Americans tend to avoid opportunities to engage with their own mortality
By Vittoria Elliott and Kevin McDonald
Halloween in America is awfully cute these days — both in the sense that children’s costumes have reached unimaginable heights of adorability and that the holiday has lost its darkness — and that’s rather awful.
Sexy avocado costumes obscure the holiday’s historical roots and the role it once played in allowing people to engage with mortality. What was once a spiritual practice, like so much else, has become largely commercial. While there is nothing better than a baby dressed as a Gryffindor, Halloween is supposed to be about death, a subject Americans aren’t particularly good at addressing. And nowhere is that more evident than in the way we celebrate (or don’t celebrate) Halloween.
Halloween has its origins in the first millennium A.D. in the Celtic Irish holiday Samhain. According to Lisa Morton, author of “Trick or Treat: A History of Halloween,” Samhain was a New Year’s celebration held in the fall, a sort of seasonal acknowledgment of the annual change from a season of life to one of death. The Celts used Samhain celebrations to settle debts, thin their herds of livestock and appease the spirits: the kinds of preparations one might make if they are genuinely unsure whether they will survive the winter.
But in America today, that kind of acknowledgment of imminent mortality rarely occurs, according to Anita Hannig, an anthropologist and professor at Brandeis University. “When we recognize our mortality, we make preparations for it,” she says, mentioning a Romanian acquaintance who had bought their grandmother a coffin for her birthday. “But in the U.S., that kind of engagement is seen as almost frivolous.”
But what could be less frivolous than talking about a wholly universal experience?
“Every other culture has a time set aside during the year where the dead visit,” said Sarah Chavez, executive director of the Order of the Good Death, a group of funeral industry professionals, academics and artists devoted to preparing a “death phobic culture for their inevitable mortality.” Part of the power of these rituals is to make death into a known quantity, something to be accepted, even embraced, rather than feared.
When Roman Christian missionaries began to convert the Celtic peoples, local holidays were not banished, but rather co-opted. All Saints’ Day, formerly celebrated in mid-May, was moved to Nov. 1 as a way to tame the wild Celtic tradition of Samhain. All Saints’ Day is a celebration of all the dead who have attained heaven in the Catholic tradition, a death-centric celebration if there ever was one.
But the rowdiness of Samhain proved difficult to dislodge, according to Morton, so the Catholic Church tacked on All Souls’ day on Nov. 2, to offer prayers for those who were stuck in purgatory. This three-day celebration began on the evening of Oct. 31, eventually becoming All Hallows’ Evening in reference to the holy days to follow.
When the Spanish colonized what is now Mexico, they used the same strategy, taking indigenous rituals and co-opting them into the church, creating what we know today as Día de los Muertos. In both instances, the holidays retained their focus on the ritualistic recognition of mortality and honoring the dead, with the church as arbiter of the afterlife.
Halloween arrived in the United States in the 1840s, brought by Irish and Scottish immigrants fleeing famine. Popular activities included fortunetelling, speaking with the dead and other forms of divination. (To get a sense of how uncomfortable many Americans are with the dead, try this at your next Halloween party and see what kinds of looks you get.)
Catholic-infused Halloween and Samhain shared several similarities with Día de los Muertos. They were both feast days, filled with candles and a reverence for the dead. The traditional sugar skulls, or calaveras, are similar to Halloween’s “soul cakes,” sweet treats people would offer in exchange for prayers for dead relatives languishing in purgatory.
The calavera tradition remains in the modern form of Día de los Muertos, but in the United States, soul cakes have all but vanished. We now have trick-or-treating, a tradition borne purely out of concerns for the living. In the early part of the 20th century, destructive young pranksters would take full advantage of Halloween, vandalizing and destroying property.
“It was costing cities a lot of money,” says Morton. Instead of banning the holiday altogether, neighborhoods banded together to host parties and give out snacks. “Trick-or-treating was a way of buying kids off.”
Similar to how Halloween has drifted from death ritual to doorbell ringing, modern American engagements with death have changed from up close to a culture of avoidance.
In a lot of ways, Halloween in the United States “mirrors our experience with death directly,” says Chavez.
“We used to take care of our dead in our homes — people used to die at home. We took care of our loved ones, dug their graves. We were there through the entire process. We have no idea what death looks like anymore,” she says. And that ignorance breeds fear, uncertainty and avoidance.
Today, about 80 percent of people die in a hospital or a nursing home. Hannig calls these “institutional deaths,” and they’re just one part of how modern death has been sanitized and sequestered away from the world of the living.
“The responsibilities of death have been outsourced,” she says, adding that hospitals and the mortuary industry allow ordinary people to avoid engagement with the messiness and gruesomeness of death.
“When someone dies in a hospital, oftentimes the body will be whisked away almost immediately and family and friends won’t see it again until after it’s been embalmed.”
And it’s not just dying that modern America is losing touch with; it’s death rituals as well. As the United States becomes increasingly secular, religion’s role in making meaning out of death has shrunk. According to Hannig’s research, memorial services are becoming less and less common, and a collective honoring of the dead — something like All Souls’ Day — is practically nonexistent.
Hannig pointed out that in many other cultures, death is a community affair and something people prepare for together. In certain Buddhist communities in Nepal, for instance, when someone dies they will be surrounded by their loved ones and valued possessions to make sure they don’t have any longed-for attachment tying them to life. It’s a way for both parties — the dying and the living — to accept and let go.
Instead, modern Halloween focuses on the creepy and the capitalistic. “We consume death in a commercialized, entertainment way,” says Chavez. By making death fantastical, we make it feel almost impossible, and therefore less threatening. “We know that a zombie movie isn’t realistic. It’s all a way that we can reassure ourselves that we are safe and it won’t happen to us.”
But haunted attractions, horror films and safety from zombies haven’t made us less afraid of death. If anything, by continuing to keep death at a distance, we transform it into an unknown: possibly the scariest thing of all.
More than 500 years ago, when the Spanish Conquistadors landed in what is now Mexico, they encountered natives practicing a ritual that seemed to mock death.
It was a ritual the indigenous people had been practicing at least 3,000 years. A ritual the Spaniards would try unsuccessfully to eradicate.
A ritual known today as Dia de los Muertos, or Day of the Dead.
The ritual is celebrated in Mexico and certain parts of the United States. Although the ritual has since been merged with Catholic theology, it still maintains the basic principles of the Aztec ritual, such as the use of skulls.
Today, people don wooden skull masks called calacas and dance in honor of their deceased relatives. The wooden skulls are also placed on altars that are dedicated to the dead. Sugar skulls, made with the names of the dead person on the forehead, are eaten by a relative or friend, according to Mary J. Adrade, who has written three books on the ritual.
The Aztecs and other Meso-American civilizations kept skulls as trophies and displayed them during the ritual. The skulls were used to symbolize death and rebirth.
The skulls were used to honor the dead, whom the Aztecs and other Meso-American civilizations believed came back to visit during the monthlong ritual.
Unlike the Spaniards, who viewed death as the end of life, the natives viewed it as the continuation of life. Instead of fearing death, they embraced it. To them, life was a dream and only in death did they become truly awake.
“The pre-Hispanic people honored duality as being dynamic,” said Christina Gonzalez, senior lecturer on Hispanic issues at Arizona State University. “They didn’t separate death from pain, wealth from poverty like they did in Western cultures.”
However, the Spaniards considered the ritual to be sacrilegious. They perceived the indigenous people to be barbaric and pagan.
In their attempts to convert them to Catholicism, the Spaniards tried to kill the ritual.
But like the old Aztec spirits, the ritual refused to die.
To make the ritual more Christian, the Spaniards moved it so it coincided with All Saints’ Day and All Souls’ Day (Nov. 1 and 2), which is when it is celebrated today.
Previously it fell on the ninth month of the Aztec Solar Calendar, approximately the beginning of August, and was celebrated for the entire month. Festivities were presided over by the goddess Mictecacihuatl. The goddess, known as “Lady of the Dead,” was believed to have died at birth, Andrade said.
Today, Day of the Dead is celebrated in Mexico and in certain parts of the United States and Central America.
“It’s celebrated different depending on where you go,” Gonzalez said.
In rural Mexico, people visit the cemetery where their loved ones are buried. They decorate gravesites with marigold flowers and candles. They bring toys for dead children and bottles of tequila to adults. They sit on picnic blankets next to gravesites and eat the favorite food of their loved ones.
In Guadalupe, the ritual is celebrated much like it is in rural Mexico.
“Here the people spend the day in the cemetery,” said Esther Cota, the parish secretary at the Our Lady of Guadalupe Church. “The graves are decorated real pretty by the people.”
Your dad is dying. You’ve known it for months but the nurse is serious tonight when she calls and asks you to come sit with him in his narrow room at the veterans’ home. He’s in the later stages of congestive heart failure, complicated by diabetes, obesity, gout, prostate problems, and whatever other trouble years of poor diet, little exercise, long work hours, and minimal health care will get you. That he held out until age seventy is a little medical miracle and not much credit to the VA, which can’t keep track of his records.
You keep track of his records.
He’s propped up in pajamas on rough white sheets, working for each breath. You swab his mouth as it hangs open, showing discolored and misplaced teeth he never could afford to fix. His skin is mottled both from age and the cystic acne that’s plagued him all his life. An oxygen tube would help but he’s asked for no interventions, no heroics. That’s the Dad you remember, the long-suffering Marine who was proud to serve when his number came up. He finished basic at the head of his platoon. Now he takes chronic pain as another heavy pack to carry, mile after mile.
Your brother would like to be here but he’s at work on the West Coast and can’t afford time off. It’s a theme in your family, not having money for things that are important. Your parents divorced fifteen years ago when Dad lost his job as a grocery buyer and took one in another state with worse hours, conditions, and pay—managing a convenience store, a humiliation he carried in his posture, soldier straight until then. Enough, your mother said. She’d followed him on a trail of nowhere cities and inadequate employment that would end with her solitary stand in a cold, dusty Northern Plains town you couldn’t get out of fast enough.
Your dad barely opens his eyes but reaches to grasp your hand. Although you’re a grown woman and a lawyer with an urgent case file to read at midnight by his bedside, you’re still his little girl, the proof that he did something right. He didn’t drink like his dad. He didn’t hit you more than the occasional spanking. He didn’t leave. His greatest parenting accomplishments are acts of omission, but there are also affirmative acts of love. He stopped smoking when you were born. He taught you to ride your bike, drive, fish, salute, hit hard from an unexpected angle, and fight back against anyone who looked down on you.
He taught you that people will look down on you, but he didn’t mean to. He knows no other way to see the world. You’re ashamed to remember the times you’ve been ashamed of him—for his thin short sleeve dress shirts, his fast food gut, the way he picks his teeth with his pocket knife and quotes country music lyrics—because he’s always been so proud of you. He achieved what no one in his family ever had: he got a college degree. Sure, he almost flunked out, pool sharking to make ends meet where the GI Bill didn’t quite cover the needs of a family, but he graduated when neither of his parents finished eighth grade. You suspect that you have no idea how hard that really was.
“How’d you get a woman like her to marry someone like you?” a colleague asked him at a work dinner once when your mom wore her one string of fake pearls and a little black dress that made her look like Jackie O. The story hung on in the family for years, a pretty compliment to her, embedded with the kind of put-down he absorbed all his life. With his bottle-bottom glasses, bad skin, bad teeth, cheap suit, and shaggy haircut, he makes a terrible first impression, a walking sitcom punch line, and he knows it. He’s also funny and a good singer and can be kind if he isn’t provoked, but most people wouldn’t take the time to know him that well.
It took adulthood to make you wonder how he stumbled so badly when it came to solidifying his place in the middle class. For a while you thought it was his unique failings, an inability to assimilate, and surely appearance and social skills are part of the story. Then you began to look around you in towns like those you grew up in and saw that his appearance was nothing unusual. It’s the look of people who have zero disposable income to spend on themselves, especially the men, who wash their hair with a bar of soap, brush their teeth, and rush to work in whatever’s clean. It’s the outward appearance of poverty.
You know the careful visual distinctions we make in this country. “Dress like the job you want” also means “if you can’t dress and groom that way, good luck getting that job.” You’re your father’s daughter, so you grok the penalty of dressing the wrong way, but you’re also uneasy with passing as upper class no matter what your education and salary. The working class made you and at some fundamental level you’re loyal to it. The reflexive mockery of the people you come from by the people around you bites every time. And when Hannibal Lecter says to Clarice Starling, “You’re just one generation removed from poor white trash”—oh, you feel that. You know the gaze the monster turns on her. You’ve spent years avoiding it.
But in your father’s prime working years, the seventies through the nineties, larger forces were massing against Americans who grew up poor, believing in the bootstrap dream. Wages stagnated then shuffled into a decided downward trend. He got minimal raises and tiny bonuses, never grossing over $30,000 a year. There was no pension. He cashed out his IRA to put a down payment on a house after the divorce. Like tens of millions of Americans, you had no dental coverage growing up and learned to brush and floss compulsively while your dad paid for his root canal out of his own pocket.
You have dental insurance now.
He never did.
In many ways you’re exceptional among not just your family but your generation. You’ve risen above your origins while others, including family members, have fallen back even from their own highest social standing. The single-wide trailer house you moved your dad out of when his health failed was an anchor and an oracle. It said, “Don’t get too high and mighty. You could wind up here too.” Yet even as he experienced the setbacks that have turned many white men bitter and angry—and there was bitterness and anger enough—your dad hasn’t turned against his class. He’s a yellow dog Democrat who’s voted and argued all his life for the honor and rights of the working man, the laborer, the veteran against forces that would crush them.
And now he’s dying. You should have done better for him, found other doctors, spent more time, but you were working long hours at the firm. You have a child of your own. You had so little to give after all he gave you, and that’s the way of your family, too—never enough to go around. Never enough self-esteem or social capital, never enough sanity or sobriety, never enough love, because even though you were loved, the greeting card trope is true: to love someone else, you have to love yourself first. Your dad loved you as best he could, but his real gift was the sense of inadequacy that drives you.
He won’t let go of your hand. He’s waited for this night, you realize, when you’d be here and he could die holding his little girl’s hand, accompanied into the unknown. He doesn’t want to die alone, so you stay as hours pass, testimony blurs before your eyes, and the hard chair hurts your back and legs. His breaths rasp. If you look up you can follow each one, the inflation of blue-veined, hollowed cheeks, the rise of gown and blanket, parched lips you moisten with a sponge on a lollipop stick.
There’s a little gasp, and then silence. He’s not hooked up to machines so you have to stand over him to be sure that no breath or heartbeat stirs him. His eyes opened at the end, facing death with a brave heart, you imagine. You put your hand on his eyelids like they do in police dramas and shut them. You kiss his cheek and say, “Goodbye, Daddy.”
Mexico isn’t the only country which sets a date with the dead.
Around the world, different countries, cultures, and religions have unique relationships with their dead. And yet, there are plenty of festivals of the dead—which take place over the course of days, or even months—that share spookily similar rituals. Think: offering food, cleaning tombstones, and thanking deceased loved ones for their care and guidance. Don’t let shared origin stories diminish the importance and significance of each one though—they’re all as fascinating as the last.
Hungry Ghost Festival
China’s Hungry Ghost Festival—which has the best name I think I’ve ever heard—is actually a Hungry Ghost Month. In fact, only the final day of the month, when the boundary between life and death is most blurred, is known as the Hungry Ghost Festival, and Chinese Taoists and Buddhists mark the solemn occasion by burning a lot of paper. Not only do they burn paper offerings—which signify the things living relatives wish to send to their deceased loved ones in the afterlife—they also release paper lanterns to help guide the spirits home.
The Obon (or just Bon) Festival is another Buddhist affair, and the Japanese equivalent of China’s Hungry Ghost celebrations (both take place on the fifteenth day of the seventh lunar month). However, the Japanese version is now usually celebrated on a fixed rather than fluctuating date, around mid-August. Depending where you are in Japan, you might see dances (like the Bon Odori), the release of floating lanterns, or bonfires marking the occasion, although visiting graveyards is a common countrywide ritual.
WHERE: North and South Korea
Unlike China and Japan, the Koreas honor their ancestors in the eighth lunar calendar month (roughly September/ October), in a celebration which also combines dance, food and general revelry over three days. The food, especially rice cakes called songpyeon, plays an important role, principally because thanks are also given to the deceased for their role in providing a good harvest. However, like other days of the dead around the world, graves are also cleaned and dances are also danced.
WHERE: Celtic Peoples
Before Halloween (or All Hallows Eve) there was Samhain (or All Hallows), a Celtic tradition that admittedly has much in common with our present-day October 31 rituals. Take our fancy dress tendencies and giving of sweets for example. The day before Samhain, people thought that their ancestors returned from the afterlife to essentially press a giant reset button on the land and leave it empty just in time for winter. As a result, the night before (a.k.a. Halloween), they’d wear masks to blend in and leave food out for the returning souls. Sounds familiar, right?
Fiesta de las Ñatitas
La Paz, Bolivia welcomes an unusual day of the dead ritual each November, as the Aymara people head to the central cemetery with their deceased loved ones’ skulls in tow. Displayed in boxes, and often adorned with flowers, the skulls are also given offerings (think: food and drink) in thanks for having watched out for their relatives from the realm of the dead over the course of the past year.
To catch a glimpse of the Nepalese Festival of the Cows (otherwise known as Gai Jatra), head to Kathmandu in August or September, where the eight-day affair is principally celebrated. Confused as to what a Festival of the Cows has to do with celebrating the dead? Cows are thought to help guide the deceased into the afterlife, so families with a recently departed loved one will guide a cow (or a boy dressed as a cow) through the streets to both honor and aid their deceased.
Qingming (a.k.a. Ancestors’ Day)
Cleaning the tombs of the deceased forms a large part of China’s Ancestors’ or Tomb Sweeping Day, although consuming dumplings and flying kites are also important. Similarly, offering goods of value in the afterlife—such as tea and joss sticks—is also practiced on Qingming. It’s said that this memorial to the dead, which takes place in roughly mid-April, was established as a way to limit the previously overly-extravagant and all-too-regular ceremonies held in memory of the deceased.
Pchum Ben, a 15-day-long ritual when the veil between living and dead realms is considered to be at its flimsiest, is celebrated countrywide in Cambodia. While the first 14 days, known as Kan Ben, are about remembrance, the fifteenth day—or, Pchum Ben Day—is when Cambodians gather en masse to celebrate. And, as with other festivals of the dead, food is offered to the souls of the departed, who it’s thought return to earth to both connect with their loved ones and atone for past sins.
WHERE: Hindus around the world
Undefined by geographical bounds, Pitru Paksha is a Hindu festival which, like that of the Cambodian Pchum Ben, centers on praying and providing food for the deceased. However, Pitru Paksha lasts for 16, rather than 15 days, and those who take part apparently shouldn’t undertake new projects, remove hair, or eat garlic for the duration.
WHERE: Russia, Belarus, and Ukraine
Radonitsa, the Russian Orthodox Church’s second-Tuesday-of-Easter memorial for the departed, stemmed out of a Slavic tradition which involved visiting graveyards and feasting with the dead. Nowadays, the rituals remain remarkably intact, as this joyful remembrance involves leaving Easter eggs on the tombstones of the deceased before dining beside them, as well as sometimes gifting presents to your in-laws.
For German Protestants, Totensonntag (a.k.a. Sunday of the Dead) is considered a day of remembrance, on which those who honor the occasion will typically pay a visit to the graves of their deceased loved ones. However, unlike some of the festivals of the dead mentioned so far, Totensonntag is a far more somber affair. In fact, it’s sometimes known as “Silent Day” and it’s actually forbidden to dance and play music in public in some parts.
The beliefs of the Dayak Ngaju people of Central Kalimantan, Indonesia state that after death and the departure of a person’s soul, their body’s spirit remains on earth. In order to liberate that spirit and ensure they ascend to the highest level of heaven, it’s necessary to conduct a tiwah. Held anywhere from some months to years after a loved one is buried, the tiwah involves the exhumation and purification of bones and can be a prolonged event in which multiple families participate.
Thursday of the Dead
WHERE: The Levant
In the Levant—a historical geographic region which includes many modern day, Eastern Mediterranean countries—Thursday of the Dead (sometimes known as Thursday of Secrets, Eggs or Sweetness) brings together Christian and Muslim traditions to honor the souls of the deceased around the Easter period. Typically celebrated in the morning, sweets and breads are traditionally doled out to children and those in need.
Día de Muertos
WHERE: Mexico and wider Latin America
You can’t talk about global festivals of the dead without throwing in at least a few references to Mexico and wider Latin America’s Día de Muertos festivities. On November 1 (Día de los Angelitos) and 2 (Día de Muertos), people from across Mexico pay homage to and celebrate the lives of their deceased loved ones by building altars and displaying sugar skulls, amongst other things. In Guatemala, giant kites are flown, while in Ecuador, the Kichwa people memorialize their deceased loved ones by visiting, cleaning, and eating at their gravesides.
FRONTLINE follows renowned New Yorker writer and Boston surgeon Atul Gawande as he explores the relationships doctors have with patients who are nearing the end of life. The film investigates the practice of caring for the dying, and shows how doctors are often remarkably untrained, ill-suited and uncomfortable talking about chronic illness and death with their patients.
Talking about death is hard. And usually it’s really, really hard. Maybe it’s because—much like the process of dying itself—it requires us to be vulnerable, to be honest, to come to terms with a denial we engage with, to varying degrees, our whole lives.
“Death happens to everybody, yet somehow we’re surprised by it,” says hospice and palliative care specialist BJ Miller, MD. “I’m shocked at how many patients and family members have not only had to deal with the pain of sickness and loss, but on top of that they feel bad for feeling bad. They’re ashamed to be dying, ashamed to be sick. There’s a horrible unnecessary suffering that we heap on ourselves and each other for nothing.”
The more intimate we get with the idea of dying, the closer we come to folding it into the fabric of our daily lives, the better off we’ll all be, Miller says. Advice on how to die well is really no more than advice on how to live well, with that unavoidable reality in mind.
A Q&A with Dr. BJ Miller, MD
Q What is a good death?
It’s a deeply subjective question, and the best way I can answer objectively it is to say a good death is one that’s in keeping with who you are as a person; a good death is consonant with your life and your personality.
For example, most people say they want to die at home, that they want to be free from pain. That usually means not having a bunch of medical interventions happening at the end. Effort is put toward comfort instead. But I also know plenty of people who say, “No, no, no. I’m the kind of guy who wants to go down swinging,” or “I’m looking for a miracle,” or whatever it is. And for them, a good death may very well be in the ICU with all sorts of interventions happening, anything that’s going to give them a chance, because they see themselves as fighters and they want to go out fighting.
Q What’s the role of hope in dying?
Hope is a beautiful, powerful, and very useful force. It’s what gets most of us out of the bed in the morning. It’s not a question of whether or not you have hope; the question’s more: What do you hope for? The work is harnessing your hope for something that’s attainable or for something that serves you.
When I’m talking to a patient, and I ask them, “What do you hope for?” If they say, “Well, I hope to live forever,” we can label that a miracle pretty safely. I can say, “I’ll hope for that, too, but if we don’t get that, and if time is shorter than you want, then what do you hope for?” Because hope needs to be qualified. So they’ll say, “Ah, well, if I’m not going to be around much longer, well, then I really hope to make it to my grandson’s graduation in the summer,” or “I really hope to get through the World Series,” or whatever it is.
It’s tempting to say that hope is this thing that you either have or you don’t have. That when you don’t have it, then that’s like giving up or letting go. But it’s not. You can hope and understand you’re dying at the same time. It’s very possible when someone comes to terms with the fact that they’re dying soon, that they hope for a painless death, or they hope to die on a certain day. Those are realistic hopes; it’s a matter of channeling that big force.
Q In what ways is our health care system not equipped to handle dying well?
In the last hundred or so years, what’s become the norm for end-of-life care in the West is a very medicalized death. Hospitals and doctors have become arbiters of death; it used to be a much more mystical thing involving nature and family and culture. But of late, medicine in all of its power has co-opted the subject, and so most people look to their doctors and hospitals as places that forestall death.
We’re spending a lot of time—when it’s precious—in the hospital or at a doctor’s office. You spend a lot of time navigating medications. You’re spending a lot of time hanging on every word the doctor says. That’s a problem in that it’s not really what most of us want. But it goes that way because we’re afraid to confront the truth. We’re afraid to talk about it, so we all end up in a default mode. The default mode is in the hospital with a bunch of tubes and medicines and someone keeping your body alive at any cost. That has become the default death, and that’s not what most people would consider a good death.
Q How do you approach that conversation of getting someone to accept the reality of their sickness and also the uncertainty that might come with it?
It’s really hard, and it’s a really complicated dynamic. Most people don’t want to hear that they’re dying, so they don’t listen to their doctors, and most doctors don’t want to tell people that they’re dying.
Because people aren’t primed to hear it, and doctors aren’t primed to say it, what happens is there’s this little complicit dance between doctors and patients and family members. Everyone just kind of tries to scare one another off, so they don’t mention death and they instead lean on euphemisms. You’d be shocked at how many well-educated, thoughtful people come toward the end of their life and find themselves surprised that they’re dying.
A palliative care doctor starts the conversation by getting a sense of where the patient is. What’s their understanding of their illness? I typically invite a conversation with open-ended questions, like “Well, tell me about what’s important to you. Tell me about what you would let go of to live longer.” I get to know the person. When I feel safe with them and we’re speaking the same language, then I can broach the subject of time, and I can say, “Well, you know, because of X, Y, or Z diagnosis, whatever else it is, at some point this disease is not likely to be curable, and we’re going to have to turn our attention to the fact of death. Let’s prepare for it. Let’s plan for it.”
This is where death and life go together very helpfully: The way to prepare for death is to live the life you want. If you start talking to someone about how they want to die, you usually end up landing on how they want to live until they die. That’s a much less scary conversation. It’s a much more compelling conversation for people, too, and it’s more accurate.
Q What matters to most people at the very end?
There are consistent themes around this, which we know from both data and experience:
Comfort is important. Very few people are interested in suffering. Some people are, but most people want to be free from pain.
Most people want to be surrounded by friends and family. They want to be either at home or at a place they call home, a place of their choosing; some people are in the hospital for months, and that becomes their home. The people around them become their family.
Most people are spiritual and have some relationship to a creator, so most people want to be at peace with their god, to be at peace spiritually.
Most people also want to leave their family with as little burden as possible, so that means financial planning, etc. It’s very important to people that they not be a burden to their family unnecessarily.
Q Why do you think as a culture we find it so challenging to talk about death and dying?
You can kind of tell that America is a young place, in part by the way we handle aging and death. We’re terrified of it. Most cultures have been dealing with this a long, long time and have made peace with death as a part of life. Instead of falling back on institutional cultural ritualized knowledge, we’ve outsourced dying to medicine. We leave one another feeling like we’re incompetent at dying, when in fact, we have it in us. We’re just too far removed from it.
In the last 170 years or so, as a society—especially in the health care industry—we’ve been in a long romance with innovation and technology. We believe if you hang in long enough and you work hard enough, everything is solvable. That we can invent our way through anything. You hear people talk, and you realize somehow they’ve absorbed this idea that death is optional, when in fact, of course, it’s not. I notice in my practice when I’m dealing with someone who lives on a farm, someone who is close to nature and its cycles, that they know that death is a part of life. Inherently. They’re around it all day, every day, whether it’s slaughtering an animal or raking up leaves. They haven’t removed themselves from nature’s cycles, so death makes total sense to them. Those of us who are living more technologically driven lives often lose that intuition, that gut feel, and so nature surprises us. Nature scares us.
Part of the problem, too, is what one of my colleagues calls the “medical-industrial complex”: Health care is an enormous business in this country. As long as we decide to consider health care a business and not a civil right, it’s subject to all the fickleness of capitalism and it requires marketing. When I see hospitals advertised to the public as the place where miracles happen, a place where anything’s possible, you know, that’s an advertisement. That’s marketing. That’s not real. We’re not incentivized to be honest with one another in this way.
Q How can you stay in the world and retain a sense of purpose toward the end of life? How much does that matter?
This question of purpose is related to the question of being a burden, and both come up a lot. First, let’s all get better at being vulnerable because we are vulnerable. If you’re in the course of a normal life, any one of us is going to be a burden to someone sometime. It’s just not possible to only give care and not need to receive it. Getting more savvy with needing one another is one way to turn down the pain.
We can also learn to repurpose ourselves. I meet people often who have had a single kind of career or place within their family their whole lives. They’ve had this monolithic role, and as soon as they can no longer perform that role, they lose their sense of purpose. They have nowhere else to go, they have no other interests, they don’t believe they can repurpose themselves, and they lose touch with reality really quick. This is one of the ways we die before we actually die.
But you can find that purpose again, in a different way. I’m working with a family right now, and the mother, she’s about seventy years old, and she’s been a teacher much of her life. She’s been the one in the family who’s always giving care. Now it’s her turn to receive care, and she’s really struggling, and she’s not good at it. She’s gone seventy years without needing much from others, and it shows. In her mind, she’s lost her role as the caregiver. So what we’ve been doing of late is saying, “How can we repurpose your life as a teacher? What can you teach your grandchildren now?” We’re learning she can teach her grandchildren a lot about death. She can teach her grandchildren a lot about being vulnerable and the courage it takes to be vulnerable. She can teach her kids how to communicate with someone who’s suffering. These are enormous lessons, and all of a sudden, she doesn’t feel like she’s being stripped of everything important to her. She’s seeing that she still has some creative life in her and she can take old skills and reapply them in this new way.
Purpose is a powerful force, but there’s value in life beyond purpose. In America, life is all about productivity. You know you’re relevant in this society as long as you can produce, and as your ability to produce reigns, so does your employment and worth. Aging then becomes this process of getting out of the way, and that’s pretty lame. It’s on all of us to see that there’s something bigger to life than our jobs or our single role or whatever it is—life is much more interesting than that. We are much more interesting than that. Another way to help one another repurpose is to actually let go of the need to be so dang productive. Get in touch with the mystery of life and the power of just being at all. That, I find, is a very, very useful thing for people who feel purpose is slipping through their fingers.
Q What advice do you have for family members or loved ones who are helping with end-of-life care?
There are so many layers to this: There are practical burdens, emotional burdens, financial burdens. All need addressing.
Hospice is an incredible service that can dramatically unburden the family. When your health is failing and you need more help with the activities of daily living, family members can step in to do that, or perhaps it’s time to hire a home health aide. But very often what ends up happening is people wait too long to invite hospice into their homes, because they wait way too long to face this reality, and then it’s too late to do much. So one piece of advice I stress to everyone is to think about home health care and hospice early. Even if you think death is years away but are still dealing with a serious illness, call hospice sooner rather than later. Just request an informational interview. Get a sense of what they can do and broach the subject as part of your planning. You don’t have to sign up anytime soon.
The other big emotional piece is to fold death into our view of reality so that we don’t feel guilty that Mom’s dying. It’s always amazing to me how many creative ways we find to feel horrible. I watch family members blame themselves for the death of a loved one all the time, even though there’s nothing that could be done to forestall it. We view death as a failure, and families end up absorbing that sense of failure. It’s heartbreaking. And if there’s one thing we can’t fail at, it’s death. You are going to die. There is no failing.
We all need to get a lot more savvy with grief. Grief is around us all the time. We’re always losing something. A relationship, hair, body parts. Loss is all over the place, and our American way is to kind of pull yourself up by the bootstraps. There’s something to that, but we’ve got to get better at just letting ourselves feel sad. We have to give one another more space for grieving. Grief is just the other side of the coin of love. If you didn’t love someone, it wouldn’t be so hard to lose them. Acknowledge that. Work with it. Let yourself feel it. That will help everybody involved.
We also need to push our human resources programs to help with caregiver education for family members or generous bereavement time off. That’s a big piece of this puzzle if we as a society are going to die better.
Q You’ve spoken before about your own brush with death and becoming a triple amputee. How does that experience inform your work?
Most of us have a kind of a haphazard view of reality that may not include illness or death. Illness and death can end up feeling like this foreign invader, despite the reality that they’re natural processes. My own trauma and illness gave me a wider view of the world that includes that reality, so that I wasn’t ashamed to be disabled. I was normal to be disabled. It helped me understand I was a human being for whom things go wrong. A human being for whom the body dies. That is the most normal thing in the world.
It helped me see myself in my patients and my patients in me. It’s easier for me to empathize with people who are sick and near the end because I’ve been there myself to some degree. But you don’t need to lose three limbs to relate; suffering and illness and death are hard subjects, but at the most basic level, they unite us. We all have some relationship them, and therefore we all have a lot in common.
I’m also aware that because I’m obviously disabled, I think patients, as a rule, give me some credit. I feel like I have an easier time getting to a trusting place with patients. If you take one look at my body, you know I’ve been in the bed, and I do think that is actually a great advantage for me in the work I do.
Q Have you ever felt as though you’ve failed a patient?
To be clear, most days I spend a fair amount of time talking myself out of hating myself, you know, just like most people. I’m deeply, deeply aware of all the things I can’t do or didn’t do today, or that patient I didn’t call in time before they died, or you name it. There is a long daily list of things I have to spend a moment reconciling. Usually it relates to some form of communication: I didn’t quite find a way to break through; I didn’t quite find a way to help them feel safe; I didn’t quite find a way for them to feel seen or understood my me.
Q How can spirituality help someone come to terms with death?
It depends how you define spirituality, but I might define it as a connecting force that we cannot see but have faith is there. That somehow, we’re tied into some creative force that is much larger than ourselves and that is all-encompassing and all-inclusive. If you have a spiritual framework, it’s easier for you to yield to death because you know even in your death you’re still part of something beautiful or enormous. That sense of belonging can do so much for us.
When I found myself near death, and thinking about these things and revisiting my spirituality, it became clear to me that I would be very sad to die. I don’t want to die yet. But what matters even more to me than my life or death is the fact that I exist at all, that life exists at all, and I get to feel part of that, and my death is part of that.
Q Can art play a role as well?
So much of life and death is so powerful and so huge. There’s just so much more to the world and life than what we can find in a word, so the arts can help us kind of get in touch with these larger threads, these larger forces, these things we can’t quite see or feel, a little bit like spirituality.
Expressing yourself artistically can be therapeutic, too. For people going through illness or the dying process, if they’re able to get in touch with their creative impulse and make something from their experiences, that’s an amazing way for them to participate in their life and in their illness. To turn their suffering into grist…something to paint with, essentially. It’s just very rich and fertile ground.
With architecture and design, the way we cultivate our built environment has such power in terms of how we experience life. Standing in a beautiful museum can make you feel things you wouldn’t otherwise and can help you pay attention to things that are really difficult. I would love to see the arts get more involved with the heath care infrastructure so that hospitals and nursing homes are places where you’d actually want to be, places that are beautiful or stimulating. The arts provoke the life in you, and that’s very powerful when the goal is to really live until you die.
Q How do you recommend preparing for death?
Explore a hospice and palliative care program as early as possible. Ask your doctor about it. Research local hospice agencies. There’s a website called getpalliativecare.org, where you enter your zip code and it’ll show you your options. Of course, some programs are better than others, but as a rule, these services are designed to help you suffer less, help you find meaning in your life, and help you live a full life.
Even when you’re feeling exhausted and you just want to hand yourself over to a doctor, you need to find a way to advocate for yourself. Otherwise you’re going to end up in the default mode in the health care system, and that’s going to mean ICU and machines and all sorts of things that you may not want. Your doctor is there to help you, and you need to work with them. But push your doctor: Ask them about palliative care, and if they say, “Oh, you don’t need palliative care,” ask why not. Or if you think you want to prepare with hospice, ask your doctor about hospice. What do they think about hospice? Is now a good time to start it? If they say you don’t need hospice, ask, “Why not? When would I?” Between the medical system and the training that goes into it, understand you need to advocate upstream. You’re pushing a rock up the hill.
Anywhere along the way, start saving money, period. The number one cause of personal bankruptcy in this country is health care costs, and the bulk of those people who go bankrupt because of heath care costs had health insurance. I don’t think people realize even if you have insurance, there are costs that are going to come up that you would never imagine, so if you have any capacity, just start saving. You’re going to need money toward the end of life. You’re going to need money to navigate illness.
Whether it’s in yourself or with someone you care about, reward vulnerability. Be vulnerable. Go toward it. Be with people and yourself when you’re suffering. It takes courage to be vulnerable, to get help and to give help. When it comes to your time, it’s important that you’ve learned how to receive care.
Then there’s the biggest one: Dying ain’t easy, but it’s going to happen, and there’s a lot of beauty in it. The fact that we die is exactly what makes life precious in the first place. You don’t have to love death, but try to have some relationship with it. Think about it. Contemplate it. As soon as you start doing that, the sooner you start making decisions you can live with, and you’ll avoid stockpiling a bunch of regrets. People who don’t think about death just end up assuming they’re going to live forever, until it’s too late to live that life they wanted to lead.
BJ Miller, MD is a hospice and palliative care specialist who sees patients in the Cancer Symptom Management Service of the UCSF Helen Diller Family Comprehensive Cancer Center. After studying art history as an undergraduate at Princeton University, he worked for several years for art and disability-rights nonprofit organizations before earning a medical degree at UCSF. He completed an internal medicine residency at Cottage Hospital in Santa Barbara, where he was chief resident, and a fellowship in hospice and palliative medicine at Harvard Medical School, working at the Massachusetts General Hospital and Dana-Farber Cancer Institute. His forthcoming book with coauthor Shoshana Berger, a practical and emotional guide to dying called The Beginner’s Guide to the End, is due out from Simon & Schuster in 2019.
In this Oscar-nominated animated short, a young woman receives a mysterious package that contains a vinyl record. She soon realizes that she can go forward or backward in time by simply adjusting the position of the needle as the record plays on her stereo.