On the last day of my grandmother’s life six years ago in fall 2014, I hugged her goodbye after an afternoon at my grandparents’ home in South Florida and expected to see her for lunch the following day. However, I woke up the next morning to the news that my grandmother had died suddenly in her sleep. Instead of meeting up for lunch, my family called to make funeral arrangements. I rescheduled my flight and figured out bereavement days with my job at the time. Because I was on vacation, I thankfully had time to spend with my grandmother during her last unexpected days. The shock from finding out she had died lasted through the week and well beyond her funeral.
After her death, I flew back to New York City to return to what remained of my old life. I’d wanted to leave everything I knew and loved behind and embark on an adventure to a place where I knew no one and recognized nothing. In winter 2015 I’d finally had enough courage and money saved up to visit Iceland on a solo trip for my grandmother’s belated deathiversary. I didn’t expect to find a group of Americans and road trip around the southern coast of Iceland and fall in love with traveling alone, a new part of my life my grandmother will never know.
Every year since my grandmother’s death, without fail, I panic around her deathiversary. How could I commemorate her and the impact she had on my life? In the years since Iceland, I’ve talked with family, went to yoga and stayed low-key. In 2018, four years after she died, I thought I’d go on another solo trip because I wasn’t working and had the time to travel.
However, instead of traveling, I did something different and more close to home. I attended a Death Cafe, where strangers gathered together to talk about death in a supportive environment, at a cemetery in Brooklyn on a cold autumn weeknight. I was intrigued about going to a cemetery where the topic of conversation revolved around death. It wasn’t like death was a hot topic of conversation for small talk, so I didn’t really have the opportunity to bring up death on a whim to friends and family, specifically my grandmother’s death, which happened years ago. I wasn’t sure what to expect or how much I would even talk about such an intimate part of my life with people I didn’t know. Once inside the crematory’s chapel, I noticed a small group of people gathered around trays of cookies and water bottles. The director introduced herself and the backstory of the Death Cafe and then separated us into smaller groups.
My group chose a private back room with urns lining the walls. We pulled our chairs together in a circle and introduced ourselves. The conversation started with why we were there and why we decided to attend a Death Cafe and then expanded to religion, stories of loved ones and friends and their passing and then to the beyond: What happens after we die? Is it good that we don’t know what happens? What would happen if we did? One girl asked how grief changes over time, and how grief changes people. We sat in reflective silence and I thought about the week after my grandmother died when I needed to be around only close friends and family. All of my senses had been muted. I lived life that week in quiet contemplation surrounded by familiarity, the exact opposite experience I was having at the Death Cafe: alone and surrounded by strangers.
After we rejoined the main group, the organizer shared two poems about death with us before concluding the Death Cafe. I felt a sense of peace at having talked about my grandmother to a group of strangers and keeping my memory of her alive. After my grandmother’s death, I was so angry at how she died. The director spoke of a good death and what that means, and my mom, after my grandmother died, had also mentioned that it was a good death. I’ve realized I was upset at the way my grandmother passed and, in a way, of our unfinished conversation. Never saying goodbye and never having that final lunch together.
In the years since my grandmother’s death, I needed to confront my ideas about life, death and everything in between and beyond. I needed the space to talk to people who hadn’t moved on because they didn’t have a starting point to move on from. I found myself opening up to these people and becoming more intimate the further our conversations progressed. After all, how do we talk about death when death is such a taboo topic to talk about?
My grandmother’s presence is still here, in the jewelry and pictures and memories left behind. Attending a Death Cafe provided a space of comfort and allowed me to talk openly and freely about my thoughts and feelings to strangers, and since then, family and friends, about all aspects of death in an open manner. My grandmother’s deathiversary, I’ve come to realize after leaving the Death Cafe, is another day that comes and goes with the passing of time. While my grandmother’s death came as a shock, the ending of her life came, as my mom said, as a mercy to her. A good death to a good person, and these realizations came from open conversations about death.
Kathy Brandt, a hospice industry leader who turned her own terminal cancer diagnosis into a public conversation about choices at the end of life, died Aug. 4. She was 54.
Brandt’s death was announced on social media by her wife and partner of 18 years, Kimberly Acquaviva, 47, a professor of nursing and author of a book about hospice care for LGBTQ patients and families.
“I wanted all of you to know that Kathy had a peaceful death and your love and support is what made that possible,” Acquaviva wrote in comments posted to Facebook. “Our family has felt your love and we can’t begin to tell you how much it’s meant to us.”
Brandt died at the Charlottesville, Va., home she shared with her wife, their 19-year-old son, Greyson Acquaviva, and their dogs, Dizzy and Mitzi. She was diagnosed in January with stage 3 ovarian clear cell carcinoma, a rare and aggressive cancer.
For the past several months, Brandt and Acquaviva chronicled the day-to-day drama of dying in a series of frank, intimate posts on Facebook and Twitter aimed at demystifying the process and empowering other patients.
After researching her disease, which has a median prognosis of less than 13 months and often fails to respond to chemotherapy, Brandt refused drug treatment, declining what she regarded as “futile” medicine. Instead, she chose aggressive palliative care to manage her symptoms, to the dismay of some friends and family — and even her oncologist.
“If it’s not going to save my life, then why would I go through trying to get an extra month, when that month leading up to it would be terrible?” Brandt told Kaiser Health News in April.
The couple’s posts were followed by hundreds of well-wishers who donated more than $80,000 to help defray living expenses and medical costs. The essays and tweets were an unusually intimate window into the physical, emotional and psychological process of dying.
In April, Brandt described herself as a “dead woman walking” on the sidewalks of Washington, D.C., where they lived until June.
“It’s surreal trying to go about a ‘normal’ life when you know you aren’t going to be around in a few months,” she wrote.
During the last weeks of Brandt’s illness, Acquaviva tweeted about her partner’s bowels, posted photos of her sleeping and shared that Brandt was distressed about what would happen to her and to her family when she died. The frank posts prompted concern from people who asked whether Brandt had consented to have her death live-tweeted for the world. Acquaviva replied:
“My wife @Kathy_Brandt is a hospice and palliative care professional, as am I. She decided early on that she wanted us to share her dying process — all of it — publicly so that she could keep educating people about death and dying until her last breath.”
The willingness of Brandt and Acquaviva to share an unflinching account of terminal cancer drew praise from fellow hospice and palliative care experts, said Jon Radulovic, a spokesman for the National Hospice and Palliative Care Organization and their longtime friend.
“As she did throughout her professional career, Kathy has continued to teach the field about compassionate care and patient self-determination,” he wrote in an email before her death.
Elena Prendergast, an assistant professor of nursing at Augusta University in Georgia, wrote that she was moved by their experience.
“I have gone through this with family and with patients, but somehow you both have found a way. With your humor and raw transparency, you both make me feel like I am learning about this process for the first time,” Prendergast tweeted last month.
Brandt remained passionate about encouraging patients to consider the full range of choices when confronting terminal illness.
“If you’re ever diagnosed with a disease that will ultimately kill you no matter what you do, think through what you want the rest of your life to look like,” she wrote in a July 11 email. “Then seek out care that will help you make that version a reality.”
Acquaviva said they had worried that Brandt would not receive the care they’d hoped for in a hospice setting — despite their long efforts to advocate for better conditions for LGBTQ people.
In a post on their gofundme page, Acquaviva urged: “Do whatever you can to ensure that ALL LGBTQ+ people — not just those who know who to call or what to ask for — have access to hospice care provided by professionals who will treat them with dignity, respect, and clinical competence.”
Brandt asked that her obituary appear in The New York Times. It is scheduled to run next weekend, Acquaviva said, and it includes a final request that nods to the activism that characterized Brandt’s work on behalf of LGBTQ people and others who need end-of-life care.
“From the time that Kathy was diagnosed with clear cell ovarian cancer six months ago, she was clear with her family that the cause of death should be listed as the Trump Presidency in her obituary. In lieu of flowers, the family asks that donations be sent to whichever candidate secures the Democratic nomination, even if you really wish someone better were running.”
A memorial for Brandt will be held at 2 p.m. Oct. 26 at Friends Meeting of Washington, 2111 Florida Ave. NW, Washington, D.C. 20008.
In 2008 Anne Pinkerton, 46, learned her big brother died during a rock-climbing accident. She was overwhelmed by the suddenness of it all. David, who was 12 years his sister’s senior, was a radiologist with a passion for the outdoors, Pinkerton tells SELF. He died “in the prime of his life while doing some of his most rigorous athletic work,” she says. Pinkerton had never thought of David as anything other than healthy and now she had to make sense of his death.
“It seemed unreal for a long time,” says Pinkerton, who regularly writes about grief. She remembers her persistent thoughts that David would eventually get in touch with her, that his absence couldn’t be permanent. It wasn’t difficult to imagine that he was just away on a trip, she says.
“A lot of that first year was just really trying to process the fact that he was gone,” Pinkerton explains. “It took a long time to come to terms with the fact that I was going to live the rest of my life without my big brother.”
Having had the expectation that she’d grow old with David, Pinkerton’s grief included feelings of sadness, abandonment, and a bit of anger. But there was also the sense that her grief was inappropriate, she says: “Being a sibling and losing a sibling was so unbelievably painful, [but] people were not treating me as though I had experienced something huge.” This isolation “was a big part of what took me back to counseling,” Pinkerton says. “I had thoughts like, ‘Is there something wrong with me? Am I dealing with this inappropriately?’ Because [people were] acting like this shouldn’t be a big deal. And it was the biggest thing that ever happened to me.”
As awful as it feels, grief is a natural human response to losing someone close to you. The intense emotions that come with grief can all be an appropriate part of eventually helping you heal as much as possible. But there are times when grief is even more overwhelming than usual—times when it hinders your life and happiness long-term. But when losing someone has thrown your world off its axis, how can you tell what’s normal and what’s not? Here’s what you need to know about the typical grieving process, the phenomenon of “complicated” grief, and when to see someone like a therapist about your grieving process.
Grief isn’t linear, but it should soften with time.
“Grief doesn’t really go away,” M. Katherine Shear, M.D., director of the Center for Complicated Grief at Columbia University, tells SELF. But most people will eventually get to a point where “the feelings won’t have center stage the way they do in the beginning,” Dr. Shear says.
So instead of neatly labeled stages, the Center for Complicated Grief categorizes the typical grief trajectory as having an acute phase and an integrated phase. The acute phase occurs shortly after a loved one’s death and includes the intense feelings we often associate with grieving, like sadness, yearning, guilt, anger, anxiety, numbness, wishful thinking, and more.
During the acute phase of grief, activities like eating, walking your dog, smiling, and getting out of bed probably seem like major victories. They are. “Even if you’re just going through the motions at first, doing your routines and daily responsibilities is a good sign” that you might be working through your grief, Rachel L. Goldman, Ph.D., clinical professor of psychiatry at NYU Langone Health, tells SELF.
The integrated grief phase is a more long-lasting form of grief where you acknowledge the loss, but it now has a place in your life without taking over it. You’ll still have bad days, but in most cases you’ll start to have more OK days and even happy ones too.
“What softens grief is making progress in adapting to the loss,” Dr. Shear says. “And adapting to all the changes that come along with the loss of someone close.”
The general expectation is that during the first year of grief, you will start to move away from the acute phase toward the integrated one.
“You’re going to feel sad, but ideally you’re also starting to regain your own sense of well-being,” Dr. Shear says. “And hopefully you’re starting to see pathways forward in your life that have some potential for joy, satisfaction, and continued purpose.”
But if the pain you’re feeling doesn’t seem to be softening as time passes or if it’s even getting deeper, you may be dealing with complicated grief, which is a diagnosable medical condition that can often be treated.
Complicated grief happens when these emotions don’t subside as expected with time.
This essentially means that your acute grief is sticking around longer than it should, preventing you from learning how to live while managing your loss.
A lot is still unknown about this condition. For starters, medical professionals don’t have a clear consensus on exactly when grief becomes complicated, the Mayo Clinic says.
In the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), a resource that U.S. health care professionals use to diagnose mental health issues, this condition is known as persistent complex bereavement disorder (PCBD). The DSM-5 defines it as a “severe and persistent grief and mourning reaction” that must still be around at least 12 months post-loss in order to be diagnosed.
However, the International Classification of Diseases (ICD-11), the diagnostic resource released by the World Health Organization, calls this phenomenon prolonged grief disorder, defining it as a “persistent and pervasive grief response characterized by a longing for the deceased or persistent preoccupation with the deceased accompanied by intense emotional pain.” Experiencing this kind of grief at least six months after the loss is a core ICD diagnostic criterion for prolonged grief disorder.
Though there’s some debate about how long someone needs to grieve in order for it to be considered complicated, one thing’s clear: If the grief is so severe it’s negatively impacting a person’s life in a major way, it may be more serious than typical grief. The DSM-5 lists symptoms like feeling as though life is meaningless after the loss, a preoccupation with the person who’s gone and the circumstances of their death, and loneliness. The ICD lists symptoms such as feeling you’ve lost a part of yourself and an inability to feel happy. (There’s a lot of symptom overlap between the two lists of diagnostic criteria.)
A lot of these symptoms are actually normal early in the grieving process. For instance an inability to stop counterfactual thinking—concocting alternatives to events that have already happened—is to be expected at first, Dr. Shear says. It’s natural to think, If only I had done this one thing differently, maybe the person I love would still be here. But if those thoughts become the focus of your thinking for a prolonged period after the loss, it could prevent you from integrating grief into life. Excessive avoidance is another example. It’s reasonable to avoid specific places or things that remind you of your loss early on in the grief process, but if it persists it might be a sign that you could benefit from support to help you move forward, Dr. Shear explains.
There aren’t firm numbers for how many people are impacted by complicated grief. The Center for Complicated Grief estimates that around 10 to 15 percent of people who have suffered a loss may be dealing with this condition. No one knows why a minority of people develop complicated grief while others don’t, Dr. Shear says. But there are risk factors that might make you more prone to it, like a history of depression, separation anxiety, or post-traumatic stress disorder, or a personal history of abuse or neglect, according to the Mayo Clinic. If the person you lost died unexpectedly or violently, that’s another risk factor, as are circumstances such as the death of a child, social isolation, and life stressors like money troubles.
To make things more confusing, complicated grief is often misdiagnosed as depression, according to the Center for Complicated Grief. One way to tell the difference is that complicated grief is characterized by yearning and overwhelming thoughts about the person you lost, while depression can feel like more of a sadness or loss of pleasure that blankets your life but isn’t centered so much on a death. Of course it’s possible to have both complicated grief and depression too.
Consider seeking mental health support if your grief feels all-consuming.
Pinkerton says that she was comfortable getting a therapist after her brother’s death because she’d been in therapy before. But if you haven’t been in therapy, it can be hard to pinpoint whether or not you could benefit from some extra support.
No matter where you think you might be on the grief continuum, Goldman suggests seeking support from someone like a doctor or mental health professional when you feel you have “reached the end of your personal coping mechanisms.”
Instead of focusing solely on the timeline, try to examine the intensity of your grief. It doesn’t matter how long it’s been. If your grief feels utterly overwhelming, that’s reason enough to reach out. You don’t need to think you might have complicated grief in order to deserve help.
“I don’t think it’s ever too soon to see a provider,” Goldman says. “Worst-case scenario, a therapist says, ‘This is a completely normal reaction. I would also feel sad. I would also cry.’ And that is therapeutic and powerful for someone to hear.”
If you do see a therapist within the first few months of your loss, they might tell you that you have an adjustment disorder, which can occur when you’re having trouble coping with a big life transition, according to the Mayo Clinic.
“An adjustment disorder is a way we classify anybody that has had a major stressor in their life and has [mental health-related] symptoms following that stressor,” Goldman says.
The death of someone close to you is a huge stressor that naturally can come with intense emotions and pretty significant life changes (like relocation, financial issues, and other logistical stuff). These changes and the loss itself might trigger some disorienting feelings, but it doesn’t necessarily mean that there is anything wrong with how you’re handling it all.
The important thing to note here is that adjustment disorders are typically short-term reactions to stressful life events. In most cases, talking through your experience with a therapist should help the adjustment disorder symptoms subside within six months, Goldman says. If your symptoms don’t subside and it turns out you may have complicated grief, you’ve already laid some groundwork with someone who may be able to help.
Experts typically treat complicated grief with something that’s (unsurprisingly) called complicated grief therapy, according to the Mayo Clinic. It involves techniques like retelling the circumstances of your loved one’s death in a guided format that might help you become less triggered by those thoughts or images. Ideally this treatment will help you explore your feelings in a way that allows you to better integrate your grief into your life. And if you have other health conditions such as depression you could benefit from talk therapy for that, along with medications like antidepressants, the Mayo Clinic says.
If you don’t feel compelled to see someone like a doctor or mental health professional right now, that’s OK. But support might be available through other avenues too, like the friends and family who might be desperate to help you or support groups for people who can relate.
“One of the most important things is to feel like someone else has actually been through this before and has lived to tell about it,” Pinkerton says. “If you can find other people who have experienced something similar, it’s incredibly empowering to realize that not only are you not an alien, you will survive.”
The average life expectancy in the United States is now 78.6 years old, according to the most recent data available from the Center for Disease Control (CDC). That’s almost two times what it was a century ago, when it was just 39.
While some might believe we’re on a path toward immortality, at least for now, death remains the one certain rite of passage that arrives for everyone eventually, and Dr. B.J. Miller believes a reckoning is in order.
“It’s high time to review the very common, boring truth that we’re all going to die,” says Miller, a hospice and palliative care physician whose TED Talk, “What Really Matters at the End of Life?” has been viewed more than one million times. The twist: More open conversations about death and dying may in fact help us all get more meaning out of life.
That’s one takeaway from Miller’s new book, A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, co-written with Shoshana Berger. Part manual for practical stuff (like how to deal with the mountain of paperwork when someone passes) and more heart-centric subjects (like personal legacy and grieving for loved ones), the book is intended as a resource for anyone who will experience its subject matter, aka all of us. Prevention spoke with him about why talking about death talk is on the rise in the wider culture—and why it’s something to start discussing sooner than later.
We’re about to be the oldest, frailest population ever.
Americans have reached a pivotal population point. “We are about to be, in actual terms and relative terms, the oldest, frailest population ever,” says Miller. “Everyone’s going to be living with chronic illness, everyone’s going to be dying from chronic illness, in numbers we’ve never seen before.” Mass migration into retirement centers and care facilities isn’t the solution—but a more open, pragmatic dialog about quality of life and personal desires could be, Miller believes.
So, it’s time to develop a “relationship” with death.
There’s a reason talking to a sick loved one or sitting down to write a condolence letter can be so paralyzing.
“We don’t have the right language, or we worry we’ll say something at the wrong time and scare the person we’re talking to,” Miller says. His solution: “Think about it like a series of conversations, not a long-time talk.”
Discussing death in the abstract with someone when their health is good can also help you understand what they may want, and need, down the line; furthermore, it can empower you to articulate those things for yourself. Will those kinds of talks potentially make you anxious? Of course. But the aim is normalization over time—and that comes with a silver lining. “There’s a secret in the hospice world: Most people who do this kind of work and are around this subject a lot will probably tell you that their lives are better for it,” says Miller.
Listen to your loved ones.
Miller has observed that patients know more about what’s going on with their health than anyone else does—or that they may be letting on. A person might hesitate to bring up their thoughts about dying because it sounds like negative thinking. “The patient themselves is languishing, not knowing how to talk about it, or they don’t want to hurt their family’s feelings,” Miller says.
His advice is to “keep an eye out. The moment dad says, ‘I’m not sure about this treatment,’ or [mom] starts talking a lot about God,” give them the opportunity to follow that thread. You can come at the conversation from a philosophical or spiritual angle, focusing on beliefs or fears, but the point is to listen and hear them out. “When they crack the window, dare to enter it.”
It’s okay—actually, essential—to talk about costs.
Miller has seen caregivers lose their jobs, drain their bank accounts, and undermine the financial stability of their own families. “It’s as though bankrupting yourself for a loved one is the currency to show how much you care, even though everyone in the mix knows the person is going to be dying,” he says. But while you can’t place a monetary value on a life, it’s okay to keep money in the conversation. “Invite this variable into the mix in a conversation with your doctor,” says Miller. “It’s not just the medication or the pacemaker. It’s the cost of living with this thing.”
Furthermore, he adds: “Our healthcare system is wired to extend bodily life at all costs, and as our technologies have improved you can prop up a body practically indefinitely,” Miller says. “As patients—as people—you have to upend the medical system. You have to disrupt it and say ‘no thanks.’ Otherwise you’ll land in ICUs with tubes in every orifice and your family has got to decide how to schedule unplugging you.”
Ask yourself: Can I afford to die?
“Our commercial world, our health and benefits—all of it shows this huge design flaw: Dying is not baked into the plan,” says Miller. “We tried to erase it and it can’t be erased.” The result: a framework, from retirement saving plans to health insurance programs, that don’t include the costs associated with death in the picture. Which means: “You need to save more than you think you do—sock away money.”
Bear in mind what’s covered, too. An experimental treatment could be entirely out of pocket, while hospice is highly subsidized. At the end of the day: “It’s about harm reduction. You’ve got two shitty options. But a less shitty option is better, and that could make an important difference.”
Think out of the box about legacy.
“Selfish people do not tend to die happy because they can’t see the world outside themselves,” Miller says. Learning to do that—to care about the world beyond your presence in it—can help us all become kinder people, but it can also help frame thoughts about what you want to leave behind.
Miller is referring to legacy, which might be the best shot we get at immortality. But while we tend to immediately jump to monetary donations, it can be any mark on the world you’ve left behind. Miller tells a story about a man who used to sit out on his front porch and wave at everyone who went by; when he passed, “the whole neighborhood changed, just because that guy wasn’t out there waving.” The bottom line: “You’re going to affect people, no matter what you do.” So try to leave behind something they will remember with a smile.
Initially, the cemetery in Rhinebeck, New York, appears conventional: businesslike granite squares placed in rows, flags and silk flowers sticking up here and there, grass mowed tight all around.
In one corner, however, a walking path roped off from vehicles invites visitors to stroll into the woods. The area looks wild, but it turns out to be part of the cemetery. A hardwood sign marks it the “Natural Burial Ground.” Cherry, beech, and locust trees stretch tall. Ferns cover the ground. The sweetness of phlox, a purple wildflower, wafts in the air. The lawn portion suddenly looks as contrived as a golf course.
“It’s stark, isn’t it?” Suzanne Kelly, the cemetery’s administrator, says of the contrast. On a spring day, she’s taking us on a tour of the natural section she helped establish in 2014. We step in and she starts describing the deer, wild turkeys, and songbirds that pass through (and also warns us about a poison ivy patch). About 100 yards in, we start to see mounds and a few small fieldstones, some engraved with simple words like “Dear Nature, Thank You, Evelyn.” These 10 acres have been permanently set aside for bodies to be buried without the chemical embalming, nonbiodegradable caskets, or concrete vaults that often accompany the modern American way of death.
Kelly is a thoughtful Gen X academic-turned-garlic-farmer-turned-green-burial-activist-and-expert. She remembers first feeling disconnected from standard funerals when her father died in 2000. She stared at the vinyl carpet covering his deep concrete vault and wondered what all the trappings of her dad’s Catholic service were for.
“The idea of ‘dust to dust’ seemed to be missing,” Kelly remembers. “Even though we were standing at the grave saying those words, we were not living those words.”
After moving back to the Hudson Valley in 2002, Kelly joined Rhinebeck’s cemetery advisory committee. She hoped to create options for people who wanted highly personal burials that connected to the earth. Since then, Kelly has positioned the Rhinebeck natural burial ground at the forefront of a growing international movement to reclaim death by bringing back burial traditions that are more environmentally friendly, more personalized, and more connected to place.
In 2015, Kelly wrote Greening Death, the definitive book on the grassroots efforts behind the movement. “The impetus has been to make death more environmentally minded, less resource-intensive, and less polluting,” she says. “And to tie us back to the land.”
While Stiles Najac buried her partner in March, she found that the Rhinebeck ground gave her an unexpected peace. Najac was nine months pregnant with their son when her partner, Souleymane Ouattara, died by suicide last fall. Six months of bureaucratic complications followed before Najac could lay him to rest. (A medical examiner stored Ouattara’s body in a cooler, a common preservation method before natural burials.) Ouattara was an Ivory Coast native, and his Muslim family wanted Islamic “dust to dust” burial traditions, which typically eschew vaults.
So on a crisp day, Ouattara’s friends and family traversed the burial ground’s muddy lane to a chosen spot in the sun. They lowered his body into the ground using straps.
“It added another level of connection,” Najac says. “People actually returned him to the earth.”
As sunlight flickered through the branches, each mourner had a chance to speak. Ouattara’s uncle had plainly felt the stigma of a family suicide. As the service went on, Najac watched his demeanor change. His nephew was still beloved.
Afterward, though lunch was waiting, everybody lingered. “We were nestled in the trees, which create warmth on even the coldest day,” Najac remembers. “I had that feeling of comfort and acceptance. This was nature’s home.” She plans to bring their exuberant baby son, Zana, to picnic in the woods with friends in the warmer months near his dad.
Since the Civil War, American death rituals have become increasingly elaborate, complete with artificial embalming, concrete vaults, and satin-lined metal caskets. But in 1963, writer Jessica Mitford’s witty exposé of the funeral industry, The American Way of Death, sold every copy the day it was published. (Spoiler: Plenty of material is wasted along the way, but lavishly buried bodies still decay, perhaps even more spectacularly than their pine-boxed counterparts.) The book changed the way Americans thought about funerals and contributed to the growth of cremation rates, from 2% then to more than 50% today.
Still, cremation has limitations in both cost and impact. In 2017, the median cost of an American funeral with viewing and vault was $8,755, according to the National Funeral Directors Association. The median cost of a comparable cremation wasn’t dramatically less, at $6,260.
In the age of climate change, environmental concerns have also prompted more people to cremate. For example, a conventional burial contributes to the production of about 230 pounds of CO2 equivalent, according to Sam Bar, quality assurance and manufacturing engineer at Green Burial Council, a California-based nonprofit that advocates for “environmentally sustainable, natural death care.” But burning isn’t as eco-friendly as many assume. Cremation relies on fossil fuels, produces about 150 pounds of CO2 per body, and releases mercury and other byproducts into the air. Burning one body is equivalent to driving 600 miles. And scattering “cremains” isn’t good for soil.
Then a couple decades ago, activists on both sides of the Atlantic came up with similar alternatives to the $20 billion funeral industry: What if we returned to burial practices that allowed bodies to decompose naturally? And what if lands could be preserved in the process? The author and social innovator Nicholas Albery helped establish “woodland burials” in the United Kingdom in 1994. The first similar but independently generated concept in the United States was Ramsey Creek Preserve, established in South Carolina in 1998. Billy and Kimberley Campbell are proud that it is now a dedicated Conservation Burial Ground, with a permanent land trust agreement. “Instead of wasting land, you’re actually protecting ecologically important land,” Billy says.
Whether next to a regular cemetery or on conserved land, there are now around 218 natural burial grounds in the U.S. , up from around 100 just five years ago. The Green Burial Council certifies about one-third of them. (New Hampshire Funeral Resources, Education & Advocacy keeps a longer list that includes grounds not certified by the Green Burial Council, while other burial sites remain unreported.)
The Green Burial Council holds dual nonprofit status: a 501(c)(6) that certifies grounds and a 501(c)(3) that conducts education and outreach. The organization formed in response to the growing green burial movement and has since become the standard bearer of, and leading authority in, the U.S. movement. That’s no mean feat, given the divisions of purpose that have fragmented the nascent industry in the past. Lee Webster, director of the Green Burial Council’s education and outreach arm, says parts of the early movement were “very elitist,” and there is still a lot of confusion around terminology and standards.
The Green Burial Council currently has three certification standards for green-burial grounds. Certified “hybrid cemeteries” are modern cemeteries that reserve space for burials without embalming or concrete vaults (each year, burials in the U.S. use more than 827,000 gallons of dangerous chemicals and 1.6 million tons of concrete, materials that can be toxic to produce and damaging to the environment). Certified “natural cemeteries” prohibit the use of vaults and toxic chemical embalming. And certified “conservation burial grounds” meet the other requirements of hybrid and natural cemeteries plus establish a land trust that holds a conservation easement, deed restriction, or other legally binding preservation of the land.
Webster spent three years on the Green Burial Council board through 2017 and returned earlier this year to help steer education and outreach. “Because of the myth people have been sold about vaults and caskets, we have to reeducate people on the safety of bodies being buried in the ground without all the furniture,” she says.
The Council updated its standards this spring to better align them with land trust and land management conservation practices. Establishing a land trust for a burial ground lends legitimacy to what’s still a niche movement, in addition to preserving the land and creating a potential revenue stream—crucial at a time when cemetery funding is short (in large part because increasing U.S. cremation rates have cut burial-plot revenues).
As private and municipal-run burial grounds fill up, they can’t keep adding bodies, which means they have to dip into endowments to fund operations, Webster says. It’s not uncommon for a private cemetery to be abandoned when it runs out of money, at which point a nearby municipality often takes over, stretching funds even thinner.
To advocates like Webster, land conversation is the future of green burial. “The way it’s been approached has been to see it from a cemeterian’s point of view rather than a conservation point of view,” she says. “We’re going back now to encourage more land trusts to participate in this and understand how burial can be a conservation strategy.”
Others are going even further. In May, Washington became the first state to legalize body composting as an alternative to cremation or casket burial, a process pioneered by the Seattle-based company Recompose. Other companies offer still more unusual methods of handling human remains: You can have your body mummified, dissolved in water and lye, buried in a pod and planted with a tree, “promessed” (frozen, vibrated into dust, dehydrated, and reintegrated into soil), or put into the ground with a burial suit embroidered with mushroom-spore thread.
Webster believes that body composting and other methods of reintegrating human remains into the environment are “the answer” for urban settings, where burial space is increasingly scarce. So why keep advocating for natural burial grounds like the one in Rhinebeck? It’s the potential they hold for land conservation that’s exciting, she says, and remembrance ceremonies can become new ways to engage with the land.
On the day we visited the Rhinebeck natural burial ground, two people bicycled on the pathway through the woods. Although they’d heard the site was a cemetery, they were using it as they’d use any public park.
“Conservation is about people needing and caring for land,” Webster says. “They’re going to conduct life-affirming activities: Getting married there, baptisms, confirmations, bird-watching, hiking, family picnics—all kinds of things are happening in these spaces because they’re conservation spaces first. That’s the value of it.
“It’s not just that we’re going to put people in the ground without concrete. It’s about the big picture and how it affects people, the way we relate to death but also the way we relate to each other in life.”
There is disagreement within the movement on how best to grow. The values driving green burial suggest there should be more conservation cemeteries, but to meet that standard usually requires starting a new cemetery rather than converting or hybridizing an existing one. That costs a lot of money and requires securing new land and going through a complicated zoning process. To date, the Green Burial Council has certified only six conservation cemeteries in the U.S., compared to 35 hybrid cemeteries.
Cynthia Beal, of the Natural Burial Company in Eugene, Oregon, is a vocal proponent for converting existing cemeteries to natural burial spaces. That averts the zoning issue and provides an educational opportunity for the community.
“If you’re coming into a situation where the cemetery has been abandoned or poorly cared for and you make natural burial its new focus, you’re likely to have neighbors as advocates, happy to see the grounds renewed and the place cared for again,” Beal says. “Every cemetery is unique, telling its own stories of a community’s establishment and growth, and that history is also worthy of stewardship.”
Webster, for her part, is pragmatic about the challenge: While it would be great for more conservation cemeteries to come online, practices at local cemeteries should be improved in the meantime. That would also increase education and access.
“A sense of place is critically important to this,” she says. “I’m not going to [be driven] 300 miles to be buried in a green cemetery. My family is going to associate me with here, where we lived.”
Even in places like Rhinebeck that build at least partly on existing cemetery infrastructure, establishing green-burial sites takes time. Ramsey Creek Preserve was easier, Kimberley Campbell says, because South Carolina didn’t bother regulating. “I called down to the funeral board and got a delightful secretary,” Kimberly remembers. “She said, ‘The cemetery board has shut down. … I think what you are doing sounds marvelous, and there is absolutely nothing to stop you.’”
For Rhinebeck administrator Kelly, using municipal land didn’t require raising the $50,000 in trust for upkeep that is standard in many places. Still, it had to be planned, bid, surveyed, plotted, and certified, which took around five years.
The payoff of a natural burial ground can be big for a community. Gina Walker Fox, a Rhinebeck real estate agent, says she feels more comfortable with death for having bought a plot. (At 61, she recently asked a local quilter to sew her a raw-linen shroud, which she plans to embroider with a symbolic river.) Fox’s plot is near a blackcap raspberry bush she knows her adult children will want to visit.
“That old way—where people pick berries, sit, visit, picnic—that speaks to me,” she says.
Kelly laughs when we ask where she’ll be buried. She hasn’t picked or purchased a spot yet. Even a green-burial activist can feel like she has plenty of time to live.
“Once in a while,” she says, “I come by here and think I should probably get around to getting a plot.”
Jon Meacham is the author of “The Soul of America: The Battle for Our Better Angels.”
Tuesday was to be the day — in the morning, because everything was taken care of. The goodbyes had been said, the tears shed, the coffin handmade. In the spring of 2018, Dick Shannon, a former Silicon Valley engineer with untreatable cancer, took advantage of California’s “death with dignity” law to end his own life once all other medical possibilities had been exhausted.
“My observation about the way people die, at least in America, is they . . . are not allowed the opportunity to be part of the process,” Shannon explained. “For my way of thinking, the part that bothers me just immensely is not being allowed to be part of that process. It’s my death. Go with what you believe, but don’t tell me what I have to do.” Discussing the ultimate decision with his doctor, Shannon remarked, “It’s hard to fathom. I go to sleep and that’s the end of it. I’ll never know anything different.” He paused, then said simply: “Okay.”
When the day came, Shannon was ready. The end-of-life medical cocktail was mixed in a silver stainless steel cup, and he drank it in front of his loving and tearful family. “I’ve accepted the fact that I’m dying,” he’d said earlier. “There’s nothing I can do to stop it. Planning the final days of my life gives me a sense of participation and satisfaction.” As he prepared to slip away, he told his family, “Just know that I love you — each and every one of you.”
America is becoming ever more like itself when it comes to death. From Walden Pond to Huck Finn’s lighting out for the territory, we’re a nation of individualists, shaped and suffused by self-reliance and a stubborn allegiance to the live-free-or-die motto of the Revolutionary era. With this twist: Baby boomers and their successor generations are insisting on being free to take control of death itself. Innovation, creativity and customization — the hallmarks of our time, an age in which we can run much of our lives from our mobile phones — are now transforming both how we die and the mechanics of remembrance that come afterward.
The coming revolution in death — and Dick Shannon’s story — is laid out with uncommon wisdom in a powerful, new HBO documentary, “Alternate Endings,” which debuts Aug. 14. Only eight states and the District of Columbia have death-with-dignity laws, but three of those states — Hawaii, Maine and New Jersey — have put their statutes on the books within the past year. And 18 other states considered such laws in the 2019 legislative season.
The movement has not attracted the same attention it once did; in the 1990s, Jack “Dr. Death” Kevorkian, the right-to-die advocate, drew considerable public alarm. As the documentary by Perri Peltz and Matthew O’Neill makes clear, the conversation has entered a new and compelling phase now that Americans are thinking about death as something as disintermediated as commuting, dating and shopping.
The United States has a long history of rethinking the rituals of death. Embalming became part of the popular understanding and tradition of death during the Civil War; the task then was to preserve the bodies of dead soldiers so their families could see them one final time. Abraham Lincoln may have done the most to raise the profile of embalming when he chose first to embalm his 11-year-old son and then when his own corpse was embalmed for the long train ride home to Springfield, Ill., after his assassination.
Now the death industry in the United States has evolved with the culture. For many, corporate consolidation has reshaped a funeral home industry, which was once made up almost entirely of local, family-owned companies. (And which, as Jessica Mitford wrote in her 1963 book “The American Way of Death,” unctuously gouged grieving families.) The Internet has disrupted the casket industry with Walmart and others selling directly to families. As “Alternate Endings” reports, there are now green burials (including using a loved one’s ashes to help restore coral reefs), space burials and even drive-through, open-casket viewings.
Once the great gatekeeper of life and death, organized religion, too, is losing its sway. In an era in which friends routinely ordain themselves on the Internet to preside at weddings, the rising numbers of Americans who are “unaffiliated” with any particular faith mean that institutions that once gave shape to life and meaning to death are being gradually supplanted family to family.
The issues raised by Dick Shannon’s story are the most profound. Many religious authorities — notably the Roman Catholic Church — oppose euthanasia (Greek for a “good death”). Such teachings face a generational head wind as more people (and states) move from deferring to institutions to simply making their own decisions. The questions involved are intricate and complex and painful — but it is plain to see that we are witnessing another rite of passage undergoing an irrevocable disruption.
When the Shannons held a “living wake” for friends to say goodbye to Dick, the family hung a banner on the wall: “Life is what you celebrate. All of it. Even its end.” Before passing, Shannon said, “I want it to be on my terms.” Given that death comes for us all, so, too, will many of us have to confront the agonizing decision that he faced with grace.
I of all people should know how to do this. As an ICU nurse, I see every day how agonizing it is for families to make end-of-life care decisions for loved ones who have not made their wishes clearly known. I know what I want. I know what the legal options are. But when I sit down to fill out the papers, I stall.
The form remains incomplete.
All of my experience urges me to act. I think of the anguished adult son trying to decide whether his elderly, unconscious mother would want to live permanently connected to a ventilator.
“Pray for me that she dies before I have to make a decision,” he told me. If she had made her choices known before medical calamity struck, her son would have the peace of mind of carrying out her wishes, one way or another.
I think of another family, where two siblings — one of them a physician — came to blows in the hospital waiting room because they could not agree on whether to stop aggressive treatment for their father, given that his organs were shutting down, one by one.
Of course I want to reduce what’s called the “decisional burden” on my own family by making my choices clear in case I become too sick some day to decide for myself. I just can’t bring myself to translate my well-informed preferences into a legal document such as an advance directive.
I’m not alone. Although advance-care planning has other well-established benefits, including an increased chance that patients will receive the care they want, only one-third of Americans have any sort of advance directive, according to a 2017 study led by researchers at the University of Pennsylvania.
And health-care professionals like myself are no exception. In her 2017 book “Extreme Measures: Finding a Better Path to the End of Life,” physician Jessica Nutik Zitter explained why she avoided the task of translating her medical wishes into a series of yes/no check-boxes that make up many advance directive forms.
“My feelings are too complex, too nuanced, to fit into one little white square,” wrote Zitter, who is board certified in both palliative care and critical-care medicine.
So why is this undertaking so difficult? And how can we all get better at completing this vital task?
The first barrier to advance-care planning is often understanding what is involved. According to G. Kevin Donovan, director of Georgetown University’s Pellegrino Center for Clinical Bioethics, an advance directive is a document that usually includes two separate elements: naming a health-care surrogate and creating a living will.
A health-care surrogate or “proxy” is an adult who is legally empowered to make medical decisions for you when you can’t make them for yourself. Many think they have this base covered when they name a durable power-of-attorney. But a power-of-attorney directive does not automatically allow for decision-making power in the health-care realm.
“They can sell your stock, but they can’t take you off a ventilator,” Donovan said.
A living will offers you a way to say in advance what sorts of medical interventions you would want. For example, the form we offer at our hospital asks whether you would want “artificial nutrition” — meaning liquid nutrients delivered through a tube — if you were expected to die soon.
The problem with these forms is that they rarely capture the complexity of real-life medical decision-making, Donovan said.
In the intensive care unit where I work, we recently had a woman in her 60s whose cancer had come back with a vengeance. She was awake and talking with her family, but her vital signs were deteriorating quickly. We asked the patient and the family what they would want if she could no longer talk and make decisions, and they requested an advance directive form.
When I came to check on them later, I found the patient and family puzzling over the form’s questions, such as what kind of care she would want if she were in a “persistent vegetative state.” The abstract scenarios were almost irrelevant to their immediate situation.
I redirected the conversation to the concrete choices in front of them: Would she want a breathing tube put in her throat in the next 24 hours when her lungs began to fail? Or to have a large IV inserted in her neck to start dialysis after her kidneys stopped working? Thankfully for the family, the patient made her own decisions and shared these with our physicians. She said she didn’t want any “heroic” interventions, and she died 48 hours later, with her family at her bedside.
To me, filling out a living will as a relatively healthy person feels like ordering food for a meal I will eat in 20 years: It seems impossible to predict what I will want in that moment. Is it good to be vague and write, “I want to be kept comfortable?” Or better to be highly specific and say, “I never want to have a feeding tube inserted?”
Because living wills are difficult to translate into real-life decisions, many experts now advise focusing on not only naming the right person as your health-care decision-maker but also talking in depth with that person about what’s important to you.
“The best advanced directive is to name an educated person as your health-care surrogate,” said Douglas Houghton, an acute-care nurse practitioner and director of advanced practice providers at Jackson Health System in Miami. “You need to have a real conversation with that person, and not simply write down a name on a piece of paper that you keep in a filing cabinet.”
Zitter agreed that having conversations with loved ones is vital.
“A written document is a good first step, but it’s not the ultimate goal,” said Zitter, whose work around end-of-life decisions was profiled in the 2016 Netflix documentary, “Extremis.” “For me, the real work happens on Friday nights at the dinner table, when I talk with my family about illness, and death and what I would want at the end of my own life, even when my sons are rolling their eyes.”
But Zitter conceded that a major barrier stands in the way of these conversations: a fear of talking about death.
“Even for me, as a doctor who deals with death every day, I don’t want to think about my own end, it makes me very sad,” she said.
So what can help us all climb over this final existential barrier to end-of-life planning?
I recently witnessed a conversation at work between a palliative care doctor and a patient with severe heart failure, whose adult son and grandchild were at the bedside. The doctor gently reminded the patient that if she could give her preferences now while she was conscious, she would relieve the burden on her son, who otherwise would have to make hard decisions on her behalf. When she finally said she wanted to go home with hospice, her son was visibly relieved.
Framing end-of-life planning as a service to loved ones is a compelling idea. One critical-care doctor I work with suggested we link advance directives to Valentine’s Day. Show your love by sharing what you want. This idea is also what finally motivated me to overcome my own hesitations.
This month, I finally filled out “Five Wishes,” a downloadable document, where I named a health-care proxy and two backups. I wrote I don’t want to artificially prolong my life with machines, such as a ventilator, and if such treatments are started, I want them stopped. I had two neighbors witness the document, making it legally binding in Virginia, and placed it in our kitchen filing cabinet.
Talking about my wishes over dinner with my kids? I’m not there yet. Meanwhile, let me share my advance directive here, so at least my kids can Google it: When the time comes, keep me comfortable, let me go and know that I love you.