A final comfort for dying children…

‘Palliative transport’ to send them home

Anne Brescia sits in the room of her only child, Anthony Gabriel Brescia-Connell, who died of cancer in 2011. The hospital sent him home so he could die there with his family.

By Melissa Bailey

Anne Brescia sat beside her only child, Anthony, as he lay unconscious in a hospital bed at age 16. Just a few months before, he was competing in a swim meet; now cancer was destroying his brain. Brescia couldn’t save her son. But she was determined to bring him home.

Anthony Gabriel Brescia-Connell was not conscious for his voyage from Boston Children’s Hospital to his home in Medford, Mass., where he died on March 3, 2011, surrounded by his family and beloved stuffed animals. He may not have heard the parting blessings before a doctor turned off his portable ventilator and let him die naturally.

But having the choice to take Anthony home, away from the beeping hospital monitors, “meant the world to me,” his mother said.

Anthony’s journey was made possible through swift and unconventional efforts by the hospital staff, including a critical care transport team accustomed to rushing kids to the hospital to save their lives, not taking them home to die.

The experience galvanized Harriett Nelson, a nurse on that team who helped arrange the trip. It inspired her to conduct pioneering research on and advocate for “pediatric palliative transport” — a rare but growing practice that aims to give families choice, control and comfort at the end of life.

Palliative transport lets families move critically ill children from the hospital intensive care unit to their home or hospice, with the expectation they will die within minutes to days after removing life support.

It means “having parents go through the hardest thing they’ll ever know — in the way they want to do it,” Nelson said. Boston Children’s has sent 19 children to home or hospice through palliative transport since 2007, she said.

These final journeys — also offered by the Mayo Clinic, Children’s Hospital of Philadelphia and Kentucky Children’s Hospital — can involve elaborate planning, delicate transfers and even long helicopter rides. In some cases, families took a child far from home for a last-ditch effort to save their lives.

At the Mayo Clinic, palliative transport has helped culturally diverse families carry out end-of-life wishes for their dying children. In one case, a newborn girl rode 400 miles by ambulance to return to her Amish community, where she was extubated and died in her parents’ arms, in the company of her 11 siblings. In another, an 8-month-old Native American girl traveled 600 miles by air and ground ambulance to her rural tribal reservation, where she could participate in end-of-life rituals that could not be done in the hospital.

These trips, which can cost thousands of dollars, are typically offered free to families, paid for by hospitals or charities. Most children are taken home, where they transition to receiving care from hospice staff. Some go instead to hospice facilities.

A collection of photos of Anthony Gabriel Brescia-Connell, who was 16 when he was transported from Boston Children’s Hospital to his home in Medford, Mass., where he died on March 3, 2011, surrounded by his family and beloved stuffed animals.

Megan Thorvilson, a pediatrician and palliative care specialist at Mayo, said palliative transport aims to address a gap between families’ preference and reality.

Most parents of terminally ill children would prefer that their child die at home, but most of these children die in the hospital, most commonly in the intensive care unit. Most pediatric ICU deaths happen in a controlled way, following the removal of life support, she said. That means there may be time to move the child to an alternative location to honor a family’s wishes.

Transporting children on life support is risky. At a palliative care conference, a nurse from Children’s Hospital of Philadelphia described the difficulties staff faced in trying to fly a 10-year-old girl home to Michigan. After she was rolled on her side several times to be transferred between vehicles, the child died before the plane could take off.

And dying at home is not what every family wants.

“We do sometimes overly romanticize the death at home,” Thorvilson acknowledged. Some parents would much rather have a child die in the hospital, with familiar nurses at the bedside for medical and emotional support. Some would rather keep this traumatic experience away from where they live.

Brescia, however, said she couldn’t bear to return home without her son.

A biologist who used to run an electron microscopy lab, Brescia wasn’t sure whether she and her husband, Brian Connell, would ever have children. Fertility treatments didn’t work. But on June 23, 1994, seven days before Brescia turned 44, she gave birth to a baby boy.

“Anthony is the love of my life,” said Brescia, who is now 68. “The OB/GYN put him on my chest and I really thought that my heart was going to burst.”

The mother-son bond was especially close: Brescia home-schooled her son for most of his life. Anthony grew to be 6 feet tall, full of curiosity. He loved identifying mushrooms, studied Arabic and oceanography, and aspired to go to MIT. He was an avid swimmer, competing on a team in Belmont, Mass.

One day in late 2010, while racing the backstroke, he became disoriented in the pool and was disqualified.

A neurologist prescribed rest. But over the next two weeks, Anthony grew only more tired and began to lose his balance. On Dec. 20, he was taken to Boston Children’s Hospital and diagnosed with a brain tumor.

The disease “came out of nowhere,” Brescia recalled. “He went from looking incredibly healthy and swimming like a healthy kid” to living at the hospital. At his bedside, she told him she’d bring him home to celebrate Christmas and eat stuffed shells.

His condition deteriorated quickly. The tumor could not be surgically removed. Anthony pushed through radiation and chemotherapy with the hope of going home, but the treatments failed. By late February 2011, the tumor began pressing on his brain stem, and fluid was building up in his brain.

Anthony was unconscious, relying on a ventilator to breathe. Brescia connected with the hospital’s palliative care team.

“I want to bring him home tomorrow,” Brescia told staff.

“I was scared to death he was going to have another incident,” she recalled. “I didn’t want them to do any more invasive procedures to reduce the pressure on his brain.”

Staff from the ICU, palliative care and transport teams scrambled to honor her request. The critical care transport team arranged for the use of its ambulance, a mobile ICU the size of a small bus.

The night before the trip, Brescia said goodbye in the privacy of Anthony’s hospital room.

“I don’t want to lose you,” she told him, holding his hands. “I’m going to let go. I want you to go where you need to be.”

On March 3, 2011, Brescia and her husband boarded the bus along with Anthony, a chaplain, two doctors, Nelson and a nurse from the ICU. They rode 10 miles to the family’s home, where Anthony was laid on a hospital bed in his living room, surrounded by his stuffed animals, on his favorite flannel sheets.

A pastor held a service for Anthony, and close family gathered to say goodbye. Then Brescia signaled for a doctor to disconnect the ventilator.

Anthony seemed to be at peace, Brescia said. After he died, she climbed into the bed with her son and held onto him for a while.

The death was still traumatic. But “it was really a gift to bring him home,” she said. “It was a significant act of compassion and kindness and love on the part of the Children’s staff.”

After Brescia’s experience, Nelson was inspired to offer the choice to more families.

First, she interviewed Brescia and other parents about whether palliative transport had a positive effect. All nine parents said it had. One family described holding a celebration when they brought their newborn baby home, even though he was about to die. They took family photos and used the nursery they had set up, establishing a brief sense of normalcy for four days before he died.

In her 14 years on Boston Children’s critical transport team, Nelson has found that parents benefit from palliative transport for various reasons: At home, they’re away from the noise of the hospital. They have control over who can visit. They feel more comfortable. And they don’t feel rushed after their child dies.

Nelson created a protocol that allows the hospital to offer palliative transport in a more routine way. Now, when children come to any of the hospital’s four ICUs, Nelson said, “we have the power to say, ‘You have a choice when it comes to the end of life.’ ”

The practice appears to be spreading.

After Lindsay Ragsdale, the physician who is director of the palliative care team at Kentucky Children’s Hospital in Lexington, presented her protocol for palliative transport at a conference last year, staff from 20 hospitals asked her to share her checklist, she said.

Mayo’s Thorvilson, who has worked closely on a half-dozen palliative transports, said it’s possible these last-minute trips from ICU to home could be avoided by earlier referrals to hospice, which might get kids home sooner. But when children with complex illnesses get sick, she said, “sometimes it’s hard to know whether this is just another bump in the road, or whether this is the natural end of the child’s life.”

“There’s something really unique about a child dying,” she said. “Everyone’s heart breaks, and we want to be able to do all that we can to be able to support the family in the midst of the tragedy.”

Eight years after Anthony’s death, his bedroom remains untouched, his socks still folded in his top drawer, swimming trophies on the cabinet, slippers under his chair. Pictures of him adorn every room in the house — on the fridge, the kitchen table, the living room stereo.

Looking through photos one recent morning of her son fishing and blowing out birthday candles, Brescia struggled to hold back tears.

“I couldn’t cure him,” she said. “I failed to protect him from a tumor — that’s how you feel. They did all they could. It wasn’t enough. Bringing him home was the best I could do.”

Complete Article ↪HERE↩!

May 25, 2019May 25, 2019

‘A good death’

Nurse pioneers a better way for elders to die

Nurse practitioner Nikki Johnston has been awarded the inaugural Health Minister’s Award for Nursing Trailblazers.

By Steve Evans

Nikki Johnston is passionate about dying.

She’s just won a big prize as Australia’s most innovative nurse. It was a recognition of the way she is changing the way the elderly end their lives.

Her mission as a nurse in Canberra is to help people have what she calls “a good death”.

She says too many people have “bad deaths” where fear and loneliness dominate their last moments.

Her radical idea is to involve people who are in their last months in the planning for those final fearful moments. The dying attend meetings where their own deaths are discussed.

She says a rigorous study of the results of the new system demonstrates clearly that it is a better way, and she’s pressing politicians to adopt it in the rest of Australia and beyond.

She also thinks there is too much emphasis on research to prolong lives at the expense of spending more to ensure that people die in peace at the right age.

Ms Johnston is a “nurse practitioner” who works in palliative care – it’s the most senior type of nurse, qualified to diagnose illnesses and prescribe drugs and treatments.

She has a missionary zeal for involving the patient in (arguably) the most important process affecting them – their end.

In the residential homes where the system is now used, the dying person attends the meetings and hears how their death will be dealt with. Their views are listened to and acted on.

“If we don’t ask the questions and give people the opportunity to talk about the end of life, we risk isolating people in their last months,” she says.

“They feel like no one gets it – no one understands – what’s going on, and that can be frightening.”

Researchers have studied 1700 people in the ACT at the end of their lives, comparing those where the system is in operation and those where it is not.

The study – the first of its kind in the world – involved rigorous measurement of a raft of variables like how soundly people slept in their last months and how much medication they needed.

The researchers devised a “quality of death” index. Ms Johnston says the results show that the new way works.

She argues that there should be a switch from maintaining uncomfortable and painful lives to the quality of death. “People are living longer but their quality of life is reduced so they are not living well enough or dying well enough,” she says.

“We are not valuing the end of life because we are not putting money into it.”

With the new system, people aren’t told bluntly that they are dying.

Ms Johnston says that she might have a conversation with a resident of an aged care home and ask them how they saw their future. In that conversation, the old person might well say that they thought they were dying.

“I ask them where they are at, what’s important, and most people tell me they are dying,” Ms Johnston says.

“If they are leading this conversation, It’s not confronting. They have taken us there.”

“Gently, we normalise death and dying. We help the staff to be able to talk about it. We support the relatives and loved ones through the process.”

She said that the elderly people she deals with generally don’t fear death. “Most people are ready. They are sick and they’ve had enough. They are ready to go.

“To help someone in their last months of life, we need to know them – to sit with them and talk to them. We need to know what’s important. How do we get this right for the person?”

That is what happened, for example, with Chris Dillon, whose death on March 29, 2017 was peaceful, according to her daughter Rose.

The aged mother had been in a residential home in Ainslie for just over two years.

According to her daughter, Mrs Dillon said one day that she felt tired and she was close to the end of her life.

Once that was recognised, the palliative care team became involved.

“She was a pragmatic person,” Rose says.

“She wanted to know what it would feel like, would it hurt, how would people know that she was dying. What would they do with her body?

“And then Nikki came along. She sat down really close to Mum and said: ‘I’m Nikki. I’m from palliative care and we need to talk about some things’.”

According to Rose, her mother simply replied: “What? About me dying?”

“So the conversation started naturally,” she says.

“The impact that Nikki had on Mum’s death was massive. It allowed Mum to have a peaceful death.

“She wasn’t frightened.”

The new system involves staff keeping a kind eye on residents

At the Calvary Haydon Retirement Community in Bruce, for example, manager Kim McGovern says she and her staff quietly look at residents every month to see “who might not be there next month”.

Kim McGovern of Calvary Haydon Retirement Community in Canberra.

Once people are identified, they are talked to sensitively.

An “individual care plan” is drawn up with the involvement of the resident.

“It’s their choice. We involve them early on,” Ms McGovern says. “It’s their last journey.”

The involvement of the dying person allows proper preparation, both medically and emotionally.

This means a final crisis, in which the patient is rushed to hospital to die in a chaotic emergency, is less likely.

Ms Johnston is an extraordinary character – bright and vivacious (at least when she’s expounding on the importance of helping people have “a good death”).

She may have dark moods, in that she says she needs to put her “armour” on before she attends some deathbeds.

And she does cry – after all, she’s got to know the person – but, as she puts it, “this isn’t my grief”.

“The grief belongs to the family,” she says.

Complete Article ↪HERE↩!

May 24, 2019May 24, 2019

Returning to the Earth

Sociology doctoral student Nick Mac Murray studies activists working to change how America views and approaches the burials of their dearly departed.

By Nicole Rupersburg

Few experiences are more painful than the death of someone we love, and the grief only continues as burial arrangements are made. On that terrible day when we have to inter a loved one, it’s difficult enough to cope with the act, let alone think beyond it.

But a group of environmentally conscious citizens in America known as ecological death activists are. UNLV doctoral candidate Nick Mac Murray studies them.

“Ultimately, eco death activists are trying to minimize the footprint of American burials,” he said.

Most people aren’t aware of the impact burial has on the planet. Take, for example, the process of embalming. We generally don’t question it because it’s common practice at this point. It’s just what’s done when someone passes.

But embalming, which Mac Murray noted emerged during the Civil War to preserve soldiers’ bodies for the long journey home from the front lines, is a toxic practice. Embalming fluid contains a mixture of poisonous chemicals including formaldehyde and methanol, which can harm the environment. And embalming is largely unnecessary, Mac Murray noted. No laws require it, and no legitimate public health reasons necessitate it.

Yet embalming remains standard practice in the U.S.

“People view death in a sacred and personal way,” said Robert Futrell, UNLV department of sociology chair and Mac Murray’s faculty advisor. “They carry around entrenched norms and values, making it difficult to push back against these established practices.”

Eco death activists hope to change established practices by encouraging “green burials,” which manage death in ways that limit environmental damage and perhaps even reap an environmental good. Instead of embalming, nontoxic chemicals or refrigeration can be used in the treatment of human remains. Casket alternatives include biodegradable shrouds and wicker basket coffins. Most interments currently involve concrete grave liners and burial vaults, which are used to keep caskets level and prevent machinery or the ground above from crushing them. Eco death activists note that each burial of this type deposits a ton or more of concrete into the ground and that cement manufacturing is one of the leading producers of greenhouse gas emissions, Mac Murray said.

Futrell said changing the cultural beliefs around death management is challenging but not insurmountable. After all, embalming became common just some 150 years ago. And in just the last 50 years, cremation gained acceptance, surpassing burial in popularity in America in 2015, according to the National Funeral Directors Association.

The broader issue, as Mac Murray sees it, is death anxiety. Americans are so uncomfortable with death that they feel like the whole process needs to be handled by a professional. But, he pointed out, this too is a fairly new development. For most years of the American West’s history, for example, death care was very personal; families would tend to and bury the body in a grave they dug by hand, and embalming was a crazy fad.

“These practices seem weird in contemporary America, but if you look back in history, these ways were the norm,” Mac Murray said.

Public sentiment is already shifting around funerary practices, driven in part by the desire to make death management more personal and get families more directly involved in the care of their deceased, while some are rejecting the increased commodification of the process; it is a $20 billion industry.

“For some the decision is purely a practical one: what’s cheaper, what’s easier, what makes more sense for me or my family,” Mac Murray said. “If cheaper options are available, there are people who will make those choices with no consideration for environmental issues.”

Still, the concept of green burials is gaining traction as well, with more and more cemeteries around the country offering green burial options.

“We’re starting to see the inroads that eco death activists are making,” Mac Murray said. “These outliers are pushing for alternatives, and those alternatives are starting to be picked up by the funerary industry because they’re seeing that some people do have an interest in them. Green burials seem very alternative and deviant from our current practices, but that could change very quickly.”

Complete Article ↪HERE↩!

May 23, 2019May 23, 2019

Eco-friendly ending: Washington state is first to allow human composting

Legislation would let facilities offer ‘natural organic reduction’ which turns a body into about two wheelbarrows’ worth of soil

Katrina Spade is the founder of Recompose, a natural decomposition company. Spade was the inspiration for the Washington legislation.

Ashes to ashes, guts to dirt.

Governor Jay Inslee signed legislation Tuesday making Washington the first state to approve composting as an alternative to burying or cremating human remains.

It allows licensed facilities to offer “natural organic reduction”, which turns a body, mixed with substances such as wood chips and straw, into about two wheelbarrows’ worth of soil in a span of several weeks.

Loved ones are allowed to keep the soil to spread, just as they might spread the ashes of someone who has been cremated – or even use it to plant vegetables or a tree.

“It gives meaning and use to what happens to our bodies after death,” said Nora Menkin, executive director of the Seattle-based People’s Memorial Association, which helps people plan for funerals.

Supporters say the method is an environmentally friendly alternative to cremation, which releases carbon dioxide and particulates into the air, and conventional burial, in which people are drained of their blood, pumped full of formaldehyde and other chemicals that can pollute groundwater, and placed in a nearly indestructible coffin, taking up land.

“That’s a serious weight on the earth and the environment as your final farewell,” said Senator Jamie Pedersen, the Seattle Democrat who sponsored the measure.

He said the legislation was inspired by his neighbor Katrina Spade, who was an architecture graduate student at the University of Massachusetts, Amherst, when she began researching the funeral industry. She came up with the idea for human composting, modeling it on a practice farmers have long used to dispose of livestock.

She tweaked the process and found that wood chips, alfalfa and straw created a mixture of nitrogen and carbon that accelerates natural decomposition when a body is placed in a temperature- and moisture-controlled vessel and rotated.

A pilot project at Washington State University tested the idea last year on six bodies, all donors who Spade said wanted to be part of the study.

In 2017, Spade founded Recompose, a company working to bring the concept to the public.

State law previously dictated that remains be disposed of by burial or cremation. The new law, which takes effect in May 2020, added composting as well as alkaline hydrolysis, a process already legal in 19 other states. The latter uses heat, pressure, water and chemicals like lye to reduce remains.

Cemeteries across the country are allowed to offer natural or “green” burials, by which people are buried in biodegradable shrouds or caskets without being embalmed. Composting could be a good option in cities where cemetery land is scarce, Pedersen said.

The state senator said he had received angry emails from people who object to the idea, calling it undignified or disgusting.

“The image they have is that you’re going to toss Uncle Henry out in the backyard and cover him with food scraps,” he said.

To the contrary, he said, the process would be respectful. Recompose’s website envisions an atrium-like space where bodies are composted in compartments stacked in a honeycomb design. Families will be able to visit, providing an emotional connection typically missing at crematoriums, the company says.

“It’s an interesting concept,” said Edward Bixby, president of the Placerville, California-based Green Burial Council. “I’m curious to see how well it’s received.”

Complete Article ↪HERE↩!

May 22, 2019May 22, 2019

Declining Sense of Smell May Foretell Death

By Stephanie Pappas

Elderly people with a poor sense of smell have a higher likelihood of dying in the 10 years after testing than those whose sniffers stay sharp.

In a new study, elderly people with a poor sense of smell had a 46% higher risk of death 10 years after olfactory abilities were tested, compared to those who passed the smell test. The study also reported that 28% of the increased risk of death could be attributed to Parkinson’s, dementia and unintentional weight loss, all of which predict death in their own right and can also affect a person’s sense of smell. [7 Ways the Mind and Body Change With Age]

But the remaining 72% of the risk linking poor sense of smell and death is unexplained and may be due to subtle health conditions that eventually worsen, the authors wrote in the study, published today (April 29) in the journal Annals of Internal Medicine.

The changes of age

According to the paper, about a quarter of older Americans experience a decline in sense of smell, but this is more likely to go unnoticed compared to loss of sight or hearing. Some studies have linked the decline in sense of smell to risk of death within five years of the decline’s onset, but that research didn’t control for demographics such as sex and race, or health characteristics that might explain the links between sensory loss and death.

n the new study, Michigan State University epidemiologist Honglei Chen and his colleagues used data from the Health ABC study, a long-running study of elderly individuals. (One of the co-authors of the new study, Dr. Jayant Pinto, has received money unrelated to the current study from pharmaceutical companies involved with respiratory allergies and nasal drug delivery.)

Between 1997 and 1998, scientists had recruited about 3,000 older adults, ages 70 to 79, living in Pittsburgh or Memphis, Tennessee for the Health ABC study. Of those individuals, nearly 2,300 completed a smell test at the beginning of the study. In this test, they were asked to identify 12 common smells, and they remained in the study until their deaths or until 2014, whichever came first.

During the total follow-up period of 13 years, about 1,200 study participants died. The researchers found that those with a poor score on the olfaction test had a 46% higher risk of dying by year 10 and a 30% higher risk of dying by year 13, compared with those who had a good score. (The stronger association at year 10 compared to year 13 was likely because the participants were already into their 70s and nearing the end of their life spans, the researchers wrote. By year 13, many were dying regardless of their sense of smell or health status early in the study.)

Sense of smell seemed to be a particularly powerful predictor of earlier death for those who were in good health, the researchers wrote. Among participants who said at the beginning of the study that their health was good, poor olfaction was linked to a 62% increase in the chance of dying by year 10 compared to good olfaction; it was linked to a 40% increase in the chance of dying by year 13.

What’s smell got to do with it?

It’s known that the neurological damage from Parkinson’s disease and dementia can affect a person’s sense of smell, so Chen and his colleagues investigated whether those conditions could explain the link between the nose and death. They also checked the role of weight loss, which could indicate malnutrition.

Even taking those conditions into account, a poor sense of smell explained 70% of the differences in timing of death. The association held across race and gender, which could make it a powerful tool for quantifying health, the researchers wrote.

“[P]oor olfaction among older adults with excellent to good health may be an early warning sign for insidious adverse health conditions that eventually lead to death,” the researchers wrote.

Complete Article ↪HERE↩!

May 21, 2019May 21, 2019

Eco burials…

How the rituals of death are changing for the environment

By Sally Blundell

He was an avid sailor, a talented dancer, a devoted father and an entrepreneurial fireworks professional whose gunpowder-fuelled chemical concoctions lit up New Zealand skies in dazzling displays of sound and colour.

When Anthony Lealand died last June at age 71, following surgery-related complications, he went more gently than many into Dylan Thomas’ good night. His body was washed and dressed by his two children, placed unembalmed in a macrocarpa coffin made by son Nicholas in the shape of a boat, then lowered into a shallow grave on a gently sloping lawn overlooking Lyttelton Harbour.

Eight months later, few signs remain at the new eco-burial site in the Diamond Harbour Memorial Gardens Cemetery. No headstones, no permanent markers. Just some native grasses, a cluster of young coprosma, the smell of pine, the sound of birdsong, the glint of the sea on which Lealand loved to sail.

“I’d much rather think of my father at the beach,” says Nicholas. “He wasn’t very spiritual or sentimental about his body. We know he is in the ground just there, but he isn’t in his physical body – he is in his life’s work, his children. The soul is this elaborate metaphor to mean all the things that are outside your physical body, and that part of him continues on. His business is still running, his friends still tell his jokes – all that is still there, but his body is just compost.”

No surprises

So, what’s needed for a good death? As palliative-care doctor Janine Winters writes in Death and Dying in New Zealand (edited by Emma Johnson) the person should be comfortable, in the location of their choice, with people they care about. They should have a caregiver, be warm, dry and clean, and have the necessary medication for physical symptoms. “There are no surprises,” she writes. “They have had the opportunity to put their affairs in order. They are able to say those things that need saying. I forgive you. Please forgive me. Thank you. I love you. Goodbye. All these things together – comfort, agency and preparation – provide for what I understand as dignity.”

But it’s what comes next that’s breaking down our traditional ways of thinking about and dealing with death. Increasingly, a generation taught to tread lightly on this earth in life is looking to do the same on the other side of the grave as it questions the need for permanent memorials, costly and potentially ground-contaminating coffins and even embalming.

For Nicholas Lealand, these were neither important nor appropriate. “Embalming, putting make-up on – it is lying to yourself. It is saying he is not really dead or he’s just sleeping. And it always felt really disrespectful for the final act of your existence to be to poison the soil.”

In a natural, green or eco burial, the body is not embalmed – although it may be refrigerated or treated with oils. It is buried in a biodegradable shroud or a box made from cardboard, untreated wood or fibres, then buried in a relatively shallow grave – 60-100cm rather than the traditional 1.8m or six feet under – where there is more biological activity to aid decomposition. Instead of a headstone or plaque, a tree is often planted above the plot, with GPS and map co-ordinates to allow the site to be traced.

Demand for such low-impact burials is growing. The Italian art project Capsula Mundi has designed biodegradable egg-shaped burial pods, in which ashes or a fetal-crouched body can be placed and buried like a seed beneath a tree to offset the person’s carbon footprint and contribute to a cemetery that is more woodland than graveyard. US company Coeio sells burial suits and shrouds lined with fungi and other microorganisms that aid decomposition.

According to Bloomberg magazine, about 8% of the more than 150,000 burials that take place in the UK each year are now natural burials, up from about 3% just three years ago. A 2015 study found that 64% of US citizens aged 40 and over would consider a green burial, up from 43% just five years earlier.

The Kiwi connection

New Zealand’s eco-burial tradition goes back 20 years, when public relations consultant Mark Blackham and his wife, Sola Freeman, wanted to bury their baby daughter in native forest. They weren’t allowed, says Blackham, “but I couldn’t see any practical or sensible or ideological reason why you wouldn’t do it”.

Inspired by the fledgling green-funeral movement in Britain, he began his “infamous round of phone calls” to every council in the country. Nearly a decade later, in June 2008, the Wellington Natural Cemetery at Makara became the first natural cemetery in a city outside the UK.

Today, Blackham’s not-for-profit organisation, Natural Burials, lists six certified natural cemeteries in Wellington, Kāpiti, Carterton, Marlborough, New Plymouth and Westport. Other uncertified natural cemeteries have been formed in Auckland (the natural burial site at Waikumete Cemetery was awarded the Innovation Award at last year’s Cemeteries and Crematoria Collective Conference), Hamilton, Thames, Nelson, Motueka, Dunedin, Invercargill and Whangārei – now home to New Zealand’s first cemetery in an existing forest. Smaller initiatives, such as that at Diamond Harbour, offer eco-burial alternatives, often within existing cemeteries. Some funeral directors are also coming on board, helping clients choose green, low-cost or DIY burial options.

Driving this interest, says Blackham, is concern about the environmental toll of conventional burials. Standard coffins may contain glues, chemical binding agents and metals. Embalming products – and 90% of the dead are embalmed before being lowered into the ground – can include glutaraldehyde, methanol, phenol, paraformaldehyde and formaldehyde.

Forest burial: Mark Blackham and his wife Sola Freeman

A 2017 University of Pretoria study found that even though only about 3% of the formaldehyde used in embalming percolates down through the soil, two of the 27 soil samples studied had concentrations of the chemical considerably higher than what is deemed tolerable by the World Health Organisation. The study also found high levels of various metals and phthalates from the plastic and varnishes used in coffin materials.

Left to its own devices, however, a decomposing cadaver is a high-quality nutrient resource; it has a low carbon-to-nitrogen ratio (good for decomposition) and a high water content. According to the prosaically named Corpse Project in the UK, a cadaver can provide 17 of the 18 elements required for plant growth. Cremated remains, in contrast, are usually of little use in the soil and can be harmful.

A recent report from the University of Sheffield estimates that 0.25g to 1g of mercury from amalgam tooth fillings is released from each cremated body. Though this is a tiny fraction of overall mercury emissions, five European countries have banned or significantly reduced the use of amalgam largely on environmental grounds. Several US states now offer bio-cremation – a chemical process in which bodies are broken down into their chemical components, leaving bones and a recyclable liquid – as a less polluting alternative to cremation.

Young people in particular are influenced by environmental concerns such as these, says Blackham. “They understand the cycle of carbon and nitrogen and want to be part of that cycle, not to turn their body into pollution but to turn it into something that plants and the soil can use.”

For those closer to death, he says, interest in green burials is often driven by more modest ideas around nature and simplicity. “Simple in the sense that there is something simple about reconnecting with nature – it is not an eco-nazi type of thing. They are thinking about their own relationship to the Earth, about their life, about their attitude to life. It is a contribution to the environment, to the growing of a forest and a place of contemplation – a nice place where relatives can come afterwards.”

Editor of Death And Dying in New Zealand, Emma Johnson

Increasingly distanced from death

Returning a shrouded body to the earth is nothing new. The practice is documented in the Bible, the Torah and the Koran. But over the past century, our distance from death increased. We tend to live apart from our families. About 70% of deaths of those 65 and over happen in rest homes and hospitals. Increasingly, the roles of body preparation, transporting, wakes, viewings and even organising a funeral are delegated to professionals.

“When we died at home and looked after each other as family groups, we knew how to do this,” says British palliative-care specialist Dr Kathryn Mannix, who is on a speaking tour of New Zealand. “Now we can take people to hospital to make them better, but we still take them to hospital when we can’t make them better. And they end up dying there, so no one sees normal dying at home any more.”

Instead, our understanding of death is diminished by unhelpful euphemisms, such as “passed away” and “lost the battle”, or hyped up by the dramatic blood-soaked killings dished up by TV crime series or computer games.

“But normal dying is not dramatic,” says Mannix. “The physical process is very gentle – it is really not that interesting unless you love that person. More-open discussions about death and dying will reduce that fear and superstition and allow us to be honest with each other at a time when well-intentioned lies can separate us and waste what precious time we have left.” As she writes in her new book, With the End in Mind: Dying, Death and Wisdom in an Age of Denial, this involves being explicit about the likely course of the illness, the necessary support, the availability of required resources if a person is to die in their home and the nature of dying itself.

British palliative-care specialist Kathryn Mannix.

Some cultures keep a closer proximity to death than others. In Death and Dying in New Zealand, funeral director Kay Paku explains the Māori belief that keeping the body surrounded by loving family and friends “helps to calm and free the spirit”. Throughout Catholic Ireland, says Mannix, when someone is dying, people will call in, talk to the family, say their goodbyes: “They wouldn’t pretend it wasn’t happening.” Emma Johnson recalls witnessing the burning funeral pyres in Varanasi in India. “The realisation we are physical matter becomes very clear,” she says, “whereas for us, a lot of that is behind closed doors.”

Death and Dying in New Zealand swings open those doors. It includes essays on Māori tangi, funeral poverty, cemetery architecture, the workaday world of a coroner and the truly, madly, deeply successful funeral-home series The Casketeers.

Former midwife then hospice nurse Katie Williams recounts the history of her coffin-making club in Rotorua, the “happiest and most enjoyable club” in town. On the phone before giving a TedX talk, she describes the moment in 2010 when she first suggested the idea as a U3A course (an organisation that selects and creates courses for people of retirement years). “There was dead silence – but at the end of the meeting there was a line of people waiting. It is a way of taking control. You are going out in something that means you, not mahogany and gold.”

She describes a man who was close to death, a young father who had never had a go-kart as a kid. “So, we made him a go-kart – he went off in huge style, he had a wonderful exit.”

“Death-positive movement”

“Alone we are born/And die alone”, wrote James K Baxter in 1948, but in planning our own “wonderful exit”, the dying part is becoming a lot more social. The death-cafe movement, launched in England in 2011 to encourage open conversations about dying, is now a global tradition taking place in coffee shops, offices, community halls, libraries and living rooms in more than 50 countries, including New Zealand. Death walkers, death midwives and death doulas now offer their services to assist people through the dying process.

Once a month, about a dozen people turn up at Christchurch’s Quaker Centre to discuss all things related to death. Convener Rosemary Tredgold says it’s an opportunity to discuss issues many haven’t considered out loud. Do you need a funeral director? What sort of coffin do you want? What sort of service? Do you have a will? Do you have an advanced-care plan? Do you have power of attorney? How can you get a cheaper funeral? What’s going to happen when I die?

“If you look back at my parents’ generation, we couldn’t talk about death – one didn’t. It was very, very difficult. When my father died, it was exactly the same as when his father died – you didn’t talk about trauma, about war, about dying. But there is such value in sharing ideas.”

In sharing her ideas, US mortician and self-professed funeral industry rabble-rouser Caitlin Doughty developed a cult following. Her first book, Smoke Gets in Your Eyes, was a New York Times bestseller. Her latest, From Here to Eternity: Traveling the World to Find the Good Death, is pitched as a search for “the good death”, in contrast to American death practices she describes as brief, distant and sterile. Her work has spawned a tell-all “death-positive movement” that encourages people to speak openly about death, dying and corpses (Tenet 1: I believe that by hiding death and dying behind closed doors, we do more harm than good to our society).

Grief specialist Tricia Hendry sums it up as a “happy belligerence”, the result of an ageing population – by 2051, one in four of us will be 65 or over – and a lifting of taboos, “whether it is tampon ads on TV to talking about death and euthanasia. It’s an information age – there’s a lot more information at the click of a button – and because we are living longer, I am conscious of a confidence in older people that wasn’t there a couple of generations before us. There is a fighting spirit now – a sense of life going on for longer and I want to exit it on my own terms.”

Although these terms may include a green or eco-burial, there are drawbacks. Such burials are not cheap alternatives. There are savings from having no embalming, prefabricated coffins and headstones, but imported willow or seagrass caskets can ratchet up the cost and councils still need to charge for land that will never be used again. According to Blackham, natural cemeteries can be a couple of hundred dollars more expensive than a standard interment.

And, because the shallower burials allow only one interment per plot, this does not help those cities fast running out of cemetery space. Today, only 30 of Auckland’s 53 council-owned or -managed cemeteries are operational. Manukau Memorial Gardens has sufficient space for lawn burials until 2035 and North Shore Memorial Park until 2050. Waikumete, New Zealand’s largest cemetery, is expected to run out of new body burial plots – as opposed to ash burials – within the next three to five years. Already, the council has announced it will be seeking feedback on potential new burial areas in the cemetery and different forms of burial, including private and public mausoleums, vaults and “niche walls” for ashes.

“There is not any immediate urgency,” says the newly appointed manager of cemetery services for Auckland Council, Nikki Marchant-Ludlow, “but it is something we need to consider as we grow. We are working on a plan to consider what our options are in terms of utilising the land we have and whether there is any other land we could consider in and around the area.”

To cope with competing demands for land, some countries offer burials for limited tenure, after which the remains are disinterred and reburied deeper or put into an ossuary box.

Families in Spain and Greece rent an above-ground crypt where bodies lie for several years. Once they have decomposed, the bodies are moved to a communal burial ground, so the crypt can be used again. In this country, until the late 19th century, Māori of high status were buried close to settlements, then their bones were disinterred and placed in secret locations.

Rules not okay

Today, burial locations are mandated by legislation. New Zealand law allows a body to be buried in a public cemetery, a Māori burial ground, a religious/denominational burial ground, a private burial place used for burial before April 1965 (with permission from a District Court judge or mayor), on private land if there is no cemetery or burial ground within 32km of the place where the person died or is to be buried (again with permission from the Ministry of Health and the local council), or in any other place if the ministry agrees in advance that the place is safe and appropriate for burial. Burial at sea is allowed at five offshore burial sites around the country with a permit from the Environmental Protection Authority and evidence to show the burial took place at the agreed location, that the casket remained in one piece when it entered the sea and that it sank straight to the sea floor. Since taking over the regulatory role in 2015, the Environmental Protection Authority has received and approved only two applications for burial at sea.

In its 2015 overview of the 1964 Burial and Cremation Act, the Law Commission concluded the legislation is “old, out of date and fractured”. Citing increasing immigration, the changing nature of family relationships, increasing use of cremation and growing demand for eco-burials, biodegradable coffins and DIY funerals, it recommends the law be replaced by new statutes for deaths, burials and cremations.

It recommended extending the power to determine the cause of death to some nurses (this was integrated into an Act amendment last year); loosening restrictions on new cemeteries (although still keeping them under local authority management); and allowing people to appoint someone as a “deceased’s representative” to make decisions about the funeral according to their wishes or tikanga.

It also recommended exploring “alternative methods of cremation” or other means of disposing of bodies. Although applications for cremation on an outdoor pyre, the traditional method of cremation for some religions, are few – the Ministry of Health is aware of only two cremations outside approved crematoria in the past 25 years, both for highly respected Buddhist monks – the Law Commission report suggested this option should not be limited to religious denominations as is currently the case; “rather, it should be the sincerity of the application that is relevant”.

As society changes, such funerary and burial options will need to be addressed at a policy level. On a personal level, to allow for a grieving process that is meaningful and uncomplicated, Johnson is hopeful more people will start discussing their own end-of-life wishes, writing them down, recording them in an advanced care plan.

“Talking about death and about what you want at the end of your own life allows for that resilience in society. Having that open conversation goes on to living life better and being able to grieve in a healthier way.”

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May 20, 2019May 20, 2019

‘It could be any day now’…

Why how you die matters

In a survey at the start of this year, more than 8 in 10 U.K. adults said the role of hospices would become more important in the next decade.

By Dominic Rech

It’s approaching 1 a.m. in Bilborough, a suburb of the British city of Nottingham. Peter Naylor, 70, is slumped in his bed, only yards from the front door of his small bungalow.

He can’t walk, so we unlatch the door and reach him immediately. The low buzz of an oxygen concentrator greets us.

Tubes run around Naylor’s ears and across his face and curl up into his nostrils. Framed family photos are nestled on a shelf by his side, each capturing intimate moments from his life.

We too are experiencing an intimate moment with him — but for an entirely different reason.

He’s dying.

A Nottinghamshire hospice team that cares for the terminally ill is three hours into a night shift. Naylor is the third patient they are visiting.

He’s been struggling with diabetes and has had multiple heart attacks. His breathing is heavy and pronounced. He exhales before opening his mouth slowly to say, “I’m stuck on this bed. I have been for more than one year. I can’t get off. I can’t go to the toilet. I can’t do anything. I just lie here.

“I’m near the end of my life. It could be any day now.”

Outside access to hospice night services, like this one, is unusual given that patients are at a very vulnerable stage of life.

But the hospice team granted CNN access because they want to show how palliative care is provided in the UK and make us think more about the kind of death we want for ourselves and our loved ones. The topic is close to my heart because the team looked after my father before he died this year.

“We all think we are immortal, so we want to put more money into saving lives; no money is being put into palliative care because we don’t accept we are going to die,” said Tracey Bleakley, the chief executive of Hospice UK, the umbrella organization for hospices.

‘It means everything’

Hospices offer specialist care and support to people with terminal and life-limiting illnesses. They coordinate with the UK’s National Health Service to provide care for people who are often in the end stages of life, commonly those who no longer want to be in the hospital and want to receive care at home.

It costs £1.4 billion ($1.8 billion) a year to run hospices, according to the charity Hospice UK. They are funded partially by the National Health Service but rely heavily on fundraising and donations.

During our time with the overnight hospice team, we met multiple people receiving end-of-life care. Given the sensitivity of their personal circumstances, some patients didn’t want to be interviewed or photographed.

Naylor was willing to speak to us. After leaving a care home, the 70-year-old opted to receive end-of-life treatment in the comfort of his own bungalow.

But his condition progressively worsened. On one occasion, he fell while trying to go to the toilet. He was alone and unable to move. It was three hours before anyone came to help him.

As a result, the care he receives has been ramped up, and he not only gets visits from the overnight hospice team but now has a full-time carer who lives with him during the day. The extra support allows him to relax and sleep better.

“It means everything,” he said. “It’s the nighttime when I get frightened, when I am here on my own. But I roughly know when they are coming and can call them if I really need them.”

The modern hospice movement took off in the UK in the 1960s, says Allan Kellehear, a professor specializing in end-of-life care at the University of Bradford. It spread to the United States in the 1970s.

Life expectancy was increasing, and the way people were dying was fundamentally changing, he said. More people were dying of long-term, chronic illnesses such as cardiovascular diseases and cancer rather than infectious diseases.

Hospices took up the mantle of caring for people with these long-term terminal illnesses. Now, there are more than 200 hospices in the UK. The number of hospice programs in the United States has been on the rise since the first program started there in 1974; there were 5,800 as of 2013.

However, in many low-income and middle-income countries, end-of-life care is poor, according to The Lancet Global Health journal. Tens of millions of people in need of palliative care have severely limited access, even to oral morphine for pain relief.

Naylor is adamant that he wants to die in his own home — something that happens to less than a quarter of people in England, according to the UK’s Office for National Statistics.

He’s not alone. Before meeting him on the overnight hospice shift, we visit the home of Harry and Serena Perkins in Nuthall, Nottingham, just before midnight.

It becomes obvious that this visit is a routine one for both the hospice team and the patient.

We are welcomed by Harry’s warm gaze in the hallway. The 96-year-old was an engineer during World War II. After quickly greeting us, he shuffles off into the lounge with his wife.

He has been married to Serena since 1973. They met when Harry was checked into a hospital with pneumonia; Serena was his receiving nurse.

“I would have said this is the finest girl I could have ever married,” he says, perched on the sofa next to her.

Harry, who has bowel cancer and heart problems, uses the day support provided by the hospice once a week, when he sees friends and accesses day therapy. He is also visited by the night support team about 11:30 p.m. every night.

“I thought it was a nuclear bomb that was going to take me, but that’s finished. So it will be my heart or the cancer that takes me.”

Despite his health, Harry seems more concerned about Serena’s well-being than he is about his own.

“We look forward to them coming every night. They are lovely people. They take me upstairs to bed, get me changed,” he says. “But they also talk to my wife. Keep her company, which is very important.”

Serena too is grateful. “I didn’t realize what a weight I had only my shoulders until they came. It’s really given me my freedom back in a way,” she says.

The care helps enable Harry to continue living with Serena in their home. It allows him to enjoy the quality of life he wants.

As we get ready to leave, Harry stands to get ready for bed. He shakes my hand firmly and mumbles a proverb from former British Prime Minister Winston Churchill: “Never give up. Never, never, never.”

Who’s providing the care?

The Nottingham hospice CNN spent time with is a charity.

Although a third of its income comes from the UK’s National Health Service, the rest comes from fundraising; the hospice has to raise an average of £7,000 (about $9,000) a day in order to operate the services it provides, according to Jo Polkey, head of care at Nottinghamshire Hospice. Many hospices across the country face a similar funding shortfall.

“Somebody that requires palliative nursing care is when there is no treatment options left. Trying to make someone as comfortable as possible. We want to add to their lives rather than think of it as the ending,” she says.

Its main service is Hospice at Home, through which more than 60 nurses and health care care assistants provide care at home to people with terminal and life-limiting illnesses. They also provide the overnight support teams, a day therapy unit, and a bereavement care and support service.

“We are often dealing with people very much at the end of life and in the last few days, weeks and hours of life,” Polkey said. “I think our average length of stay [of a patient] is about 26 days. They don’t stay in the services very long before they die.”

What does it take to be a member of a hospice team? One of the first things she says is that they are very “resilient.”

The night shift is arguably where this is most palpable.

‘People die on your shift’

Two overnight carers, Deborah Royston and Sonia Lees, describe the highs and lows of their jobs in between visits to patients.

Aside from the late hours, the job requires a lot of driving, with many of the patients living across Nottinghamshire, a county near central England that is home to just over 800,000 people. The shift usually usually starts at 10 p.m. and finishes before 7 a.m.

Royston says she finds it particularly difficult when she develops close relationships with patients.

“It’s really sad … to deal with death on a daily basis. Sometimes, people die on your shift, but it’s good you can be there for both them and the family members in that time of grief.”

Another visit we made was to the Wollaton home of Linda Wagner, whose husband, Bob, relies on overnight hospice support. He has progressive supranuclear palsy, a rare condition that can cause problems with balance, movement, vision, speech and swallowing.

“I know some people don’t believe in angels. Well, I do, but that is how I would class [overnight carers] — as angels,” she said. “I didn’t know the support was out there before. If I’m struggling, I know there are other people out there going through the same thing. It’s just a wonderful thing.”

Despite difficulties that come with Royston’s field, she described the job as her “passion.” She’s been helping provide night support for 12 years and finds the opportunity to build relationships with patients and their families fulfilling, even though it can be heart-wrenching.

“I just love it. It makes my heart feel good. I get quite emotional about it because you meet some nice, wonderful people.”

A looming crisis in palliative care?

A pun doesn’t always seem fitting when talking about death, but Polkey’s use of one seems to strike a chord: “People are dying to come to our services,” she says.

Over the past three years, hospices have helped more than 200,000 people across the country annually, Hospice UK’s Bleakley says. However, research by her organization in 2017 found that 118,000 people each year could benefit from hospice and palliative care don’t receive it because they live in an economically deprived area, live alone or have a certain type of terminal condition, among other reasons.

Bleakley thinks there is a crisis in palliative care that is only going to get worse.

“We had a massive baby boom after the war, and now those people are starting to die, so we are already going to have an increase in the death rate. We are all living longer, and we are all ill for longer at the end of life.”

The UK’s aging population is only going to increase the pressure, Bleakley says. In 2017, 12 million UK residents were 65 and older: approximately 18.2% of the population, according to the Office for National Statistics.

In a survey at the start of this year, more than 8 in 10 UK adults said the role of hospices would become more important in the next decade.

Bleakley was also worried about what the UK’s planned exit from the European Union might bring.

“Anything that affects consumer confidence, from companies having extra money for supporting hospices financially to people choosing to run a marathon to raise money — numerous things are affected by Brexit,” she said.

“And on the work force side, we will see more members sucked out” of the National Health Service.

Inclusivity challenges

Another challenge for practitioners is inclusivity.

Kellehear, of the University of Bradford, says that not many ethnic minority groups in the UK are accessing palliative care.

Nottinghamshire Hospice’s Polkey noted, “we look after a lot of white middle-class people. However, we are sat in one of the most diverse cities in the country. … We desperately want to reach into communities. Diversity is something we are working on.”

Hospice UK is running a campaign called Open Up Hospice Care to try to address this issue.

“There are people in the LGBT community … minority groups, people in prison — a lot of these people feel that a lot of the traditional services don’t work for them,” Hospice UK’s Bleakley said.

She also says that funding is going to be a fundamental issue for hospices.

The National Health Service’s Long Term Plan, earmarking the UK’s key health plans and priorities for the next 10 years, includes a bigger focus on community care and training people in palliative care, but Bleakley says there is no indication that any more funding would be put into palliative care.

“It costs 1.4 billion (pounds) a year to run hospices, and the NHS is putting 350 million in; they are not putting in the true cost of care or anything like it.” she said.

However, she doesn’t just hold the government responsible. She says society as a whole has to be more engaged when it comes to end-of-life care.

Kellehear agrees. He promotes the idea of compassionate communities and cities, a more holistic approach to palliative care that includes the bereaved as well as those who die.

It is based on the idea that care shouldn’t fall simply to doctors, nurses and the surrounding families of dying people. Instead, the wider community should step in to support people with terminal illnesses.

“We shouldn’t wait for disaster to happen. It’s about going into the schools, going into the workplaces, and saying ‘look, this is everybody’s business. What are you doing to do your bit?’ There’s not enough of that going on in the UK.”

For example, he says, schools should prepare kids for what to do should a fellow student lose a loved one.

“The people we keep forgetting in palliative care is the bereaved, who often suffer from similar social consequences as people with life-limiting illnesses: depression, anxiety, loneliness, social rejection and even suicide,” he added.

“These people are best helped when communities come together to support the people who are at risk of these things.”

Bleakley thinks we need to face up to the reality of death more often.

“A good death is a legacy for the people we leave behind.”

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