During a global pandemic, it may be surprising that more people aren’t talking about death and specifically, their final wishes.
Dr. Lydia Dugdale has been seeing this scenario play out over the past year with some of her patients in New York. Dugdale is a medical ethicist and explores the concept that part of living well is “dying well” in her book, “The Lost Art of Dying: Reviving Forgotten Wisdom.”
People spend their entire lives fighting back against death as part of the human condition. Some doctors may fear death, too, but physicians need to talk with patients about their end of life wishes especially during the pandemic, she says.
When patients come in for annual physicals, Dugdale asks if they want to talk about their end of life wishes — and most people say no.
“However, when we get talking, people realize that this is something important, that dying well is very much wrapped up in living well,” she says. “And in order to die well, we have to make some active decisions now while we’re healthy.”
Many people want someone to open the door to this conversation but don’t know how to start it themselves, she says.
The pandemic has raised concerns about ventilators and dying alone in the hospital. One of the biggest obstacles of this challenging time is providing dying people with community and family despite COVID-19 precautions, she says.
In her book, Dugdale shares some forgotten wisdom from the 14th century bubonic plague outbreak. Historians estimate that the “enormously devastating” outbreak killed as many as two-thirds of Western Europeans, she says.
In the 1300s, people approached the possibility of death in some eerily similar ways compared to today.
Some people decided to live large and indulge in hedonism without fretting over the looming possibility of disease and death. This group is comparable to travelers who faced criticism for going on spring break trips early on in the coronavirus pandemic, she says.
Others didn’t leave their house or engage with their community at all during the plague in hopes of earning “divine retribution,” she says. People didn’t know that bacteria caused the plague, but they understood venturing outside could result in getting sick. During the coronavirus pandemic, some people similarly haven’t left their houses at all or only a few times.
The final group of people tries to strike a balance between living life and recognizing the inevitability of death. These individuals continue to engage with society in a wise, prudent way to protect themselves and others, Dugdale says.
“Whether it is plague or pandemic or famine or war, we all are facing our mortality,” she says. “Death has been and always will be 100%.”
“The Lost Art of Dying: Reviving Forgotten Wisdom” by Lydia Dugdale.
Here & Now host Tonya Mosley’s grandmother always taught her that death is a part of life. Dugdale writes that conversations around death should mirror the birds and the bees chat, but she sees generational differences around talking about death in her patients and family members.
Dugdale’s grandfather returned from fighting in World War II and immediately secured cemetery plots. He made ongoing jokes for years about his relationship with the undertaker and threatened to write people out of his will depending on matters such as getting a tattoo he didn’t like, she says.
“But this idea that we need to, just as a matter of practical import, get ready for death is something that really feels like we’ve lost in the younger generations,” she says.
Everyone has a role to play in talking about living and dying well, she says. One common misconception around talking about death is that the conversation should occur close to the end of someone’s life.
People need to prepare to die well when they’re still healthy, she says. For some people that means fulfilling medical wishes such as do-not-resuscitate orders or planning to die at home. If someone wants to die at home surrounded by loved ones, Dugdale says to question if they’re investing in those relationships now.
Death also brings questions about the meaning of life and what happens afterward. Trying to seek answers on your deathbed is difficult, so Dugdale advocates for taking some cues from the Middle Ages.
“We should do this work now,” she says. “And so even engaging these questions of living and dying well — about what life means in the context of our communities over the course of a lifetime — is the best way to work toward a good death.”
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.
End of life planning involves thinking in advance about your preferences and making decisions about the final months of your life. It can include:
deciding how you’d like to be cared for
thinking about where you’d prefer to die
making it clear if there are any treatments you don’t want to receive
putting your affairs in order by making a will
planning for your funeral.
Once you’ve thought about your wishes, it can help to share them with your close family so they’re aware of your preferences. However these conversations can bring about a range of emotions and starting them in the first place can be a real challenge. Here are some suggestions to help you begin the conversation around end of life planning with your loved ones.
Decide what you want to say
Take a bit of time to think about your wishes and exactly what you want to tell your loved ones. You might want to talk about the type of care you’d like to receive and any treatments you’d prefer not to be given. If you feel comfortable, you may want to let them know your preferences about where you’d like to die. As well as your future care, you may also want to talk about your funeral wishes and what you’d like to happen to your possessions. Make some notes on what you’d like to talk about – think about the things that matter to you most.
Choose the right time to talk
Have the conversation when you know what you’d like to say and, most importantly, when it feels right for you. You may want to let your family member or friend know in advance that you’d like to talk about end of life planning so it doesn’t come as too much of a shock for them when you bring it up.
If you’re not ready to have a face-to-face conversation yet, that’s completely okay too. Perhaps you could try expressing how you feel and the things you’d like to talk about in a letter or recording something on your phone instead.
Find the right setting
Have a think about where you’d feel most comfortable having the conversation. You’ll probably want somewhere that’s quiet and private, and somewhere you won’t be interrupted. That might be at your home or maybe while you’re out for a walk. Choose a place where you’ll feel most relaxed and at ease.
Start the conversation
Starting the conversation can be really difficult. You might want to plan how you’re going to bring up the topic and have some phrases ready in your mind. You might want to open with a question, “Have you thought much about…?” or perhaps a statement, “I know it’s a hard conversation to have, but I’d like to talk about…”. Having these phrases ready can help you feel more comfortable getting the conversation started. Try not to worry about saying the wrong thing; there’s no right or wrong way to deal with difficult conversations; the most important thing is you’ve been brave enough to start it.
Take your time
Don’t feel like you have to cover everything in that one conversation. Spread it out into a few conversations over time. Talking about dying can be emotionally draining both for you and your loved ones, so break the conversations down into small chunks and take your time.
Prepare for different reactions
Everyone will respond to conversations about death differently. Some people will find it easier to talk about than others. Try to be respectful of people’s reactions, keep calm and show you understand. If the person you’re talking to is finding the conversation difficult, then you can always say, “Let’s stop talking about this for now and come back to it another time.”
Talk to your GP
It can be helpful to talk to your GP, or another health professional involved in your care, about end of life planning. They can make you more aware of the options available to you. Let your GP know in advance that this is what you’d like to discuss. You could book a double appointment so the conversation doesn’t feel rushed.
There isn’t a right or wrong way to have a conversation about your end of life care. It’s difficult to talk about dying. It’s not something any of us necessarily want to be reminded about. But it’s important to make your wishes known to those closest to you so they’re aware of your plans and you have some peace of mind.
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.”
Basil Eldadah assumed his father’s funeral would be simple. Years before, Basil’s father had taken steps to make the process easy on the family, purchasing plots and making arrangements. But in 2012, when his father died, Eldadah and his family discovered how complicated and impersonal the American funeral industry could be.
First, Eldadah learned that what his father had purchased was only the plot itself. Digging the grave, installing the concrete grave liner, and filling in the gravesite were not included. But the larger issue was that the cemetery required the use of a vault or burial liner: a concrete box that encases the coffin, keeping dirt from collapsing the casket. Eldadah’s family is Muslim, and it’s customary in Muslim traditions for a body to be placed directly in the soil. He described Muslim burial as “a process that reminds us of the humility of being from dust and returning to dust.” But most American cemeteries require concrete vaults or grave liners to prevent dirt settling at the gravesite—it makes the cemeteries easier to mow and eliminates the spooky depressions overtop graves—despite the fact that it is counter to the religious traditions of Muslims and some Jewish denominations. For Eldadah’s father, the best the family could do was to add some dirt to the inside of the vault.
>Later, as the grief began to lift, Eldadah questioned whether there was a more reverent, natural approach to burial. As an active member of his local Muslim community and as a researcher who studies aging, he knew that his experience wasn’t unique. “My father’s funeral really kind of planted the seed in my mind,” he told me. He eventually learned that there is a name for what he wanted: a green burial ground.
Green burial doesn’t have an official definition but generally refers to a range of cemetery practices that limit fossil fuel usage and the amount of human-made materials put into the ground. More broadly, the green burial movement wants to help people approach death with a more natural, and less commercial, outlook.
Green cemeteries substitute exotic hardwood caskets with renewable wood coffins or burial shrouds, and they don’t line graves with concrete. They shun mown lawns for native grasses and trees. Some green cemeteries mark graves with native stone or plant memorial trees; others don’t mark graves at all. They reject embalming as unnatural, unnecessary, and toxic. (Embalming chemicals contribute to high rates of cancer in mortuary workers.) Green cemeteries look more like nature preserves or parks than the orderly cemeteries we’re accustomed to.
The nonprofit Green Burial Council certifies cemeteries as green—it’s kind of like LEED building certification—and keeps tabs on the environmental impact of conventional burial. It says that each year American burials put more than 4 million gallons of embalming fluid, 20 million board feet of hardwood, 81,000 tons of metal, and 1.6 million tons of concrete into the ground. Cremation, promoted by the death care industry as the greener alternative, uses the equivalent of around 20 gallons of gasoline per cremation and vaporizes heavy metals (from dental fillings and surgical implants) into the atmosphere. While cremation conserves physical space, green burial conserves energy.
Burial wasn’t always so complicated. Embalming only gained traction among wealthy Americans during the Civil War, which essentially started the modern funeral industry. (Abraham Lincoln was embalmed for his funeral train, and reembalmed at many stops, but onlookers thought he looked nasty.) Concrete grave liners came later, allowing for today’s flat, uniform suburban cemeteries.
Generally speaking, laws governing burial are complicated and vague. In most states you can bury a loved one on your own property, but local zoning ordinances often contradict the state laws. While no states legally require embalming or grave liners, the funeral industry has made them so standard that in some places, they’re essentially requirements. Neither practice has any public health benefit, but embalming stretches the possible time between death and funeral. Embalming is popular only in the U.S. and Canada; in the rest of the world, it’s actually quite rare. Funeral homes have normalized embalming because it saves on refrigerator space and because they can sell larger funeral packages.
After his father’s funeral, Eldadah let his idea percolate until he found the right partner, one who’d also been surprised by the cost of a funeral. In 2019, Eldadah’s friend Haroon Mokhtarzada, a successful tech entrepreneur, received a call asking him to help fund the burial of a local community member. He was glad to help, but the cost rattled him.
“I was thinking it was going to be a couple hundred bucks and it was several thousand dollars,” he said. “And I came to learn that the average burial in Maryland is $10,500.” The national average, according to the National Funeral Directors Association, is about $9,000. (This chart shows how complicated itemized funeral expenses can be.) Mokhtarzada said, of the funeral’s cost, “There’s something that bothered me about that to my core.”
He asked, “Why does a hole in the ground cost $10,000?” The same use of embalming fluid, concrete, and hardwood that make death so polluting also make it expensive. According to the Bureau of Labor Statistics, funeral costs jumped 225 percent since 1986; GoFundMe hosted 125,000 memorial campaigns in 2020. Funeral poverty is an underreported crisis in America.
Eldadah had contacted Mokhtarzada previously about the project, but he was too busy to get involved. Seven years later, backed with his money and startup expertise, Mokhtarzada emailed Eldadah and said, “We’re going to make this thing happen.” Together, they set to work making metro D.C.’s first nonprofit green cemetery. If it works, it will be the most urban green cemetery in the U.S.
There are 82 cemeteries in America certified as green by the Green Burial Council (you can read about the certification standards here), but the movement has struggled to take hold near major cities due to the price of land. Pete McQuillin, who operates Penn Forest Natural Burial Ground near Pittsburgh, told me that it took him three years to find a property close to the city. In the nine years since Penn Forest opened, it has interred only 205 bodies. (Because people usually want to be buried next to their deceased loved ones, cemeteries are notoriously tough to get started.) But the number of burials is growing steadily every year, as does the execution of Penn Forest’s broader mission: It strives to be a multiuse park, hosting guided nature hikes, community roundtables on death, and a DIY coffin-making class.
Mokhtarzada and Eldadah have similar goals for their site, a woody, 40-acre plot in Silver Spring, Maryland, tucked between a concrete factory and a church. (The price? Almost $2 million.) When I first talked to them in July, they were excited to explain the project’s overarching goals. “We’ve started to envision a community-gathering place,” Mokhtarzada said. “Not just a creepy place where you only go to pay your respects and then you leave. But some place where people would want to spend quality time … a space where not only do the living serve the dead by providing simple, natural, and dignified burials, but also where the dead can fuel life.”
By December, they were feeling the weight of bureaucracy. In between fielding questions from their new neighbors about water quality and funeral traffic, the two men had poured $200,000 into the project before breaking ground. There were nonprofit lawyers, land-use lawyers, engineers, architects, permitting fees. And they were still struggling to come up with a name. Like burial, starting a cemetery was more complicated than anticipated.
While Mokhtarzada’s startup experience was helpful, he learned that the cemetery business is unique. “In a startup mode,” he said, “you just figure out as much as you need to figure out, you don’t figure out what this thing’s going to be in five and 10 years. But what I’ve found that was different in this creative process is we had to think decades into the future. We had to think in three dimensions in decades.”
To help with that part, Eldadah and Mokhtarzada hired architect Jack Goodnoe, who has designed some of America’s best-known green burial grounds. Goodnoe started designing conventional cemeteries in the 1980s and began working with green cemetery movement when the movement began in the late ’90s. While Goodnoe supports greening the death industry, he also thinks that green and conventional cemeteries need to learn from each other. The green burial movement has been led by charismatic industry outsiders—academics, environmentalists, spiritual types—with big ideas offset by a lack of knowledge about cemetery management. Goodnoe recommends that “when someone wants to start a green cemetery, they partner with a traditional cemetery that can bring all the legal, grief, record-keeping elements that they’ve learned from decades in the industry.”
Eldadah and Mokhtarzada don’t plan to work with a traditional cemetery, but they have implemented some conventional cemetery practices at Goodnoe’s recommendation. For example, some green cemeteries let people choose their own burial site anywhere on the property, which Goodnoe worries could lead to record-keeping issues for future cemetery managers. At their site, Eldadah and Mokhtarzada have taken Goodnoe’s advice of burying in one area at a time and evenly spacing gravesites like a conventional cemetery might.
They hope to open for burials in 2021 and have already generated some interest among the local Muslim community. But in order to fulfill their inclusive mission, Eldadah and Mokhtarzada will have to expand beyond green burial’s usual demographic. Hannah Rumble, an anthropologist who studies burial in the U.K., told me that green burial has been “quite a middle-class aesthetic and cultural practice,” and hasn’t yet become popular among the working-class people who could most benefit from lower burial prices (often less than half the price of conventional burial) and less upkeep responsibility. But traditions change slowly, she says, and as the last rite of passage, burial traditions are usually some of the last to change.
On a more spiritual level, Rumble has observed the way that green burial has influenced the grieving process of people she’s interviewed. She says, “The bereaved like to go over time to watch the trees grow, to watch the site developed to maturity, to watch the plants bed in. It’s interesting how their own emotional journey with grief has changed and how they see it reflected in the development of the natural burial ground. … And so now their visits are more about just going and enjoying the bird songs, seeing how the site’s developed, seeing what initiatives are going on. It becomes a kind of community, a community of practice.”
This sentiment is ultimately how the green burial movement overlaps their ecological and spiritual goals. Conventional cemeteries, with their permanent headstones and concrete grave liners, encourage us to think that even in death, we’ll last forever. What natural burial offers is the reminder that death and grief are like all natural processes: They change and evolve, grow and decay. Like Rumble says, “I think what’s really powerful about that ecological metaphor is it’s fairly timeless. And it’s one that, irrespective of your faith, people can relate to.”
Dying in the home can lead to greater satisfaction of end-of-life care, according to research.
Patients’ preferences around death should be respected when discussing palliative care options.
Dying in the home can not only benefit patients and their families, but can also reduce healthcare costs.
Older adults who die in their home are more satisfied with their end-of-life care than those who die in hospital settings, a new study has found.1
Researchers out of Johns Hopkins University analyzed data from the National Health and Aging Trends Study (NHATS) of Medicare beneficiaries with and without cognitive impairment who died at 65 or older to see if place of death affected their satisfaction of end-of-life care. The team found that the most common place of death for seniors with cognitive impairment was in the home. People without cognitive impairment were equally as likely to die at home or in the hospital.
Based on the seniors’ “last month of life” interviews, researchers found that participants were more satisfied with the end-of-life care they received when they died at home.
“Many people ‘bond’ with their home, which is known as place attachment,” Natalie G. Regier, PhD, an assistant professor at Johns Hopkins University School of Nursing and the study’s lead author, tells Verywell.
“Human beings, even ones who live alone, can actually experience a reciprocal emotional relationship with a place, meaning there is interaction with and investment in that environment.”
Why Dying at Home Can Lead to Improved End-of-Life Care
While Regier’s study was a secondary data analysis—meaning she was unable to do a deep dive into specific reasons behind satisfaction ratings—she says there are some hypotheses as to why people reported higher satisfaction ratings when they receive care at home.
Based on her own research and many other studies, people experience a comfort in being in their own home, “particularly during vulnerable and uncertain time periods such as coping with an illness.” For people with moderate to severe dementia or cognitive impairment, hospitalizations can be traumatic, she explains.
“The unfamiliar and often chaotic hospital environment can lead to anxiety, confusion, and disorientation for this population, and is associated with poorer end-of-life outcomes,” Regier says. “Furthermore, hospitals are usually not tailored for meeting the needs of people with dementia.”
Even for people without cognitive impairment, there are various reasons why palliative patients prefer to die at home, says Susan Enguídanos, PhD, an associate professor of gerontology at the University of Southern California. Enguidanos has researched home-based palliative care and has found that patients who receive in-home treatment report greater satisfaction with care than hospital patients.
She says while higher satisfaction rates may not specifically be tied to dying itself, it likely has to do with the type of health care they receive in the home, including nurses, social workers, doctors and chaplains. It’s also often preferable to be surrounded by family in the home rather than a more sterile environment, like a hospital, that lacks the same privacy and comfort.
Enguídanos points to a study that shows cancer patients who died at home had less physical and emotional distress and better quality of life at end of life compared with those dying in the hospital. The study also found that ICU or hospital deaths were associated with an increased risk of mental health distress for caregivers.2
Reduced Cost of Care
Aside from the emotional and mental benefit, people who received home care were less likely to visit the emergency department, resulting in lower costs to the health care system, according to one of Enguidanos’ studies.3
“Our hypothesis is that because they received more and regular care in the home, plus their caregivers received training in how to manage their symptoms [and] they had access to a nurse (and doctor if needed) 24/7, they had improved management and therefore had less need for emergency room visits and subsequent hospitalizations,” Enguidanos tells Verywell.
Need for Patient Planning Around End-of-Life Care
Based on research, it’s clear that patients’ preferences and feelings around end-of-life care can have a significant impact on the quality of their last days. Regier and her colleagues’ findings indicate that discussions of end-of-life care planning can help inform palliative policy and “facilitate greater well‐being at end‐of‐life.”
For patients with dementia, Regier says these end-of-life care conversations should happen as soon as possible. Preferably prior to the onset of dementia, or before dementia or other illnesses have progressed to more advanced stages.
“Conversations about goals of care help to guide the treatment approach, keep the lines of communication open, and make sure everyone is on the same page regarding what constitutes optimum care for the patient,” Regier explains.
What This Means For You
Patients should be involved in their end-of-life care planning, as research shows preference around care can have a significant impact on their well-being.
Enguidanos echoes this stance, and says that given the evidence of improved patient outcomes for home-based palliative care and lower medical costs, it makes sense to support this model of care should a patient desire it.
“I do believe we need to transform our payment structures to better support this type of care,” Enguidanos says. “Currently, there is no widespread payment structure to support home-based palliative care; in other words, Medicare does not pay for this care.”
>Regier says end-of-life planning needs to include more than just medical information or certain aspects of advance care planning, like preference for life-sustaining measures. This is because “patient preference for the actual place of death is often overlooked.”
This is especially true for seniors with cognitive impairment, she says.
“Research shows that very few people with dementia who are at end-of-life are treated with palliative care, despite the many benefits of this approach (e.g., decreased behavioral symptoms, decreased pain),” Regier says.
“There needs to be greater awareness among providers and families that a palliative and hospice care are wholly appropriate and beneficial for people living with dementia and not just the cognitively healthy.”
