi, for example. The fact that there is a clear cause of death, shared by many others, and that the separation from loved ones is a matter of public health emergency measures, helps us to construct a meaningful story to the death that doesn’t carry the same moral ambiguity that kodokushi often have.”
As such, his point is similar to Hughes, which is that dying alone isn’t the same as a “lonely death.” “The hopeful news of recovery, of flattening the curve, of a vaccine in the making, and so on, all point to the promise of a heroic ‘end’ of the story that isn’t present in kodokushi,” says Danely. That said, he doesn’t want to dismiss the crippling sense of helplessness felt by those during the pandemic, who in some cases are unable to even be present to hold the hand of their dying loved ones. But he does suggest that those fears are largely based in the realities of “lonely death,” rather than dying alone.
If there are, in fact, any parallels between kodokushi and the current situation, then they likely exist most potently in the feelings of those left behind. “If no one noticed that an individual had died for weeks or months, that implies that they were also ignored or neglected at the end of their life as well,” says Danely, referring to kodokushi. “If witnessing the lives of others means giving them meaning, then the unwitnessed death means that life becomes un-narratable.”
Deprived of closure, the families forced into these situations as a result of the coronavirus are, according to Danely, likely to experience this haunting sense of guilt and remorse. “Human beings aren’t unique among mammals in their capacity to feel grief, but our grief is usually accompanied by rituals, ceremony, song and other acts that bring the surviving family and friends into stronger relationships.” he says. “Without these, there isn’t only the loss of the loved one, but also a loss of a sense of closure. The death has become disconnected from the social fabric, rather than part of the ebb and flow of the life cycle.”
Danely tells me that this disconnect and the subsequent fears they enliven are especially stark for those of us who think of life as a story with value and meaning. “Most critically, it makes it harder to maintain the view that older people’s lives have value,” he says. “Beyond the shocking accounts, lonely deaths tell us a lot more about the ways ‘home’ and ‘community’ in Japan and elsewhere have become unable to provide older people with the rich human connections that build, maintain and repair life worlds.” The result is that those of us who are left to consider the ramifications of our loved ones dying alone are, in these times, further weighed down with what Danely refers to as “complicated grief” for not having done more for the deceased while they were living.
“It seems to me that the main effect — very much highlighted right now — is for the bereaved people left behind,” says Hughes. “If they felt excluded or denied being present with the dying person at the time of death, it sometimes had a negative effect on their grieving process. Family members talk of guilt and have a tendency to project their own fears of a ‘lone’ death on to the dying person who may often not be conscious.”
In that respect, our fear of dying alone is similar to the way we think about a person’s last words in that, by and large, the living project our own idealized feelings onto how we think the end of a person’s life should go. Hughes tells me it’s those projections that might convince someone to sit beside the bed of a dying person for days without moving. “They might decide to leave the room for a break, or spend a short time at home for some reason, only for the person to die while they were absent,” says Hughes. The last point gets to the real fallacy around our fears of dying alone — that they’re based on an ideal of what constitutes a “good death.” This is the version we most often see depicted on the screen, where the dying person is ready to let go and do so in the arms of their loved ones.
If my grandfather’s “good death” has taught me anything, though, it’s that dying is never that tidy — even in the best circumstances, saying goodbye to a loved one is hard.
But then, isn’t that the point? Isn’t our fear of dying alone, or not being there for a loved one when they’re dying, based purely on the fact that we loved and were loved? If the hallmark of a truly lonely death is that one goes unnoticed, then the current outpouring of grief for those we are unable to comfort in their final moments shows without question that, although they are isolated, those dying as a result of this pandemic are anything but alone.
Andrew Fiouzi
Andrew Fiouzi is a staff writer at MEL.
