Tag: Conscious Dying

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Changing the National Conversation around Death

School of Public Health symposium explores how we approach dying so we can live richer lives

SPH symposium panelist George Annas, a William Fairfield Warren Distinguished Professor, suggested that that people should consider prioritizing quality of life over quantity of years lived.

By Jillian McKoy

From anti-aging beauty regimens to strict diets and medical screenings, Western culture places immense value on the quality and preservation of life. Death, however, is a subject largely absent from daily conversation, and when raised, it evokes fear and anxiety.

But talking about death—and the policies and attitudes that shape it—is a healthy practice, speakers at the School of Public Health Dean’s Symposium Death and Dying: A Population Health Perspective concluded Tuesday. More than 150 people attended the daylong event, which gathered authors, scholars, professors, physicians, storytellers, and public health experts for a frank conversation about an inevitable part of being human.

“The data is clear that 100 percent of us will die,” Sandro Galea, Robert A. Knox Professor and dean of the SPH, said at the start of the program, to the amusement of the audience. “And that’s okay,” he continued. “Our goal should be to think about how we approach death and dying at the population level, so we can live the healthiest, fullest, richest lives we can until such time.”

The notion of a good death—what it constitutes and if it even exists—was a central component of the day’s conversation.

“Death and dying is an issue that is characterized by a great disconnect between the universal experience we all share witnessing the deaths of our loved ones and a reluctance to discuss honestly and publicly the policies and attitudes that have gotten in the way of ensuring the good deaths that we all no doubt seek,” said Jon Sawyer, executive director of the Pulitzer Center, which cohosted the symposium, along with BU’s College of Communication, College of Arts & Sciences Center for the Humanities, and Program for Global Health Storytelling.

Sallie Tisdale, a nurse at Providence ElderPlace, pushed back against the concept of a good death. She said the National Academy of Sciences, Engineering, and Medicine definition of a good death—one that is “free from avoidable pain and suffering and in general accord with patients’ and families’ wishes”—is a fantasy.

“Death is a solitary experience,” Tisdale said. “How can we as a group decide what avoidable distress and suffering is? Only the person in the deathbed knows what that means.” Instead, there is such a thing as a “mastered death,” she said, where people are able to “express themselves as long as possible.”

Many of the speakers’ analyses were informed by personal experience. Michael Hebb, author and founder of the Death Over Dinner movement, described how his initiative was born from a communication breakdown within his family after the death of his father. Hebb was 13, and his family members, unable to talk about the devastating loss, ate meals alone and mourned in silence.

But repression creates the perfect environment for disease, he said, while talking about death “makes you funnier, improves intimate relationships, and increases your capacity to love.”

Death and Dying: A Population Health Perspective panelists Barbara Moran (COM’96), WBUR senior producing editor (from left); George Annas, a BU William Fairfield Warren Distinguished Professor; Tracy A. Balboni, Harvard Medical School; author and physician Samuel Harrington; journalist Christopher de Bellaigue; and Amy Appleford, a CAS associate professor of English.

Jamila Michener, a Cornell University assistant professor of government, recounted how her mother’s battle with stage 3 pancreatic cancer was initially misdiagnosed as acid reflux years prior by doctors in her low-income Queens neighborhood. The cancer wasn’t discovered until she saw a doctor in a predominantly white neighborhood in Ithaca. (Michener’s mother survived the cancer and is still living.)

“My brother jokes that she lived because she fled where black people were,” Michener said. “The experience of dying wasn’t something she wanted to do in her own neighborhood.”

Other speakers explored ways that people can exercise some control over their own dying.

“Spirituality is a primary strategy for integrating death into the human identity,” said Tracy Balboni, a Harvard Medical School associate professor of radiation oncology. Citing oncology studies conducted at four academic centers in Boston, Balboni explained that 78 percent of participating cancer patients said that religion was an important factor in dealing with their illness and that it provided coping skills and a way to understand their illness and their life.

“We need a creative reintegration of spirituality into medicine in order to care for dying patients well,” she said.

Another speaker, journalist Christopher de Bellaigue, discussed the practice of physician-assisted death in the Netherlands, dubbed the “euthanasia capital of the world.” The practice is now widely supported therecafter it was legalized in 2002 for patients experiencing “unbearable suffering with no prospect of improvement.”

De Ballaigue noted that the majority of the Dutch population opposed euthanasia when it was first enacted into law: “What interests me is where legislation leads to a change in dynamic in character and narrative, or the other way around. Public attitudes follow legislation.”

George Annas, a William Fairfield Warren Distinguished Professor and an SPH professor of health law, ethics, and human rights, challenged the American cultural approach that humans have to do everything they can to live as long as possible.

“Avoiding death is the goal of modern medicine,” said Annas, director of the Center for Health Law, Ethics & Human Rights, arguing that people should instead consider prioritizing quality of life over quantity of years lived. He suggested that it would be valuable to shift a portion of research funding into “things that make life worth living, such as decent housing and public transportation.

“There is such a thing as dying healthy, and it can be a worthy public health goal,” Annas noted.

Author Barbara Ehrenreich (Nickel and Dimed: On (Not) Getting By in America and Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer) was scheduled to be a panelist, but was unable to attend. Sharon Begley, senior science writer at the Boston Globe publication STAT, a morning session moderator, read a portion of Ehrenreich’s prepared statement to the audience: “I’m 77 years old and I love cheeseburgers and Popeye’s Fried Chicken. I exercise when I feel like it, and I refuse to submit to medical tests and screenings recommended to all people over 50.”

This approach to her health, she explained, makes her an “outlier in our culture…where death is seen as some kind of failure.”

Panelists also discussed dealing with grief after a loved one dies, and the lack of resources available to properly treat mourning family members and friends. Katherine Keyes, a Columbia University Mailman School of Public Health associate professor of epidemiology and codirector of its Psychiatric Epidemiology Training Program, detailed how unexpected loss can lead to symptoms such as depression and to post-traumatic stress disorder.

“There’s something very specific to the loss experience itself,” said Keyes, who lost her ex-husband to suicide. “Losing someone close to us is very destabilizing.”

Afternoon session moderator Diane Gray, Acclivity Health Solutions chief innovation and advocacy officer and a board member of the Elisabeth Kübler-Ross Foundation, urged the audience to “become more engaged in the community of healing, empathetic, compassionate, caring individuals.

“There is no reason in our country for us to continue the legacy of shame and stigma that surrounds grief,” Gray said.

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The animal lover giving a peaceful end of life to terminally ill creatures

– while defying death herself

 


 
Alexis Flemming has dedicated herself to giving terminally ill animals the best last days of their lives – despite recently almost dying herself.

The animal lover, who lives with autoimmune diseases, was recently given only a few days to live before an operation helped control her condition.

Now recovering, she is back giving care to the variety of animals she has taken in at her animal hospice and sanctuary in Scotland.

She was inspired to set up the Maggie Flemming Animal Hospice in 2016 after her beloved bullmastiff Maggie died suddenly at the vets.

Alexis’s beloved bullmastiff Maggie died while away from her at the vets in 2016.

“Not being able to be with someone you love when they die can be quite traumatic,” she says.

As she walks through the sanctuary to the hospice, she knows every pig, sheep and chicken by name.

She wants all the animals to have a dignified end.

“They come here to spend however long they have left, a few days, a few weeks – sometimes even a few years – and I do end-of-life care to give them peace, comfort and friendship,” she says.

Alexis works hard to see which activities the animals enjoy most.

At the hospice, situated just outside Kirkcudbright in Dumfries and Galloway, Alexis makes a point of discovering what the animals like.

For some it’s sweets and reading. For her 19-year-old pal Bran, it’s adventures in the car.

“Bran was dumped on the street when he was about 17, he had a tumour on his spleen. Bran came to us with just six weeks to live and that was two and a half years ago,” she explains.

Bran is still going strong at 19, defying the terminal prediction of vets two years ago.

Bran is still going strong but Alexis admits her own health problems have made it harder to keep up with the care demands.

“It’s very hard to deal with that much grief. There was a time last year when I did 10 end-of-life cares in one month, that really took its toll. I was really ill at the end of that because my health isn’t very good anyway,” she says.

Inevitably her own recent doomed diagnosis – while thankfully avoided – has made her re-evaluate her life and work.

Bran enjoys a new lease of life, after being taken in by Alexis, that involves adventures out in the car.

“I almost died twice. Even if you think you’re the most life-grabbing, go-getting person, when you’re told you’ve only got a few days left and you survive that, every day is just… you make the most of it,” she says.

On dealing with the mortality of her farmyard friends, she says: “I know how I felt thinking it was almost my end and I know it’s almost their end so let’s just make the most of it, let’s not hang around and think of the sadness.”

She is now developing what is the first purpose-built animal hospice in the UK. She believes it could be one of the first of its kind in the world.

“We try to never turn anyone away if we can help it, but it’s very important to do end-of-life care properly, so we have very small numbers [and] we only do end-of-life for three animals at any time,” she says.

The passionate animals rights advocate believes “most animals in our society are denied a peaceful life and death”.

But she says she remains focused on helping the animals living out their final days in her care.

“Doing this kind of work you realise anything can happen at anytime and it could be today, it could be tomorrow, it could be a month from now, I just don’t know,” she says. “I try not to dwell on it too much.”

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How can we deal with death better?

From DIY funeral services to death doulas, B.C. is on the leading edge of a trend that wants to make death a part of life, and a better experience for everyone. Meet the women leading the trend.

 

By Denise Ryan

There may be no table more full of life than the corner booth at Paul’s Omelettery on Granville Street, where a group of women are talking over breakfast about death.

Three of the women are licensed funeral directors, two specialize in end-of-life planning, one is a celebrant, another an apprentice death doula — someone who assists families before and after death, the way a midwife does with a birth.

They call themselves the D’Posse.

The name is a playful nod to the word “death,” but their aim is thoughtful and resolute: to transform the way we commemorate and bury our dead, to bring death back to life.

Glenn Hodges, manager of Vancouver’s Mountain View Cemetery, has dubbed them “the disruptors” — part of what he says is a growing number of end-of-life workers, many of them women, who are quietly, respectfully, and often joyfully, working to take death out of the hands of the corporate monopolies, and give it back to families.

Although many funeral homes in B.C. still bear the names of the families that originally established them, many of these are owned by Service Corporation International, a conglomerate headquartered in Texas. SCI owns 45 funeral homes in B.C., about a third of the funeral service providers in the province. (SCI, which trades on the New York Stock Exchange, has repeatedly tangled with consumer advocates over everything from its pricing to sales techniques.)

Funeral director Ngaio Davis spent 20 years working for a number of providers in the corporate funeral industry before breaking away to start Koru Cremation, Burial and Ceremony (korucremation.com), which she runs out of a cheerful space on Kent Avenue in Vancouver.

Like the other women at this monthly breakfast, Davis says she was drawn to the funeral industry because she wanted meaningful work. “I wanted to do something that felt worthwhile,” says Davis.

Coming face to face with death never made Davis uneasy — but the funeral industry did.

“There are a lot of wonderful, compassionate people in the corporate funeral homes,” says Davis. What bothered her, she says, was the focus on profit: “What’s the bottom line?”

Davis says one funeral home she worked for stipulated that commissioned sales staff be in every meeting with grief-stricken clients to have the “face time” to push extras. At another job interview, she was grilled on what her average sales “per call” were — this was not the work she wanted to be doing.

Lisa Hartley is a ‘celebrant’ who officiates at weddings as well as funerals.

‘What can I help you do?’

Despite decades of scrutiny, the North American funeral industry has changed little since Jessica Mitford’s 1963 expose, The American Way of Death, in which she called the funeral industry a “huge, macabre, and expensive practical joke on the American public.”

A big part of that macabre joke is the cost.

The average traditional funeral in Canada costs $10,000, according to Stephen Garrett of the Memorial Society of B.C., and GoFundMe counts funerals among its fastest-growing fundraising categories.

“From a basic cremation at about $1,200, costs range up to $15,000 or $20,000 — which is fine if it’s in line with your budget. But that’s where we get into problems with funeral homes pushing that on people,” said Garrett.

In addition to basics, such as registration of death, transportation, sheltering and disposition of the remains, costs — and funeral home profits — skyrocket once the bells and whistles are added: the expensive casket, which may be incinerated days later, embalming (not a legal necessity in B.C.), makeup, hairdressing, flowers, grief counselling, memorial, and follow-up house calls to sell products, such as future burial services, to survivors.

Five years ago, Davis decided to do something different.

Davis says her approach to death is informed by her Maori heritage. “Maori practices around death and dying are very strong. You are with your dead. You don’t just let them be taken away and be controlled by others. The family is the one who is crafting and planning what happens, and what will be the final ceremony.”

At Koru, the reception room is simply decorated with none of the trappings of a traditional funeral home: no sombre music, heavy curtains, or staff in dark suits.

Clients can plan as elaborate or as simple a funeral, ceremony and cremation or burial as they wish. Koru also specializes in green burials — biodegradable casket or a simple shroud, and no embalming — and will facilitate DIY, family-led or “home funerals.”

“This week, I’m looking after a family that wants to take their father and husband back home to his condo in North Vancouver. They want to have him there, they want to give him a sponge bath, dress him, and let him spend his last night there with his wife,” Davis explains.

Davis will transport the man and bring a special table so he can be laid out in his own home. “We will move him onto the table so it’s more comfortable for them to bathe him and dress him,” said Davis.

The next day, Davis will return with the casket, which will be placed in the condo’s common room because it won’t fit in the elevator.

“They are lining the casket with sheep wool that one of the kids brought from Scotland, and then we will go to the cemetery,” said Davis.

“His wife knows what she wants. They’ve been married for 60-plus years — they want those last moments together.”

At Paul’s Omelettery, over the warm clatter of breakfast dishes, cups and spoons, Lisa Hartley, a celebrant who officiates at weddings as well as funerals, recalls meeting Davis when her father-in-law died unexpectedly in his West End apartment.

His death had come quickly and the family was unprepared.

“We didn’t know what to do. Someone said, ‘Call Ngaio,’” says Hartley. “Her first question to us was, ‘What can I help you do?’”

They didn’t have to go to a funeral home, something Hartley was uncomfortable with.

“Ngaio came over to the apartment, and sat on the sunny balcony with her checklist, and we went through all the options.”

The family chose to keep Hartley’s father-in-law at home for a short period, and her husband decided he wanted to participate in the washing of his father’s body. “I never expected him to do something like that,” says Hartley. “But it really helped him.”

While the family gathered in the apartment, Davis completed the preparations.

“When she had him ready, she wrapped his body in a beautiful red velvet cloth, but she came to us first and said, ‘Peter is ready to go now.’”

Hartley was deeply moved by the experience, and now works closely with Davis and other alternative providers as a funeral celebrant. “My special interest is in sustainability in death care,” says Hartley. That means being more hands-on, in DIY and home funerals.

Hartley’s ceremony design process includes in-depth meetings with the client and family and friends to talk about the person. “It’s quite beautiful, and it’s often the start of the healing process. People get to tell stories about the person that has died. I recently had one person who said, ‘I feel better already,’” says Hartley.

Jennifer Mallmes is a death doula who founded the End-of-Life Doula program at Douglas College.

When death is expected, a death doula can help the family prepare for what Jennifer Mallmes, founder of the End-of-Life Doula program at Douglas College, calls “a gold-star death.”

“Planning really does help with the death and bereavement process, even when people don’t want to die,” said Mallmes. “Barring sudden or unexpected deaths, you can have some choice in how you go. Who do you want around? Who do you not want around?”

A death doula will help individuals and families faced with an illness or a diagnosis that a death is coming plan home care or hospice care, work with funeral services. They can also help with making what life is left fulfilling: “We can help with a life review, ask what are the things I still want to do? We might look at services to help them accomplish those things.”

Death isn’t just a business, it’s a way of life

Garrett said that although the funeral business is slow to change, Baby Boomers are pushing the trend toward the “reclamation” of death and dying.

“The Boomers demographic changed the world they lived in — they questioned authority, lived through the Summer of Love, built the environmental movement,” says Garrett. “We’re on our way out, and that’s going to change things, if only because of the large numbers.”

About 34,000 to 35,000 people a year die in B.C. “That death rate in the next 10 to 12 years is going to head north of 45,000,” says Garrett. “We’ve got 916,000 Baby Boomers living in British Columbia with only one way off the planet.”

Glen Hodges is the manager at Mountain View Cemetery in Vancouver.

Although Statistics Canada doesn’t keep numbers on the kinds of funerals people hold, Glen Hodges says he has seen changes in people’s attitude toward death. Part of that has been the renaissance of the city’s only cemetery.

Mountain View shut down briefly after running out of grave space in 1986, but a new master plan created more space. Mountain View built columbaria (condos for cremains) to house niches for cremated remains, and reclaimed unused graves from families — a complex and provincially regulated process that applied to plots purchased at least 50 years ago and never used by family members in that time.

Hodges says the city has also been working to re-establish the cemetery as a place for the living.

“A cemetery is not just a utilitarian place for disposal of the dead and keeping of public records,” said Hodges. “(It is also) a sacred place to remember and commemorate, and it has a larger role within the community.”

That includes family oriented community events, such as its annual All Souls Night, which draws up to 2,000 people.

“We invite people to wander into the cemetery to light candles and leave mementos for their loved ones and be in a contemplative atmosphere filled with candles and music and in a place that is safe for them to speak of the dead and talk with others.”

Mountain View doesn’t require grave liners, so green burials are possible, as well as reburials, an option that allows families to open the grave and reposition any remains still there so a new casket can be added.

Hodges regularly hosts free workshops hosted by D’Posse members Reena Lazar and Michelle Pante of Willow EOL (end of life).

The workshops, says Pante, are designed to help people figure out how embracing their mortality can change the way they live. “Our lives are limited, they are precious and finite, so we ask how does that fact affect how we live?” said Lazar.

The workshops help people explore their thoughts and feelings about death and guide them through the process of creating what Pante calls “heart wills,” or love letters for the family and friends who will survive them.

Their clientele ranges through all age groups, says Pante, although many are healthy and in the Boomer demographic.

Boomers may be fuelling the trend toward a more compassionate, affordable, personalized experience after their final exits, but for Davis and her growing network, death isn’t just a business — it’s a way of life.

Many find their way to Koru after a negative experience elsewhere, says Davis — whether it was sales pressure that shamed them into overspending, a service that didn’t reflect their loved one’s personality, or a makeup job that made them look like a stranger.

“Here was this very important moment in their lives, and they were robbed of it. It could be a special time, or it could be something you never want to go through again. So I’m just doing my little bit to change that.”

Stephen Garrett, seen here at Mountain View Cemetery in Vancouver, is the executive-director of the Memorial Society of British Columbia.

The Planner

Stephen Garrett, executive director of the Memorial Society of B.C., a non-profit society serving 240,000 members, believes that much of the expense and discomfort families inherit when a loved one dies can be avoided with good planning. To help people making final arrangements, Garrett has designed the “All Ready To Go Binder” to help with the death planning process.

“When my sons were 21 and 23, I invited them over for beer and pizza. I had the death binder in the middle of the table,” said Garrett. “They were a bit shocked — they didn’t want to think about me being dead and I didn’t want to think about it either — but as a responsible parent, this was my gift to them.”

The mood changed as he went through his wishes and let them know that he would be throwing in a family holiday: an all-expenses-paid trip to India, where he wants his ashes to be sprinkled in the Ganges River. Making a plan that’s personal, that includes opportunity for meaning, is part of what can make the process fun, said Garrett.

The binder is available on the society’s website for a nominal fee, and Garrett would like to see every family in B.C. have one.

The All Ready to Go Binder is a place for everything from your last will and testament, to advanced care directives, funeral arrangement forms, and other details such as people to call, copies of personal identification, and celebration-of-life plans.

The purpose of the Memorial Society is to help families prepare for and plan affordable services by partnering with ethical providers. The Memorial Society of B.C. offers lifetime membership for a one-time $50 fee. Members receive discounted prices of 15 to 30 per cent with participating funeral providers and access to support, advocacy and planning.

By The Numbers

$7,181: Average Cost of a traditional funeral (includes viewing, burial, embalming, transport of body)

28.6%: Percentage increase in average traditional funeral costs between 2004-2014

87%: Percentage increase in average traditional funeral costs between 1980-1989

90%: Cremation rate in B.C., up from 60% in 1986

Source: B.C. Memorial Society

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Rethinking the landscape of death

Natural burial is challenging cemetery design and our increasingly toxic death management practices, while also finding potential for new expressions of thoughtfulness and beauty along the way.

Toxic cemeteries are contributing to early deaths but examining the history of burial practices can teach us to live better.

By Foreground

In the 19th century, new cemeteries were designed for more than the dignified internment of departed loved ones. The landscape or garden cemetery provided much needed green open space for increasingly crowded cities. Cemeteries were the first public parks, where people came to picnic, relax and court. The pressure of today’s growing and diversifying populations and expanding cities are, again, challenging cemetery design, as well as burial practices. But as well as century-old  concerns regarding space and the potential health risks of living close to overcrowded urban burial grounds, a new raft of threats are emerging. Modern burial practices have evolved to become highly toxic contributors to landscape contamination.

Jerusalem’s ancient Mount of Olives cemetery buries texts and objects which cannot be destroyed.

The world is increasingly concerned with environmental degradation, yet funeral practices have been largely overlooked until recently. In the mid-1990s, the National Centre for Groundwater Research and Training at the University of Technology, Sydney, examined nine cemeteries and crematoria around Australia. It found the biggest problem with these facilities was the potential for contamination from infiltrating stormwater carrying toxins from caskets and bodies to the underlying water table. But it took another decade for significant wide-ranging studies to emerge. The UK’s Environment Agency 2004 report into potential groundwater pollutants from cemeteries considers many factors leading to soil and groundwater contamination from human burial, including the organic and inorganic matter of bodies, coffins and other non-body grave contents.

Cemeteries are among the most toxic of modern landscapes in both their immediate and ongoing environmental impacts and intensive use of resources. The 2014 documentary A Will for the Woods outlines the problem of a typical American-style funeral, citing the toxic, resource-intensive materials of caskets that have become common in much of the world. “In the U.S. alone, approximately 33 million board feet of mostly virgin wood, 60,000 tons of steel, 1.6 million tons of reinforced concrete, and five million gallons of toxic embalming fluid are put into the ground every year.” They note further the large tracts of land and high maintenance of constant mowing, watering, and the application of chemicals.

Cremation is mistakenly thought to be more green. It actually releases considerable particulate pollution, CO2 (approximately 50 kilograms per cremation, on average), and toxins such as dioxins, furans, and mercury into the atmosphere.

Then there are a host of more modern elements such as mercury from dental fillings, pacemakers, esophageal tubes and other body implants which leach into groundwater once the body has decayed. Another significant pollutant emerged as people began to be buried with their mobile phones and other electronic devices. The trend was noticed in the United States when batteries started exploding during cremations.

Various environmentally-friendly techniques are being explored to dispose of bodies, including freeze-drying, shattering and dissolving. These offer significant space and land savings with minimal energy use and pollution compared with cremation. They also offer new, as yet unexplored, potentials for interment design and funeral landscaping.

A landscape history of burial grounds

Until a little over a century ago, cemeteries were located in churchyards or nearby. As churches were typically sited on high ground, there were few problems with leaching into groundwater or waterways. Still, overcrowding and the fact that urban graveyards were not always on elevated ground contributed to the potential for corpses to pollute groundwater, especially during epidemics of disease and plague, such as cholera and yellow fever. It wasn’t until Dr John Snow, one of the founding fathers of modern epidemiology, proved the vital connection between groundwater and the spread of disease that it was acknowledged. Snow’s famous map – an original type of infographic – of 13 public wells and clusters of cholera outbreak in London’s Soho in 1854 led to water testing that isolated the responsible bacterium. In 1924, Walter Bell wrote that he believed the lessons had still not been learnt from London’s Great Plague of 1664, when groundwater below “thickly buried” church grave yards contaminated the parish wells.

The local ecology of the Cumberland plains will be enhanced and protected.

The mass-migration of rural workers to cities during the industrial revolution in Britain meant that new urban cemeteries were needed. However, so too was recreational open space. Long before Birkenhead Park inspired Frederick Law Olmsted’s Central Park in New York, landscaped cemetery-parks of Europe such as Pere Lachaise Cemetery, which opened in 1804 in Paris, quickly led to similar cemeteries in the United States. The same motivations to provide public parks for healthful recreation encouraged ‘rural’ cemeteries to provide a soothing, meditative natural environment and escape from urban crowding. Mount Auburn Cemetery near Boston, consecrated in 1831, was the first rural, or garden, cemetery in the United States and stills serves its dual role as sacred site and pleasure ground.

Aspect Studios design for Bunurong Memorial Park enhances biodiversity as well as social diversity, providing for multiple community open space activities much like 19th century garden cemeteries.

Olmsted worked closely at the Sanitary Commission with Montgomery Meigs, quartermaster general of the Union Army during the Civil War. Meigs sought Olmsted’s advice in landscaping cemeteries. Olmsted prophetically warned that the current fashion for elaborate and artificial gardening should be avoided because it would disappear and advised planting a sacred grove for the war dead using indigenous trees.

The pursuit of urban environments inclusive of the civilising influence of nature was a project that attempted to mitigate the pollution – literal and figurative – of the industrial city. A new and civilised urban landscape was proposed, whose open environment would contribute to “making the city more and more attractive as a place of residence”. There is something of this 19th-century ambition in 21st-century efforts to cleanse cities of contaminating influences. Both publicly- and privately-sponsored greening of city spaces can lead to the eviction of those some might consider undesirable.

More than half of all the cemeteries in the UK were constructed between 1851 and 1914,  encompassing the initial emergence of multifunctional landscaped garden cemeteries, followed by the move to more efficient lawn cemeteries. It is likely a much larger proportion were established in Australia during that same time and following the same fashions. Melbourne General Cemetery, opened in 1853, was Victoria’s first ‘modern’ cemetery, designed like a large public park covering 43 planted hectares with generous walking paths and scenic views.

Woodland Crematorium and Cemetery in Stockholm, designed by Erik Gunnar Asplund with Sigurd Lewerentz, is among the most famous and beautiful burial grounds in the world. Although the design evolved during the course of the project from 1915 to 1940, the tranquil, rolling landscape, devoid of graves, echoes some of the aspirations of natural burial grounds. MoMA has exhibited the architectural and landscape drawings of Asplund since 1978. The curators note of Woodlands that the designers wished to “communicate the importance of nature, to which all living things ultimately return”. In 1994, the Woodland Cemetery became one of the few works of 20th-century architecture to make UNESCO’s World Heritage List.

Despite recent concerns over the toxicity of modern burial practices, old cemeteries and burials still have potential to contribute to soil and groundwater toxicity. In particular, Civil War graves in the United States contain bodies that were embalmed with various unregulated secret formulas, laced with arsenic. Embalming was a growth industry during the Civil War era, being the best way to preserve bodies to be returned to distant loved ones. Arsenic does not degrade as bodies rot and so is deposited in the soil and eventually groundwater. It is a carcinogen associated with skin, lung, bladder and liver cancers, among other diseases and cognitive deficits in children.

Another emerging concern with older graves is rising groundwater levels and higher tides. As sea levels rise with global warming, this could lead to contaminated leaching in the near future. It is already having effects in vulnerable low-lying communities where cemeteries are among land urgently being protected.

Natural burials can mitigate, and perhaps eliminate, pollution

There are several reasons why natural burials – also termed green burials or green funerals, organic burials, woodland burials and bushland burials – are becoming more popular. However, a consistently strong motivation is to reduce environmental impacts, including direct toxic contamination of existing sites, and the protection of particular landscape ecologies. Natural burial can do this in several ways: digging shallowly without heavy earth-moving equipment, preparing the body without chemical preservatives or disinfectants, using a compostable coffin or shroud or none at all, avoiding burial of any other toxic or non-biodegradable items, having no headstone or high embodied-energy marker, and conducting any services including food, printing, transport, music and more and in a sustainable non-polluting, no- or low-energy way.

Landscape architect and academic Andy Clayden of the University of Sheffield, researches the planning, design and management of cemetery landscapes. He has led a team that co-authored the first book to review the history and past 20-year growth of natural burials: Natural Burial: Landscape, Practice and Experience, published in 2014. In a paper last year his team focused on the significant contributions of natural burial sites to ecosystem services in England. The ecological benefits are mirrored by shifting perceptions as “natural burial is transforming the traditional cemetery, with its focus on an intensively managed lawn aesthetic, towards a more habitat rich and spatially complex landscape with its own distinctive identity.” Coupled with an ethical-aesthetic shift in death management, this approach is opening many areas of potential engagement and exploration for designers across the full spectrum of services.

A number of organisations have emerged to variously support and oversee natural burials. The United Kingdom’s Natural Death Centre is the oldest, established in 1991 and offering support, advice and extensive links to information for the public. The Green Burial Council in North America, founded in 2005, offers certification as well as education and advocacy. Also established in 2005 is Canada’s Natural Burial Association, serving both the public and burial operators. In 2014 a diverse group of professionals in Australia founded the Natural Death Advocacy Network (NDAN) with a wide remit to advocate, as well as encourage discussion and conduct and disseminate research.

One important aspect of natural burials is the covering a body receives. A co-founder of NDAN and passionate advocate for natural burial, Dr Pia Interlandi, has researched the effects of clothing and textiles on decomposition. Her PhD involved rigorous immersion in the rituals associated with preparing the body for interment. Garments from this investigation have been exhibited at the London Science Museum and London Print Studio. In 2012, she started her current practice, Garments for the Grave, where she now designs custom-made biodegradable burial garments with client family participation.

Australian natural burial sites

Bushland or natural burial is possible in portions of many cemeteries throughout Australia, although there has been little attention given to their complex landscape design. Two years ago Burnie City Council looked to offer a dedicated natural burial site in Tasmania, acknowledging the rising interest in natural burials while, capitalising on the state’s clean, green image and natural scenery. Kemps Creek Cemetery, which includes the Sydney Natural Burial Park, claims to offer Sydney’s first eco-burial area. A different and popular service is being offered in the south-west of Victoria. Upright Burials opened in 2010 as Australia’s first vertical burial ground. As well as taking up much less space than conventional burial, the Kurweeton Road Cemetery adheres to many further environmentally-friendly processes such as an absence of any grave-markers. The exact location is GPS recorded and provided to family and friends. Queensland funeral directors advise of two ‘green’ burial sites within cemeteries both operated by local councils: one as part of the memorial gardens at Lismore in northern NSW and another, which is the state’s only registered green burial site, within Alberton Cemetery on the Gold Coast.


 
An award-winning master plan for Acacia Remembrance Sanctuary within Itaoui Woodland Park was the first of its type planned in Australia. Developed by landscape architects McGregor Coxall working with Chrofi, the project encompassed 10 hectares of degraded, yet protected bush ecology west of Sydney. The design philosophy looked to establish a model that would not only protect, but reinstate the flora and fauna of the site. It has considered ongoing maintenance as part of full environmental considerations, including having all energy requirements generated on site, on-site water treatment and reuse, and limited slashing of the indigenous grasslands to create pathways instead of introducing exotic grasses and regular mowing practices.

Aspect Studios were responsible for the design of 11 hectares of native gardens at Bunurong Memorial Park, which opened in 2016. Much like early garden cemeteries, the realised proposal caters for the wider community’s need for open space, accommodating weddings, funerals and fitness groups, as well as picnicking and play. Bunurong also includes a new natural burial area, Murrun Naroon.

Reconsidered design approaches for cemetery landscapes, both expanding and new, are clearly an important area of innovation that will curb land contamination. However, new building opportunities can also reset expectations. Harmer Architecture’s Atrium of Holy Angels Mausoleum in Fawkner Memorial Park north of Melbourne was a rare chance to interpret a very old form. The nature of mausolea help contain any contaminants by isolating bodies and congregating remains, which takes up less space and resources.

Despite the thorough, successful translocation of 19th-century British garden cemeteries, followed by equal enthusiasm for the shift to 20th-century lawn cemeteries, Australian researchers warned in 2011 that: “If the concept of green burials is to have any degree of success in Australia, burial operators, land managers and planning authorities cannot simply transplant the practices employed in North America or Europe into the Australian context.”

Perhaps a similar translation of considered species, ecology and aesthetics is needed, as was slowly adapted when Australian landscape gardeners and designers such as Edna Walling looked to the British ‘wild garden’ of William Robinson. The wilderness of Britain is not the wilderness of New South Wales or Victoria or the many smaller patches of ecologies that Walling became familiar with while documenting roadside vegetation and that changed her approach to landscape design.

If the natural burial movement is to achieve its fullest potential to enhance environments, rather than just refrain from harming them, designers should aim to serve both new sensitivities around death and memorialisation, as well as new sensitivities toward our threatened environments.

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How we can truly support those facing death or grieving over loss

By Dr. Nick Busing

Living well and dying well are what we all hope for. As we face dying and death, we need all the support we can get. It comes from many places, but we all know about the challenges associated with crowded emergency departments, the wait for hospital beds, the inadequate number of community placements, the stress on home care, the shortage of personal support workers … the list goes on.

Most Canadians (75 per cent in recent surveys) want to die at home, but most cannot. Most palliative care today is still provided in the hospital. The reasons are complex and include the lack of adequate home care palliative services and the limited support available to families and caregivers as they struggle to support a loved one at home. Conversations about dying and death are often left too late, when families and friends are in a state of panic, and are unsure what to do, and therefore turn to the local hospital to help them out.

In my more than 40 years as a family doctor, I learned so much from my patients and their families. When I provided end-of-life care in the home, I often noted the critical role of the family and friends in providing support and care to the dying person. Those families who spoke to the dying person well before the last days to understand the values, wishes and beliefs that were important, coped better, as I am sure the patient did as well. This reinforced for me that dying, death, care-giving and loss are social problems with medical aspects and not medical problems with social aspects.

We need to mobilize our communities (person by person, street by street, neighbourhood by neighbourhood) to become better able to support each other as we age. Compassionate Ottawa, a grassroots organization, only two years old, lives by the following vision: A compassionate Ottawa supports and empowers individuals, their families and their communities throughout life for dying and grieving well.Compassionate Ottawa was started by volunteers, and is sustained by volunteers, all of whom want to help our community normalize discussions about dying, death and grieving so that we can reach out to each other to provide support when needed.

The compassionate city movement was started in the United Kingdom and advocates for the role of the community in providing support and care. The long-term goal for us is to achieve a new model of care for those dealing with dying, death and grieving. Compassionate Ottawa is working with schools, workplaces and faith organizations to educate them about planning for dying and death so that they foster resiliency at the individual level. We are conducting advance care planning (ACP) workshops with many community groups. Our compassionate city strives to be one that recognizes that caring for each other should not be left to the health and social services but is the responsibility of all of us.

Amongst its initiatives, Compassionate Ottawa is proud to bring the HELP project (Healthy End of Life Project) to Canada from its origins in Australia. This three-year research project, with funding from the Mach-Gaensslen Foundation of Canada and led by researchers at Carleton University, will work with two faith groups and two community health centres in Ottawa to develop the skills and confidence to offer, ask for and accept help near the end of life. We will identify the challenges and successes we encounter and hope to have lessons that will be of use not only in Ottawa but also in communities across Canada.

We cannot continue to look only to the government’s health and social services to support our friends and relatives as they near the end of their lives. A push for more resiliency in the community would be a great benefit to all of us. And downstream it would mean fewer visits to the emergency rooms, fewer admissions to hospital, less demand for experts, less costly care and, hopefully, a more satisfied and stronger population.

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Love at the end of life

By Maryse Zeidler

Meaghan Jackson has a surprising amount of insight into death and love for a 36-year-old.

“Working here, it’s changed me,” Jackson said from a wood-panelled room at the North Shore Hospice, where she has worked as a music therapist for four years.

“It’s completely changed the trajectory of my life.”

Meaghan Jackson is a music therapist at the North Shore Hospice. Jackson says working in palliative care has changed her life.

Jackson guides the residents at the hospice through their final days. She helps them write songs for their loved ones, and plays music for them as they take their last breaths.

Jackson has worked in “death and dying” since she was 22. She says her experiences prompted her to have children early in life, and focus on the present, no matter how difficult.

“I practice the art of being present when that present isn’t pleasant,” she said.

Health practitioners like Jackson say their experiences working with dying patients offer insights into love, relationships and how to focus on what matters.

A room at the B.C. Cancer Centre in Vancouver. Health practitioners say patients facing death tend to prioritize their relationships.

Each of the four practitioners interviewed for this story — a doctor, a social worker, a nurse and a music therapist — say dying patients tend to focus their energy and attention on the people they love.

Dr. Pippa Hawley, a palliative care doctor at the B.C. Cancer Centre, says she has seen couples and families reconcile after decades apart. She’s also seen several of her dying patients get married in the palliative care unit, sometimes in their beds.

Hawley says dying patients don’t have time to take loved ones for granted.

“All of that stuff that we bother with on a day-to-day basis just fades into irrelevancy,” she says.

Dying patients face many challenges with their partners, even when they prioritize love.

Melanie McDonald, a social worker who also works in palliative care at the B.C. Cancer Centre, says every couple she helps deals with death differently.

Couples who thrive during difficult moments are often those who can balance sadness with joy and love, she says.

Social worker Melanie McDonald says couples face many challenges when faced with death.

Nurse Jane Webley, who leads Vancouver Coastal Health’s palliative care unit, says the strongest couples are best at honestly communicating their needs, feelings and end-of-life plans.

Webley says patients who find it too difficult to discuss those matters are often the same ones who push loved ones away and face death alone.

“I think that’s a protection mechanism,” she said. “I would say 90 per cent of the time, it’s fear — and that fear is brought about by lack of communication.”

Dr. Hawley says some of her patients are never able to communicate their feelings and needs. Often, she says, that’s been a long-standing issue for them.

“People tend to die as they have lived,” she said.

Talking about death and end-of-life plans is often easier for older couples who are often more in touch with mortality. But Webley says it’s never too soon to have those difficult conversations.

Another challenge couples face when one is dying is learning to give or receive help, health practitioners say.

Social worker McDonald says people who aren’t used to being caregivers, typically men, often struggle when they’re suddenly thrust into that position. But most people learn to take on that role, she says.

Health practitioners say that learning to ask for help can be a steep learning curve for some patients.

Dr. Hawley says patients can face problems as they lose their independence. But she says it’s important for people to let their partners care for them.

“Don’t feel like you’re a burden,” she said. “It’s actually a wonderful gift to be allowed to care for somebody, to show them that you love them.”

All four of the health care practitioners say love at the end of life can take many shapes.

“Love looks differently in different situations,” says social worker McDonald. “Love shows up in the end of life in friendship and in families and pets and faith traditions and all sorts of different ways.”

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How To Grieve When A Loved One Chooses To Die

By Chloe Gray

My great grandma, or Mia, as we knew her, was 100 when she decided she was ready to die. I found this out through a nonchalant conversation with my granny, her daughter, just after Christmas. She was eating a bowl of porridge at the breakfast bar, and said: “Mia wants to go, and that’s legal in Canada.”

Was I shocked? Not really. Although I didn’t actually know that Canada, where she had lived all her life, offered medically assisted dying (MAiD), my family are the type to take things into our own hands.

It’s a weird thing, euthanasia. It’s something you’re taught about in RE lessons at school, debating whether we have a right to ‘play God’. It’s something I agreed with as a faraway idea that I’d never have to consider. Something I thought was good in theory but hadn’t ever put any serious thought into the practice.

When I learned about Mia, I agreed with it still. Everyone I told did too, commenting on how brave her decision was and how amazing it was that she had this ‘opportunity’. They may have been thinking about the procedure itself rather than offering support but that was okay, because this was, overall, A Good Thing.

Meanwhile, with my family, talk swiftly turned to logistics. Timetables detailing who would be where and when were emailed around and the bank split Mia’s estate equally, with cheques ready to be collected by her children on the ride home from the facility. It helped the Canadian side of the family to deal with it Monica Geller-style, working pragmatically through the practical elements of her life.

“We’re more open to things that are predictable,” says Dr Anna Janssen, a psychologist specialising in palliative care. “There’s something safer about it, and that means we can be more flexible in our thinking and more open with ourselves and each other.”

But while they were handling the logistical side, it became very clear that we needed to introduce this flexibility into the emotional side of things, too.

The ‘five stages of grief’ ends with ‘acceptance’. The problem here was that for Mia to go with our blessing, we needed to accept her death before she actually died. That’s an unchartered process; grieving while someone is still alive and well(ish) feels weird. My auntie Penny summarised it perfectly, saying she felt she was going through grief sideways, like a breech birth.

Feeling emotion with a deadline meant we had to sprint through the confusion, the sadness, the relief of it all. If we had been Monica about the logistics, we Chandler-ed around the feelings part somewhat chaotically. But we still all felt weirdly…lucky? “With assisted dying, everyone involved has choice in the death,” explains Judy Tatelbaum, author of The Courage to Grieve. “That makes a great difference. Anticipatory grief is very healthy.”

But I was worried about what the minutes and days after she died would bring, seeing as we had already ‘grieved’. “Maybe the grief afterwards is easier, as some feelings have happened already,” said Dr Janssen. “But eventually there will be something new, because the context has changed, and you can’t feel it until the person has actually died.”

And so the 9th of January came. I asked not to know the exact time she was meeting her doctor, because what do you do in the minutes that someone you love is dying? In the most extreme version of the Schrödinger’s cat experiment, I went into a meeting, curious about whether she’d still be alive when I came out. She wasn’t. But there was an email telling the whole story, including how she had greeted the doctor by asking if he was the nice man who was going to help her.

Yes, my experience introduced a new closeness to my family. But it highlighted a flaw in the current MAiD plan. The message from the guidelines, the ethical debates and the psychologists I’ve spoken to is that assisted dying should be about having autonomy. It should make it easier, because you plan and prepare for the place, time, aftermath and even the feelings. But MAiD is such new territory that there are the same unknowns as with ‘regular’ dying.

Up until now, humans have only ever died after suffering through old age or illness or suddenly and shockingly in an accident. Those five stages of grief have been based on these same experiences over thousands of years. Now, suddenly, we’ve introduced a model where death can be scheduled into our diaries, and we can’t just apply the same rules. There are no history or self-help books to teach us how to navigate a brand-new type of grief that brings up a totally different, sporadic, rushed and uncertain feeling.

While there are articles and research papers discussing ethical, religious and legal boundaries, all the conversations have forgotten the people, families and feelings. And maybe that’s because, as Dr Janssen pointed out to me, it’s easier to discuss facts and figures than it is to discuss emotions.

For my family, MAiD was the first time we all properly discussed dying. Perhaps this is the taboo-breaking policy the world needs? You can’t send out a ‘save the date’ without telling people what for, after all. But to stop the turbulence, there’s still a grief taboo that needs to be broken. “We need to talk about the psychology of death and grief, but also the psychology of living. We talked about the death, but not about how we’re then meant to live well,” said Penny.

For families going through MAiD this year, in five years, or further in the future, when it could be a global policy, the system will benefit if we open up. “At the moment we don’t talk about it enough to know whether that [five stages] model requires more thought,” agrees Dr Janssen. “In my academic brain, I’m thinking we need to ask what MAiD means for people, but really, we’ll simply hear more if we take the time.”

My granny has since told me not to be shocked if she asks for MAiD. Is that a conversation she would have had with me if it wasn’t for Mia taking the plunge? Probably not. And while I haven’t yet applied my newfound skill for discussing death with anyone else, I’ll no longer hold back – especially when talking about my own.

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