What do you want to happen to your remains after you die?
For the past century, most Americans have accepted a limited set of options without question. And discussions of death and funeral plans have been taboo.
That is changing. As a scholar of funeral and cemetery law at Wake Forest University, I’ve discovered that Americans are becoming more willing to have a conversation about their own mortality and what comes next and embrace new funeral and burial practices.
Baby boomers are insisting upon more control over their funeral and disposition so that their choices after death match their values in life. And businesses are following suit, offering new ways to memorialize and dispose of the dead.
While some options such as Tibetan sky burial — leaving human remains to be picked clean by vultures — and “Viking” burial via flaming boat — familiar to “Game of Thrones” fans — remain off limits in the U.S., laws are changing to allow a growing variety of practices.
‘American Way of Death’
In 1963, English journalist and activist Jessica Mitford published “The American Way of Death,” in which she described the leading method of disposing of human remains in the United States, still in use today.
She wrote that human remains are temporarily preserved by replacing blood with a formaldehyde-based embalming fluid shortly after death, placed in a decorative wood or metal casket, displayed to family and friends at the funeral home and buried within a concrete or steel vault in a grave, perpetually dedicated and marked with a tombstone.
Mitford called this “absolutely weird” and argued that it had been invented by the American funeral industry, which emerged at the turn of the 20th century. As she wrote in The Atlantic:
“Foreigners are astonished to learn that almost all Americans are embalmed and publicly displayed after death. The practice is unheard of outside the United States and Canada.”
Nearly all Americans who died from the 1930s, when embalming became well-established, through the 1990s were disposed of in this manner.
And it’s neither cheap or good for the environment. The median cost of a funeral and burial, including a vault to enclose the casket, was $8,508 in 2014. Including the cost of the burial plot, the fee for opening and closing the grave and the tombstone easily brings the total cost to $11,000 or more.
This method also consumes a great deal of natural resources. Each year, we bury 800,000 gallons of formaldehyde-based embalming fluid, 115 million tons of steel, 2.3 billion tons of concrete and enough wood to build 4.6 million single-family homes.
Mitford’s book influenced generations of Americans, beginning with the baby boomers, to question this type of funeral and burial. As a result, demand for alternatives such as home funerals and green burials have increased significantly. The most common reasons cited are a desire to connect with and honor their loved ones in a more meaningful way, and interest in lower-cost, less environmentally damaging choices.
Rise of cremation
The most radical change to how Americans handle their remains has been the rising popularity of cremation by fire. Cremation is less expensive than burial and, although it consumes fossil fuels, is widely perceived to be better for the environment than burial in a casket and vault.
Although cremation became legal in a handful of states in the 1870s and 1880s, its usage in the U.S. remained in single digits for another century. After steadily rising since the 1980s, cremation was the disposition method of choice for nearly half of all deaths in the U.S. in 2015. Cremation is most popular in urban areas, where the cost of burial can be quite high, in states with a lot of people born in other ones and among those who do not identify with a particular religious faith.
Residents of western states like Nevada, Washington and Oregon opt for cremation the most, with rates as high as 76 percent. Mississippi, Alabama and Kentucky have the lowest rates, at less than a quarter of all burials. The National Funeral Directors Association projects that by 2030 the nationwide cremation rate will reach 71 percent.
Cremation’s dramatic rise is part of a huge shift in American funerary practices away from burial and the ritual of embalming the dead, which is not required by law in any state but which most funeral homes require in order to have a visitation. In 2017, a survey of the personal preferences of Americans aged 40 and over found that more than half preferred cremation. Only 14 percent of those respondents said they would like to have a full funeral service with viewing and visitation prior to cremation, down from 27 percent as recently as 2015.
Part of the reason for that shift is cost. In 2014, the median cost of a funeral with viewing and cremation was $6,078. In contrast, a “direct cremation,” which does not include embalming or a viewing, can typically be purchased for $700 to $1,200.
Cremated remains can be buried in a cemetery or stored in an urn on the mantle, but businesses also offer a bewildering range of options for incorporating ashes into objects like glass paperweights, jewelry and even vinyl records.
And while 40 percent of respondents to the 2017 survey associate a cremation with a memorial service, Americans are increasingly holding those services at religious institutions and nontraditional locations like parks, museums and even at home.
Going green
Another trend is finding greener alternatives to both the traditional burial and cremation.
The 2017 survey found that 54 percent of respondents were interested in green options. Compare this with a 2007 survey of those aged 50 or higher by AARP which found that only 21 percent were interested in a more environmentally friendly burial.
One example of this is a new method of disposing of human remains called alkaline hydrolysis, which involves using water and a salt-based solution to dissolve human remains. Often referred as “water cremation,” it’s preferred by many as a greener alternative to cremation by fire, which consumes fossil fuels. Most funeral homes that offer both methods of cremation charge the same price.
The alkaline hydrolysis process results in a sterile liquid and bone fragments that are reduced to “ash” and returned to the family. Although most Americans are unfamiliar with the process, funeral directors that have adopted it generally report that families prefer it to cremation by fire. California recently became the 15th state to legalize it.
Going home
A rising number of families are also interested in so-called “home funerals,” in which the remains are cleaned and prepared for disposition at home by the family, religious community or friends. Home funerals are followed by cremation, or burial in a family cemetery, a traditional cemetery or a green cemetery.
Assisted by funeral directors or educated by home funeral guides, families that choose home funerals are returning to a set of practices that predate the modern funeral industry.
Proponents say that caring for remains at home is a better way of honoring the relationship between the living and the dead. Home funerals are also seen as more environmentally friendly since remains are temporarily preserved through the use of dry ice rather than formaldehyde-based embalming fluid.
The Green Burial Council says rejecting embalming is one way to go green. Another is to choose to have remains interred or cremated in a fabric shroud or biodegradable casket rather than a casket made from nonsustainable hardwoods or metal. The council promotes standards for green funeral products and certifies green funeral homes and burial grounds. More than 300 providers are currently certified in 41 states and six Canadian provinces.
For example, Sleepy Hollow Cemetery, the historic New York cemetery made famous by Washington Irving, is a certified “hybrid” cemetery because it has reserved a portion of its grounds for green burials: no embalming, no vaults and no caskets unless they are biodegradable — the body often goes straight into the ground with just a simple wrapping.
Clearly Americans are pushing the “traditional” boundaries of how to memorialize their loved ones and dispose of their remains. While I wouldn’t hold out hope that Americans will be able to choose Viking- or Tibetan-style burials anytime soon, you never know.
Have you ever thought to yourself, “Man, the beach is awesome, but what if it had more death?” If yes, then oh boy, we have a treat for you. This pink coffin pool float (complete with lid) was created by Canadian designers Andrew Greenbaum and Ian Felton who launched a Pom Pom Floats brand to make their dream come true. It perfectly encapsulates most people’s two biggest fears of being buried alive and drowning. So much fun, right?
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.
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.”
Anthony Lealand
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.”
Anthony Lealand’s boat shaped coffin
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.
Diamond Harbour
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.”
Katie Williams
“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.”
91-year-old was told he was dying, said his goodbyes — and then learned he’ll live
Phil Robinson finds comfort in the chance to watch the squirrels and birds at his home, after being mistakenly told he had only weeks to live last month.
When Phil Robinson, 91, was told cancer had spread through his lungs and he had mere weeks left to live, he said his goodbyes, got his affairs in order and was prepared to die — until doctors told him he was, in fact, cancer-free and could return home.
“I don’t know where I’m going from here. I really don’t know how to handle this at all,” said Robinson.
“I don’t think most people get this chance at all. Never.”
Robinson went to Winnipeg’s St. Boniface Hospital on March 20 because he was having trouble breathing. After several tests, he was diagnosed with pneumonia and admitted to a ward, where he started treatment.
A doctor visited him the next morning with grave news: results of a scan appeared to show the spread of cancer throughout his chest. Cancer in his neck that he’d had radiation treatment for nine years earlier, it seemed, had spread.
“He said, ‘Phil, you’ve got two to three weeks to live.'”
My doctor came round and he said, ‘Oh, Phil. I have one small problem. We made a mistake.’
– Phil Robinson
Robinson, a widower of about 10 years, had his son, 60, with him at the time. Robinson didn’t want to alarm him.
“I said, ‘Well, we’ve got to do something about it.'”
Over the following two weeks, all of Robinson’s friends and family came to his bedside to pay their respects and say goodbye. The hospital chaplain visited him. It took some time for him to get there, but Robinson eventually asked to speak to the medical assistance in dying, or MAID, team.
“I had a wish, because pushing sort of 92 years old, you don’t really mind. You’re due to go if you’re ready to go,” he said. “I wanted to finish it right now and get it out of the way.”
‘We made a mistake’
But a definitive diagnosis of cancer was required before he could be offered medically assisted death, so he went for another CT scan. A different doctor delivered the results.
“He said, ‘Oh, Phil. I have one small problem. We made a mistake. You do not have cancer through your body,'” Robinson said.
“‘You don’t have this anymore, and you never had.'”
“Oh!” he laughed nervously, recalling the moment.
“So all of a sudden I find that my cancer is still exactly where it was around my neck, it’s never moved to anywhere else, and it did leave you in a complete sort of — you don’t know where the hell you go.”
According to the hospital discharge summary, the second CT scan showed his lungs and lymphatic areas had cleared. The signs of the infection — which was originally believed to be cancer — had cleared on the second scan.
His son took him back home on April 8.
“[Robinson had] been seen by the palliative team but now discharged as it appears he has no cancer,” reads his discharge summary.
CBC contacted the Winnipeg Regional Health Authority to ask why additional tests after the first CT scan appear not to have been done before Robinson was told he had only weeks left to live.
A spokesperson for the WRHA said it cannot comment on Robinson’s situation for privacy reasons, and that no critical incident report has been filed.
Robinson has been in touch with CancerCare’s patient relations department to get answers. He hopes someone can offer him some guidance.
‘They’re thrilled that I’m back’
“I am not dying. Nope. I’m here for the long run. I don’t know how long that’s going to be, but I’m here,” Robinson said with a chuckle, then gestured out his window. He’s discovered a newfound easy connection with the backyard wildlife.
“Look at my squirrel — he’s sitting out there on the little thing. You can’t see him, but he’s sitting there, watching us.”
Once home, Phil began sharing the news that he was in fact still around with his friends and family, as well as home-care workers and even the two ladies who clip his nails every two weeks, who visited him in hospital to say goodbye.
“I had hugs like you wouldn’t believe,” he said with a laugh. “They all have the same response. They’re thrilled that I’m back.”
But for Robinson, it’s a bit more complicated, especially when he’s alone with his thoughts. He already faced the difficult task of saying goodbye to everyone he loves: 24 family members and 12 of his ‘secondary family’ of supportive friends, until he couldn’t bear the sadness of repeat visits.
He reflects on his own vitality. At 16, Robinson was a member of the U.K.’s Royal Navy during the Second World War, bringing supplies and refreshments to troops. He travelled from his home in Norwich, England after the war to join the Canadian Army, serving in the Korean War, before joining British Airways as a traffic assistant, and later a pilot for the military.
In his lifetime, he’s lost two wives, two siblings and two of three children to cancer.
“I accept the fact that I’m not dead. But now I’m just scared that I’m going to get sick or something, and everybody will say, ‘He’s dead again. And we’ve already done this.’ It’s confusing as hell.”
Robinson sits on his back patio every afternoon where things are certain: the chirp of birds at the feeder, the sociable squirrels, a rabbit who drops by each day.
“How many people do you know who died and came back? And particularly it was Easter,” he laughed, with a tear in his eye.
“If they were going to write your obituary tomorrow, would you be happy with what they said? That’s an important question.”
On the latest episode of Recode Decode with Kara Swisher, WeCroak co-founder Hansa Bergwall joined Kara in studio to talk about his app, which reminds you about death five times a day.
“One of the things that makes us most unhappy is we tend to get caught up in things that don’t matter,” Bergwall said. “We tend to get caught up in an angry voice or in minutiae or in stress or in tons of things that ultimately aren’t that important to us. And when we remember our mortality, we can take a deep breath and just go, ‘Oh, I don’t have to think about this. I don’t have to engage. I don’t have time for this.’ And move on.”
The app, which uses a picture of a poison dart frog as its logo, is based on a Bhutanese folk saying: “To be a truly happy person, one must contemplate death five times daily.” It pushes quotes about death, loss, and acceptance to users at five randomly selected times every day, between 7:00 am and 10:00 pm.
Bergwall said he and his cofounder, Ian Thomas, are proud that their 30,000 monthly users spend less than two minutes in the app daily. They designed WeCroak to have no advertising or hooks to social media, lest they cheapen the experience or compromise their own values.
“We know what social media is: It’s addictive,” he said. “It’s not really a safe place. If you feel safe there, great, take it there. But we’re not gonna make a button encouraging you to do that. Because we take the responsibility of reminding people of their mortality, which is a vulnerable thing, seriously.”
On the new podcast, he also talked about the “deluded” ways Silicon Valley is trying to hack death and why tech moguls who encourage employees to meditate may be tricking them into working longer hours.
Earlier last month the University of Nottingham published a study in PloSOne about a new artificial intelligence model that uses machine learning to predict the risk of premature death, using banked health data (on age and lifestyle factors) from Brits aged 40 to 69. This study comes months after a joint study between UC San Francisco, Stanford, and Google, which reported results of machine-learning-based data mining of electronic health records to assess the likelihood that a patient would die in hospital. One goal of both studies was to assess how this information might help clinicians decide which patients might most benefit from intervention.
The FDA is also looking at how AI will be used in health care and posted a call earlier this month for a regulatory framework for AI in medical care. As the conversation around artificial intelligence and medicine progresses, it is clear we must have specific oversight around the role of AI in determining and predicting death
There are a few reasons for this. To start, researchers and scientists have flagged concerns about bias creeping into AI. As Eric Topol, physician and author of the book Deep Medicine: Artificial Intelligence in Healthcare, puts it, the challenge of biases in machine learning originate from the “neural inputs” embedded within the algorithm, which may include human biases. And even though researchers are talking about the problem, issues remain. Case in point: The launch of a new Stanford institute for AI a few weeks ago came under scrutiny for its lack of ethnic diversity.
Then there is the issue of unconscious, or implicit, bias in health care, which has been studied extensively, both as it relates to physicians in academic medicine and toward patients. There are differences, for instance, in how patients of different ethnic groups are treated for pain, though the effect can vary based on the doctor’s gender and cognitive load. One study found these biases may be less likely in black or female physicians. (It’s also been found that health apps in smartphones and wearables are subject to biases.)
In 2017 a study challenged the impact of these biases, finding that while physicians may implicitly prefer white patients, it may not affect their clinical decision-making. However it was an outlier in a sea of other studies finding the opposite. Even at the neighborhood level, which the Nottingham study looked at, there are biases—for instance black people may have worse outcomes of some diseases if they live in communities that have more racial bias toward them. And biases based on gender cannot be ignored: Women may be treated less aggressively post-heart attack (acute coronary syndrome), for instance.
When it comes to death and end-of-life care, these biases may be particularly concerning, as they could perpetuate existing differences. A 2014 study found that surrogate decisionmakers of nonwhite patients are more likely to withdraw ventilation compared to white patients. The SUPPORT (Study To Understand Prognoses and Preferences for Outcomes and Risks of Treatments) study examined data from more than 9,000 patients at five hospitals and found that black patients received less intervention toward end of life, and that while black patients expressed a desire to discuss cardiopulmonary resuscitation (CPR) with their doctors, they were statistically significantly less likely to have these conversations. Other studies have found similar conclusions regarding black patients reporting being less informed about end-of-life care.
When it comes to death and end-of-life care, these biases may be particularly concerning, as they could perpetuate existing differences. A 2014 study found that surrogate decisionmakers of nonwhite patients are more likely to withdraw ventilation compared to white patients. The SUPPORT (Study To Understand Prognoses and Preferences for Outcomes and Risks of Treatments) study examined data from more than 9,000 patients at five hospitals and found that black patients received less intervention toward end of life, and that while black patients expressed a desire to discuss cardiopulmonary resuscitation (CPR) with their doctors, they were statistically significantly less likely to have these conversations. Other studies have found similar conclusions regarding black patients reporting being less informed about end-of-life care.
However, in some cases, cautious use of AI may be helpful as one component of an assessment at end of life, possibly to reduce the effect of bias. Last year, Chinese researchers used AI to assess brain death. Remarkably, using an algorithm, the machine was better able to pick up on brain activity that had been missed by doctors using standard techniques. These findings bring to mind the case of Jahi McMath, the young girl who fell into a vegetative state after a complication during surgical removal of her tonsils. Implicit bias may have played a role not just in how she and her family were treated, but arguably in the conversations around whether she were alive or dead. But Topol cautions that using AI for the purposes of assessing brain activity should be validated before they are used outside of a research setting.
We know that health providers can try to train themselves out of their implicit biases. The unconscious bias training that Stanford offers is one option, and something I’ve completed myself. Other institutions have included training that focuses on introspection or mindfulness. But it’s an entirely different challenge to imagine scrubbing biases from algorithms and the datasets they’re trained on.
Given that the broader advisory council that Google just launched to oversee the ethics behind AI is now canceled, a better option would be allowing a more centralized regulatory body—such as building upon the proposal put forth by the FDA—that could serve universities, the tech industry, and hospitals
Artificial intelligence is a promising tool that has shown its utility for diagnostic purposes, but predicting death, and possibly even determining death, is a unique and challenging area that could be fraught with the same biases that affect analog physician-patient interactions. And one day, whether we are prepared or not, we will be faced by the practical and philosophical conundrum by having a machine involved in determining human death. Let’s ensure that this technology doesn’t inherit our biases.
