Everyone who’s alive now – you, your friends, your family – one day won’t be. It’s an unavoidable fact, and yet we often go to great lengths to avoid acknowledging it. Jules Howard explains why that might be a mistake.
We in the West are, in the words of social psychologist Sheldon Solomon, masters of “burying existential anxieties under a mound of French fries”. But that’s understandable, right? Death is horrible. We live. We die. And then it ends. What possible reason could there be for thinking about death more? Plus, French fries are delicious.
According to some scientists, however, there are advantages to thinking about death more. Psychologists, in particular, point to a number of studies that suggest that thinking about death (‘mortality salience’) can raise people’s self-worth, encourage them to be less money-orientated and even make them funnier. Buoyed by research like this there are social movements, such as so-called Death Cafés and the Death Salon collective, that provide space for people to meet and talk openly about death.
In many ways, groups like these mirror Eastern philosophies, which have urged people to consider death and the frailty of human existence, for centuries.
Buddha, for instance, was an advocator of ‘corpse meditation’ where dead bodies are observed in various states of decay. “This body, too,” one text states… “such is its nature, such is its future, such its unavoidable fate.”
And the very notion of ‘yin and yang’ – the dualistic idea of ‘light and dark’ and ‘fire and water’ and ‘life and death’ – appears to inspire in non-Western audiences a greater appreciation of everyday things than in Western audiences.
So, are we in the West thinking about death wrong? I would argue, no. Because there’s no ‘wrong’ way to do it.
But we could certainly do with thinking about it more. Not loads more, just as much as each of us feels is right. In so doing, our perspective on day-to-day events might be imperceptibly improved. After all, to those of us that know that life is impermanent, the French fries have never tasted so good.
I’ve been interested in death my entire life. I was going to be a mortician, and then I took a grief and loss class in college and switched degrees. I’m now a social worker. But I had always wanted to do something on a macro level to help my community around issues of death and dying.
In 2012, I was completing my social work practicum at a hospice and the team leader there wanted me to do some community involvement work. She told me she’d read an article about a “death cookie” group. I talked to my boss and she explained the correct name for the organization was Death Cafe and told me to get in touch with Lizzy Miles, who had started the cafes in the U.S. that year, after reading about them in the U.K.
It happened to be around the same time my uncle had died of cancer; he’d had a horrible death. So I really wanted to create a group where people could come and talk about death and educate each other. After I emailed Lizzy, she called me and we talked for hours.
She helped me get my first death cafe started in February 2013 at a coffee shop in town. The cafes were starting in LA, Atlanta and New York, but I’m in a small town called St. Joseph in Midwest Missouri, so there were none around my area at the time. At my first death cafe and for the five after, I had two women who would drive 7 hours each way to attend. That showed me how much people needed this safe place to talk about death and dying.
We have coffee and cake at each session and my first cake said “Missouri’s First Death Cafe” on it. I laugh about it now because I got so much cr*p for that cake. I went to a big grocery store and told the lady there that I wanted little headstones on the cake. She got mad and told me it was a family business. I had to explain to her what I actually needed the cake for.
But people still thought we were going there to “drink the Kool-Aid” and die. Before my first death cafe a local hairdresser said that an older woman had read a news article about it and was talking about how it was a morbid group getting together to do God knows what. A lot of people still think it’s a morbid group.
Every death cafe is different in terms of who attends and what the attendees talk about, but we all follow the same rules: It’s not a grief or counselling service, we are non-profit, the cafes are held in an accessible, respectful and confidential space and they have no intention of leading people to any conclusion, product or course of action. We also always offer drinks and nourishing cakes! Having food is very important. It is life sustaining and we believe it helps people to feel more open to talking about death.
There were about 20 people at my first death cafe and their ages ranged from 25 to 70. It’s for adults, so 18 and older but I’ll have people of all ages; the oldest attendee I’ve had was 85. But I’ve only ever had one person come who was terminally ill.
When I host, I have four or five people at each table and at the beginning I ask everyone to start with what brought them here to talk about death and dying. That seems to be the only thing I need to ask.
My dad and aunt came to my first death cafe. My father never talked about death and my aunt hadn’t been able to talk about my uncle’s recent death without crying, so I didn’t know how it would be. But as I was looking around, my dad was laughing with his group and my aunt was laughing with hers. I sat down and heard my aunt talking about my uncle’s death without crying for the first time.
The following week my dad called me and was talking about how you’re not supposed to make any big decisions within the first year of a loss. He then told me he’d learned that from the ladies at his table at the death cafe.
My dad came to every single death cafe I held after that, except one, and he planned his funeral and all his funeral songs. He died three years ago, but his death was easier for me because we’d had all these conversations about it. He talked all the time about how much the death cafe helped him face his own death.
A theme that often comes up is relationships and death. People will talk about losses they have had and how it impacted them. Everybody has experienced a death in their life and most of them have never really talked about it. I had a lady who came in, she was probably in her late 50s and she was really shaky at the beginning. At the end she came and thanked me and said that she had never been able to talk about death with anybody before because in her family it was a “taboo”.
People also talk about what they want at the end of their life. There can be a superstition that talking about death brings it closer, so people avoid talking about it at all costs. But when you don’t plan for the end of your life it can be harmful to your loved ones, or add to their grief. My dad making plans helped me tremendously and it was cathartic for him too.
While there are sometimes tears, most death cafes are full of people laughing and having a good time. I believe that thinking and talking about death helps us to be our authentic selves. It helps us to take our mask off and not take things for granted. We’re often in such denial about death that we hurry through life and don’t appreciate the people in it. At these cafes, you get together with strangers and you’re talking about an intimate topic that most people can’t even talk about with their family. It brings you closer and helps improve your relationships with people.
At the end of each death cafe I ask attendees what their “Aha!” moment has been and I hand out surveys. One of the questions is: “Did your views on death change as a result of the death cafe?” It’s crazy because almost every time people answer something like: “My views on death didn’t change but my views on life have changed.”
When COVID first hit we decided the death cafes had to be online. But it ended up being a blessing in some ways because it meant we could meet with people in different countries all over the world at the same time. Now we’re back meeting in person, but we do have cafes online too.
I’ve run about 45 death cafes since 2013 and the smallest group I’ve ever had was still 10 people. I’ve also had companies ask me to host death cafes for their staff. I had one life insurance company with 1,500 staff and there was a woman there whose son had died by suicide. When I asked if anyone had any “aha!” moments, she stood up and shared how she felt about her colleagues’ reaction to her since she had returned to work.
Being involved with Death Café has taught me to love with my whole heart and that nothing in life is permanent. I’ve learned how to accept change, which can be hard. And, I’ve realized that relationships matter the most in life: my relationship with my daughter and spending time with her. That used to include my dad too, he was my best friend.
As a leader for Death Café, I have learned tremendous lessons from attendees and our followers on social media. I’ve learned that so many things in life are trivial. I don’t really get upset any more. Our views on death usually inform the way we live. When you start to come to terms with your own mortality, it can push you to really live your life and to be the best version of yourself. If you look at life from the vantage point of death you can see how beautiful it is.
Global events such as pandemics can momentarily focus attention on a fundamentally overlooked pre-existing human condition: the sheer inequality of how individuals in power decide who lives and who dies.
By: John Troyer
Pandemics make ignoring death harder to do. That doesn’t mean government officials and friends alike won’t symbolically look the other way or reflexively stare harder at their phones during mortality spike events. But the longer any act of ignoring continues, the more obvious the avalanche of death being ignored becomes.
Ignoring something is, of course, different than repressing it. We are acknowledging its existence by ignoring it. We see death. We understand it happens. All of us know people who have died. Everyone reading these words will eventually die.
Which brings me to our current death moment.
The Covid-19 pandemic is but one example from a long list of morbidity and mortality events that momentarily exposed the politics of death for everyone to see. And by everyone, I mean the citizens of every single country on the planet who are suddenly witnessing what those of us who work in death full-time already knew: Our leaders regularly choose to decide who lives and who dies.
Now flip that last statement into a question and one can begin to see the genealogical shadow of Queens and Emperors: Who lives and who dies? Thumbs up or thumbs down? These are foundational and urgent questions that confront modern governments with choices to make on any given day but especially so during a pandemic. The early AIDS epidemic remains a tragic illustration of how different governments decided that the queer communities watching gay men die in unprecedented numbers could be ignored until suddenly those same governments were dealing with a pandemic that remains with us today.
Thanatopolitics, or the Politics of Death
Who lives and who dies are clearly not new questions, but global events such as pandemics can momentarily focus attention on a fundamentally overlooked pre-existing human condition: the sheer inequality of how individuals in power answer those questions.
And while it is correct to state that all biological creatures die at a certain point, that dying is hardly universal in how it impacts different communities. What I’m saying may not come as a surprise, but it is important to foreground this information as a way of stating that when discussing death in the modern Western world, we are often discussing the politics of death. Even if people do not realize this distinction when talking about death and dying — and many people, I believe, do not — the ways end-of-life trajectories become discussed focus on the dynamics causing that death to happen. This distinction matters since understanding how a person died — the core causation of the death, especially during a pandemic — is often laden with political questions around access to care, medical ethics, and economic stability.
While death and dead bodies are obviously connected, the politics surrounding each remains unique and should be distinguished from one another.
This death politics can properly be called a thanatopolitics, borrowing thanato for death from the Ancient Greeks and working with both Giorgio Agamben’s and Michel Foucault’s ideas around biopolitics and forms of life.
What this thanatopolitics of who lives and who dies — with a heavy emphasis here on the “dies” bit — is not is the related concept of necropolitics. The latter is a distinct and important idea first suggested by philosopher Achille Mbembe that more accurately describes the politics of dead bodies (the necro in Ancient Greek). The thanato/necro distinction is crucial in everyday circumstances since the politics of death is often described using the necro- prefix — and while death and dead bodies are obviously connected, the politics surrounding each remains unique and should be distinguished from one another. Dead body politics and death politics occupy distinct experiences for the average person, and recognizing the difference between what death is and what a dead body is remains profoundly important for medicine, the law, and everyday decision making in places such as hospices.
In my book “Technologies of the Human Corpse” I devote the entirety of a chapter to discussing precisely these distinctions between the bio, thanato, and necro, since the politics of each remains simultaneously always visible (if you know where to look) and completely hidden. The book manuscript was completed in 2019, before Covid-19, but spends many pages discussing the ways AIDS both impacted and significantly changed how funeral directors handled dead bodies, e.g., personal protective equipment, or PPE, an acronym we’re all sadly familiar with by now.
By discussing the thanatopolitics of the early AIDS epidemic (which is still happening, lest anyone forgets), it is easy to see how the Covid-19 pandemic ticks all the boxes as to what contemporary thanatopolitics relies on: social and economic disadvantages that contribute to higher mortality rates, especially in brown and black communities; hundreds of thousands of people dying entirely preventable deaths in populations that become economically acceptable deaths (e.g., the elderly and disabled); access to life-saving medical treatments that significantly favor wealthy communities and nations, and so on.
Where Covid-19 thanatopolitics morphed into something I had not predicted was when the emergence of what I call virological determinism became the logic that almost every local, national, and global governing body used to lay blame for preexisting societal problems. This is a gloss on technological determinism, the tendency we humans have to blame any “technology” for causing our very human-created problems, and works much the same way. By taking a rapidly-out-of-control pandemic and mixing in contemporary health inequalities and unprepared — and sometimes negligible — political leaders, we in the West ended up in this thanatopolitical quagmire.
I say quagmire, since it is unclear right now if and when any of this will actually be “done” no matter the speed with which people want to move on. But there are lessons to be learned, and in this way, thanatopolitics can be extremely productive and useful.
The politics of death become a way to acknowledge all those who died and what should be done in the future to prevent more needless deaths. One of those key lessons includes governmental leaders both knowing about pre-existing pandemic response plans and then using those plans when responding to a non-stop mass fatality event such as Covid-19. In addition to following the already extant response plans, leaders should continue to update and renew those plans on a regular basis. HIV/AIDS taught the world how quickly a virus could adapt to everything we threw at it. I remain hopeful that we reflect on that lesson in the coming decades.
Understanding how a person died is often laden with political questions around access to care, medical ethics, and economic stability.
On March 18, 2020, I flew on a plane from the UK (where I normally live) to my hometown in Wisconsin to help my parents with some health issues. I did not know it then, but this was one of the last planes to make that trans-Atlantic flight for many months due to the pandemic.
On the flight, I read an incisive essay by Michael Specter in the New Yorker on the cascading failures of the U.S. health care system. It ends with the following prediction that presciently understood the who-lives-and-who-dies thanatopolitics that defined the past 18 months: “The bigger question is whether we will learn from the fact that this [Covid-19] pandemic will kill many more people than it had to. I’d like to think we would, but, if the past is any guide, this pandemic will end with a bunch of new commissions and ominous reports. As soon as they are printed, they will be forgotten.”
We can choose to ignore death and the thanatopolitics that choice brings for future body counts. But if Covid-19 has demonstrated anything it is that we do so at our own peril.
We should not assume that people who are near death do not know what we are saying
A very significant change that happened in the last century or so has been the ability of science professionals to see what happens when people are thinking, especially under traumatic conditions.
It was not a good moment for materialist theories. Here is one finding (there are many others): Death is a process, usually, not simply an event.
Consciousness can persists after clinical death. A more accurate way of putting things might be that the brain is able to host consciousness for a short period after clinical death. Some notes on recent findings:
Recent studies have shown that animals experience a surge in brain activity in the minutes after death. And people in the first phase of death may still experience some form of consciousness, [Sam] Parnia said. Substantial anecdotal evidence reveals that people whose hearts stopped and then restarted were able to describe accurate, verified accounts of what was going on around them, he added.
“They’ll describe watching doctors and nurses working; they’ll describe having awareness of full conversations, of visual things that were going on, that would otherwise not be known to them,” he explained. According to Parnia, these recollections were then verified by medical and nursing staff who were present at the time and were stunned to hear that their patients, who were technically dead, could remember all those details.
Death is probably, in most cases, a process rather than a single event:
Time of death is considered when a person has gone into cardiac arrest. This is the cessation of the electrical impulse that drive the heartbeat. As a result, the heart locks up. The moment the heart stops is considered time of death. But does death overtake our mind immediately afterward or does it slowly creep in?
Some scientists have studied near death experiences (NDEs) to try to gain insights into how death overcomes the brain. What they’ve found is remarkable, a surge of electricity enters the brain moments before brain death. One 2013 study out of the University of Michigan, which examined electrical signals inside the heads of rats, found they entered a hyper-alert state just before death.
Despite claims, current science does not do a very good job of explaining human experience just before death:
Researchers have also explained near-death experiences via cerebral anoxia, a lack of oxygen to the brain. One researcher found air pilots who experienced unconsciousness during rapid acceleration described near-death experience-like features, such as tunnel vision. Lack of oxygen may also trigger temporal lobe seizures which causes hallucinations. These may be similar to a near-death experience.
But the most widespread explanation for near-death experiences is the dying brain hypothesis. This theory proposes that near-death experiences are hallucinations caused by activity in the brain as cells begin to die. As these occur during times of crisis, this would explain the stories survivors recount. The problem with this theory, though plausible, is that it fails to explain the full range of features that may occur during near-death experiences, such as why people have out-of-body experiences.
Such explanations are a classic case of adapting a materialist hypothesis to fit whatever has happened. They don’t explain, for example, terminal lucidity, where many people suddenly gain clarity about life.
Research medic Sam Parnia found, for example, that, of 2000 patients with cardiac arrest,
Some died during the process. But of those who survived, up to 40 percent had a perception of having some form of awareness during the time when they were in a state of cardiac arrest. Yet they weren’t able to specify more details.
Arlena Marie from Arizona, Texas, decided to take a leap and ask in Side Hustle Nation, a Facebook group, how to become a “death doula” and market herself as one.
While some were aghast at hearing such a profession exists, others had their interest piqued because, morbid as it sounds, every person on the planet is a potential customer.
The word doula originates from the ancient Greek term doule and translates as a person who serves. Birth doulas are now common and, like midwives, provide services during the birthing journey. A death doula, on the other hand, offers emotional support to people who believe they’re nearing the end of their life and would like to make the days count.
Death is the single certainty in life, yet people continue to fear it instead of preparing for it. I wanted to create a death-positive landscape.
Avril Carr, death doula from Al Ain
While professional moirologists (also known as “crying ladies” in some cultures) have been around for centuries and are hired to wail at funerals, the pandemic has brought death doulas to the fore, as an alternative form of mourner.
Avril Carr is a death doula from Al Ain. She trained as a hypnobirthing teacher, breastfeeding supporter and paediatric sleep consultant, and realised that while a wealth of knowledge is available for the birthing process, the reality of death remains largely ignored.
“We’re suspicious of death, which is interesting because not everyone will give birth, and yet there are countless ways in which mothers and fathers are encouraged to prepare for birth. Death is the single certainty in life, yet people continue to fear it instead of preparing for it. I wanted to create a death-positive landscape,” Carr tells The National.
Having a calm presence to see people through difficult moments and celebrate any glimpses of beauty together is a much-needed trait for death doulas. Carr says the feeling of fulfilment when helping someone with death anxiety is an extremely rewarding experience.
“We care for clients in ways that are personally meaningful and affirming to them. Our focus is assisting people with planning, preparing and processing,” says Francesca Arnoldy, a death doula from Burlington in the US, who also developed the end-of-life doula training programme for The Robert Larner, MD College of Medicine at the University of Vermont.
The most heartbreaking thing is to hear someone say: ‘I wish I had known about you sooner’
Lala Langtry-White, doula
Unlike hospice nurses and other end-of-life support providers, death doulas are emotional companions first and foremost, and must be able to customise their services based on what a person is looking to do to help ease the process.
Planning could involve creating schedules to meet others, having conversations that help with the transition, organising a pre-funeral while the person is still alive and sorting through belongings. Some may even want to make a scrapbook or involve family members to help them through the grief.
The amount of grief and uncertainty the pandemic brought has made many – both the ill and the relatively healthy – want to discuss death and have all their affairs in order, be they practical or emotional.
While stay-at-home measures were enforced in many places across the world, death doulas, like most others, turned to technology and came up with creative ways to virtually bring families together during tough times, making people realise they needed tools and information to bolster their sense of readiness.
Jessica Mendivil, a death doula from California, developed free community calls and training for families to help them cope with the loss of loved ones and general lack of preparedness.
Carr realised that while she missed being physically present, she could still impart training virtually on setting the death space, which included different ways to record one’s legacy and sit vigil when death was near.
Small and Mighty Babies, run by Lala Langtry-White and Joanne Hanson-Halliwell in the UAE, set up and continues to offer an online Love Through Loss community, plus monthly support evenings and access to voluntary bereavement doula support and counselling with The LightHouse Arabia.
It’s a lucrative job, but professionals know it can be a vulnerable and intense journey. Death is still not an easy subject for most people and perhaps never will be, but Langtry-White says the most heartbreaking thing is to hear someone say: “I wish I had known about you sooner.”
The pandemic has forced many to rethink and readjust their present with their future. Some have left jobs that provided steady paychecks and a predictable complacency for unknown, yet meaningful passion projects. Others are are taking more control of their destinies as they see fit. Unwilling to settle in life anymore. So why would you settle in death?
That’s the question Kathy Benjamin, author of “It’s Your Funeral! Plan the Celebration of a Lifetime — Before it’s Too Late,” asks. Amid the book’s 176 pages, Benjamin exposes readers to death in a light, humorous, and practical way, akin to a soothing bath, rather than a brisk cold shower.
The Austin-based writer’s niche is death (her last book centered on bizarre funeral traditions and practices). Having panic attacks as a teen, Benjamin said enduring them felt like she was dying. It was then that she started wrestling with the idea of death.
“I feel like I’m actually dying all the time, so maybe I should learn about the history of death and all that,” she said. “If I’m going to be so scared of it, I should learn about it because then I’d kind of have some control over it.”
It’s that control that Benjamin wants to give to readers of this book. She introduces readers to concepts and steps one should contemplate now, in order to make sure the last big gathering centered on you is as memorable as you and your loved ones wish. Poring over the book, one finds interesting final resting options such as body donation that goes beyond being a medical cadaver, “infinity burial suits” that lets one look like a ninja at burial, but also helps nourish plants as decomposition begins; and quirky clubs and businesses that allow one to make death unique (as in hiring mourners to fill out your grieving space and time, and designing your own coffin).
Now before you think this is all a bit macabre, Benjamin’s book also serves as a personal log so you can start planning your big event. Amid the pages, she offers prompts and pages where you can jot down thoughts and ideas on fashioning your own funeral. If you want to have a theme? Put it down in the book. You want to start working on your eulogy/obituary/epitaph, will, or your “final” playlist? Benjamin gives you space in her book to do so. It’s like a demise workbook where you can place your best photos to be used for the funeral and your passwords to your digital life, for your loved ones to have access to that space once you’re gone. If all the details are in the book, a loved one just has to pick it up and use it as a reference to make sure your day of mourning is one you envisioned.
As Benjamin writes: “Think about death in a manner that will motivate you to live the best, most fulfilling life possible. By preparing for death in a spiritual and physical way, you are ensuring that you will succeed right to the end.”
“Everyone’s going to die, if you’re willing to be OK with thinking about that, and in a fun way, then the book is for you,” she said.
We talked with Benjamin to learn more about the details of death and thinking “outside the coffin” for posterity’s sake. The following interview has been condensed and edited.
Q: How much time did it take you to find all this data about death? You share what was in the late Tony Curtis’ casket.
Kathy Benjamin: I have shelves of books that range from textbooks to pop culture books about death, and it’s something that a lot more people than you think are interested in so when you start doing online research you might just find a list of, here’s what people have in their coffin and then from there, you’re like: ‘OK, let’s check if this is true.’ Let’s go back and check newspaper articles and more legitimate websites and things and those details are out there. People want to know. I think of it as when you see someone post on Facebook — somebody in my family died. I know for me, and based on what people reply, the first thing is: What did they die of? We want these details around death. It’s just something people are really interested in. The information is out there and if you go looking for it, you can find it.
Q: Was the timing for the release of the book on point or a little off, given the pandemic?
KB: That was unbelievable timing, either good or bad, how you want to look at it. I ended up researching and writing during that whole early wave in the summer (2020) and into the second wave, and it was very weird. It was very weird to wake up, and the first thing I would do every morning for months was check how many people were dead and where the hot spots were, and then write … just a lot of compartmentalization. My idea was because people who were confronting death so much, maybe it would open up a lot of people’s minds who wouldn’t normally be open to reading this kind of book, they’d be like: ‘OK, I’ve faced my mortality in the past year. So actually, maybe, I should think about it.’
Q: Is there anything considered too “out there” or taboo for a funeral?
KB: I always think that funerals really are for the people who are still alive to deal with their grief, so I wouldn’t do anything that’s going to offend loved ones. I can’t think of what it might be, but if there’s a real disagreement on what is OK, then maybe take the people who are going to be crying and keep them in mind. But really, it’s your party. Plan what you want. There are so many options out there. Some people, they still think cremation isn’t acceptable. Because death is so personal, there’s always going to be people who think something is too far, even things that seem normal for your culture or for your generation.
Q: You mention some interesting mourning/funeral businesses, but many seem to be in other countries. Do we have anything cool in the U.S. as far as death goes that maybe other places don’t have?
KB: One thing we have more than anywhere in the world is body farms. We have a couple and just one or two in the entire rest of the world. The biggest in the world is at the University of Tennessee. For people who don’t know, body farms are where you can donate your body as if you would to science, but instead of doing organ transplants or whatever with it, they put you in the trunk of a car or they put you in a pond or they just lay you out and then they see what happens to you as you decompose. Law enforcement recruits come in and study you to learn how to solve crimes based on what happens to bodies that are left in different situations. I think they get about 100 bodies a year. I always tell people about body farms because if you’re into “true crime” and don’t care what happens to you and you’re not grossed out by it, then do it because it’s really cool and it’s helpful.
Q: You mention mummification and traditional Viking send offs, what about the burning of a shrouded body on a pyre? Have you heard about that? It was the way hunters were sent into the afterlife on the TV series “Supernatural.”
KB: I haven’t heard of anyone doing it in America but obviously that’s a big pop culture thing. For Hindus, that’s the way it happens in India … you go to the Ganges, and they have places specifically where you pay for the wood and they make a pyre and that’s how people go out. I doubt there’s a cemetery or a park that would allow you to do it in the U.S., but on private land, you’re pretty much allowed to do whatever. I would definitely check on regulations. You would have to get the pyre quite hot to burn the body to ash, like hotter than you think to make sure you don’t get a barbecued grandpa.
Q: In your research, have you come across anything that completely surprised you because it’s so unheard of?
KB: There’s been things like funerary cannibalism, which is where you eat loved ones after they’ve died. But once you’ve read the reasons why different tribes around the world have done it, you’re like ‘OK, I can see why that meant something, why it was meant to be emotional and beautiful.’ Things like sky burial in Tibet, they have a Buddhist monk chop up the body and lay it out for the vultures to come get. Part of it ties back to Buddhist tradition but also it’s Tibet, you can’t dig holes there in the mountains. So, there’s a logical reason for it. When you look at these things that originally seem gross or weird, once you learn the reasons behind them it all comes back in the end to trying to do something respectful for the dead, and trying to give the living that closure.
Q: What are your plans for your funeral?
KB: I definitely want to be cremated. I don’t know if I want people to necessarily come together for a funeral for me but like I have a playlist, and even before the book I had a whole document on the computer of what I wanted. I want all the people to know about the playlist and then they can kind of sit and think about how awesome I am while the sad songs play, and then there’s different places that I would want my ashes scattered.
Here’s a delicate truth: we’re all approaching the ends of our lives. Every day counts us down, it’s just that most of us rarely talk, or even think, about it. And when we do, we feel scared of pain and panic and feeling out of control; afraid of sadness and saying goodbye; worried about deaths we’ve seen on TV or in films.
I’ve worked in palliative medicine for over 30 years, helping to improve the conditions of those nearing the ends of their lives. I’ve sat by the bedsides of scores of dying people and it’s taught me a lot about the realities – and misconceptions – of death.
More than half a million people die in the UK each year and almost all of them from a condition that gives at least some warning that death is approaching. If you knew you had limited time left to live, what would you want to do? Who would you want to be with? Are you keen on hospitals? Could your home be suitable? What’s your opinion about being kept alive on a ventilator, even if you’re unlikely ever to regain consciousness? How much treatment is too much? Are you an organ donor?
Here is some good news: death is almost certainly not going to be as bad as you think. Just like birth, death follows a predictable pattern. Initially, illness reduces people’s energy levels. The mechanisms are complex, but the outcome is that they need more sleep. Naps help, but energy is quickly used up, and another snooze is required.
At the end of life, there’s an exhalation that just doesn’t get followed by an inhalation. As simple and gentle as that.
As time goes by, those naps last longer and change in character. Although the person doesn’t notice any difference, they dip into unconsciousness for a while, so we’re temporarily unable to wake them. At this point, it’s time to switch any symptom-managing medications to a subcutaneous route like a syringe pump, to stop any symptoms from coming back if we cannot rouse the patient when their medicines are due.
If their illness isn’t affecting their thinking, then a dying person will still appreciate their family and friends when they’re awake, the occasional sip of fluid, perhaps a spoonful of something tasty, although people rarely have much appetite. They may stay in bed. They may appreciate peace and quiet, or their favourite music (I’d prefer BBC Radio 4, by the way). The periods of unconsciousness get longer and, eventually, the dying person is simply unconscious all of the time.
Now, the next change begins: in deep unconsciousness, breathing is driven by the only part of the brain still functioning. This produces an automatic breathing pattern that cycles between deep, sometimes noisy breathing and very shallow breathing. The rate also alternates between fast and slow; there can be gaps that are several seconds long. Saliva may gather in the throat, causing air to bubble through the fluid, which makes a rasping or rattling noise. These noises are a sign of deep unconsciousness, not of distress.
At the end of life, during a phase of slow, shallow breathing, there’s an exhalation that just doesn’t get followed by an inhalation. As simple and gentle as that. Sometimes so gentle that the family around the bed doesn’t notice. No pain or panic; no sense of loss of control. This is what the vast majority of people experience.
By knowing this gentle pattern, dying people can make choices about where and how to be cared for. Their families are often asked to report dying people’s wishes. Do you know the answers? Does your family know yours?