Can a shift in the way we treat death and dying improve our lives while we’re still here?
A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death
These days, for the most part, the concept of death is consumed by health care and medicine.
However, as humans we need to view death as more than just a medical event. It takes into account our psychology, spirituality, philosophy, social worlds, and personal lives.
This reconsideration should also apply to the way we treat people who are dying. Life is in the senses, not just our physical capabilities.
BJ Miller: Health care, medicine in our country is a giant, colossal thing. And it’s got a ton of momentum. And medicine has become– the domain of death is more or less ruled these days by health care. In times past, it’s been the church, or the family was the sort of center of all this.
These days, it’s mostly medicine. But what’s really important in all this is that we people, we humans, we patients, loved ones, we need to kind of take back the subject on some level– that dying is not just a medical event. It’s way bigger than that. It is all-encompassing. It’s where everything comes to account– our psychology, our philosophy, our spirituality, our social world, our intrapersonal lives– all of it. The medical piece is a little itty bitty piece. It just gets too much attention.
So I’ll just think about the emotions for a second. For one thing, to remind ourselves– for me, the difference between emotion and a thought is you can control your thoughts. You can’t really control your emotions. Emotions are much more slippery. They’re going to have their way with you. So you ignore them at your own peril.
That’s one thing to get across. But I also say that to let us off the hook. The way you’re feeling, on some level, isn’t your fault. And one of the things I see that happens a lot around this subject– again, we’ve talked about how one can be made to feel ashamed to be sick, ashamed to be dying, like we’re failing, somehow.
I want to make sure that we all understand, there are certain things that are way beyond our control. And that means– that may be hard to swallow, but it also means we’re off the hook. It’s not my fault, the way I feel. I shouldn’t have to hate myself or be embarrassed about it. So let’s set some ground rules.
And there’s this other layer that is particularly vexing, which is how others start treating you. And it’s very common, under the banner of sanctity or wanting to protect someone, to– I watch people, they stop telling jokes. Maybe they think it’s sort of sacrilegious to try to be funny around someone who’s sick. Or maybe they don’t talk about their own joys that they happen to have in their day while their colleague is meanwhile miserable with a fever or something. They don’t feel like they should talk about their own joys. Or I don’t know, whatever it is– pick anything.
But one of the things that ends up happening is we end up accidentally making life even harder for each other by keeping the truth of the situation at bay. All right? So these are the ways we die before we have to die. We die before we have to die because no one tells jokes to us anymore because they don’t think we’re going to want to laugh, or that sounds perverse.
Or maybe our partner stops the intimacy. Physical intimacy might dry up, or sexuality. The idea that a disabled person can be sexual, that’s still a novel concept. Just look at most exam rooms in a doctor’s office or in a hospital. Most of them are not even wheelchair-accessible.
My mother uses a wheelchair. They used to just assume she wasn’t having sex, so they wouldn’t offer her a pap smear.
And so one of the things you want to avoid if you plan for your death is you want to– ideally, we come to our death without piles and piles of regret. So when I’m working with patients, especially upstream of their death, I’m always encouraging them to feel things, enjoy the body they have while they have it, appreciate their body while they have it, because it’s someday going to go, and you’re going to miss it.
So touch is just profound. It’s elemental. It is, even if you think about, I think, the scourge of dementia, for example– and a lot of us are terrified of this eventuality. We’re going to lose our minds. Yeah. And it’s hard. And that is a very difficult prospect. And I’m also pretty convinced that there’s a life on the far side of our intellect.
And for me, that life is in the senses. As long as I can feel something, I’m interested in being alive. I’m even more interested in that than a thought.
The dinner table is the most natural place for human connection and difficult conversations.
80% of people want to die at home, yet only 20% of people do.
This statistic is what helped the founder of Death Over Dinner, Michael Hebb, to recognize the opportunity in creating meaningful conversations around death… over dinner.
“The dinner table is the most natural place for human connection and difficult conversations. The comfort of food and drink goes a long way toward taking the edge off of this topic,” says Hebb.
What is Death Over Dinner?
Death Over Diner was launched in 2013 as an extension of a conversation with friends and colleagues around things that matter. It turned out that amongst topics, death was a central theme –– the fears most harbor about it, both for ourselves and those we love.
The Death Over Dinner website walks individuals through how to host their own dinner, including choosing something for your guests to read, watch, and listen to prior to the dinner.
Since launching, Death Over Dinner has become a global phenomenon, with people holding death dinners every day all over the world. From New York to Seattle, and everywhere in between, more than 200,000 people have used DeathOverDinner.org to talk about:
· Life wishes especially in final days
· End-of-life care desires
· Palliative care desires
· A living will
· Their own mortality
· Fear surrounding death
· and more.
Collaborators including Chase Jarvis, Arianna Huffington, Dr. Oz, The US Surgeon General, and Former Senate Majority Leader Bill Frist have all hosted robust conversations over dinner, as well as have set up an online tool to help others have this important conversation. In 2017, Death Over Dinner joined social wellness venture RoundGlass to expand their mission and reach.
To get a better understanding of how (and why) this started, what is happening now, and where it is going now that the death wellness movement is in full swing, let’s dive in to some questions.
How did Death Over Dinner Begin?
Death Over Dinner actually began as a graduate course Hebb taught at the University of Washington in the Communications Department.
Over a four-year time period, Hebb and a variety of different students and collaborators including Chase Jarvis, Arianna Huffington, Tom Kundig, and Kate Bailey, explored how they could scale meaningful dinner table conversations about critical issues we face as humans.
In the second year, they landed on death and end of life as the primary topic, inspired by the tremendous gap between what people want at the end of their lives and what they get.
The life changing statistic that 80% of people want to die at home yet only 20% of people do was the primary inspiration for the future of Death Over Dinner.
Death literacy was at an all-time low, and open conversation could potentially revolutionize the health care system. The team recognized that a grassroots movement was needed.
Since then, Death Over Dinner has spread across the world, with people holding death dinners every day across the globe.
How Many Death Over Dinner Events Have Been Held?
Since the events are independently organized and people re-use the resources multiple times for multiple dinners, it will always be difficult to know the precise number of dinners held.
The conservative estimate is that 200,000 dinners have taken place, which means that roughly 1 million people have sat down and had the experience of talking about death with others in their family and/or community.
Regional partners have helped launch platforms in Australia, India and Brazil and two years ago the Jewish Edition of Death Over Dinner was launched in partnership with about 30 rabbis.
The Healthcare Edition build in partnership with the Cleveland Clinic is currently in beta and being tested by dozens of the leading health care systems in the US.
For the founder, Hebb, there is nothing more thrilling than to sit down with doctors and nurses and see precisely how meaningful these conversations are to those who are facing death everyday.
How Do The Death Over Dinner Resources Help People Facing Death?
Let’s face it, no one is truly an expert on death. Few people have experience with death and many choose to run far from a conversation about it. End of life conversations are inherently difficult to initiate and can be stressful to navigate for anyone.
That’s why Death Over Dinner strives to make the process crystal clear, and formulated the concept similar to a board game. When you know the rules, it’s easier to relax and just play.
Designed to be held without facilitators, Death Over Dinner gives a little guidance to get started. From there, people intuitively know how to talk about what is most important to them.
Vulnerability is unquestionably the winning move in the Death Over Dinner “board game.” The questions Death Over Dinner prompt allow people to drop their armour and open up about their fears.
Death Over Dinner encourages people to not edit their responses and to say things they are afraid to say. Doing this brings individuals closer to knowing their priorities, and it brings them closer to the people in their life.
Why Are Death Over Dinner Conversations So Important?
The impact of grief on our well-being can be detrimental and difficult to calculate.
Roughly 25% of us are actively grieving, which begs the question, how are we grieving? If we don’t know our loved ones wishes, will we grieve longer and more intensely? Will we carry regret and have difficulty letting go?
Not to mention that the end of life expense is the number one cause of personal bankruptcy in the United States.
However, when we face our mortality, there are many beautiful things that happen.
“There is no better medicine than end of life awareness to give you clarity about what is truly important to you, your values, your priorities, how you want to live. Life becomes more clear and sacred when we thoughtfully and intentionally face our impermanence,” says Hebb.
Studies done by Dr. Jordana Jacobs and other leading psychologists prove that talking about death actually increases our capacity to love. Other studies have shown that we become funnier and laugh more easily after being primed for death.
“There are two basic motivating forces: fear and love. When we are afraid, we pull back from life. When we are in love, we open to all that life has to offer with passion, excitement, and acceptance.” John Lennon
What’s Next For Death Over Dinner?
When Death Over Dinner was created, Hebb’s moonshot was that they could find a way into the center of the American medical establishment and inspire clinicians to talk about death in an open hearted and vulnerable way.
Knowing that oncologists, nurses, survivors and cancer patients are breaking bread every month at Memorial Sloan Kettering takes Hebb’s breath away when he gets present and lets it sink in.
“To think that we are really just at the beginning seven years after we launched, just starting to crack open the potential of this conversation, that is awe inspiring,” says Hebb.
Since the launch of Death Over Dinner in 2013, death literacy in the US has increased, and people are beginning to make more empowered decisions. The global death wellness movement and conversations around end of life are now front page news.
People are getting more creative, using their imagination for planning their last chapter and planning memorials.
There’s a shift from a reactive to a proactive approach to end of life well-being, and the movement is just getting started.
Updated 10/24: On October 12th, Governor Newsome unexpectedly vetoed SB 305, citing conflicts between state and federal laws as well as potential loss of federal funding. He did so “begrudgingly,” calling the federal government’s position on cannabis “ludicrous.”
The awkward legal-ish status of cannabis is something that affects many. And out of those, perhaps terminal patients are the most in need. When someone is painfully dying in a hospital, they are generally pumped full of drugs that often leave them barely conscious, or fully asleep.
Ryan had stage 4 pancreatic cancer that had reached the point where he needed professional care, but his only option to treat the intense pain was morphine, and even fentanyl—which is up to 100 times stronger than already-potent morphine—leaving him barely conscious, or asleep. The last days of his life were being stolen, and he wanted all the coherent time he could gather to spend with his 9-year-old son
So Ryan asked his father, Jim Bartell, to get him off the pharmaceuticals so he could function in some capacity during his last days. Jim located a hospital that would allow cannabis, and Ryan was promptly transferred to it. On the first day that Ryan was allowed cannabis, they had to spray a tincture under his tongue because he couldn’t even swallow.
But by the next morning, he was reportedly alert, talkative, and pain-free. Ryan was able to spend his last two and a half weeks of life chatting on the phone and taking visitors—connecting, laughing, and taking the precious time to say goodbye.
But Jim Bartell’s mission had just begun
Ryan Bartell passed away on April 21, 2018, but Jim wasn’t done with this issue. He drafted a bill that would allow terminally ill patients to use medical cannabis in hospitals.
In an interview with Leafly, he shared that as President of a San Diego firm that handles things like government PR, he’d been prepared for this mission—he’d already reviewed hundreds of government bills over the years.
After three long months of research and another three weeks of drafting, he took SB305 to Senator Ben Hueso at the end of 2018. Sen. Hueso agreed to sponsor it, and Jim and his staff continued to work together near daily until SB305 was submitted in February. Much of the pushback came from the California Hospital Association, who feared that they would lose federal funding as cannabis is still federally classified as a Schedule I drug.
But they worked through the opposition, drafting the bill so if the government were to change position and enforce federal prohibition against cannabis—then that hospital would be suspended from compliance.
And on September 11th, 2019, the California State Legislature unanimously approved their Senate Bill No. 305, which was aptly, and powerfully, titled “Ryan’s Law.” It’s now on its way to California’s pro-cannabis Governor Newsom, who is expected to sign it in the coming weeks. If all goes as predicted, it will come into effect on January 1st, 2020.
This means that starting next year, terminal medical cannabis patients with a prescription will be able to use cannabis in forms other than smoking/vaporization in hospital care. Cannabis will be procured by the patients, not the hospital. Hospitals will not be allowed to interfere with its administration, but will be allowed to help if needed.
Next steps for Ryan’s Law
Jim doesn’t plan to stop there. He says that this issue is affecting people like Ryan, and the people who love them, all over the country—so he’s doing something about it. First steps are to take on the geographically (and politically) close states of Oregon and Washington. And now they’ll only have to amend the bill with state-specific health codes instead of starting from scratch. Hopefully these states align quickly, and others as well.
Medical cannabis may be legal in many places, but patients in need of this medicine still face obstacles in terms of using it when and where they need it. While the chronically ill and those still in the fighting stages of diseases aren’t yet protected, this is an encouraging step in the right direction.
While some other states have on the books that they allow cannabis in hospitals, this will be the very first law that requires allowing it. Finally.
Even with such strict laws in place, a massive library of studies supporting the power of medical cannabis have amassed over the decades. It’s beyond time that medical cannabis became more accessible.
As a teenager, I frequently walked to St. Stephen Cemetery after school to sit by my mom’s headstone. She died in a car accident when I was seven and I didn’t fully understand it enough to confront what that meant for me until adolescence.
That was the memory that jarred me when my husband sent me an announcement for a movie to be shown in Linden Grove Cemetery. He thought it might be fun. I didn’t like the idea of movie night in a place of mourning. It seemed flip. Disrespectful at the least. An exploitation of death at worst. I envisioned strangers using headstones as seats to keep their bottoms clean and dry while they munched popcorn and enjoyed themselves. It bothered me. I had questions. Luckily, I knew just who to ask.
Cole Imperi is not only a friend but a leader in the death community. She’s a Thanatologist, an expert on death and dying. She also happens to be the Vice President of the Board of Overseers of Historic Linden Grove Cemetery and Arboretum. Imperi helped me understand what I was missing.
Two things I learned right away. One: movies are shown on five acres of greenspace where there are no burials. Two: the cemetery is essentially full. Those two statements seem contradictory to me. How can you have five open acres but still be considered full? Easy. There’s an underwater spring in the greenspace area and any attempted burial would be submerged in water. That means plenty of respectful room for movies and other events.
Cole Imperi
The next thing Imperi helped me understand is this conundrum: when a cemetery can no longer perform burials, how does it afford the maintenance and management of a 22.5-acre graveyard that’s over 175 years old? This struggle isn’t unique to Linden Grove Cemetery. Many older cemeteries face this same predicament. Historic Linden Grove was consecrated in 1843. It’s hard to imagine them not being full.
Whose budget carries the line item for cemeteries? I assumed either it fell on the municipality or whichever religious institution founded it. The truth is, it depends. Some cemeteries, like St. Stephen where my mom is buried, are the responsibility of the Catholic Diocese. Linden Grove Cemetery, however, has a more complicated history of ownership and disrepair. These days the Board of Overseers manages and operates the cemetery with some funding from both the City of Covington and Kenton County. However, that funding does not cover everything.
The next assumption I had to confront was that cemeteries are a somber place of mourning for everyone. That’s simply not true. Linden Grove Cemetery has walking trails and Pokemon Gyms, and it hosts events like movie nights and even an upcoming car show. This is nothing new. Imperi is quick to say, “Cemeteries were our first parks.” Historically, before we had museums and public parks, we had cemeteries. People would take quiet walks among beautiful sculptures. Families would picnic on the lush lawns and there were even carriage races and hunting happening in cemeteries.
Cole Imperi and Bonnie Jean Feldkamp
“Civic engagement and history connects in the cemetery,” says Imperi. Linden Grove Cemetery is so close to both St. Elizabeth Hospital and Kenton County Administration that it’s the place many go for their lunchtime walk on a nice day. The Pokemon activity even prompted a group of players to reach out to the cemetery and volunteer their time in appreciation. On the hottest days of summer, thanks to greenspace, the cemetery stays a whole 10 degrees cooler than the surrounding urban streets. This provides those without air conditioning respite from the heat in a beautiful park-like setting.
My initial perspective was an emotional one, born of fear that stemmed from traumatic childhood experience. My knee-jerk reaction was to internalize and judge. I’m glad I stopped and took the time to reach out to my friend Cole Imperi to learn more. Not only did it ease my pain, but it gave me a different outlook on cemetery experience. Our society likes to separate death from life as something of lore and gore, especially around Halloween time. But death is a part of life, not apart from life. We can honor that connection at our community’s cemeteries.
Everyone is at least a bit afraid of dying. Yet that fear is the driving force behind so much of life. Anything we achieve is because we know death will come: forming relationships, writing books, having children…these are all a result of our fear of an inevitable end.
Perhaps, with infinite time on Earth we’d put far less work into living. A healthy awareness of our own mortality in our daily lives, then, can be a good motivator. But when is it too much? The answer, especially for people like me with obsessive compulsive disorder (OCD), is when it becomes an obsession.
For as long as I can remember, I’ve suffered with OCD. Like many others, my intrusive thoughts revolve around death-adjacent topics. OCD presents diversely but, simply put, sufferers have intrusive thoughts that they cannot control. In an attempt to control those thoughts, they’ll perform compulsions.
My own death didn’t necessarily frighten me. For a child plagued by constant, violent images and compulsive behaviours, it seemed a bit too much like freedom to be scary. It’s no coincidence that, held prisoner by intrusive thoughts and compulsions, people with OCD are 10 times as likely to die by suicide.
Integrative psychotherapist and OCD specialist Craig Shirley of the OCD Treatment Centre tells me that my experience is common. He says that many people with OCD don’t fear death so much as they fear the uncertainty and the idea of “missing out on life”.
“People with OCD often want to be able to have complete certainty around particular things, which of course in this case they can never have,” Craig adds.
Twenty-six-year-old Zoe tells me that she developed OCD shortly after her grandpa died. “My family has always been my safety net, and my grandpa’s death woke me up to the fact that that could all slip away,” she explains. “I remember watching Mulan, the scene where the ghosts of her ancestors are fighting in the temple. I had a panic attack knowing that if my family died, they would not come back as quirky ghosts. They’d just be gone.”
Zoe adds that she became desperate for things to go back to how they were before, which led her to perform rituals to “heal” her family. “Because change, illness and death are inevitable, I became hysterical as the initial rituals became ‘less effective’. I revised them all the time, my routines becoming longer and more obvious to everyone around me. This only worsened after I saw my nana die a couple of years later.” This perceived responsibility to “help” everyone at the expense of your own mental health is common with OCD sufferers – we often believe that we’ve somehow been tasked with saving everyone through our rituals.
As a child, I would obsess over my own demise, keeping extensive diaries so that I could remember everything I’d ever done. I tried to control the inevitability of death, making promises to an imaginary OCD God to be good, to do my rituals as long as nothing harmed me or my loved ones.
While Zoe has had therapy that’s brought her rituals under control, she still obsesses over death and health. “In the last five years I’ve had two friends die and in the aftermath I went crawling back to some of the rituals I performed as a kid, like a comfort blanket. I felt responsible and tried to redeem myself,” she says.
Similarly Suzi, 32, who is Catholic, told me that while death was a constant spectre for her, the idea of heaven placated her anxieties. After getting treatment for OCD, she found that in overcoming her obsessive thoughts and OCD-related rituals, she also lost the Catholic rituals she had always fallen back on.
With that loss of faith, Suzi says she also lost the “safety net” of heaven. “My OCD has always been centred around fears for my own wellbeing, and not trusting others with it. I was terrified of suffering, pain and death. I no longer knew what happened when people died, and I struggled with the concept of people not having a soul, of my conscious mind ceasing to exist when I died.” She adds that after being diagnosed with chronic illnesses, her fear has transformed. “Where once my fear of death was about what happens after people die, it’s now about not achieving the things I want to.
A sudden death scares me less than the knowledge that my life will end and I have no control over when. As a child, I would obsess over my own demise, keeping extensive diaries so that I could remember everything I’d ever done. I tried to control the inevitability of death, making promises to an imaginary OCD God to be good, to do my rituals as long as nothing harmed me or my loved ones.
This fear hasn’t gone away. However, experiencing actual loss in my life has turned death from a haunting spectre into a very real, looming possibility. It has also made me aware of how badly I handle grief, which makes the possibility of dying scarier.
The more I enjoy something – a person’s company, a moment in time – the more aware I am that everything is temporary. We cannot control that inevitability and as an adult, I know that, so the way my obsessive thoughts manifest is different from the rituals I used to have. I try and fit as much as I can into my life, to the point of obsession. I record everything. If I have dinner with my grandad, I’ll note down the things he says afterward, unable to enjoy the present for fear of the future. Transience is scarier to me than death; the idea that anything we love can be ripped from this Earth at any moment is at once what drives and paralyses me. The rise of an insistent obsession seems gradual until the point where it takes over everything.
Despite the fact that around 1.2% of people in the UK live with OCD, it’s still one of the most misunderstood and misrepresented disorders.
The experience of having intrusive thoughts is difficult to explain to someone without OCD. Imagine you’re having a relaxing time, say a nice bath. Out of nowhere, you’re hit with a graphic image of a dead loved one. It’s upsetting, no matter how often you’ve experienced it. So to get rid of the thought, you might perform a compulsion, like counting everything you see. While my compulsions have gotten better with time, my obsessions have not. Whether it’s images or troubling thoughts, I feel like I have no control over what I think about.
Despite the fact that around 1.2% of people in the UK live with OCD, it’s still one of the most misunderstood and misrepresented disorders, which makes it difficult for sufferers to be honest. Confessing to a friend that you obsess over violent images against your will is daunting. It leaves sufferers feeling lonelier, which serves to exacerbate the disorder.
I spent the first few years of my life in the dark about my condition, thinking that I was “wrong”. In the media, OCD has typically been represented as an obsession with cleanliness. While that is sometimes the case, the ‘compulsions’ – the only visible part of OCD – are often the least harrowing. What goes on in a sufferer’s brain is for many the worst part of the disorder, and harder to represent.
OCD is a way of trying to control an uncontrollable world. Loss is the most unruly, devastating thing we can go through. Perhaps that’s why entire religions have organised around trying to make sense of it.
Of course, not everyone who’s afraid of death suffers from OCD. Craig tells me that the noticeable difference is about “how much time the OCD is taking up of someone’s life”.
He says that while many people without OCD want reassurance or ruminate over things, you know if you need to seek help when the symptoms are “getting in the way of everyday activities” or if you’re “becoming increasingly obsessed around a particular theme or worry”.
When you’re constantly assaulted by painful thoughts against your will, it might seem counterintuitive to seek them out. But with OCD, the most effective form of therapy is Exposure Response Prevention, wherein a sufferer confronts images and situations that they find uncomfortable and ignores the urge to perform compulsions.
Zoe tells me that a combination of therapy, talking to fellow sufferers and discussing death openly has made her rethink dying. This works for me, too.
The one thing that has helped me to feel more in control of my thoughts has always been learning. That can take many forms: educating myself on my disorder but also educating myself on what I fear. When I was so scared of arson that I would go home to check if my house was on fire, I taught and reminded myself of the (slim) possibility of that ever being the case.
And so, to deal with my fear of death I started to learn more about death positivity. First, I did this through Caitlin Doughty, the mortician and YouTuber. After reading Doughty’s books, I learned that she got into the death positivity movement when she developed OCD after seeing a child die aged 8. Her fear of death, and her rituals surrounding it, forced her to confront her fear head-on. Now she has three books under her belt and an impressive career tackling “death denial”.
The one thing that has helped me to feel more in control of my thoughts has always been learning.
From there, I read more and more about death, death rituals and the way other cultures embrace and accept death. I took practical steps, like thinking about what I want when I die. Sure, it’s morbid. But it makes me feel less as if I’m leaving this Earth against my will.
Now, I genuinely believe that my OCD was worsened by our culture of silence and denial around death. We often describe death in euphemistic terms – people “go to sleep”, they’re “in a better place”, etc.
Open conversation about death has been promoted by death acceptance advocates like Doughty’s collective Order of the Good Death, but the movement is still “alternative”. Being euphemistic only makes us deny death more, but it’s been proven that open, non-euphemistic conversation informs people and goes some way toward preparing them for the unimaginable. It makes us more able to handle grief.
The rise of death doulas, who coach people through dying, points to a more accepting attitude towards death. Death doula Shelby Krillin tells me that she frequently encounters people with OCD who have anxieties around death, and that it often stunts our ability to grieve. “It hinders deep conversations and connections with the ones we love who are dying, and the side effect is superficial conversations. When that happens, feelings, wishes and thoughts go unexpressed,” she tells me, adding that sitting with death is “true vulnerability.
She points to the Buddhist attitude of “embracing the groundlessness of life” as a pointer for starting to discuss death. “What we don’t know, we fear. Talking about death gives it three dimensions. You get to look at it from all angles. When people start truly grasping their own mortality, it makes our lives more vivid and wondrous
Like many anxious people, I fill in the blanks with the direst consequences imaginable, a process known as catastrophising. If my boyfriend is at the shop too long or my grandad doesn’t answer the phone, my brain tells me they’re dead. If my dog is sick, she’s dying. If I smell smoke, my house is on fire. Filling in the blanks with the truth and soothing myself with facts is reassuring.
Craig tells me that honesty is the best approach. “Accepting death isn’t necessarily about just finding a different way of looking at it, but also about accepting more deeply the things that we as human beings can and cannot control, and learning to accept that,” he reflects.
Accepting the things we cannot control is a necessary part of overcoming most manifestations of OCD. As death acceptance becomes less alternative, it’s my hope that we can all learn to talk openly about the inevitable end we all face and my belief that a culture of honesty might have helped me as an obsessive compulsive child.
Forensic scientists in Sydney and Perth are studying what happens to our bodies when we die.
Inside the Australian Facility for Taphonomic Experimental Research (AFTER)
By Michelle Wheeler
If you accidentally stumbled across the remote facility where Jodie works, you might be a little concerned and (potentially) a bit queasy.
For starters, there’s more than 70 dead bodies scattered around the area – some just lying on the ground as they decompose.
But before you dial 000 and report a homicide, let’s clear something up.
Jodie’s not a killer – she’s helping to catch them.
Dr Jodie Ward is the director of the Australian Facility for Taphonomic Experimental Research (AFTER).
It’s the only research facility in the southern hemisphere for the study of human decomposition, or what’s known colloquially as a ‘body farm’.
“Essentially, it’s a unique body donation facility that enables generous Australians to donate their body to forensic science,” Jodie says of the research facility on the outskirts of Sydney.
“And it enables forensic scientists to study the decomposition of the human body once someone dies.”
Replicating Crime Scenes
Jodie says donors are placed in scenarios that replicate crime scenes as much as possible.
Some bodies are left on the surface, while others are buried or placed in vehicles. Some donors are clothed and others are not.
There’s even a mass grave with 10 bodies replicating a war crime or disaster scenario.
Jodie says the bodies are being studied by experts from every discipline of forensic science.
“We have biologists trying to improve the quantity and quality of DNA able to be recovered from compromised bones and teeth,” she says.
“We have chemists studying volatile organic compounds to define the chemical signature of decomposition odour.”
Jodie says AFTER is used to train cadaver dogs to locate deceased people and by archaeologists studying Neolithic funeral practices.
“Without a human taphonomic facility, we don’t have the benefit of studying these types of things,” Jodie says. “There’s so much we are learning from using human donors.”
OUT WEST
In WA, forensic scientists are also learning more about what happens when we die.
While the state doesn’t have human decomposition trials, UWA researchers are using pig carcasses as a model for what happens in people.
UWA forensic entomologist Dr Sasha Voss says the pig trials have been running since 1999 in a secure facility in Perth.
“They’re ethically treated, they’re sourced from abattoirs and then we conduct various ‘unpleasantries’ on the dead animal.”
Recent studies include hanging, burning and even placing pig carcasses in a wheelie bin, to help determine the time of death of real cases.
The reserve has also been used to see whether infrared cameras can detect maggots on a body from the air, helping police to locate missing persons who have died.
Sasha says the reserve is currently being used to train postgraduate students, allowing them to monitor the decomposition process and collect insects from the carcasses.
She says a government report from a body farm in Tennessee found a 45kg domestic pig is the best proxy for human decomposition.
“There’s obviously still differences, but if you can’t go with humans, that’s the best option,” she says.
Dying to get in
Back at AFTER, Jodie’s team has been flooded with offers from people wanting to donate their bodies.
She says many donations are made by older people wanting to benefit the living after they die.
Jodie says other donations have been made by families who have lost loved ones at a young age and wanted their death to benefit others in some way.
Whatever the reason, Jodie says the donations are invaluable.
“Obviously our facility wouldn’t exist without them, so we’re forever grateful,” she says.
Mary Beth Bowen holds a portrait of her mother, Rosemary Bowen, who died last year at 94. Mary Beth started filming her mother’s last days as she stopped eating and her body shut down.
When Rosemary Bowen hurt her back last fall, she was diagnosed with a spinal compression fracture, a common injury for people with osteoporosis. At 94, the retired school reading specialist was active and socially engaged in her Friendship Heights neighborhood, swimming each day, cooking and cleaning for herself, and participating in walking groups, a book club and a poetry cafe. Doctors assured her that with physical therapy and a back brace, she would probably recover in about three months.
Instead, she announced to her family and friends that she had decided to terminate her life by fasting. After saying her goodbyes, she stopped eating, and in the early morning of the eighth day of her fast, she died in her sleep.
But first, Rosemary asked her daughter, Mary Beth Bowen, to film her fast. The final week of her life is now documented, day by day, in a 16-minute film, which was shown publicly for the first time Saturday at the End of Life Expo hosted by Iona Senior Services in Tenleytown.
It may sound macabre to hold a camera up to a dying woman. But Mary Beth said her mother wanted to spread the word that there was a legal, relatively pain-free way to end one’s life. “She thought that more people should take advantage of it,” she said. “She wanted to show people that it could be peaceful and even joyful.”
Rosemary’s plan didn’t completely surprise her family. She had lived through the Depression, when her father lost his job and moved the family to their grandmother’s farmhouse in Magnolia, Wis. Perhaps because of that experience, she was horrified by the idea of imposing on others, even temporarily, to the point where she would stay in a hotel rather than with family. “For all my life, she used to say, ‘People should row their own boats,’ ” Mary Beth said.
Rosemary had seen friends in their 90s who had slowly declined, and as far back as 1979 she wrote about her aversion to an old age with loved ones “shuffling in and out of rest homes visiting me.” When a friend ended her life by fasting, Rosemary decided someday she would do the same.
“At every family reunion she would talk about it — ‘When I get to the point where I can’t care for myself, then I’m going to hasten my death through fasting,’ ” Mary Beth said. “… She said, ‘Old Eskimos, they would just go off and die,’ and she thought that made so much sense.”
After her injury she spent two weeks at a rehab facility, and her daughters talked her into trying out an assisted-living facility. But she hated that she needed help with basic tasks such as cleaning herself, and after two days there she decided to go through with the fast.
Family members begged her to reconsider. Didn’t she want to see her great-grandchildren start to grow up, Mary Beth asked. One of Rosemary’s daughters said she was hurt that Rosemary would not stick around to see her granddaughter graduate.
But Rosemary was adamant. “She said, ‘I’m sorry, but I have to do what’s right for me,’ ” Mary Beth said.
A ‘good death’?
Rosemary would have preferred to take a pill to quickly end her life, but only a handful of states have aid-in-dying laws, and Maryland is not one of them, though it came close to passing such a bill earlier this year. Fasting, or Voluntarily Stopping Eating and Drinking (VSED), is not prohibited by any state.
There is no count of how many people choose this route, but it is gradually entering the public conversation. Radio host Diane Rehm revealed on a 2014 segment that her husband, who had suffered from Parkinson’s disease, had brought about his own death by fasting.
Depending on the person’s health and other circumstances, it can take from a few days to a few weeks before death occurs, according to published studies on the method. Refraining from drinking liquids can significantly hasten the process, as a person can survive for a long time by fasting alone. Proper mouth care is essential for a comfortable death, including keeping the person’s lips moist. Aggressive treatment for pain should also be available.
In a 2015 study, 80 percent of family physicians in the Netherlands who had treated VSED cases said the process had unfolded as the patients wanted; only 2 percent said it hadn’t. The median time until death was seven days. Doctors reported that 14 percent of their patients suffered pain in their final three days, and smaller percentages experienced fatigue, impaired cognitive functioning, delirium, and thirst or dry throat.
The results were similar to that of a 2003 study in which hospice nurses in Oregon were asked if they had treated patients who chose to stop eating and drinking. Eighty-five percent of those patients died within 15 days, and the nurses’ median score for the quality of their deaths, on a scale from 0 (a very bad death) to 9 (a very good death), was 8.
Even so, many advocates for aid-in-dying laws argue that people should not have to draw out their own deaths in such a way. Rehm made that argument vociferously after the death of John Rehm, who chose VSED after his doctor said he couldn’t give him drugs to end his life.
David L. Bowen and his wife Rosemary Bowen.Rosemary Bowen’s beloved sewing machine
The next step after Rosemary decided she wanted to end her life was getting into a hospice program so she could receive aggressive pain medication and other support during the fast. Although she did not technically qualify for hospice since she didn’t have a terminal illness, an Iona staff member helped find one willing to accept her.
In the days leading up to her fast, Rosemary said goodbye to close friends and family members, and started eating half-size meals. Her last meal, for dinner on Dec. 5, was crab cakes. The next day, she stopped eating — and her daughter started filming.
The first scene shows Rosemary smiling, propped up against a blue satin pillow, her short gray hair framing her face. “I am leaving life with great joy,” she says. “I cannot tell you how content I am and I recommend it highly to do it this way. Be in control. Don’t let people decide anything about you and keep you doing a lot of procedures that are not going to benefit your health at all. Just get on with it and go.”
On Day 3 Rosemary says she feels “Okay. Good. Happy. Relieved.” On Day 4, her voice is still strong, and she has returned from walking down the hall with her walker.
Around then, Rosemary became impatient. She felt fine — too fine — and wondered why death was taking so long. Her daughter pointed out that she was still having small sips of water each day with a pill. So she stopped that, instead relying on tiny wet sponges to hydrate her mouth.
By Day 5, her voice cracks as she reports feeling “weaker, and I’m delighted.”
On Day 6, Mary Beth breaks from her neutral observer role and asks if her mother has any regrets about what she’s doing.
“Absolutely none,” Rosemary says.
“But you know that I would much rather have you live for another year or two,” Mary Beth says.
“Oh God,” her mother says with a grimace.
Mixed reactions
The film does not skip over difficult parts, including the last day Rosemary is conscious, when her mind starts to wander as her organs shut down, and she slips into a deep sleep.
In the audience at Iona, the film elicited mixed reactions.
Gerry Rebach, a former hospice nurse whose mother hastened her death with a fast that took 21 days, said, “It’s not easy, and this movie made it seem easy. I would hate for it to give false impressions.”
Rebach said she cannot imagine herself following her mother’s example. “I think it takes an incredible act of will to be sentient and be able to do that.”
Jean McNelis, a Friendship Heights resident who was friends with Rosemary for 20 years and watched the film Saturday, said she is in the process of figuring out details of her living will, will, and power of attorney. “I don’t have any opinion formed yet about what I want,” she said. “She gave me things to think about.”
Carol Morgan, 78, of Columbia Heights, was upset by the film. Her mother had also fasted to hasten her death in 2006. “It broke my heart,” Morgan said. “I couldn’t bear to see it. … There’s something in me that rebels against it.”
For Mary Beth, the filming was excruciating. She would mostly hold her tears back when she was with her mother, then burst into sobs in the parking garage.
But she saw how happy Rosemary was with her decision. “I felt so gratified that I was helping her on this journey that she was on,” she said. “We were in it together. We’ve always been close, but we became even closer. We’ve never been closer than that last week.”
In the end, helping her mother end her life felt like a sacrament. And filming it felt empowering. Since Rosemary’s death, several of her mother’s friends have told her they are considering following her example, she said.
When Esther Delaplaine, 95, a friend and neighbor, visited Rosemary during her fast, she said, “I had a chance to tell her … how her manner of going was a guide to me in some future that I would be facing.”
That was what Rosemary was hoping for. In the final scene of the film, she can be heard saying, “I feel so privileged to be exiting life like this, and think of all those people who are wringing their hands and saying ‘If only God would take me,’ and all they need to do is give God a little help by holding back on eating and drinking.”
By then, the bed is empty, the blue satin pillow still on it.
