[D]ecisions about diabetes care can become harder as people age, and that may be especially true for those needing hospice care.
A new study has found that, among people getting hospice care in a nursing home, diabetes care may lead to higher rates of dangerous low blood sugar episodes, known as hypoglycemia.
That finding came from the researchers’ analysis of data on nearly 20,000 people with type 2 diabetes, all in nursing homes and receiving hospice care.
In 180 days, the time period covered by the study, about one in nine people experienced low blood sugar episodes. But, among those treated with insulin, about one in three had low blood sugar episodes, according to the study’s lead author, Dr. Laura Petrillo, an instructor in medicine at Harvard Medical School.
Low blood sugar can cause weakness, sweating, confusion, shakiness and dizziness, which can cause suffering and reduced quality of life. The researchers defined low blood sugar episodes as blood sugar levels under 70 milligrams per deciliter (mg/dL).
“Hospice is care focused on maximizing comfort at the end-of-life, and usually includes stopping treatments that are unlikely to have short-term benefits,” Petrillo said. “Patients with type 2 diabetes were experiencing hypoglycemia, which would be an indication that there was room for improvement in their diabetes care.”
The study also looked at high blood sugar episodes, defined as blood sugar levels over 400 mg/dL. High blood sugar — hyperglycemia — can cause excessive thirst and a need to urinate more frequently. During the 180 days, 38 percent of patients treated with insulin had low blood sugar, 18 percent had severe low blood sugar and 35 percent had high blood sugar.
Blood sugar levels were checked an average of 1.7 times a day for people on insulin and 0.6 times a day for those who weren’t given insulin, according to the report.
People in the study were receiving end-of-life care at Veterans Affairs nursing homes between 2006 and 2015. All were 65 or older, and nearly all — 98 percent — were men. About 83 percent died before 100 days.
The study findings bring up an important issue — the need for more specific guidelines for diabetes management in nursing home and hospice patients, according to Dr. Joel Zonszein, director of the Clinical Diabetes Center at Montefiore Medical Center in New York City.
Those institutions often “export guidelines for hospitalized patients, and end up continuing to use a lot of medications that cause hypoglycemia,” he said.
Zonszein noted that insulin isn’t the only medication that can cause low blood sugar levels. Some oral diabetes medications also can cause blood sugar levels to drop too low.
In addition to causing people to feel terrible, low blood sugar levels can also increase the likelihood of falls — a concern in hospice facilities and in nursing homes, he explained.
“If medications are not improving quality of life in hospice, it doesn’t make sense to use them,” Zonszein said. “There are many newer medications that don’t cause lows and control the highs. They cost more, but you don’t have to monitor patients as much,” so ultimately they’re likely cost-saving, he suggested.
Matt Petersen, managing director of medical information for the American Diabetes Association, said that the study adds to the understanding of end-of-life care for people with diabetes.
“Hypoglycemia is to be avoided for safety and quality of life, but severe hyperglycemia is also to be avoided for the same reasons — left to go too high, glucose levels can lead to catastrophic (and very unpleasant) metabolic crisis,” Petersen said. “In patients that may not be eating well, estimating insulin dosing to match food intake can be challenging.”
Petersen said it appears from the information provided that patients in the study were receiving individualized care based on their health condition, which is what the American Diabetes Association recommends for care.
“Care should involve a comprehensive consideration of what will ensure the best circumstances for the patient,” he noted.
The study authors pointed out that about one-quarter of people in the United States die in a nursing home, making this a problem many people might face.
What, then, can people do to ensure they or a loved one receives the right care for them in a nursing home, particularly as they near the end-of-life?
“Advocate for your loved ones,” Petrillo advised. “Ask for a medication review, and make sure that medications are geared toward providing comfort and that they’re not receiving anything that doesn’t have a short-term benefit.”
The study was published as a research letter in the Dec. 26 online edition of JAMA Internal Medicine.
“When I first laid eyes on it I was like, ‘Oh my God, I have to have that,'” said Amy Cunningham, 58, as she ran her hand over a biodegradable, wicker coffin. It resembled a large, woven picnic basket lined with white muslin. “It was like seeing a beautiful dress on Saks Fifth Avenue,” she added with a radiant smile.
Cunningham is not a typical funeral director. She’s a fashionably dressed mother of two who used to write for women’s magazines. Swapping editorials for embalming was a lengthy training process. But now, her team at Greenwood Heights Funeral and Cremation Services in New York is part of the latest green revolution: environmentally friendly eco-burial.
Every year, cemeteries across the U.S. bury over 100,000 tons of steel and approximately 1,500,000 tons of concrete from coffins and re-enforced vaults, according to the Casket and Funeral Association of America. Cremation releases carbon emissions and mercury from dental fillings into the atmosphere. Embalming with formaldehyde has been linked to higher risks of cancer and respiratory problems in mortuary workers. With the death rate set to rise as the baby boomer population ages, the traditional funeral industry is becoming more and more of a strain on the environment.
The green burial movement is championing sustainability and a more natural approach to death. Forgoing the embalming process, they advocate biodegradable coffins made of untreated wood, cardboard, or wicker. Shallower graves expose the body to the layers of soil most richly populated with decomposing organisms. Burials take place in protected, natural burial grounds outside urban areas, with graves marked by GPS or simple carved stones. It’s a move back to the more ancient burial traditions practiced until the Civil War (and still favored by Jewish and Muslim communities).
“It seemed somewhat perverse to me that someone can come into the world in a natural way and go out poisoning it,” said Herby Reynaud, a 42-year-old software developer, who stumbled across the idea of green burial after the death of his mother, Marie, last year. He felt that the practice aligned better with both his environmental principles and their Haitian background, he said. When he visited Sleepy Hollow Green Cemetery and National Park for the first time, a herd of deer was grazing on what was to be his deceased mother’s burial plot. It felt like a good sign.
On the day of the funeral, around thirty friends and family crowded around in the September sunshine to celebrate Marie’s life with readings, songs and stories. They filled the rugged grave by hand. The children planted flower seeds. “My cousin said it was artisanal–crafted,” said Reynaud, “and I think that’s what a green burial allows for–you can create something that’s specific to your experience.” Explaining the unconventional service to his conservative, Catholic family ended up being part of the charm. “Everything was a conversation piece which allowed us to weave a story and give the service meaning and context and richness and texture,” he said. “Everyone appreciated it. I appreciated it. It was definitely something different.”
Green burial is all about reconnecting death and nature, explained Cunningham. She pushed up the sleeves of her earth-colored cardigan and flipped through a catalog of green-burial products. Besides woven caskets, there are soluble salt urns and seed-filled scattering tubes. There’s even the option to transform the remains of a loved one into a hand-crafted piece of amber jewelry. Products can be adorned with photographs, drawings or hand-written messages. It’s less rigid and more personal, Cunningham said. Taking part in the burial process is also encouraged. Families can dig or fill graves and plant memorial trees. “Having these kinds of alternative burials helps families feel they are doing something innovative and creative,” explained Cunningham, who had just returned from the latest green burial convention in Tampa. “It’s an experience, it’s not the conventional funeral and families look back on it as something uplifting.”
“I think people recognize that something’s not quite right with traditional funerals,” said Joe Sehee, a former Jesuit lay minister who founded the Green Burial Council in 2002. They regulate practice and educate the public on the green options available. “There’s a paradigm shift which is about to take place in this field. We’re in a really interesting period because people have the ability to really change things and that doesn’t happen very often,” he said.
“Consumers know what they don’t want. They know they don’t want the funeral they saw their grandmother have: very formal, very stuffy, very clinical,” explained Darren Crouch, president of Passages International, a green funeral product service. The use of biodegradable materials also substantially lowers funeral costs. “The products we produce are soft, warm and have rounded edges so they have a very different feel to traditional funeral products, which tend to be cold and heavy marble or metal.”
“Consumers don’t want the funeral their grandmothers had: very formal, very stuffy, very clinical.”
Cunningham steers families looking to “green up” cremation toward innovative organizations such as Eternity Reefs, based on the Florida coast. They work to enhance ocean ecosystems by mixing the ashes of the deceased into environmentally friendly reef ball formations. Dropped onto the ocean floor, they encourage the growth of coral and sea life. “We have numerous examples of people scheduling dive expeditions and boating excursions to visit their loved one’s reef,” said George Frankel, the CEO of Eternal Reefs. “In fact, we know of entire families who learned to dive so they can participate.”
Injecting some imagination into the burial process has produced some scientific innovations. Harvard-educated artist and environmental researcher Jae Rhim Lee is cultivating a breed of “infinity mushroom.” The sci-fi sounding fungi can decompose bodies, absorb toxins, and deliver natural compost back into the soil. She gave a TED talk in the U.K. dressed in a prototype of what she has named “the mushroom death suit,” a shroud infused with the mushroom spores. It looks like a pair of “ninja pajamas,” according to Lee. But as well as speeding the breakdown of the dead body, the mushrooms will also absorb accumulated pollutants such as preservatives, pesticides, and heavy metals. “I imagine the infinity mushroom as a symbol of a new way of thinking about death,” said Lee, as she entreated the audience to take responsibility for their impact on the planet. “By trying to preserve our bodies, we deny death, poison the living and further harm the environment.”
But attempting to spark an environmental paradigm shift doesn’t come without controversy. One green burial practice generating debate is Alkaline Hydrolysis, or “Resomation.” It’s being touted as the more eco-friendly version of cremation. Currently legal in only seven states, it involves dissolving the body in acid under high pressure. After reducing the corpse to a syrupy, brown mixture, most of the liquid is then drained off and the remains collected. The idea of loved ones being “flushed” into the sewage system has raised eyebrows and ethical concerns in the US. European markets, on the other hand haven’t been deterred, praising the environmental benefits and the lower costs of the procedure.
“Everyone has their own personal preference,” said Cunningham. “Some people really don’t like the idea of the body disappearing into the soil and they’re fighting it in every single way. But why use a lot of energy to make the body’s own energy potential inert?”
[B]ibi had always been strong and robust and even when she sustained injuries in dog fights, she would bounce back to her normal spirited self very quickly. Her unexpected, untimely death on the 26th of this month, just a day after Christmas caught everybody unawares. Everybody—except Tutu, one of my gentlest dogs often called the Dalai Lama by many people. On the 22nd, four days before Bibi died, Tutu had given her the “once-over”, sniffing her from head to tail and he obviously sniffed death because thereafter he detached himself from Bibi and behaved as if she didn’t exist, something he’s done each time he’s sensed death. I’d witnessed Tutu’s verdict but subconsciously in an act of self-denial, chose to ignore it. If one factors in Tutu’s “once-over”, Bibi’s death was not really untimely.
Incidentally, out of all the dogs with me at present, Tutu is the only one who can sense death several days in advance, an ability, gift, prescience, call it what you will, he seems to have inherited from his parents. Across the world, there are innumerable documented instances of dogs unerringly sensing death not only amongst themselves but amongst humans and other animals too. Cats too have the power to discern the approach of death well in advance.
Geriatrician David Dosa has written a book, Making Rounds With Oscar: The Extraordinary Gift of an Ordinary Cat. Oscar, said to have “predicted” more than 100 deaths, is internationally famous, having featured on Discovery Channel and other prestigious platforms. According to Wikipedia, “Oscar is a therapy cat living in the Steere House Nursing and Rehabilitation Center in Providence, Rhode Island, U.S. since 2005… Oscar appears able to predict the impending death of terminally ill patients by choosing to nap next to people a few hours before they die. Hypotheses for this ability include that Oscar is picking up on the lack of movement in such patients or that he can smell biochemicals released by dying cells…”
Do animals also know when they themselves are going to die? Jennifer Coates, a house call veterinarian specialising in end-of-life care, wrote a few months ago, “From elephants who grieve for the loss of a herd member to whales who won’t leave their dead babies behind, many species react to death in much the same way that people do. But are animals able to understand that they are going to die themselves? That is a different, more existential question…”
Coates has witnessed several instances when it seems as if a pet has chosen the “right” time to die. She wrote, “I believe my own dog, Duncan, may have had a sense that his end was near…”. Several of my dogs and cats have been aware in advance of their own deaths too.
Sensing death is not confined to dogs and cats. Karen Briggs, an equine expert who has authored six books, reveals that “… much of the information horses receive about their world is gained through their sense of smell… While we are vision-oriented,… horses rely far more on chemical messages in the air…Many trainers over the centuries have agreed that horses also seem to be able to recognise the smell of death, sometimes reacting suspiciously to a spot where another horse has died, sometimes for months or years after the animal perished…”
In a blog in the Huffington Post, Georgianne Nienaber has written about horses from a paranormal perspective. “None of it makes much ‘scientific’ or even theological sense, but the special energy of the horse is an undeniable fact. Call it what you will: soul, energy or electrical waves that can be measured by machines, something powerful and healing resides within ‘Suŋkawakaŋ’ the horse…How do we explain stories told by the Dakota 38 Memorial Riders about ghost horses seen in the tree lines along the 330-mile route from the South Dakota Lower Brule Indian Reservation to Mankato, Minnesota during the winter storms of December? The annual ride remembers the hanging of 38 Dakota American Indians by order of Abraham Lincoln in 1862. It is not commemoration, it is remembrance, and the spirit horses watch over the riders on this dangerous journey of witness…”
Birds too can sense death, their own and that of others. My aunt had a very close bond with her pet geese and fed them their first meal of the day with her own hands. That fateful day, they refused to eat and were strangely quiet. Had they all picked up some infection, she wondered. She went back to the house to call the vet and had barely walked through the doorway when she collapsed and died. Her geese had picked up not an infection, but the intimation of death.
The UK Telegraph carried fascinating findings in the USA on golden-winged warblers—tiny, delicate birds weighing just nine grams, or about as much as a palmful of coins, which showed that yet somehow they knew a massive storm system… was on its way one to two days in advance, and fled. According to ecologist Henry Streby, “When the birds flew off, the storm was still hundreds of miles away, so there would have been few detectable changes in atmospheric pressure, temperature and wind speed. The warblers in our study flew at least 1,500 kilometres total to avoid a severe weather system…” Scientists think that this sixth sense that birds possess has to do with their ability to hear sounds that humans cannot. Birds and some other animals have been shown to hear infrasounds, which are acoustic waves that occur at frequencies below 20 hertz.
With so much evidence about extra-sensory perception and other world connections in dogs, cats, horses, birds and other animals, how is it that we humans, supposedly the most advanced species, lag so far behind, particularly in sensing death? There are Freudian theories, Jungian therories and the like, categorical scientific findings and theories like “They can see and hear things that humans cannot”. And yet there are many recorded instances of humans who sensed death. So is it that most times we humans are so immersed in materialistic pursuits that we fail to detect other world signals? Or is it that we subconsciously choose to remain in self denial, like my own self denial when Tutu “declared” that Bibi’s time was up? In Nienaber’s words, “Science, belief, and experience can be reconciled… A question answered with a question requires meditation and connection with what is unseen and unknown…”
When Kate Gross was dying, aged 36, she told her sons there would be life after her death. But how would they actually cope with losing her?
‘Afterwards, you will need to …’ Kate Gross with her twin sons Isaac, left, and Oscar
By Jean Gross
[W]hen my grandson Isaac was very small, his mother, Kate, would say, “I’ll miss you” when she travelled away for work. Later, when he was three, I remember him running after her in the park when he couldn’t quite keep up with her, crying: “Don’t miss me, Mummy.” To him, “to miss” meant “to leave”. “Don’t miss me, Mummy”, meant don’t leave me.
But, in the end, Kate did have to leave him, and his twin brother, Oscar. When the boys were five and she was 36, she died. It was Christmas Day 2014, minutes before the boys woke up to ask their dad, Billy, if it was time to open their stockings.
In the months before Christmas, once Kate had been told her cancer was terminal, she came up with a way in which we could all talk about a future without her. She called it Afterwards. “Afterwards,” she would say “you will need to …”, “Afterwards, Billy will …” Now, with some distance between us and that worst of Christmases, I want to write about Oscar and Isaac’s Afterwards – how they have managed, and whether Kate’s fears for them, or her best hopes, have come true.
It is a positive story. The boys are now sturdy, happy eight-year-olds. We have learned, with surprise and relief, how resilient they are, and how easily they have taken to the fact that their mum is not here – and yet is still here, in the fabric of her house, in the memories, in the ways in which we constantly tell them they resemble her.
Oscar was working it all out, with numbers as his guide, and Billy knew to tell him that he wasn’t likely to get cancer, too.
Of the two boys, Isaac has always been a little more worried about love and loss, always at a different point on the objects-facts v people-feelings scale. After Kate died, he initially had more hurt places than Oscar – manifest in tummyaches at school and a wish to stay in and “help” his kind teacher, or occasional oblique insights into sadness. I remember being in the car taking the boys to change from school clothes into smart new jumpers and shirts for Kate’s funeral. I told them that some people might cry at the funeral. “Why?” asked Isaac. It’s just something grownups do, I said. “Why?” persisted Isaac. I said they would be sad because they missed Mummy. There was a pause, then Isaac said: “I had a dream.” I asked what his dream was about. “I was on a train and Dad wasn’t and the train went off without him.”
But apart from these brief moments, there has been little sign of grief or worry. Oscar likes to tell me his bad news, like a cat bringing a mouse it has caught and tenderly laying it on your pillow. Once told, it becomes less important. But the bad news has never been about Kate, only grazed knees, fluffing a save in football, missing his computer time at school. Her death did, however, offend his sense of justice. “It’s not fair,” he said when we first told him she would die soon. “The other children in my class will have mummies.”
Kate and her mother, Jean Gross, with Isaac, left, and Oscar
Grieving, I think, asks that you live in the remembered past or a denuded future. Oscar and Isaac still pretty much live in the present. Nor have they a great capacity for introspection. Once I told them they had been unlucky to lose their mum. “Why?” asked Isaac. They didn’t understand; they were unable to examine their experiences, as distinct from simply living them.
There is little point in expecting young children to be sentimental. The summer after Kate died, we were on holiday in France, visiting a church; the boys saw candles and asked if they could light some. For Mummy, we said, and thought of her. But for them what mattered were the immediate sensory experiences – the physical act of striking a match, and the satisfying clunk as the offering money fell to the bottom of the collection box. Things don’t stand for things when you are small. They simply are.
I have often wondered why is it that some children cope with adversity, while others falter and fall. Research tells us that resilience is linked to social support – a sense of belonging to a community, and having at least one adult in your life who believes in you as a worthwhile person. And they have social supports in abundance – Billy, their dad, of course, and all the family and Kate and Billy’s friends. Just as important has been the boys’ own social circle. The children at their small, loving, Catholic school, and their parents, have closed around Oscar and Isaac and created a force field that keeps the Dark Side well away.
Science has been helpful to the boys, too; their dad is, after all, a scientist. They wanted, and got, proper explanations about cancer cells and death. A few months after Kate died, we heard them chatting in bed: “Everything dies eventually,” said Oscar.
“No one lives to infinity,” said Isaac.
Religion, doled out at school, has given the boys a language in which to talk about their loss. People often told them that their mum was in heaven, and they accepted this. In one bathtime discussion, Oscar told me: “There must be heaven.”
“Why?” I asked.
“Because if there wasn’t, where would God live?” he said triumphantly.
Even so, you have to be careful. One of Kate’s friends, whose wife died when his three girls were small, told us that one of them had said she wanted to be run over by a bus, “so I can go to heaven and be with Mummy”. As for, “God took your mummy because he wanted her to be with him in heaven,” I can’t think of anything more likely to make a child seriously annoyed with such a selfish higher power.
Angels are safer territory. At a birthday party, when the children were colouring in angels, Isaac said: “My mum’s an angel.” Oscar agreed: “Yes, she is.” But the angel for the top of the Christmas tree got broken last year and this year we had to get a star instead. I wondered if the boys were confused, what with these broken and unbroken angels. How do children make sense of all this? And how do they reconcile science and belief?
Becoming older and growing in understanding, the boys have talked recently with their dad about this. “It’s belief until it’s proved and then it’s science,” the boys told me.
“So what about angels,” I asked.
“They must be belief ’cos you can’t see them flying round, can you,” Isaac replied.
It is hard to know exactly what the boys do remember about Kate. We try to help by talking about her, whenever we can. Many people have told us how important it is to keep the person who has died in the conversation. A kind stranger, for example, wrote to us: “Both my parents died of cancer. I’m sorry for your loss. PLEASE tell stories about your Kate to your lovely grandsons. We stopped talking about our mother when she died – it was a black space that became hard to fill.”
Sometimes, I hold Kate up as an example for the boys to live up to. When they were complaining about having to keep going back over pieces of writing at school, to “improve” them, I told them that when their mum was writing a book, she had an editor who suggested changes to words and things to move around. I told them how hard she worked to make those changes. “And did she have a rubber?” asked Isaac, concerned.
We had a letter from a woman who lost her own mother as a child. She wrote: “My middle sister and myself had funny little memories of my mum and it truly wasn’t until I had my first child that I recall missing her.” Perhaps that will happen to Oscar and Isaac; I expect they will circle round the idea of Kate’s death and come to it at unexpected moments in unexpected ways. Maybe some later loss will take them back to how it felt in childhood. Or maybe, in a few years, the loss of a mother will simply give them a convenient hook on which to hang their inevitable non-specific teenage angst.
I hope they will be OK, long-term. But right now it is clear to me that they are not diminished by Kate’s absence, unlike us – my husband and I – who are. And if Kate could come back, just for a moment, I would tell her that she need not have been afraid. Oscar and Isaac are fine, just fine.
[W]elcome to the conversation no one wants to have.
It’s the talk about death—specifically one’s own death and the difficult decisions surrounding it. There’s the matter of organ donation, albeit that’s one of the easier choices for most people. Beyond that are tough questions about the conditions under which you would want to be kept alive—or not. Or who would be the person to make those decisions if you’re incapable of doing so.
Ideally, this is a discussion had with a family member or close friend, and at a time free of stress or urgency. But that rarely happens. It’s not just because it’s such an unpleasant and personal subject. There’s also often concern about how the other person might respond. Maybe they won’t be very empathetic, or even worse, maybe they’ll be judgmental.
But what if, at least initially, you didn’t have to talk to another human about this? What if your “end-of-life” conversation was with a machine?
Lead researcher Timothy Bickmore thinks that not only is this a way to get people to address the subject sooner, but it also could help make their last days more bearable.
“Patients tend to be referred to palliative care much too late,” he says. “Something like a third of patients moved to a hospice die within a week.”
Instead, says Bickmore, people with a short life expectancy could use technology with artificial intelligence to help prepare themselves logistically, emotionally, even spiritually for their deaths.
To test that theory, the research team is providing 364 patients expected to live less than a year with tablets loaded with a specially-designed chatbot. The idea is that at least once a day the person would check in with the program.
It’s not a digital assistant like Alexa or Siri; there’s not a verbal exchange. Instead, after a voice greeting, the chatbot provides a choice of responses on the touchscreen. The interaction is meant to be closely scripted to keep the conversation focused and avoid the communication breakdowns that can occur with even the most intelligent machines. Plus, that protects the patient from revealing too much personal information.
That said, chats can cover a lot of ground. The chatbot can see if the person wants to talk about their symptoms or what he or she is doing to stay physically active. But it presents the option to expand the conversation beyond the person’s physical condition, too, perhaps to discuss “end of life” planning. The program doesn’t actually generate documents, but it does enable family members or caregivers to see when a patient is ready to talk about it.
Spiritual counseling
There’s also an opportunity to talk about spirituality. That may seem an odd topic to get into with a machine, but Bickmore notes that an earlier pilot study found that just wasn’t the case.
“We designed it to be like an initial conversation a hospital chaplain might have with a patient,” he explains. “We were concerned that we might offend people with a spiritual conversation. But they seemed perfectly comfortable. There were even a few people who said they preferred having this conversation with a non-emotional character, as opposed to divulging these feelings to a human stranger.
“That was a little bit surprising,” he adds. “We actually felt we could have pushed it a little further. We discussed if we should make it possible for the chatbot to pray with them. We didn’t go there, but I think we could have.”
If a person chooses to converse with the chatbot about religion, the discussion can evolve over time since the machine remembers previous responses on the subject. “The program is very adaptive,” Bickmore says. “For instance, if it determines that you’re a spiritual humanist or a Catholic, then all subsequent conversation is tailored around that belief system.”
Included in that counseling role with the latest version of the program is an invitation to learn about meditation—both as a spiritual experience and a potential way to reduce anxiety and pain. If the patient is interested, the chatbot becomes a virtual meditation guide, all to appropriate background music and calming images.
Conversation practice
Haje Jan Kamps has also embraced the idea of using a chatbot to encourage people to deal with the logistics of dying. His impetus, however, was more personal.
A few years ago, when he and his wife lived in the U.K., his mother-in-law suffered a serious stroke in the U.S. She survived, but Haje says that during her treatment and recovery, he spent a lot of time talking to doctors and nurses about how unprepared many Americans seemed to be when it came to the details of death.
“I’d ask them ’Why don’t people plan for this stuff,” he recalls. “And they would look at me and say, ‘Sure, it would be great if they did, but they just don’t.’”
Kamps saw both a great need and an opportunity. He worked with another entrepreneur, Colin Liotta, to create an end-of-life planning chatbot. They named it Emily.
Emily is designed to have two purposes. The first is to actually help people fill out the appropriate paperwork—a formal organ donation statement, a health proxy document naming the person who will make your medical decisions if you can’t, and an “advance healthcare directive” outlining the extent of medical treatment you want to receive if you’re incapacitated. The documents are customized for the state where you live, although the tool currently provides coverage for fewer than 20 states.
The second goal is to encourage people to have the end-of-life discussion with another person.
“The idea is to have this conversation with a robot first,” Kamps says. “You learn the vocabulary. You learn how to structure a conversation about the end of life. And that means that it can become relatively straightforward to have that conversation again with a loved one.”
For now, Kamps and Liotta see the audience for Emily—currently a free service—as one that might seem counterintuitive. They’re promoting it to people between 25 and 45 years old, a group that wouldn’t appear to be much interested in spending time thinking about death.
But Kamps points out that many in this demographic already are comfortable communicating with chatbots. It’s also an age range, he says, when people start making big life decisions—starting a family, buying a house.
And, to his way of thinking, it only makes sense to start thinking about a will and end-of-life planning at the same time—with the understanding that a person will probably want to consider updating the documents every so often.
“To me, these are core decisions,” he says. “Why wait?”
Writing about her parents being killed when she was 14 forced Erin Vincent to relive the trauma for over six years. It brought her to the brink of suicide
‘Suddenly it all made sense. By writing my book I had unwittingly re-traumatised myself and have spent the last 10 years trying to find my way back.’
[B]efore writing a memoir about my parents dying in a road accident when I was 14 I went around saying, “So my parents died, what’s the big deal?” I wholeheartedly believed that I had come away unscathed. When the topic of parents came up in conversation I would say, “Oh, my parents are retired; they live up the coast.” I figured I wasn’t lying as they had retired, from life, and if you believe in life after death, which I do and don’t, depending on the day, they were living up from the coast, all coasts.
So, how did I go from death denier to published memoir writer? Quite by accident.
I had just turned 30 and was starting to remember things from before my parents’ accident. We hear so much about people repressing traumatic memories but we humans also tend to repress good ones if they serve to remind us of all that we’ve lost. So in fear of losing the memories again I started writing them down and turning them into stories for myself. I figured that if I lost them a second time I could just go back to what I had written.
As I recalled days at the beach, my father’s weird hobbies, and my mother dancing around the house to her Neil Diamond records, I started to feel compelled to also write about what life was like after they were gone. So I steeled myself and wrote about wearing a hot pink dress to my mother’s funeral. I wrote about the constant fear that my three-year-old brother would die if I took my eyes off him for just one moment when we were out in the world. I wrote about the night of my parents’ accident and being told my mother was dead.
After several weeks of this it occurred to me that I was writing the kind of stories I wished I’d had when I was in the midst of grief and thought I was losing my mind as I struggled to get up each day each day and go to school, and once there, try not to run from the classroom screaming. So, on I wrote.
After reading a few of my stories my husband suggested I write a book. This was the era of Angela’s Ashes and Running With Scissors and he jokingly said, “Hey, when it comes to sad stories two dead parents trumps them all.” He was wrong of course but thought it would urge me on.
I resisted for a long time but then wondered if I could write a raw and honest book about my own grief that might actually be of use to some people; maybe help them feel less alone than I did when I read grief books with covers photos of lavender fields and sunsets that told me grief came in five (only five?!) stages and that grief was like the rain. Grief is nothing like the fucking rain, I thought. If anything, grief is like being lost at sea in a raging hurricane.
So to dispel those myths I decided to write a memoir about my experience and honestly believed I could “knock it out” in six months. How hard could it be? I’d been a journalist writing about other people, so writing about myself, a subject I knew well, would be a cinch.
How wrong I was – about the writing, and about myself.
About a year into the writing I wondered why I was so tired all the time; why after writing for an hour or two all I would want to do was sleep. I thought I was just being lazy so I pushed myself harder.
Determined to remember as many details as possible I decided to bombard my senses. I bought CDs of the music from my childhood and items with familiar smells such as Play Doh, my dad’s Old Spice, Brut, my sister’s Charlie perfume, the 4711 cologne my mother used to wear, the brand of glue I used in grade school. And there I sat at my desk writing, sniffing and listening to Barry Manilow, Whitney Houston, The Police, Blondie, Herb Alpert and the Tijuana Brass, Neil Diamond.
Not long after this I became itchy, literally. Large red hives started appearing all over my body. Convinced I was having some kind of allergic reaction I proceeded to change soap, laundry detergent, shampoo, and I stopped smelling the perfumes and aftershaves, but nothing worked. Then came the debilitating stomach pains, diarrhoea, and vomiting, which led me to hospital for a colonoscopy, which found nothing. I became listless, was crying on a daily basis, my hair became limp, my nails brittle, and eventually I had trouble getting out of bed. And yet, not once did I attribute any of this to what I was writing.
And then one night I decided I couldn’t go on and that my husband’s life would be more joyous without his sick, miserable wife. I had it all planned. I was going to write a note that said something along the lines of, “Babe, do not enter. Just call the police. I love you.” This was going to be taped to the bathroom door before I locked it, sliced my wrists and laid in a warm bath and drifted away. But then I thought about grief, something that was on my mind daily. Could I put him through that? I tried to reason with myself, “But once the grief is gone, he can live a happy life”. But still … grief. Could I, of all people, cause the person I loved most in the world to experience what I had? No, I couldn’t. So the note was never written. Instead I put the razor away, collapsed on to our bed in a sobbing heap and wondered how I would go on. Somehow I did. And I kept writing, in shorter spurts now that my energy was so low.
As I sat at my desk one afternoon, staring out the window because I was too tired to do anything else, my teary-eyed husband, handed me a printout and said, “I think this might be you.” It was a “depression checklist” that he’d found whilst doing some research for a photo series he was working on. And then it all made sense. I was depressed. How did I not see it?
We talked about me ceasing the writing but I explained that I couldn’t. I had come this far and it would all be for nothing if I didn’t finish. So we came up with a plan. I would only write for one hour a day and would go and see a psychologist to see if she could help me get through it. I also went on antidepressants which eventually lead to a host of physical and mental health issues that I am still recovering from. (This last year I went through hell trying to ween off the drug Cymbalta)
So with a loving husband, psychologist, and pharmaceutical drugs in tow, I wrote and eventually finished my memoir. It would be a couple of years before I sold it to a publisher and had to go through the whole experience again during the editing process. By the time I was done I had relived the night of my parents’ accident on a daily basis for six years. I thought I was numbing myself but I have since discovered that I was actually rewiring my brain.
Studies have shown that replaying traumatic events over and over again is equivalent to living them, in your brain and your body. Your brain reads the information as though the event is happening in that instant. I recently read Dr. Bessel van der Kolk’s book The Body Keeps the Score in which he says, “Flashbacks and reliving are in some ways worse than the trauma itself … a traumatic event has a beginning and an end” but a flashback can happen anywhere, anytime and for an indeterminable length of time.
Suddenly it all made sense. By writing my book I had unwittingly re-traumatised myself and have spent the last 10 years trying to find my way back.
It’s funny, the main thing people say to me when discussing my book is how cathartic the writing must have been. I know they want me to say that it was, but I refuse to perpetuate the lie that writing about your pain is freeing when that is not always the case.
And now when people tell me they plan to write a memoir I want to caution them about the possible costs of such an endeavour. And yet, I want to be supportive, I don’t want to be the person who tries to kill a writer’s dreams.
Writing a book isn’t easy but dredging up your past and writing about it can be self-inflicted torture.
But who am I to tell you not to embark on that memoir? All I can say is: you’ve been warned.
[A]bout 15 years ago, Cynthia Beal, a 30-year veteran of the natural-food movement and then-owner of the Red Barn Natural Grocery in Eugene, Oregon, sat down to work on a science fiction novel.
As she wrote, she began to contemplate life — and death — in the 2040s, a date that still felt far off in some Terminator time, but she worried was sneaking up on her and her fellow citizens.
“I was trying to solve the problem of what would happen to people’s bodies,” Beal, 60, told me recently, looking over the grounds of Oak Hill Cemetery in Eugene. “As I started to look to the future, I saw there was an issue that need to be addressed. And I thought, ‘My god, this is really interesting.’”
Today, Beal is among those on a crusade to shift the way we die toward a process that could curb global warming. She’s become fixated on the the patterns of a funeral industry that she believes are devastating for the planet. In 2003, Beal sold her grocery store to her brother, and a year later she founded the Natural Burial Company.
“I’ve always been a bit of a crusader in my own small way, trying to help things improve wherever I am,” Beal said, adding that the natural burial market had “all the hallmarks of action that appeal” to her. No one could tell her how to do it or how to make products, because it wasn’t really being done yet. In her first couple of years in the funeral business, Beal canvassed the globe trying to find manufacturers of eco-friendly pods — a kind of sarcophagus made out of recycled paper products — and caskets, while studying the way we die. That curiosity led her to the United Kingdom in 2007, which is something of a haven for natural burials. The nation has a damp and chilly climate that’s similar to Oregon’s, but a much larger population. She studied the U.K.’s burial laws and practices, and after conferring with British casket and ecopod makers, she brought the first commercial biodegradable coffins to Oregon, where she displayed them in a downtown Portland gallery open to the public in an attempt to de-creepify the casket selection process.
Later, with the help of Dr. Jay Noller, head of Oregon State University’s Crop and Soil Science Department, she co-founded Oregon State University’s Sustainable Cemetery Studies Lab (and created the aptly-titled curriculum, Digging Deeper). In 2014, she purchased two cemeteries in town, including Oak Hill’s 11 tree-lined acres which contain almost 2,000 bodies dating back to the 1850s. One quilt of tombs rests under a canopy of oak trees, while newer burial plots make their way down the hill and offer a panorama of mountains, trees, and Fern Ridge Lake. Her goal was to make Oak Hill accessible to students studying the environmental implications of funeral practices of yore, and create a space for buried bodies to decompose, or recycle, naturally.
Forensic camp attendees examine samples at Oak Hill Cemetery.
With her long raven hair pulled back into a ponytail and in black jeans and tank top, Beal looked the part of hip undertaker as she strolled around the cemetery with a middle-aged couple. “Have you considered a wicker casket?” she asked. They shook their heads and said they hadn’t realized it was even an option.
It’s more difficult than one might think to get people to consider their burials the same way they think about purchasing other goods and services that “give back,” as they do when buying organic Newman’s Own Popcorn, even though funeral arrangements are a consumer choice that may continue to help the planet long after the buyer is gone. But Beal’s efforts on what may be the ultimate “back-to-land” movement aren’t isolated, and scientists at Oregon State are also pushing conversations about how post-mortem bodies affect the earth.
“This is a blind spot,” said Dr. Noller, who added that when it comes to even basic research, scientists studying dirt are behind their colleagues who study the more poetic aspects of environment, like the sky and water. “People see air pollution,” he said. “But soil, even though it’s obviously important, it can be difficult for our species to recognize that. People really think, ‘It’s dirt to me.’”
Until a few decades ago, the U.S. funeral industry favored large metal or wooden carriers for bodies, even though they don’t break down into the earth over time. (Critics also argue that those products are costly to consumers and put profits ahead of grieving and logic.) But when these industrial caskets became popular, the concern was less with practicality or environmental externalities and more with status. It wasn’t until the 1960s that many of those practices were scrutinized, notably in Jessica Mitford’s expose, “The American Way of Death,” which led to increased regulation of the funeral industry.
Beyond burial containers, the millions of Americans who die in hospitals with not-necessarily-earth-friendly chemicals in their bodies are also a concern (not to mention the chemicals that bodies are embalmed with). And burying bodies six feet underground may not be the best choice for topsoil either; Beal and others place caskets more in the 30-inch-below range. “We have these boxes of toxic waste that have been buried underground for years,” Beal said. “It’s more complicated than people think and we’re just starting to do the research.” By using Oak Hill and expanding science, Beal and Dr. Noller are hoping for more information about how those chemicals are impacting tree root systems, topsoil, vapor, circulation, and how alternatives like natural burial could help. That, in turn, could carry implications for urban planners, insurers, and communities, particularly as cemeteries that were once rural inch closer to developments and water sources. “It might be one of the reasons we’re seeing rivers with arsenic in them,” he said.
Rest Lawn Memorial Park in Oregon accepts natural burials anywhere on its grounds, keeping in tradition with the pioneers who were buried there more than a century ago.
Clients who make that connection are generally the first to come to natural burial. “At some point, people realize they’re not going to live forever,” said David Noble, Beal’s mentor and Executive Director of the non-profit River View Cemetery in Portland. “Maybe they were environmentally friendly as a liver and realize that when they’re going to die, being soaked with embalming fluid and thrown into a concrete vault in a metal casket isn’t coinciding with their life.”
When Noble started out in the cemetery industry in the late 1970s, he said River View did about 500 casket burials a year. Today, it does only 140 burials, 40 of which are natural, as tastes have shifted more toward cremation.
“It’s a different world today,” Noble said, “But we’re still very much a death-denying society.”
At Oak Hill, Beal’s middle-aged client couple politely nodded as she explained wills, ecopods, and the options to have wildflowers or oak trees planted alongside their remains. She joked with them about how her business plan uses “the homeowner association model” — she does regular grounds maintenance to make people sure that when they buy a spot, it will stay consistently tranquil. “But the homeowners are, well, dead.”
After her potential clients went on their way, Beal led me into a nearby showroom where she told me that she avoids being a pushy salesperson, particularly considering the taboos and emotions around death. The earliest adopters are not those closest to death, she said. “I get a lot of questions from the people who haven’t even thought [much] about it yet.”
This section of Oak Hill Cemetery is used exclusively for natural burials. The grass is mowed just twice a year in order to maintain the hill’s pastoral quality.
To her left, a large willow-woven casket rested in a corner and an array of acorn-shaped fiber urns were perched on a shelf. She adjusted some palm-sized clay jars, intended to hold a small handful of ashes. Her customers have spanned all walks of life, Beal told me. “Many of my natural-material coffins have been sold into the Midwest and Southern Bible Belt states. A number of her customers grew up in Europe, “where woven coffins were common.” She still displays at trade shows and plans to open a pop-up gallery in Eugene to display her own designs at some point in the near future. “It changes when people feel like they’re buying a work of art, or supporting an artist,” she said.
For Gary LeClair and his wife Janice Friend, a longtime interest in natural burials turned to action while doing routine estate planning. LeClair, 72, a retired physician in Springfield, Oregon, said he had some heart problems that got him thinking about how best to leave the couple’s affairs in order for their three children. Throughout his life and career, he said he championed right to die legislation and environmental causes, and as the pair began to look at cemeteries and funeral homes, he was disappointed by the options. Neither he nor his wife want to be cremated, concurrent with her Jewish faith, but the idea of a durable, stainless steel, waterproof coffin for $15,000, he said, “seemed obscene to me, a total denial of the fact you’re going to be dead.”
LeClair said that he has “been interested in ashes to ashes, dust to dust for years,” and in addition to purchasing two plots at Oak Hill, LeClair and his wife purchased two biodegradable coffins made from African wood. “They’re out in my shop now,” he said. “I’m sure people think that’s a little weird.” They also wanted a site where loved ones could visit, so the couple ordered a bench with a customized engraving. To avoid embalming, he hopes to have a service at home and be transported immediately to Oak Hill.
“The simplicity of natural burial appeals to me,” LeClair said. “I want to let the others focus on their grief without having to be distracted by, ‘Oh, Dad would have wanted the purple-lined casket or the plain wood box.’ It’s stupid. When you’re dead, you’re dead. Focus on the people who are left. My wife and I are emotional people, but we’re logical. We plan to be the same way in death as we were in life.”
Even with people like LeClair and Friend planning for natural burials, Beal has found the funeral business is slow to shift, in part because people make end of life decisions in advance. “How is an industry going to change its infrastructure when you have decades of pre-ordered cars?” she mused. “You have to fill the orders for the 1987 model now. It would be like all of us driving Pintos today.” Things are moving more slowly than she’d anticipated, but they are still moving.
In the next year, Beal wants to expand her offerings to allow friends and families to do services at home, like the one LeClair wants. She’s trying to get more cemeteries educated on natural burials, and expand her casket and urn offerings with U.S.-based artists. “I’m in this for the long haul,” she said. “I imagine in another ten years this movement will step into its own. Several years ago, the Baby Boomer generation hit sixty. We may be living longer, but we’re still going to stop living eventually. And there will be a lot more of us doing that than there ever has been. We will not see a return to full body burials using metal caskets in concrete vaults in the U.S.; I believe those days are over. My market is coming. It’s as inevitable as death and taxes.”
And the science fiction novel, she said, “is still a work in progress.”
