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.”
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.”
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.”
Even if people have no religious belief in the afterlife, they can’t cognitively imagine themselves as ceasing to exist.
“When you’re gone, you’re gone – just put me in the compost bin.”
California State University psychologist Claire White has heard it before – but doesn’t believe it. On the phone to the Listener, ahead of her trip to New Zealand as one of the guest speakers at the University of Otago’s Science and the Afterlife forum, she says even if people have no religious belief in the afterlife, they can’t cognitively imagine themselves as ceasing to exist.
“It is a universal way of thinking that transcends religious or ethnic belief – that their lives have meaning and purpose that continue after their death. Logically, atheists shouldn’t really care if you dump them in the trash can – but they do. There is a disconnect between the higher-level cognitive belief that there is no god and this kind of cognitive default – that there is something about me that makes me who I am that continues after I die.” This is what is called “psychological essentialism”.
“Even if we believe the soul transcends to heaven, we still go to a grave site because we really believe there is some essence of a person that continues after their death. One of the reasons tree burials and cremations have become popular is because the essence of the person is reflected in that tree or [where the ashes are scattered] along that sea.” Funerary rites acknowledge that legacy and help with the grieving process.
In reviewing funerary practices around the world, White’s team found 97% of the samples studied engage with the bodies of the dead. They touch them, wash them, dress them; they talk, they cry, they say goodbye.
“Which is all psychologically healthy. In the Western world, we are outliers. We are moving from a traditional model to this modern professionalisation of mortuary practices where you pay someone to come and prepare the deceased. There is little contact with the deceased, there is not a lot of emotion – it is done and dusted very quickly. It doesn’t really help the grief experience.”
Nor does it help us prepare our children for death, plan our own funerals or address pressing issues such as diminishing cemetery space.
“People don’t want to think about death – the death of themselves, the death of others. This is one of the main obstacles to top-down change from governments. We don’t plan, we don’t make living wills, children in the US are not educated about death – but how do we explain death to children when we don’t talk about it among ourselves?”
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.
Sometimes death comes like a thief in the night. Other times, there’s a slow and clear buildup. In the latter scenario, one of the benefits – if you can even call it that – is that you have time to prepare for the end of your life.
At some point, it may become clear that whatever healthcare, treatments, medication, or procedures you’re pursuing to prolong your life are no longer effective. You may also come to realize that they’re doing more harm than good – robbing you of the opportunity to enjoy what time is left. When these revelations become clear, the best thing you can do is stop and focus on your quality of life.
As sobering as it is to accept, you will eventually pass on. And either you pass on without any purpose or plan – leaving the burden to your loved ones – or you can take the time to prepare for the end of your life and, in the process, provide a greater sense of closure for everyone involved.
Everyone’s end of life care situation will be different, but here are some suggestions to help you approach this sensitive and emotional time with poise:
1. Have Important Conversations
The first step is to have the right conversations with the right people. When you decide to stop seeking treatment or pursuing certain healthcare options that are designed to extend your life, it’s important that people know.
Your family needs to know that you’re dying – not so that they can feel sorry for you, but so that they may process it in a healthy manner. These conversations are more for your loved ones than they are for you. Set aside some time to speak with parents, siblings, grandchildren, close friends, mentors, etc. You don’t have to be overly sentimental or wise – just be yourself. Honesty will go a long way.
2. Make Your Wishes Known
Now’s the time to make your wishes known. If you’re currently in a nursing home, hospital, or another care facility, it may be wise to move back home. This will lessen your chances of receiving poor care from a staff that may neglect certain important needs. Instead, you can receive personalized care from your loved ones (who are more likely to respect your wishes).
If you haven’t already done so, now’s also a good time to designate a trusted loved one to make medical decisions on your behalf.
“This person, called your healthcare proxy or medical power-of-attorney, is the person who you know will make decisions the way you want them made and who can most easily stand at your bedside, if necessary,” patient advocate Trisha Torrey writes. “Your proxy will need to make decisions for you if you are in a coma, have a sudden heart attack or stroke, experience another debilitating event, and can’t speak. In addition to your primary representative, you’ll want to designate who your second choice representative should be.”
If there are specific details that are important to you, make these clear as well. For example, some people only want certain individuals present when the time comes for them to die. Other people don’t care. Speak your mind now so that you have the chance to die on your terms.
3. Get Financial Matters in Order
Hopefully you already have a last will and testament drafted. If you don’t, go ahead and do so. This will allow you to direct your finances and assets to the right people. It also saves your heirs from having to deal with the legal fallout of an estate that hasn’t been properly accounted for.
4. Secure the Right Burial Arrangements
Finally, be sure that you establish and document your burial arrangements prior to your passing. This is one less thing your family has to worry about. It gives them the opportunity to grieve properly, rather than hurrying around to figure out administrative details.
Leaving With Grace and Dignity
You will leave a legacy when you die. Whether this legacy is positive or negative remains to be seen. By preparing for the end of your life with purpose and dignity, you’ll increase the chances of passing on a legacy that people are happy to attach themselves to. Take some time to think about your wishes and how they can be executed tastefully.
Palliative care is a growing specialty that provides comfort care and that teaches patients and doctors how to talk about patients’ goals for life with serious disease and how to prepare for a good ending.
That’s what the family of a patient told Sunita Puri when she was a resident in internal medicine. They were chilling words for the young doctor as she took over the care of a very sick man on the overnight shift.
To Puri, the patient, who had widespread metastatic liver cancer, appeared to be dying. She tried to talk with the family about forgoing heroic measures, to let him have peace in his last hours. But they were adamant.
“Do everything,” they told her. Hours after admitting him to the intensive care unit, she was overseeing chest compressions to revive him after his heart stopped. “I was blinking back tears,” she recalls. The man died that night.
Few people would say they want to die while undergoing painful last-minute resuscitation or while hooked up to machines in a hospital. Yet it’s the death many Americans end up with. Now a palliative care doctor at the University of Southern California, Puri is fighting for an alternative.
In her new book, That Good Night: Life and Medicine in the Eleventh Hour, Puri writes about how palliative care specialists are working to change medicine from within — teaching other doctors how to talk to patients about their hopes and fears, not just their disease and treatment. Palliative care, she says, gives doctors, patients and their families a new vocabulary with which to talk about the way life’s goals can shift when you have a serious illness and how to plan for a good final chapter.
We spoke with Puri about the field of palliative care and what patients need to know.
This interview has been edited for clarity and length.
What is palliative care, and how is it different from hospice?
Palliative care is attending to the physical, emotional and spiritual suffering of patients and families who are dealing with a serious illness. Hospice is a type of palliative care that we provide in the last six months of life. And I would say hospice is even distinct from end-of-life care, which is really the care of patients in the last days and hours of their lives.
In our country, hospice is overwhelmingly provided in a patient’s home or in a nursing home, whereas palliative care is available at any stage of an illness. And so we can see people in the hospital; we can see people in clinics when they come to see their oncologist or their cardiologist. With palliative care, you can have us on your team just right alongside care like chemotherapy or dialysis — we’re meant to attend to your quality of life. And in an ideal circumstance, we will be there when you decide to transition to hospice.
How common is it now to have palliative care specialists available?
There’s actually very few of us, and many of us are concentrated in the big cities. So in rural areas or in nonacademic teaching hospitals, there’s definitely a shortage of palliative care docs around the country. Our presence and the need for us is growing though. So for example, the American Society of Clinical Oncology now has a recommendation that at the time of diagnosis of a serious illness, palliative care should be involved. Patients with a serious illness can ask for a consultation with the palliative care team if their other care providers don’t bring it up, either in a hospital or a clinic setting.
We have studies that show that for patients with, for example, metastatic lung cancer, if they got palliative care right alongside their cancer treatment — as opposed to just getting cancer treatment alone — the patients actually lived longer and had better quality-of-life scores.
What other advantages does palliative care offer?
I think the emotional and spiritual aspects of it are actually some of the most important supports that we can offer our patients.
One thing my patients tell me a lot is, “Thank you for listening.” And I think there is something about our field — focused on being silent and listening to people — that is deeply therapeutic for the vast majority of my patients. To say, “I’m going to be with you through this whole journey, no matter what the outcome with your treatment, and work with your other doctors to make sure we’re all on the same page about what therapies may or may not actually be helpful to you in the way that you define helpful.” I think there’s something pretty magical about that.
You wrote that when you found palliative care, you were finally able to become the kind of doctor you wanted to be. What did you mean by that?
I grew up the daughter of an anesthesiologist — she was always my first model for what a doctor should be. My mother is very technically skilled, but she is also deeply devoted to the idea that every human being is kind of an embodiment of the divine who she felt she was in service to. So, she really had this beautiful intertwining in her practice of being very scientific but also being very spiritual — being able to take people to the operating room and control their physiology to get them through an operation but also understanding that the body and nature has its limits.
And that’s what I wanted to be: somebody with the technical and scientific command of medicine but who understood that every human life is different from the other. In my medical training, there were so much focus on the technical and scientific aspects. But as I was learning those things, I was not also learning how to talk with someone who has a serious diagnosis. How do you explain to them how their life might change? How do you ask, if this is not something that we can cure, “What would be really important to you in the time that you have?” And this language was not given to me in medical training.
When people get a diagnosis like cancer, they sometimes talk about “being a fighter” or “fighting the disease.” Why do you find that kind of language problematic?
When we think of disease as a battle to fight, you kind of divide people into winners and losers — which is not a mentality I think benefits them.
What’s dangerous is that when we’re talking about a fight, if someone chooses not to “continue to fight,” then people will often tell me, “I feel like I’m giving up.” I have to reframe that for them to say, “You may be a fighter, but your body cannot fight this anymore. Can you hear that distinction between you and the natural limits of your body?” I have found that to be incredibly potent because people can see that this isn’t a personal thing.
You know, you did not deserve to get this horrible bout of heart failure, and your not “beating it” is not your fault.
What are the consequences for doctors and for the patient’s treatment of using this kind of language?
I think people feel an obligation, if they identify as a fighter, to keep trying any and every treatment offered to them — sometimes without a full appreciation of the risks of those treatments or whether those treatments might keep them in a place they don’t want to be, like an intensive care unit, instead of having the opportunity to go home. I think that sort of “fight or give up” mentality is such a toxic binary. And I’ve seen people suffer tremendously because they felt that if they said no to therapy, that they would be letting other people around them down.
From my perspective, when I was in my residency, when I heard those words, I then felt obligated to offer anything and everything to the patient or family — even when I knew that certain treatments were not going to help them but could very well hurt them. So I think hearing those words almost put a stop to any real in-depth conversation about what someone is hoping for and what realistically we as physicians can offer them to fulfill those hopes.
I still regret the ways that I offered therapies to patients that I knew would not be in their best interest. But I didn’t know how to talk about another way when I was in my training.
What kind of therapies might be harmful or not be in their best interest?
Being in a clinical trial is one example of a therapy people often feel they need to take but may not truly be in their best interests if it, for example, requires them to uproot their life and go elsewhere. Or if it has side effects that we may not really know about, because part of the trial is to figure out what the toxicities are.
And the other scenario I’ve seen is people in the ICU with an overwhelming infection or a set of post-surgical complications, and they’re suffering one complication after another, especially if they’re elderly. And we can keep trying to manipulate their physiology, using very powerful medications and machines, but we’re not always as attentive to what someone’s life would actually look like if we were successful in reversing some of the problems that they’re going through.
So when a palliative care team is involved and you have these kinds of difficult discussions early on in a serious diagnosis, what can a good outcome look like for the patient?
The advantage of getting to know people and their family early on when they first get a diagnosis is that we can really help them through their treatment. To think about and articulate what’s most important for them if a specific treatment doesn’t work or if it takes a huge toll on their quality of life. And when we can have those discussions, then a happy ending might be that they have their pain, their shortness of breath, their nausea, all of those things exquisitely well controlled. And they decide on their own terms when to transition, for example, to hospice.
When I was a hospice doctor, I think the best situations were when people were still able to be themselves and participate as much in living as they could — even though their bodies were failing. They could still be cognitively intact. Their symptoms were well controlled. They were in a place they wanted to be in. They were living their lives on their own terms for however long they had. And that to me is what a good ending can look like.
Even other doctors don’t always understand what palliative care is or embrace it. What do you think the obstacle is?
I think doing what we do in our field is a little bit of the rejection of our culture’s idea of what medicine exists to do. I think the public thinks of doctors as heroes that can beat diseases and extend lives. And in many important ways we are heroes. Surgery is safer. Childbirth is safer. We’ve eliminated certain infectious diseases almost entirely because of vaccines. But I think we are not good at knowing what to do when we can’t fix a problem.
For patients who have a terminal diagnosis, what advice would you give about how to decide whether or not to opt for some of the more extreme life-sustaining measures, like going on a ventilator or a feeding tube?
In planning ahead, I always encourage people to think about the quality of life that they value. What are the things that they would be OK not doing? And what are the things that if they couldn’t do them would make their life extremely difficult — maybe even not worth living? And if people can think about their values and their goals in broad strokes, the broad strokes can help inform the more specific question about CPR or a ventilator.
I encourage families to really look to their doctors to guide them. And to say, if there’s a question about going on a ventilator, “Is this for a reversible condition, as far as you can tell, doctor? Or am I taking a gamble, a big enough gamble that he may be stuck on the ventilator forever, and then I would have to make the decision to stop? Tell me more about that.” I think being able to ask your doctor openly and not feel alone in making some of these weighty decisions is extremely important. So there are those two components of it: thinking yourself, “What is the sort of life I value? What would be a life that would be too hard for me to live even with the help of medicine?” And to talk to your doctor, even if you’re healthy right now, because you want to prepare for the storm.
What other advantages does palliative care offer?