When Alana Romero was a child, they’d leave their bed in the middle of the night, sneak through her family’s darkened home in South Florida, and slip into her sisters’ bedrooms. But they didn’t want to play, gossip, or otherwise annoy her siblings — she wanted to make sure they hadn’t died in their sleep. 

“I would wake up, crawl to my sister’s room, just put my hand under her nose and make sure she was still breathing,” Romero, now 26, recalls. “If she was snoring, that was a good sign.” Romero would then check on her little sister one room over. Is she breathing? Yes. Reassured for the moment, Romero would return to their own bed.

Romero didn’t know exactly why she was making these anxious nighttime visits at the time — she kept them to herself.  What they did know was that in their Catholic, Latino family, death wasn’t something that was acknowledged, much less discussed. “It’s like, don’t talk about death, don’t do the taboo things, maybe don’t even prepare for [death] because if you just don’t talk about it, don’t prepare for it, maybe it won’t happen,” Romero says. 

When a loved one did pass, the circumstances of their death, and the events of their lives, weren’t brought up again, at least not with Romero. It felt like once a family member was gone, they were gone for good. So, like many other children with questions but no answers, Romero carried on as best as they could. She worried, she wondered, she woke up in the middle of the night.

In the US, we’ve long approached death with secrecy and silence. Despite the fact that, according to one survey, nearly half of Americans think about death at least once a month — and a quarter of them think about it every day — many keep these thoughts to themselves. When asked to rank their willingness to talk about various taboos, from money to sex to religion, respondents ranked death dead last, at 32 percent. 

Furthermore, a 2018 survey conducted by the Institute for Healthcare Improvement found that while 92 percent of Americans agreed that discussing their end-of-life preferences was important, only 32 percent actually followed through. In other words, people struggle to bridge the gap between an internal awareness of death, and the actual external preparation for it. 

There are any number of reasons why people avoid these conversations. You may not know where to begin. You may not want to upset others. You may not know how to answer your child’s questions. You may be afraid of aging, illness, the callous indifference of insurance companies, and the creeping of medical debt. You may be superstitious. You may feel too young or too old to worry about it. Or you may hate to confront, once and for all, that you are afraid of what you can’t prevent, contain, or wish away.

 “Death is the ultimate loss of control. It’s the ultimate uncertainty,” says Claire Bidwell Smith, therapist, grief counselor and author of Conscious Grieving: A Transformative Approach to Healing From Loss. “We can really get very clear and focused and organized about so many aspects of our lives, yet death is the one that we cannot. We can’t predict it, we can’t control it.”

This studious avoidance of death has real consequences: Less than half of US adults have a will, which dictates financial and estate preferences after death. Likewise, only about 45 percent of adults have a living will, which dictates wishes around medical care. These numbers may be surprising given the Covid-19 pandemic, which exposed a generation of Americans to the existential dread, systemic failures, and grief of a global death event. But after a brief uptick in estate planning during the pandemic, interest waned. 

There are, nevertheless, glimmers of change. For example, the resurgent interest in death doulas — people who provide education and holistic, non-medical support to the dying and their communities — signals a desire for more guidance and transparency around death. So does the wave of books, TV shows and media that reckon not only with dying, but also with its inequities. 

These cultural seeds have long been sown by organizers, spiritual leaders, academics, medical and funeral professionals — and much of this work pre-dates the pandemic. The contemporary death positive movement, which advocates for a transparent, unabashed approach to death and death care, began in earnest in the early 2010s when author and mortician Caitlin Doughty founded the advocacy group The Order of the Good Death. This  movement has deep roots in the hospice care, green burial, and home funeral movements. 

Still, despite the pandemic’s fresh lessons — and the ancient knowledge that death comes for us all — many of us still cannot bear to talk about death. Even when we know it’s important. Even though we may want to. So why not? And what would we stand to gain if, instead, we learned to speak about dying more openly?

How death became laden down with euphemism

American attitudes around death and dying are fairly modern creations, taking root in the 19th century. Until then, most people died at home. Rites were carried out by community members, bodies were washed and displayed in the home for mourners, and funerals were cheap, intimate and hands-on affairs. That is, until the Civil War. 

In the early 1860s, people were, for the first time, dying away from their homes en masse. To address this, embalming — the process of slowing down decomposition by replacing the body’s blood with chemicals — was used to preserve bodies long enough to transport them back to those families who could afford it. 

Sarah Chavez, a writer, historian, and activist who is the executive director of Order of the Good Death and founding member of the death scholarship organization The Collective for Radical Death Studies, says embalming didn’t truly captivate the American imagination until the death of President Abraham Lincoln in 1865. “When [Lincoln] died, he was embalmed and went on a multicity tour, like he was a music artist,” Chavez says. “People came out in droves to see the funeral train and his body. That really kind of cemented embalming as this new, American thing.”

Embalming became more widely popular and laid the foundations for a new paradigm: dead bodies cared for outside the home by a buttoned-up, for-profit class of embalmers.

Over the next few decades, embalmers and funeral workers, who Chavez says signaled wealth and elegance by setting up shop in Victorian-style homes, slowly gained a foothold in the United States. At the same time, during the turn of the 20th century, medical care was also leaving the home and entering more firmly into the purview of trained doctors, nurses, and hospital systems. “The funeral industry and the medical industry rose up together and kind of partnered to position themselves as these guardians of health and safety,” Chavez says. (Seeking trained medical professionals has obvious benefits for the living, but keep in mind that dead bodies aren’t dangerous, and embalming services aren’t necessary for health or safety.) 

By the 1930s, the modern funeral industry had taken off and sold a new, “dignified” version of death — one that rapidly isolated the living from their own dead. “Their definition of what a [dignified death] was, is expensive, away from the home amongst professionals, devoid of signs of death through embalming,” Chavez says. “They come in and they whisk away your person and they return them to you as if they look alive, as if they’re sleeping.”

There are, of course, vibrant counterexamples of this attitude across American culture. For marginalized communities in particular, elaborate, public displays of death and grieving offer the dead a dignity and power society never offered them in life. Homegoing rituals in Black communities, which often blend African and Christian practices, and political funerals and “ash actions” during the AIDS crisis both come to mind.

Still, throughout the 19th and 20th centuries, death became laden down with euphemism for large swaths of society. This was often encouraged by the funerary industry, whose professionals developed language to avoid talking about death while, paradoxically, talking about death. If you’ve ever said “passed away” instead of died, “loved one” rather than dead body, or “memorial park” rather than cemetery, you’ll begin to see how thoroughly death has been obscured from the common lexicon. This language, or lack thereof, can make every aspect of death more secretive and more confusing, from the actual physiological process of dying itself all the way down to funeral prices.

These factors — embalming practices, the expansion of a for-profit funeral industry, and a developing taste for euphemism — gave birth to the modern American death taboo. 

The cost of silence

When we avoid talking about death, we risk living and dying in ways that don’t align with our values and needs. If you don’t discuss end-of-life medical treatment, for example, you may receive invasive and expensive care you never wanted. Or as a caregiver, you may be forced to make quality of life, death care, and estate-related decisions based on your best guess rather than falling back on the information and documentation needed to confidently honor someone else’s wishes. 

“ Many of us know so many people who’ve died and didn’t have a plan,” says Darnell Lamont Walker, death doula and author of the Notes From a Death Doula Substack. “And so when they die, the family is falling apart and everyone is thinking, Oh well this is what I think they would have wanted.” In that situation, it’s easy for conflict to break out among even the most well-meaning family members. Talking about the logistic aspects of death ahead of time — including your legal and medical rights during and after dying —  can help you, your loved ones, and your community act with clarity and conviction. 

However, paperwork and conversations don’t always guarantee your wishes will be honored. A 2021 study, for example, looked at do not resuscitate orders among cardiac arrest patients and found that, out of 65 patients who were designated DNR, 38 received CPR against their wishes. In addition, a Georgia abortion ban recently kept a 30-year-old pregnant woman, Adriana Smith, on life support against the wishes of her family. According to HuffPost, nine states will automatically ignore an advance directive in the event of a pregnancy. This distinction between choosing silence and being silenced, regardless of intention, is an important one with no easy answers.

But for some, talking about the logistics of death is the easier part — there are steps to follow, forms to fill out, bills to pay. Instead, it’s the emotional consequences that are far more difficult to grapple with.

This was the case for Kayla Evans, whose dad died in 2013. Growing up, her family didn’t talk about death unless it was about practical matters. “There was a very utilitarian response,” Evans recalls. “Like, it’s sad, but we have to move on.” From her mother, there was an unspoken message that “people who were very sentimental about death were silly.” 

Then, when she was 18, during her second week as a college freshman, Evan’s father died unexpectedly. “Nobody saw it coming,” Evans, now 30, says. “As he was dying, my mom was like, We need to transfer your name over to these financial documents … the administrative tasks that follow death, things like that, were very well taken care of. I don’t think any of us together processed the emotional side of it. That was something I had to do on my own.” 

Without anyone to talk to, Evans turned to “extreme productivity” as a coping mechanism in the months after, piling on projects and jobs and schoolwork — a strategy that came at the expense of her relationships and emotional wellbeing.

“ I would like to say I grew from [my father’s death] or something, but honestly it was just really fucking hard,” Evans says. “Nobody taught me how to deal with grief and nobody taught me how to deal with death.” 

Twelve years later, “I feel it still trails [my mother] especially, and it trails me, too,” Evans says.

Talk about death is, weirdly, life-affirming

It’s not always easy to have conversations about death. But, clearly, it’s not easy to avoid them, either. If you want to start grappling with the reality of death, the first step is to ask yourself questions about the end of your own life, though it can feel scary. What does a life well-lived look like for you? How do you want to die? How do you want to be remembered? Taking the time to reflect on your own can help you clarify what you want and better prepare you to tell others what you need. 

When approaching loved ones about end of life wishes — either your own or theirs — Kathryn Mannix, physician, palliative care specialist, and author of With the End in Mind recommends breaking down the conversation into two parts: the invitation to talk and the conversation itself. For example, you may say something like, Dad, I want to be able to step up and care for you when the time comes. Do you think we could talk about the care you do and do not want towards the end of your life? Could we talk sometime over the next few weeks? 

Alternatively, if you’d like to start the conversation about your own wishes, Mannix suggests something like: Kids, I’m not getting any younger and there are things I’d like to talk about to put my mind at ease. When can we talk? This approach matters because it allows the conversation to happen when all parties have had time to think and prepare. 

“Talking about our wishes at the end of life is a gift to our future self and to the people who love us,” Mannix wrote in an email. “Talking about dying won’t make it happen any sooner, but it can make it happen a great deal better.”

But these conversations shouldn’t just be about end-of-life care or medical decisions — it’s also an opportunity to give and receive stories, explore your spiritual beliefs, get existential with your kids, and connect over grief, joys, and regrets. For example, you may approach an elder and ask: What are some of the defining moments of your life? You may ask a child, What do you think happens after we die? Or you may ask a friend, Have you ever navigated death and grieving?

Finding your own way to incorporate death into your life can also serve as a corrective to a wider culture of silence. “I’m currently getting more and more comfortable with death through spiritual practice and connecting to my family’s roots of Santeria,” says Romero, who checked their sisters’ breathing at night. She connected to Santeria, an Afro-Caribbean religion that originated in Cuba and blends traditional Yoruba practices and Catholicism, through her grandmother, who was recently diagnosed with Alzheimer’s disease. “I also find that I’m coping a hell of a lot better than other people in my family because I do have this comfort in knowing that … I will always have a relationship with her, even in the afterlife, through my spiritual practice.”

Evans, whose father died when she was 18, decided to talk about death and grief during her wedding earlier this year. In her vows, she talked about the sensation of watching her husband sleep at night, and the “creeping dread” of knowing he was going to die some day. 

“ I think that other people appreciate when you talk about things like that, even if it’s hard to, and it was important for me,” Evans says. “I did feel kind of empowered, or at the very least like I had confessed something, you know, it was a relief.” 

For Evans, talking about her preemptive grief wasn’t morbid — it was a testament to her deep regard for her husband.

Though not everyone will have the desire, or opportunity, to talk about death in such a public setting, it’s worth lingering for a moment on Evan’s sense of relief. 

When we talk about the things that really matter — love, death, commitment, grief — with people we really care about, we give ourselves and each other permission to be ever-so-slightly less burdened by death and live more freely in the process. Certainly, there is no diversity in dying. But there is an endless diversity in how we make meaning from death.