But in addition to having “the conversation” about end-of-life wishes, we should also grapple with deeper societal questions about who gets the privilege to plan.
It may sound perverse to suggest that a cancer diagnosis could be a fortunate event, but cancer compels people to anticipate death in a way that many never will. Most people will never have the opportunity to choose when, where and how they die because death comes unexpectedly, or the circumstances impede planning. If anything, my research on the desire for control at the end of life has taught me that death, all too often, ignores our plans.
But planning has nevertheless been a prominent focus of nationwide public health efforts to improve end-of-life care over the past several decades. Advance care planning is a broad term that encompasses talking with loved ones and health care providers, appointing a surrogate decision maker and recording end-of-life preferences in writing. Advance care planning enables people to legally document their wishes—for example, to avoid life-prolonging treatment if one is unlikely to survive or to attain a certain quality of life—in case they become incapacitated.
Such planning is particularly important for COVID-19 because of the vital use of mechanical ventilation among the sickest patients. Contemplating decisions about life-prolonging treatment in advance takes on heightened importance in a climate in which critical care resources are scarce and in which intubation puts health care workers at increased risk for contracting the virus themselves.
Americans do not engage equitably in planning for the end of life, however. Black Americans consistently utilize less advance care planning than white Americans. The reasons for this include worse access to medical care, especially culturally sensitive medical care; religious beliefs and cultural values that favor leaving decisions to God; and mistrust in medicine rooted in historical legacies of mistreatment, experimentation, and racism. Yet without the benefit of planning, Black Americans are less likely to receive care consistent with their preferences.
These inequities are all the more painful in a year in which police brutality and anti-Black violence brought the Black Lives Matter movement to the forefront of public consciousness. The tragic deaths of George Floyd, Ahmaud Arbery, Breonna Taylor, Elijah McClain and many other Black Americans highlight not only a foreclosed opportunity to engage with death as an object of anticipation and planning, but also, more fundamentally, a systemic failure of white Americans to acknowledge and uphold the value of Black lives. When the system has failed and shortened Black lives at every step, can we blame Black Americans for a reluctance to engage with the very same system to plan for death? From this perspective, advance care planning may seem tantamount to acquiescence.
This is not to deny that advance care planning and communication with loved ones are important and useful goals for all Americans, regardless of race or age. I teach a seminar for second year medical students on Death and Dying in America, in which I ask them to interview a partner or family member about their end-of-life wishes. I don’t want my students—many of whom have never experienced the death of a loved one—to confront the discomfort of speaking with patients about death before having done so at home. This year’s exercise was particularly poignant, as several students had family members in ICUs, or working on the pandemic’s frontlines.
But I also ask my students to think critically about who gets the privilege of planning: to examine the cultural values that underlie the expectation for choice at the end of life and confront racial inequities in advance care planning. When we advocate for more conversations about death and dying, let’s make sure that a piece of this conversation is facing the tough questions about who among us will get to plan and choose.
Tracey Carlos is one of many people who has lost both parents (pictured above) to COVID-19 and is working to cope with overwhelming grief during the pandemic.
COVID-19 has taken the lives of multiple loved ones from some families.
Dealing with the death of more than one family member at a time is a concurrent crisis.
There are ways to deal with such grief.
Bob and Bano Carlos were married 53 years when they both died from COVID-19.
According to their daughter, Tracey Carlos, they were inseparable.
“As important as my brother and I were to them, they were everything to each other,” she told Healthline.
During a phone call on March 14, 2020, Carlos learned that her mom had a fever and that her father wasn’t feeling well.
“They lived in a retirement community in Florida and assumed COVID was in the West Coast and hadn’t reached the East Coast yet. Florida was downplaying it at the time, and so they continued to live their life,” Carlos said.
Both of Carlos’ parents tested positive for COVID-19, and both were intubated in the intensive care unit (ICU) on March 20.
Because her mother lived with myelodysplastic syndrome (MDS), Carlos knew the chances of her surviving COVID-19 were unlikely.
She died on March 25 at 73 years old.
Carlos lives in Olympia, Washington, and wasn’t able to travel to Florida to be near her mother before she passed. However, Carlos did get there in time for her father’s last days.
“Dad lasted 30 days in the ICU, and we fully expected him to recover. He had COPD, but he practically forgot he had it because it [was managed] and wasn’t a major part of his life,” Carlos said.
Bob died on April 24 at 75 years old.
“It’s so hard to lose them both, but [the only] relief — and that’s hard to say — is that we didn’t have to tell Dad that Mom passed away,” Carlos said.
Losing more than one family member in a short time frame is considered a concurrent crisis, said Therese A. Rando, PhD, psychologist and owner of the Institute for the Study and Treatment of Loss.
“When the second person dies, the individual is still dealing with the loss of the first person,” Rando told Healthline.
This type of loss can lead to grief overload, or cumulative grief.
“We know this happens with both subsequential and nonsubsequential loss. Say two people die in an accident or fire. Your grief and mourning for Person A is complicated by the fact that you also have the burden of the grief and mourning for Person B, and that stresses you, adds to the traumatization, and reduces your support system,” Rando said.
Reviewing your relationship with the deceased is part of healthy mourning, she added.
“We go over it and think about the good, bad, happy, and sad times. Doing this is more challenging when you are reviewing Person A and that inherently means dealing with the loss of Person B, because they are also involved in that story you are reviewing,” she said.
Grief overload is a high risk factor for having complications with mourning.
While people who lose multiple loved ones will still experience the stages of grief — denial, anger, bargaining, depression, and acceptance — Dr. Leela Magavi, psychiatrist and regional medical director for Community Psychiatry, said the severity of the pain may be amplified.
“When individuals are overwhelmed with multiple losses, they are more likely to remain in the stage of denial for longer periods of time,” she told Healthline.
Magavi said they may engage in avoidant behavior by consuming alcohol or using substances to numb their pain.
“I have evaluated many children and adults who begin to stress and binge eat to alleviate their emotional pain,” she said.
The pressure to grieve both losses at once or equally can also add to the complexity of the situation.
“Each loss warrants time, reflection, and healing. If the individual had a complicated relationship with someone who passed, they may feel more guilty about this loss than the other due to their conflicting feelings,” Magavi said.
Conversely, she said they may feel shame and guilt if they don’t feel as saddened by one loss compared to the other.
“I remind individuals that there is no correct way to grieve,” Magavi said.
For Carlos, grief sometimes means mourning both of her parents together as well as separately.
“I used to talk to my mom every Saturday and I’ll find myself thinking, ‘Oh, I can’t wait to tell her this’ and then I realize I can’t tell her. And my dad had a job that involved him being a pirate at Disney World, so anything to do with pirates makes me stop and think of him,” she said.
Despite the notion that losing both parents is the natural order of life, Rando said research shows there are fundamental shifts that people make in the aftermath of losing their parents.
“When it’s a parent and you have a good relationship with them, you are incredibly impacted. Your parents know you from day one and you share such an incredible history. Losing them is a devastation of parts of the original family unit,” she said.
While the loss of both parents is complex, there are ways to cope. Below are some to consider.
Death during the pandemic, whether related to COVID-19 or not, can take more time to grieve due to shock, said Rando.
“I’ve done a lot of work on COVID death, and we see what we consider to be delayed grief for people. They haven’t had time to grieve because they have to focus energy on home-schooling kids, finding a job, keeping a business running, etc.,” she said.
Traumatization can cause post-traumatic stress disorder (PTSD) and anxiety.
“Try healthy anxiety management strategies like breathing, building things in life to offset distress, and self-care,” Rando said.
Magavi advises her clients to name their feelings out loud by describing what they’re feeling emotionally and throughout their body.
“They can make a log of their emotions and identify any triggering factors, which exacerbated their condition, as well as alleviating factors, which helped them feel better. This activity helps us learn more about what we feel, why we feel, and what we can do to combat helplessness and take control during this time of uncertainty,” she said.
For Carlos, anger and self-blame are her biggest emotions to work through.
“I’m angry at leadership for not informing the public about the seriousness of COVID, and at my parents because after their deaths I became aware that they were getting together with friends in their retirement community,” Carlos said.
She’s learned to let go of some of the anger.
“This is bigger than any of us. I get angry when I see people without masks and not social distancing, but we are all human and we all mess up,” she said.
A candle stands among 1,000 crosses at Norwich Cathedral as symbols for the people of Norfolk, England, who have died due to COVID-19. Whether you have a faith or not, the pandemic reminds us of the inevitability of death and what really matters in life, writes columnist Catherine Ford.
By Catherine Ford
There are serious political issues that need addressing, but today nothing is as important as loss.
The turmoil in the United States, the bumbling of the Alberta government, even the seemingly appalling lack of organization and vaccine supply issues facing the Canadian government will have to wait. Reality is more pressing.
Within the past year, two of my oldest friends, women I lived with while at the University of Alberta, have been widowed after marriages that lasted more than 50 years. Such reality smacks me in the face; makes one realize how close and how real death becomes as we grow older. Both Mike Hancock and Ernie Walter were too young to die. And if you are older than 60, you know 80 is too young.
Both men were professionals, both were fathers and grandfathers. But before Ernie became a lawyer and eventually retired as the chief judge of the Alberta provincial court; before Mike earned a PhD and moved back to his home in England, they were young men in their prime, falling in love and marrying young women from southern Alberta. That’s how I choose to remember both of them.
Death has a way of reminding you what really matters. It was 26 years ago — trust me, that’s like yesterday — that we three couples were together in the same place. It was a trip to Italy that is still fresh in my mind, two weeks in a Tuscan farmhouse, two weeks of old friendship, sun and glorious Italian food and wines that never seem to be exported.
Nobody actually wants to think about death. We have a tendency to soft-pedal reality. We talk about “losing” someone, as if he or she was a set of car keys. We talk about someone “passing” as if we were all pedestrians on the same sidewalk. Such talk does no one any favours. We all die. It is inevitable. No bunches of flowers or plush toys left on sidewalks or lawns ease the grief for those left behind.
Sandra Martin argues in her excellent 2017 book, A Good Death, that dying is the final human right, and all of us should have the choice, if possible, to plan our final scene.
But planning takes more than a personal directive; it takes time. Very few of the older generation (that would be me) bother to talk to children about death, with the possible exception of the “nursery” bedtime prayer that starts out positively, “Now I lay me down to sleep,” and ends with the prophetic, “If I should die before I wake/ I pray the Lord my soul to take.” That should be enough to scare even the most optimistic child. I imagine that scores of children have been scared in the past year as deaths from COVID-19 have dominated the news.
Instead, we are lulled into believing that children remain unaffected or, if worried, that they will “grow” out of it.
But the demise of friends and acquaintances is a reminder, as if one needed it, that death, taxes and the increased price of decent scotch are always with us.
The most agonizing aspect of my mother’s final years was not her increasing senility, but the fact that over those few years, her life slowly shrank around her. It was hard to watch, harder still to help with the distribution of her belongings and heart-breaking to see her reduced to a single room in an auxiliary hospital, containing a few pictures, a television set, her favourite chair and a side table.
With each move, she carried with her less and less. Her life shrank from the world to one room. Such is a warning to those who have not yet qualified for an old-age pension: Beware the little life.
Still, if one believes in an afterlife, if one has a faith, then the 16th-century words of John Donne in Holy Sonnet 10 offer ease and hope for those facing the inevitable: “Death be not proud, though some have called thee/ Mighty and dreadful, for thou are not so … One short sleep past, we wake eternally,/ And death shall be no more; Death, thou shalt die.”
In the early days of the pandemic, my days were bookended by stories of death. I woke up each day hours before dawn to work on my book manuscript, happy to have a passion project to soothe my anxious energy. My book chronicles how Vermont patients, caregivers and health care providers navigated medical aid-in-dying, in the aftermath of legalization. In the morning, I combed through my notes, writing feverishly about dying, and in the evening, I absorbed the news of bodies accumulating around the world more quickly than they could be buried.
I have never been more acutely aware of my own mortality. I offered my husband detailed instructions about how to tend to my unfinished manuscript, should the need arise. We joked, with gallows humor, about how my death would make an ironic capstone to the book; he, of course, agreed to pen the afterword for the posthumous publication.
Studying medical aid-in-dying, and now living through the greatest pandemic in 100 years, has forced me to reckon with mortality. Over the five years that I’ve collected stories about death and dying, people have often questioned how I could study such a morbid topic. Isn’t it depressing? The answer is, anything but. Humbling and grounding, yes, and at times terribly sad, but never depressing.
An avid reader since childhood, I have always taken great comfort in stories. When the pandemic began, I realized that immersing myself in stories about death had actually helped me. Thinking about my own inevitable death is sad, but it doesn’t terrify me anymore. At 40, I hope I have a great many years left, but I’m also more or less at peace with my finitude.
Yet last spring, when I picked up Natalie Babbitt’s novel “Tuck Everlasting” to read to my 7-year-old son, I realized it was this bookthat first made me address my mortality, some 30 years ago.
If the concept of mortality was terrifying to me, the idea of immortality was even more so.
Published in 1975, “Tuck Everlasting” takes place in the 19th century, 87 years after the Tuck family unwittingly drinks from a magical spring that renders them immortal. The story is set in motion when a 10-year-old girl, Winnie Foster, accidentally discovers their secret. They bring her to their woodland cottage to persuade her to keep quiet, warning her of the catastrophe that would ensue if news of the spring were to become public.
The novel quickly charmed educators and parents, winning numerous literary awards. While it captivates young readers with its lyrical prose, its matter-of-fact philosophizing on life and death set it apart. In a key scene, Angus, the patriarch of the Tuck family, explains to Winnie that dying is an unavoidable part of the “wheel of life.” The bitter comes with the sweet. It is the difference between having a life and merely being alive. You can’t have living without dying.
The Tucks haunted my childhood. To my 10-year-old self, it seemed clear that the only thing scarier than dying was not dying. How awful it would be to outlive nearly everyone that you love! How bleak it would feel to be resigned to a life of complete social isolation. If the concept of mortality was terrifying to me, the idea of immortality was even more so.
This is precisely what the author had in mind. Babbitt wrote the book to tame the worries of her daughter Lucy, who was then 4-years-old. Babbitt wanted to help Lucy understand that dying was a natural part of the wheel of life, that not dying is much less desirable than it may seem.
Flipping cultural scripts on fears about death: this is the power of stories.
As a non-fiction author, I write for reasons not so different from Babbitt’s. I use real people’s stories to examine cultural fears about death — in my case, about lack of control over dying. Medical aid-in-dying offers what is, for many, a seductive vision of personal control over dying, and the promise of a peaceful, sanitized death. Yet such control often proves illusory, both because access to assisted death is much more complicated than it may seem, and because death, itself, is wily.
People have often questioned how I could study such a morbid topic. Isn’t it depressing? The answer is, anything but.
I think about a woman in her mid-60s I’ll call Candace, who developed metastatic cancer. Once it was clear that she was not going to get better, Candace decided to die on her own terms, with medical assistance. She procured the lethal prescription, which was no easy feat, because many physicians are reluctant to participate in the process. By the time she was ready to die, however, she was no longer able to ingest the medication.
The pandemic has made me even more sure that, like Candace, we are not in control of our destinies. But the Tucks weren’t in control, either. They waited passively, resigned to let the oppressive unfurling of time wash over them. In this sense, immortality’s promise of control over death is also illusory. It is poignant that the Tucks look forward to the day, every 10 years, when their sons return to the family cottage. During the pandemic’s eternal spring, when days bled into weeks and then months, I identified with this feeling, marking my days with UPS deliveries, as time moved ever so slowly.
During the pandemic, I have been in the fortunate position of being able to forestall illness and death with the appropriate precautions, such as staying at home. These measures should permit me to avoid the wrong sort of death. (There is universal agreement at this point that dying from COVID-19 is the wrong sort of death.) But I cannot avoid death altogether, nor (I think) would I want to
Now, 10 months into this crisis, my book is complete. The wheel spins on. The end of the pandemic no longer feels as far off and impossible as it did last spring. And still, I wonder what kind of story I am in. I marvel at that wonder.
If you’re looking for a unique gift for Valentine’s Day, you might consider giving some peace of mind — by deciding and sharing what type care you’d want in a health crisis.
The COVID pandemic has brought new urgency to the need for end-of-life planning. It may seem like an unlikely theme for a song, but the not-for-profit organization Compassion & Choices has put its advice to music to encourage people to prepare advance directives for end-of-life care.
Kim Callinan, the group’s president and chief executive, said she hopes the song will help people find new ways to share messages of empowerment, gratitude and the importance of making plans aligned with their personal values and priorities.
“Valentine’s Day is a time when you show your loved ones that you care about them,” she said, “and one way to show that you care is to give the gift of clarity by documenting and discussing your end-of-life preferences.”
The song, “This Is Your Show,” features Broadway and film star Carmen Ruby Floyd. Callinan said the second verse captures the core message with the words, “You have the option to write your last chapter.”
Brandi Alexander, national director of community engagement at Compassion & Choices, noted that surveys show African-Americans are more likely to choose aggressive treatment to prolong life, but this group also is less likely than others to prepare advance directives, to let people know their wishes for end-of-life care.
“A lot of it has to do with a history of mistrust with the medical community, and really just not wanting to have the discussion,” she said, “and therefore, we don’t talk about it until it’s almost too late or until we’re in a time of crisis.”
Alexander added that when her father died without making his own end-of-life wishes clear, it caused disagreement and tension in her family as they tried to decide what he would have wanted.
Callinan urged people to go through the process of deciding what level of care they want, and then communicating those wishes. The organization’s website has a plan-your-care section that is free to use.
“That has a simple checklist that helps them to learn what priorities are most important to them and how to fill out an advance directive, how to make sure your doctor’s aware of what you want; having conversations with your health care proxy and your loved one,” she said.
She pointed out that end-of-life planning and discussions are about love, and how you or your family want to be cared for.
Braving bitter cold and gusting winds, nearly a dozen people said prayers in their native Dakota language as they watched a bonfire blaze through a deceased man’s clothing, sending a thin trail of smoke drifting over the snow-covered hills on the Lake Traverse Indian Reservation in South Dakota.
The traditional burning of garments represented a final rite of passage for the spirit of Francis Jay Country Jr., a 66-year-old tribal elder and musician whose life was cut short this month by the coronavirus. The bonfire also culminated two days of elaborate ceremonies in which a tribal chief, dressed in an eagle feather headdress, led family members in songs, drumming and prayers facing the four directions.
For Mary White-Country, now a widow, the rituals brought much-needed comfort that her husband’s spirit was no longer suffering and had begun its journey. “Today, I have cried all my tears,” she said after the ceremony. “There is closure because my husband was sent off in a respectful manner, in a way that honored his traditions.”
But the burial customs and ceremonies that many Indigenous communities have cherished for generations are under pressure from an unforeseen enemy — COVID-19.
The coronavirus is killing American Indians at staggeringly high rates, inflicting incalculable trauma and exposing historic gaps in the predominantly white-owned funeral services industry. Only a handful of morticians in the region have specialized training in the diverse Indigenous customs that follow a tribal member’s death and know how to navigate the complex process for arranging burials on reservations. Overwhelmed by an upsurge of bodies, these funeral directors are being forced to turn away many Native families, depriving them of a traditional ceremony and emotional closure.
Nationwide, American Indians are perishing from COVID-19 at nearly twice the rate of white people, but the disparities are even greater across the Upper Midwest. Over 10 months of the pandemic, Native Americans in Minnesota have died at four times the rate of white Minnesotans, and they are being hospitalized at nearly 3.5 times the rate of whites after adjusting for age, according to state Department of Health data.
Few have borne closer witness to this deadly toll in Indian Country than Robert Gill of Buffalo, Minn., a citizen of the Sisseton-Wahpeton Oyate tribe and among the only Native American morticians in the country.
A gentle hero to many tribal members, Gill has made it his life’s mission to restore Native burial customs and to “decolonize,” as he calls it, the process of honoring and burying those who die on Indian reservations. Since the arrival of the coronavirus, death has become an all-encompassing specter of Gill’s daily life, consuming his days and even his nights. He travels hundreds of miles each week to remote tribal communities as far west as the Crow Indian Reservation in Montana and as far north as the Turtle Mountain Indian Reservation near the Canadian border.
Before the pandemic, Gill was being asked to arrange three to four burial ceremonies a month for Native families. Now the 50-year-old mortician is receiving that many funeral requests every week.
Even with a punishing work schedule, he sometimes struggles with guilt over his inability to meet the surging demand for traditional burial services. He knows that many tribal families are being left with no choice but to turn to white-owned funeral homes with morticians who do not understand their language and customs. Without ceremonies rooted in their culture, Gill argues, tribal members are disconnected from their history and unable to mourn properly.
“Where is our humanity?” Gill asked, as he prepared to load a casket into his waiting hearse. “An expression of a life that was lived brings closure for a family. And if they can’t have that, then it’s not dignified.”
“Where is our humanity?” Before the pandemic, Gill arranged three to four burials a month for Native families. Now he is receiving that many funeral requests every week.
A dark legacy
The dearth of funeral options, some tribal leaders argue, is a legacy of America’s dark history of racial subjugation of American Indians and their religious practices. Until 1978, when Congress passed the American Indian Religious Freedom Act, spiritual ceremonies like the sweat lodge and drum dances were still technically illegal. The prohibitions enabled Christian churches to establish deep footholds on reservations and further restrict Indigenous customs — including their ceremonies for honoring the deceased.
“As a kid, they called us ‘devil worshipers,’ and we were taught to be ashamed of our own culture and traditions,” said Chief Arvol Looking Horse, a keeper of the Sacred White Buffalo Calf Pipe and elder of the Cheyenne River Sioux Tribe. “Even our funeral ceremonies were outlawed.”
For Gill, the doors to becoming a professional seemed all but sealed as a child growing up along the wooded shores of Buffalo Lake on the Lake Traverse reservation. Gill suspects that, were it not for his unrelenting mother, he never would have graduated from the reservation’s public high school in Sisseton, S.D., which still calls its sports teams “the Redmen.”
When he was in second grade, Gill’s mother became alarmed when her son kept coming home from school with headaches. Gill, then just 9, told her that white teachers were beating him with rulers and regularly pulling on his ears and hair. His mother, Patricia Gill-Eagle, then learned of another boy who was beaten so badly with a broomstick that welts formed on his back. Fed up, Gill’s mother and 10 other parents removed their children from the local elementary school in Sisseton and opened their own tribal school.
“The public school made my son feel little, like he couldn’t make it in the world,” said Gill-Eagle, a retired nurse who is still active in the tribal school system. “He didn’t learn to be a proud Native until we pulled him out
After attending a nursing program, Gill spent nine years working as an ambulance driver and emergency medical technician (EMT) on the Standing Rock and Cheyenne River reservations in the Dakotas, where he says the poor treatment of deceased Natives became impossible to ignore. It sometimes took hours for a mortician to arrive and remove a body after someone died; and the bodies could be decomposed beyond recognition, he said. The non-Native morticians who arrived at the death scenes would sometimes talk or joke about a recently deceased person as if grieving relatives were “invisible or not in the room,” Gill recalled.
“I witnessed a deep lack of respect,” Gill said. “It opened my eyes and made me realize that we have customs and traditions that allow us to care for the deceased, but we weren’t being allowed to practice them.”
Determined to bring more dignity to the burial process, he enrolled in the Worsham College of Mortuary Science in Chicago, where he graduated in 2012. He is believed to be the only licensed mortician of Dakota heritage in the country.
Long-distance house calls
Today Gill is virtually alone in the funeral business for his willingness to make long-distance house visits — sometimes driving entire days, through sleet and snow, to meet with tribal families in their homes. Each visit carries the risk that he will contract the virus still raging through Indian Country. Gill is the only one of five morticians who work at Chilson Funeral Chapel in central Minnesota who has not been sickened by COVID-19.
“You’ve got to have nerves of steel to do this work in a pandemic,” Gill said.
Beyond the ceremonies, he spends long hours in the embalming room preparing bodies for public viewing. Too often, Gill said, he heard tribal members complain of how their loved ones “looked like clowns” after non-Native morticians failed to recognize their darker skin hues and used bright-colored makeup (purples and reds) meant for white skin, he said. Gill carries a cosmetics kit on the road and often touches up a body before a ceremony.
“Sometimes I ask myself, ‘Why do my people not have their own funeral homes?” he said. “We buried our own for hundreds of years.”
On a frigid day in mid-January, Gill traveled 200 miles through an unforgiving blizzard to a hamlet on the far reaches of the Lake Traverse Reservation to meet with relatives of Ronald Allen Goodsell, a 69-year-old former construction worker who died just days earlier from COVID-19. The evening light was still pouring through the windows of the family’s kitchen when Gill and his broad, 6-foot-3-inch frame appeared in the doorway with a suitcase full of documents.
He was greeted by three generations of Goodsell family members — including siblings, cousins and grandchildren — who came and went through the crowded kitchen as Gill talked them through the traditional burial process. The family had decided to give Goodsell an Indian name, “Tatanka Ob Mani” (Walks with Buffalo), which involved a separate naming ceremony. Then came a long discussion over the limited choice of caskets. Goodsell’s widow wanted a coffin decorated in the Native colors of the four directions (black, red, yellow and white). But such a casket, the family learned, simply did not exist.
The family would have to settle on a generic brown coffin that lacked any exterior symbols of the deceased’s Dakota heritage.
“It’s unfortunate, but there are no Native funeral casket-making companies anywhere in this country,” Gill calmly explained to the Goodsells.
“We’re always having to deal with these ‘wasichu’ (whites) for everything and they just don’t understand us,” responded Nola Ragan, the widow’s sister.
Before departing, the family handed Gill a small collection of Goodsell’s clothes — including a traditional, white-ribbon shirt made by the deceased’s grandson — to dress his body when he returned to Minnesota.
Gill politely thanked the family and stepped out into the clear, star-filled night on the reservation.
On the long return trip to Minnesota, he could smell the faint scent of the man’s clothes next to him on the passenger seat, and he rehearsed what he would say at his ceremony.
Finally arriving home past 10 p.m., Gill had a late supper with his wife, Bonita, and then laid out a suit for the next day’s journey back to the reservation.
On a plane tree-lined shopping street in Berlin’s fashionable Gräfekiez neighbourhood, two children are glued to the front of a brightly lit ground-floor office space, decorated with the understated minimalism of a design agency.
The object of their curiosity is a Lego window display, showing a miniature cemetery and a coffin carried by four tiny pallbearers, complete with black top hats.
“I love this”, says their mother as Birgit Scheffler, the co-owner of funeral home Das Fährhaus (The Ferry House), steps out of building’s front door. “It would be nice if death becomes less of a taboo for my kids’ generation than it was for my own.”
Das Fährhaus’ inviting exterior is a deliberate contrast to traditional funeral parlours, who usually have “blacked out windows or drawn blinds, and maybe a dead fly lying on the window sill”, as Scheffler put it.
Specialising in alternative or bespoke funerals, her undertaker’s business is one of several ventures that are currently brightening up a German way of death that used to be considered one of the gloomiest, most ritualised and rigidly regulated in Europe.
“In postwar Germany, our grief culture was shaped by the legacy of the two wars”, said Scheffler, 43, who used to work in marketing and distribution for a media company before retraining in 2017. “In a culture that was focused on building something new from the ruins, death was pushed aside.”
The psychoanalyst couple Margarete and Alexander Mitscherlich famously diagnosed Germany with an “inability to mourn”, a phrase that was amplified by the 1968 student movement and has since echoed through the country’s postwar history.
Coronavirus, however, is proving a catalyst for a new way of talking about mortality. “Death is suddenly at the centre of our lives”, Scheffler said. “The first thing many of us do when we wake up is look at the number of people who have died in the last 24 hours.”
A national conversation about dying has captured the radio waves and television screens. In My Perfect Funeral, a critically acclaimed new series for radio broadcaster Deutschlandfunk, interviewees describe how they want to be put six feet under.
Netflix’s recent The Last Word, meanwhile, stars German comedy star Anke Engelke as a widow who reinvents herself as a eulogy speaker. “There is no wrong way to mourn”, says Engelke’s voiceover in the concluding episode. “Death is only terrible if you take it seriously.”
Scheffler and her co-owner Sahra Ratgeber opened Das Fährhaus in August, at a time when neighbouring shops were struggling with social distancing requirements and losses incurred during the spring lockdown.
New hygiene rules have also proved a burden for undertakers, limiting the number of people allowed to attend funerals and requiring embalmers to wear additional PPE. Open-casket funerals have been banned; the bodies of those who have died of or with Covid-19 are buried in body bags.
Yet among bereaved families the lockdown has inspired creative new ways to send off the departed. This year, Das Fährhaus has organised a funeral in which mourners were allocated time slots to adorn the grave with painted stones rather than the conventional flowers. At another, family and friends dropped chocolate bars rather than sand onto the coffin of a deceased chocaholic.
Her business offers mourners the opportunity to build their own coffin or work with a ceramicist to make a bespoke urn. “The more elements of the funeral relatives or friends can create themselves, the better.”
Increasingly, she said, people were getting in touch to put down specific instructions for their own funeral in writing: one woman dreamt of being buried in her wedding dress, a composer wanted to make sure some of her works were burned alongside her.
A heightened sense of one’s own perceived uniqueness may be associated with the much-derided “snowflake generation” of the 2010s, but Scheffler said she has noticed a change across all ages. “Even people in their 70s and 80s are becoming more creative.”
Outside the German capital, with its high tolerance threshold for alternative lifestyles, more traditional last rites still prevail, said Louise Brown, who presents the My Perfect Funeral podcast. A Hamburg-based journalist for print and radio, Brown has since 2015 also worked as a Trauerrednerin, a freelance “mourning speaker” for those who don’t want a eulogy to be spoken by the clergy.
While the tradition of such “free speakers” goes back to the free religious movement of the 19th century, other aspects of the typical German funeral remain unusually heavily steeped in tradition. The country is one of the few in the world where coffins or urns must be buried in a cemetery, the so-called Friedhofszwang, and where scattering the ashes of the cremated or dividing them between family members is banned.
“Most Germans still have a small-c conservative attitude to death”, said Brown, 45, a dual British-German citizen. “The organ music at the start of the funeral, the church bells on the walk to the grave: to many people these rituals still matter”.
What was changing, she said, was the bandwidth of what could be said in a eulogy: “People want more personalised speeches, and they no longer want me to skirt around the conflicts and the difficult phases in a person’s life.”
Interviewing family and friends in preparation for her speeches, said Brown, was like leafing through a photo album: “Often the funniest, most honest and authentic pictures are filed loosely near the back pages. The pictures that were taken on the fringes of the official photo session on a holiday, after an award ceremony or a 50th birthday. The pictures no one tried to pose for, the ones we thought were too blurry or out of focus. In a funeral speech, these are often the images that the bereaved most identify with.”
The pandemic has also constrained the jobs of mourning speakers, forbidding not only communal singing but also the customary post-funeral meet-up over coffee, which Brown says can be more important than the funeral itself.
“After the body has been laid to rest, there is usually a moment where the bereaved are both still very vulnerable and very open with each other. The intimacy of these gatherings isn’t something that you can recreate in a Zoom call.”
In times of Covid-19 families are increasingly opting for cremations, in the hope they can postpone the communal get-together until after the pandemic is over (urns, unlike coffins, can be put into storage for up to six weeks): according to Germany’s national association of undertaker’s, cremations now make up 70% of all funerals.
But even before Germany’s severe second wave and the ensuing Christmas lockdown squashed hopes of get-togethers in the near future, many had started looking for alternative new rituals. Graphic artist Anemone Zeim started her “remembrance workshop” Vergiss Mein Nie (Forget Me Never) seven years ago, helping bereaved people to come up with creative projects that conserve memories of their lost ones: films cut together from old Super 8 footage, scarves recycled from a late grandmother’s favourite jumper, or lampshades patterned with a deceased friend’s handwriting.
“You can’t solve your grief with a checklist”, said Zeim. “You need to get creative to find individual solutions. You need to use your hands to stop you getting trapped in your brain. That’s what we help with.”
In recent months, requests for her agency’s services have doubled, with emails flooding in not just from the Hamburg area where her business is based, but from across Germany, Austria and Switzerland.
So-called “grieving tools” sold via Forget Me Never’s website, such as funeral cards, an “anger capsule” for writing down unresolved feelings towards the deceased, or “flower tears” containing bulbs and a clump of soil, have been in high demand.
“We’ve been working flat out”, said Zeim, “not necessarily because more people have died because of coronavirus but because people who have suffered a loss have been shacked up in their own four walls. There are advantages to that too: you don’t have to deal with the social stigma of grieving in public. But the danger is that you can become wrapped up in your sorrow.”
Zeim said she expected demand to keep on rising in the new year. “The process of mourning can take months or years, and not just individuals can mourn, but societies too. We as a society are already grieving for the toll that this pandemic has taken of us. We just haven’t realised yet.”
