But can genealogy help predict how long I will live?
By Debra Bruno
Fascinated with genealogy, I’ve started spending too many hours chasing snippets of family stories. I figure if I can learn something about my family tree, it might shed light on my health and how long I will live.
I’ve become obsessed with two ancestors in particular: Permelia Van Valkenburgh and her son Amasa Matoon Van Valkenburgh.
Permelia was my great-great-great grandmother. Married at 17 to a distant cousin who shared her last name, she gave birth to 10 children over 18 years and died in 1855 at age 42.
Permelia was a 19th-century farm wife in the Catskill Mountains, a place where people didn’t roam alone at night for fear of panther attacks. Two of her 10 children died in infancy and one at 20. Her next-to-last child, Amasa, was my great-great grandfather. He was 9 years old when his mother died.
What killed her? If it was childbirth, there is no record of a child born or buried the year she died. If it was flu or tuberculosis or another contagious disease, there is no evidence of anyone else in her family dying in May 1855, although both were common causes of death in 19th-century communities. Maybe it was a laceration that became infected, picked up in unrelenting farm and housework. The month of May in the high Catskills could be chilly, and the winter stores of food would have been nearly depleted. Crops would not yet have produced anything. There was the occasional flash flood in the nearby creeks, so maybe she drowned.
Curious about what killed people in rural New York in the mid-19th century, I found the U.S. Census Mortality Schedules for the state from 1850 to 1880. The United States recorded this information once every 10 years and listed only those who died the year of the survey. Even so, I found some interesting details for Greene County, where she lived, in 1850: consumption (tuberculosis), cholera, dysentery, whooping cough, infection of lungs, infection of hand, infection of brain, asthma, childbirth, drowning and cancer were listed as causes of death. The most frequent cause was cholera. Many times, the named cause of death for people in their 80s and 90s was “old age.”
Did any of this have any meaning for me? Probably not. “The big picture is the shift from infectious disease as a major cause of death to chronic diseases,” said Charles Rosenberg, professor of history of science at Harvard. Causes of death such as tuberculosis were “background noise,” he said, so common that they were unremarkable. What drew more attention were cholera epidemics or influenza sweeping through communities.
Susan Speaker, a historian with the National Library of Medicine at the National Institutes of Health, said that before the 1920s, more Americans died of “microbe-caused diseases” than anything else. The balance started to shift by the 1930s and ’40s, she said.
In other words, a farm wife living in the country — while not exposed to the overcrowding and bad water of cities — would have had a number of other health challenges.
For instance, “if you came down with appendicitis in the 1900s in the country, you might be out of luck,” said Speaker, “unless you had a local practitioner who was a decent surgeon.”
While I was getting closer at making an educated guess at the cause of death, my mother and I ventured into the Catskill Mountains one Sunday morning in August after services at the First Reformed Church in Athens, N.Y., the village on the Hudson River where we both grew up and where many of our ancestors now rest.
We drove high into the mountains until the ski resorts and gift shops dropped away, the houses became more spread out, and the forests got thicker in the Catskill State Park, land first preserved by the state in 1885. Finally we reached the turnoff to Westkill, the hamlet of a hamlet, tucked between hills in a valley.
The cemetery was small, with maybe 40 stones. The grass had been newly mowed, and damp cuttings thrown by a power mower still plastered the white sides of the Westkill United Methodist Church (built in 1848) and, next to it, the Westkill Baptist Church (built in 1830). One or two graves had collapsed, leaving a deep, grass-lined trench in the earth. We peered inside the churches, but both had been long abandoned. Even the pews were gone.
Back at the far edge of the cemetery, just before the ground dropped off to a creek, I found a dark, mottled headstone. It read:
Wife of Jacob Van Valkenburgh
Died May 7, 1855
Aged 42 years, 3 mo, 5 ds
Near her was the stone of James, the 20-year-old son who died just two years before her. Along with losing babies Elizabeth, Huldah and George, did James’s death in 1853 lead to her decline?
Just a few steps away was her son Amasa, my great-great grandfather.
Amasa M. Van Valkenburgh
Died July 1, 1890
Aged 44 years
Here was another ancestor who died young. Amasa married at age 24, had five children with his wife, Christina Smith, and died in the middle of the summer.
Town records in Lexington, N.Y., eventually turned up his cause of death: “acute peritonitis,” which is an inflammation of the abdominal wall. Untreated, as it would have been in pre-antibiotic times, peritonitis leads to sepsis and death. What is still a mystery is what caused the peritonitis. It could have been a puncture wound to the stomach. It also could have been cirrhosis of the liver, which often leads to peritonitis. NIH’s Speaker said it would be impossible to know whether the peritonitis resulted from cirrhosis, a perforated gastric ulcer, a burst appendix or a ruptured gall bladder.
Buried alongside him was his wife, Christina. She went on to remarry and outlive a second husband. Christina passed away in 1946 at age 96. She would have remembered the Civil War, World War I, women getting the right to vote and World War II.
Of her five children with Amasa, two lived into their 90s, and another to 87. And her grandson, my grandfather Orrin, lived to 97.
Does this mean, then, that I could count on a longevity gene?
A study published in Genetics shut down that fantasy. Looking at 400 million people born between 1800 and 1920, whose information had been collected from public family trees in Ancestry.com, investigator Graham Ruby found that only about 10 percent of human longevity is inherited. Previous estimates ranged from 15 to 30 percent.
Our intuition is that long life spans run in families, Ruby said. And yes, genetics does contribute to life span, he said, “but to a much lesser extent than we thought.”
“Honestly, all of us were a little surprised,” said Catherine Ball, chief scientific officer at Ancestry, which collaborated with Ruby at Calico, a California research-and-development company.
“What this work has shown is not that longevity isn’t inherited,” she said. “It is inherited, but the cause is not often genetics.” In other words, humans also inherit money, property and social status, which also influence longevity.
Both Ruby and Ball said that a much more important role in longevity is “assortative mating.” In other words, people tend to marry people who are similar to them in location, socioeconomic status and education, and those factors also influence longevity. People are more likely to match the longevity of their in-laws than their ancestors, Ruby said.
The research showed fascinating patterns such as a drop in longevity about 1918, when World War I and the Spanish flu were killing millions, Ball said.
“Over time, the types of things that caused mortality were very different,” she said. “Infectious disease was a much more important killer then than now. Childbirth was not something you really wanted to go through.”
In other words, both researchers said, much of what foreshadows our longevity today involves healthy lifestyles and access to medical care more than genes. I didn’t necessarily uncover any clues about my own health ancestry in my research, but I did develop a greater respect for the enormous achievements of modern medicine.
With more than 1.4 million Americans receiving hospice care every year, the demand for high-quality end-of-life care is only projected to rise in years to come. In Minnesota, a “death-positive” movement is to thank, experts say.
While the aging population is growing rapidly, a broader cultural shift is also largely to credit: More doctors are encouraging and accepting of hospice, more mediums are portraying it positively, and more people are discussing and planning for end of life.
“There is a huge death-positive movement happening now,” Christin Ament, organizer of Death Cafes in the Saint Paul area, told the Pioneer Press.
Death Cafes are just one example. Created in 2004, the concept is to offer a place for people to eat, drink and talk about death. Beyond Minnesota, thousands of death cafes are currently operating in more than 60 countries worldwide.
Similarly, the spike in hospice use transcends any one state. Hospice admissions and utilization in the U.S. continued to rise in the second quarter of 2018, according to the latest trends report from Atlanta-based analytics and metrics firm Excel Health.
Experts say the biggest reason for the shift is a change in attitude among doctors, according to the Pioneer Press. Traditionally, doctors have focused on lengthening life by whatever means necessary, opting for curative care as opposed to services more closely aligned to patient comfort.
“At times, you were fighting against what the body wanted to do,” Lindsey Pelletier, a hospice nurse who formerly worked in intensive-care units, told the Pioneer Press. “At times, you were doing something unnatural.”
But now, hospitals have entire teams focused on palliative care, and doctors respect that high-quality end-of-life care is sometimes best for terminal patients.
In addition to making patients’ final days more comfortable, hospice care has also been shown to save money by curbing overall health care spending. With health care costs rising at an unsustainable rate, hospice costs only a fraction compared to many alternatives.
For example, intensive care bills from hospitals can cost thousands of dollars per day, while daily Medicare reimbursement for hospice is $180.
Besides death cafes, the international rise of “death doulas” is also emblematic of the death-positive cultural shift. A type of end-of-life care expert, a death doula carries out a dying person’s plan for how and where he or she wants to die, while also providing spiritual guidance and holistic support.
Some hospice companies have even begun to work with professionally licensed doulas as a way to separate themselves from competitors. On a high level, baby boomers are partially to thank to the the shifting perception of death, experts say.
“My particular demographic is a take-charge-of-my-own-life kind of demographic,” Synthia Cathcart, Compassus’ vice president of clinical development and education, previously told Home Health Care News. “We see more and more openness about, when there isn’t another option given, really embracing that stay-at-home, quality-of-life conversation.”
Windblown rain lashes against the hospital windows in an uncertain rhythm that seems even more unsteady as I enter the patient’s room near the nursing station. There is music in this room. Two people sit in chairs by the bed of a patient, a woman who is lying very still. I recognize the voice of Elton John coming from a tablet computer on the bedside table. He’s singing “Crocodile Rock.”
“She liked this,” says the woman’s daughter, smiling and rolling her eyes, as though to say “Elton John, really?” The dying woman’s husband glances at his daughter, then at me, and says, “We followed the advice from one of the nurses to play some music in her last few hours and days.” He smiles slightly, as if in apology for the jaunty tune ( I never knew me a better time and I guess I never will ) in this solemn setting.
His wife’s eyes are closed. Her breathing is steady. Her pulse is fine, about 90 beats per minute. She is much calmer than yesterday, when she was flushed, frowning and seemed in considerable pain. But she is dying. We are giving her as much support as we can to help her be free of distress or discomfort.
I’m a palliative care doctor. I work in Britain in a general hospital, a cancer hospital and a hospice. Sitting with someone you know and love who is dying can stir a craving for a bit of normality in what otherwise might seem a surreal setting. Not that dying isn’t “normal,” but nowadays death and dying are often hidden away in hospital wards or nursing homes, and many people don’t know what to do, or what not to do.
I often tell the family and friends of a dying person that they needn’t speak in hushed tones, that they are welcome to chat or share a joke or call out crossword clues. Or play some tunes. Putting on a favorite song can become a ritual celebration as you enjoy a moment you shared many times before.
Some people don’t need any encouragement — I have seen plenty of terminally ill patients die with music playing in the background. But in the past few years, as the benefits of music in these settings have become more apparent to me, I have paid more attention to what is on.
Music can even help with those who are severely ill but recovering. The father of one of my younger patients put his playlist on while his daughter was in critical condition. Through her delirium, she complained when a well-known rap song from the ’90s came on. Later, after she awoke and was more responsive, her father defended his back catalogue of music, and a debate about good taste ensued — their conversation accompanied by the usual hospital soundtrack of beeps and infusion drip alarms and squeaking cart wheels.
Listening to familiar musical passages can prompt significant emotional responses, causing the release of neurotransmitters such as dopamine. In particular, they are released in an ancient segment of our brains, known as the striatum, which is associated with emotional responses to rewarding inputs such as food, sex, drugs and . . . rock-and-roll.
What happens to the brain in our dying moments? The shutting-down process is not as straightforward as you might imagine. Most of the research on the topic has been done with rodents, so we may not be able to extrapolate too much. But dying rats experience heightened activity in their frontal cortical areas, when the oxygen and glucose have been taken away and there is a huge influx of calcium into their brain cells. Our ability to have conscious thought and experience depends on the strength of the connections between the frontal areas of the brain, associated with mental abilities, and those nearer the back of the brain that process sensory information. These connections, in dying rats, actually strengthened by five to eight times after cardiac arrest, compared with waking moments.
Such a surge in the human brain may explain why some people who have near-death experiences report heightened sensory information. Those who are dying may also be able to process auditory information better than is generally assumed. It is entirely feasible that, in our dying moments, we are more aware of what is happening around us than previously believed.
There are many things we want to talk about with family and friends; death isn’t usually one of them. But from Death Salons to Death Cafes and dinners, there are plenty of signs in Seattle that this is changing
BY: Jen Swanson
There are a couple of ways to kill a dinner conversation. First, discussion of politics, a truism that is magnified in our divisive modern age. Second, religion, although this doesn’t often come up on this side of the Cascades. Finally, death, though most people would never consider raising a subject so morbid. In terms of topics to avoid discussing over dinner—or ever—mortality ranks high on the list.
However, one local entrepreneur and author, Michael Hebb, considers such conventional thinking dead wrong. “It’s like the opposite end of the continuum of talking about the weather or of a cocktail conversation,” says Hebb, whose new book, Let’s Talk About Death (Over Dinner), describes death as the most important conversation we’re not having. Such silence bears serious repercussions, and not only in terms of missed opportunities to connect with your loved ones. The book identifies end-of-life hospital expenses as a leading factor in American bankruptcies, Medicare patients outspending their total assets, and the sad fact that 80 percent of Americans die in hospitals, despite most wanting to die at home.
To Hebb, whose deep interest in death-related discourse led friends to throw a living funeral for his 40th birthday, one problem is that modern Americans no longer make time to eat together. “Just like we’ve forgotten how to pickle and can and preserve, we’ve also forgotten how to come together around the dinner table and have meaningful conversations,” he says, ruing the loss of this important “cultural engine.” The book and its companion website , inspired by a course Hebb taught at the University of Washington, offer an easy, DIY format intended to help readers host their own death dinners, with personalized cues and prompts that have fostered 150,000–200,000 dinners worldwide since launching in 2012. “There hasn’t been a single Facebook, email or Twitter response indicating a dinner went badly, which tells me that people know how to have this conversation,” says Hebb. “Maybe they’ve had a forgettable experience, but no one having a bad experience tells me that we’ve tapped into a basic human need.”
Hebb isn’t the only local focusing on this topic. From Death Salons to the locally produced Speaking of Dying film and companion workshops, there is a quiet movement in the area that’s giving voice to this once taboo subject. “This is a great region that’s having an interesting undercurrent conversation,” says Taryn Lindhorst, Ph.D., LCSW, a Behar professor of integrated oncology and palliative care social work at the University of Washington, who cites the Pacific Northwest’s counterculture vibe, antiauthoritarian bent and focus on experimentation as some of the reasons why.
While Michael Hebb was restoring the lost art of breaking bread, the concept of discussing existential topics—like death—over tea and cake was gaining traction in England. The idea for Death Cafes was originally conceived in London in 2011, but quickly spread across the pond to North America and particularly to Seattle, where Death Cafes have cropped up in libraries, mortuaries, houses and actual cafés.
“It’s a safe place to talk about death,” says Karuna Duval, an ordained interfaith minister, hospice chaplain, certified death doula and one of many volunteer facilitators hosting Death Cafes in and around the city.
Duval has hosted Death Cafes in Washington and California, where she used to live, and estimates 7,200 Death Cafes have now taken place in 52 countries worldwide. “I just found it so fascinating because of the experience of so many people,” says Duval of attending her first Death Cafe in 2012 in California, following the deaths of her father, grandmother, partner and first husband. Such open discourse hadn’t been evident 10 years before, when Duval, inspired by a book titled Talking About Death Won’t Kill You, tried to organize her own workshops to foster end-of-life discussions and planning. The response then was lukewarm, but a decade later, the temperature had changed. “It felt like a relief,” says Duval, who was seeking to process all the loss in her life. “It was like, oh my gosh, I can finally be around people who aren’t like wigged out or weird talking about this stuff.”
There are all sorts of reasons why people don’t talk about death: A desire not to sound overly morbid. Fear of the unknown. A remove from death that has happened because so many people now die in hospitals, not at home. The superstitious notion that talking about death might hasten the event. The “go, fight, win” mode often prompted by serious illness. “In fact, the opposite is true,” says Hebb, describing how our cultural programming can work against us. “If somebody has a terminal diagnosis, having end-of-life conversations will extend their life. And that’s clinically proven.”
Our underlying “death anxiety” was the key focus of the late scholar, author and roving professor Ernest Becker, whose seminal book, The Denial of Death, won the Pulitzer Prize in 1974. “Ernest Becker was a cultural anthropologist who developed theories about how the uniquely human awareness of our mortality impacts our behavior,” explains Deborah Jacobs, executive director of the Seattle-based Ernest Becker Foundation, which was founded by a retired physician in 1993.
“I would posit that the death-positive movement is founded on Ernest Becker’s thinking,” says Jacobs of the growing swell of Death Cafes, death dinners and other efforts in recent years to reclaim the ways in which we talk and think about death, actions that echo the foundation’s longstanding efforts to bring our underlying awareness of death to the forefront.
To Becker, who saw death anxiety as a key driver in everything from religion and culture to our choices of partners and jobs, knowledge of our inevitable passing also drives each person to embark on an “immortality project,” or a quest to fill our lives with meaning. “Meaning has to last beyond our demise, our physical demise, so it could be making children, writing books, being good at your job, being a war hero, being a terrorist,” says Jacobs, noting Becker’s diverse appeal.
Trudy James, a retired hospital chaplain, also sees Becker’s theories at play in our current health care system. “The medical system became part of what was already the underlying denial of death,” says James, describing a system in which doctors don’t talk to their patients about death or dying. This marks a departure from James’ early career, which stems from the 1980s AIDS crisis, when patients knew they were going to die, openly discussed it and ultimately died more peacefully. “We live in this fantastic medical environment where we’re the beneficiaries of fabulous health care and have all these new procedures and new clinical trials and new treatments and new medications,” she says. “It’s caused people to believe they can live forever.”
James’ solution was to create a four-part series of end-of-life workshops and a documentary film, Speaking of Dying, which follows patients, families and medical professionals through various end-of-life options, including Washington state’s “Death with Dignity” law. Screened at churches, senior homes and other venues in Seattle since debuting at the Frye Art Museum in 2015, the film always draws attendees, including doctors and hospital chaplains who’ve never discussed death with their own families, says James, describing the documentary as an instant conversation starter. Meanwhile, the workshops, offered since 2008 through James’ company, Heartwork, offer participants a safe, intimate space to share stories, address questions and fears, complete advance directives and get familiar with hospice/medical procedures, such as CPR, which rarely works out in real life like it does in the movies. Doing this “real work of dying,” as James calls it, allows people to spend their final moments in peace with their family.
Death Doulas These coaches help ease the end of lifeAs more people decide to die at home, death doulas, also known as end-of-life doulas or death midwives, guide patients and their families through the end-of-life process in a way similar to how regular midwives would assist with home births. Death doulas play various roles, from offering patients comfort and companionship in their final days to supporting the family by performing basic caregiving tasks, assisting with funeral planning and helping loved ones grieve. “It’s not to replace any of the components of hospice,” says Karuna Duval, a hospice chaplain who is also a death doula, of the two programs’ complementary functions. The International End of Life Doula Association (INELDA), founded in 2015, is just one of many organizations offering training and accreditation to anyone interested in joining this budding movement.
“If you haven’t had these conversations by the time you get to the hospital, the hospital is a terrible, terrible place to have them,” says Lindhorst, the UW professor, noting the ease with which hospitals can overwhelm patients who haven’t considered their options beforehand.
“It’s kind of like a conveyer belt,” says Lindhorst, describing a medical system whose default status is always set to treatment. “Once you step on it” and start down that path, “then treatment implies the next thing, implies the next thing, implies the next thing,” she says, noting how easily people can get moved through the system, in part because doctors don’t often have more than 15 minutes to explain various options. “It’s not anybody’s fault per se, but the system is so strong in this,” says Lindhorst, who saw early on in her career, which was also rooted in the HIV/AIDS epidemic, that the onus is on patients to be knowledgeable and empowered.
The medical community could learn something from Elizabeth Coplan, a playwright who four years ago was struggling to cope with the death of a cousin, a freak accident that claimed a loved one and octogenarian in-laws so fearful of dying they refused to entertain any end-of-life discussions. “Some people write in journals,” the theater veteran remembers of her efforts to process the situation. “I’m going to write about my cousin’s death as a play.”
That exercise resulted in The Grief Dialogues, a series of short plays structured like The Vagina Monologues, but with actors exploring scenarios centered on grief, death and dying. The 90-minute production, which invites a grief counselor on stage to lead an audience Q&A after every show, immediately resonated with people, says Coplan, who credits the play’s passive, third-party presentation as a safe way to broach a taboo topic. “By sharing my stories that way, which you could just take as strictly theatrical or you could take it as entertainment,” people finally started to open up, she says. “Suddenly, people who were afraid to talk about death in general, or their own experiences with grief, all of a sudden wanted to share their stories.”
It was while applying for grants for her production that Coplan came across The Order of the Good Death, a Los Angeles–based group of funeral-industry insiders, academics and artists seeking to promote a culture of “death positivity.” She was especially taken by the group’s Death Salon, a weekend conference on mortality styled in the vein of an 18th-century gathering of intellectuals, so much so that she volunteered to bring the event to Seattle. “It was kind of like a Comic-Con for death,” says Coplan, recalling the Victorian-style hairstyles, makeup and dress on display during the sold-out affair, which took place early in September 2017, in partnership with the UW School of Social Work.
The event marked an important turning point for Seattle’s death community by uniting the diverse leaders of a fragmented movement that had so far existed on the relative fringe. Presentations were delivered by Chanel Reynolds, whose husband’s untimely death led her to found GYST (Get Your Shit Together), a website introducing others to the easily avoided world of wills and life insurance. Other presentations included a Death with Dignity panel moderated by Sally McLaughlin, executive director of End of Life Washington; an introduction to green burials; a film about Death Cafes; and an exploration of postmortem pet options with Caitlin Doughty, the 34-year-old mortician who founded The Order of the Good Death in 2011. Lindhorst, the UW professor, explained the natural signs and symptoms of approaching death, knowledge that’s becoming increasingly rare as fewer people die at home. Nora Menkin, executive director of The Co-op Funeral Home of People’s Memorial—the country’s oldest and largest funeral cooperative and also a Death Salon cosponsor—examined alternative death care. Katrina Spade, the founder of Recompose, described her pioneering efforts to transform human remains into soil. On the first night, The Grief Dialogues debuted to a full house at the UW’s Ethnic Cultural Theatre.
“People who are into this, they’re hungry for it,” says Jacobs of the Ernest Becker Foundation, describing the Death Salon as a “critical community builder,” which has a mission similar to the foundation’s of providing “a home” for like-minded seekers. Along with cosponsoring the event—and participating in Death Salons in Philadelphia and Boston—the foundation facilitated a lunchtime dialogue, allowing guests to break from the conference format and engage in a round-table discussion about death.
The success of the Death Salon conference is one indication of our region’s relative death positivity, which could be attributed to the sheer number of innovators working in this space. “The good-death movement, or the death-positivity movement, used to be defined by a couple of individuals,” says Hebb. “Now, there’s a huge community of thought leaders, practitioners and enthusiasts, so that’s the big change,” he says. “It’s a very multidisciplinary community of people considering these issues,” he says, pointing to the mix of artists, entrepreneurs, doctors and “blue-chip establishment folks,” like Cambia, an organization that runs an entire center devoted to palliative care at the University of Washington, feeding Seattle’s “unique influence and impact.”
Such attitudes could also be influenced by our diversity, speculates Lindhorst, who points to our large Asian population as an example. Religions originating in Asia, she says, “have a very different kind of orientation towards death,” contrasting the Christian biblical literalist interpretation of death with Buddhist movements flourishing on the similarly progressive West Coast. “In many Asian cultures, that idea of integrating daily thinking about death is actually part of the spiritual condition as opposed to the dominant avoidance that we have here in the United States.” Social media, which makes it easier than ever to find and share information, also factors into the death-positive movement’s recent swell.
“I think more of us are talking about death and grief in a very open way,” says Coplan, describing today’s conversations about death as less a “macabre, voyeur” issue and more of an academic one, even if society still has some way to go. “I actually give the millennials a lot of credit for this kind of chipping away of the stigma around talking about death,” says Coplan, who has two millennial sons and meets plenty more at her shows. “They are incredulous that their parents are getting so worked up and don’t want to talk about death,” she says, describing the younger generation’s lack of fear regarding what they know to be a natural eventuality. “We talk about sex, we talk about drugs, why don’t we talk about death?”
Why Talk About Death?
There are lots of good reasons to talk about death, and not only because such discussion helps us prepare for the inevitable. Completing your advance directive, a set of legal documents that detail your last wishes, and communicating its contents and location to loved ones clarifies your thoughts on life support and other medical interventions. (Advance directive forms are available from your physician or most health care organizations.)
Sharing your post-life wishes up front removes any guesswork involving the funeral, which, pending legislation scheduled for the upcoming January session in Olympia, could soon extend beyond the standard burial and cremation options to include alkaline hydrolysis, a water-based cremation also known as “aquamation,” and recomposition, a natural process that converts human remains into soil. Communicating the contents of your will and choosing an executor of your estate helps avoid surprises and legal pushback. Moreover, having these conversations beforehand alleviates stress on your loved ones, allowing them to avoid making difficult decisions under pressure and simply focus on their grief.
“The people who have had the conversation and at least know what the deceased person wanted, if they got a chance to talk about what was important to them, they’re much more confident in making the decisions and going through the process,” says Nora Menkin, executive director of People’s Memorial Association and The Co-op Funeral Home on Capitol Hill. “The people that tend to have the hardest times are ones that didn’t have any conversation, therefore there was absolutely no preparation for it,” says Menkin, whose organization, in addition to regular end-of-life planning workshops, furnishes each of its 70,000-plus members with end-of-life planning documents that double as excellent conversation starters. “We also want to make sure it starts the conversation with the family, because it does the family absolutely no good for Mom to say, ‘Oh, it’s all taken care of,’ but not tell them what she wanted.”
A Few Tips for Getting the Conversation Started
It’s never been easier to instigate conversations about death, at least if you have a copy of Michael Hebb’s new book, Let’s Talk About Death (Over Dinner). The book builds a solid case for why the dinner table is actually the perfect place to discuss death and dying followed by ideas and tips—including what to eat, whom to toast, and a menu of conversation starters—for hosting your own death dinner at home.
Prompts include, but aren’t limited to, the following thought-provoking questions:
• If you had only 30 days left to live, how would you spend it?
• What is the most significant end-of-life experience of which you’ve been a part?
• Do you believe in the afterlife?
• Would you ever consider doctor-assisted suicide?
• If you were to design your own funeral or memorial, what would it look like?
• What song would you want played at your funeral? Who would sing it?
• What does a good death look like?
“It’s like a board game,” says Hebb of the death dinner series’ easily replicated structure, which is also available online. “The only thing we don’t provide is the food.”
Pull the headset over your eyes and the world around you fades. You have become 66-year-old Clay Crowder, and you are dying.
Your doctor looks into your eyes and quietly explains that medical treatments aren’t working. The lung cancer has spread. You have four to six months left.
Later at home, you doze while listening to your wife and two daughters discuss your care with a hospice worker. As death nears and pain intensifies, you see what’s happening inside your body. Your lungs and rib cage begin to heave rapidly. Medication eases your discomfort. Your breathing returns to a slow rattle.
Family members gather around your bed. You hear them talking. Prompted by a hospice nurse, your wife tells you that it’s all right to let go.
“It’s OK, honey,” she says. “You’ve got your girls here.”
It’s tough being Clay, a new interactive, virtual reality video that lets the participant go through one man’s end-of-life experience. Hospice of Southern Maine and the University of New England are using the computer simulation lab as a learning tool for health care professionals, medical students, hospice workers and patients’ loved ones.
A box of tissues is always nearby.
“It’s powerful,” said Susan Mason, clinical services manager for Hospice of Southern Maine. “I’ve been a hospice nurse for five years and I was truly shocked at how much I hadn’t considered before I went through the experience as Clay. You truly feel like you’re in it.”
Clay Crowder, family man and military veteran, is the creation of Embodied Labs, a Los Angeles-based company that has produced several computer sim labs designed to put people in a patient’s body.
The University of New England in Biddeford has been using the company’s virtual reality technology for nearly two years, to help medical students better understand what it’s like to experience health problems as common as hearing loss and as devastating as Alzheimer’s disease.
Now, Hospice of Southern Maine, based in Scarborough, is using the Clay lab to give staff and family members a better sense of what it’s like to die. Even the most experienced hospice caregivers can find themselves reaching for a tissue and learning something new.
Hospice CEO Daryl Cady said she believes the Clay lab has the power to change the way people feel about death and hospice care, especially for younger generations who are familiar with virtual reality technology.
“It’s so important that people understand how hospice can help at the end of life and not fear it,” Cady said. “If they take just 30 minutes to put on the VR goggles and stand in the shoes of someone with a terminal illness, just think of the change that could make.”
POPULATION AGES, DEMAND GROWS
Cady said the Clay lab also gives hospice staff and volunteers an opportunity to witness the conversations that happen when a physician delivers a terminal diagnosis and the family dynamics that often come into play.
Such education and outreach is expected to become increasingly important as Maine’s population continues to age and demand for hospice care grows.
Maine’s population is now solidly the oldest in the nation, with the highest median age of 44.7 years – meaning the younger population is dwindling – and tied, with Florida and Montana, for the largest proportion of residents age 65 and older – 19 percent of the state’s 1.3 million people, according to the U.S. Census.
Hospice of Southern Maine’s clinical teams – nurses, social workers and others – visit about 200 patients daily, up from about 130 patients daily just three years ago. Last year, the agency cared for a total of 1,641 patients – either at home or at Gosnell Memorial Hospice House in Scarborough – a 2 percent increase over the previous year, according to the nonprofit’s annual report.
Maine’s use of hospice services has grown steadily in the last decade, Cady said. When Hospice of Southern Maine started operating in 2004, about 9 percent of Medicare-eligible Mainers used hospice services, placing the state at 49th in the nation. By 2013, 57 percent of eligible Mainers were accessing hospice care and the state had moved to 25th in the nation, according to Medicare data.
“The Clay lab will help us educate the community about the end-of-life experience,” Cady said.
BASED ON FAMILY EXPERIENCE
Inside the Clay lab, with the virtual reality goggles over your eyes, you experience the transitions that patients and family members must make throughout the dying process.
When the doctor says you have a few months to live, you turn to your left and see the pained look on your wife’s face. To your right, your feisty daughter presses the doctor to explain why surgery is no longer an option. Your family is adamant. They won’t let you just “fade away.”
Later, you wind up in the emergency room after a serious fall. A compassionate nurse explains some of the benefits of hospice care. Mostly it’s about doing what you’re able to do and keeping you comfortable.
“It comes down to how you want to spend the time you have left,” she says.
Embodied Labs was started in 2016 by four young technology entrepreneurs. CEO Carrie Shaw, a medical illustrator and health educator, was just 19 years old when she helped care for her mother, who had early-onset Alzheimer’s.
That experience prompted Shaw to wonder if putting health care providers in their patients’ skin might make them more effective. Her older sister, Erin Washington, designs the company’s curriculum.
First, the company produced a sim lab experience called Alfred James, a 74-year-old African-American man with advanced macular degeneration and high-frequency hearing loss.
Next, they created Beatriz Rogers, a middle-aged Hispanic woman who progresses through the early, middle and late stages of Alzheimer’s. Clay Crowder is their latest.
LINKS TO UNE, MAINE HOSPICE
All three sim labs are required viewing in the geriatrics education program at UNE’s College of Osteopathic Medicine, one of the few med schools in the nation that require significant training in aging-related health issues.
“Students are always amazed at the experience of becoming Alfred or Beatriz or Clay,” said Marilyn Gugliucci, director of UNE’s geriatrics program. “It’s always interesting to see how they respond to Alfred’s frustration that his doctor is treating him as if he has cognitive impairment when he doesn’t. He just can’t see or hear well.”
Embodied Labs, UNE and Hospice of Southern Maine have developed mutually beneficial relationships, Gugliucci said.
The Clay lab was created after a team from Embodied Labs spent 48 hours at Gosnell House, interviewing staff members and witnessing all that they do, similar to the experience that several UNE med students have each year.
More recently, another team from Embodied Labs spent 48 hours in the dementia unit at the Maine Veterans’ Home in Scarborough, where UNE med students go to learn what it’s like to live in a nursing home, Gugliucci said.
The team’s experience will be woven into the next virtual lab, which will feature a Muslim woman who has Parkinson’s disease and Lewy body dementia, the second most common form of dementia after Alzheimer’s disease.
‘WHAT ACTIVE DYING LOOKS LIKE’
The Clay lab is presented in three segments: terminal diagnosis, decision to start hospice care and death.
“You see what active dying looks like, including what actually happens to the body,” Carrie Shaw said. “Our goal was to make something that’s not scary or grotesque, but it is informational.”
The last segment takes place in Clay’s bedroom.
Again, you are Clay.
Your eyes are nearly closed and your vision limited as family members and caregivers come and go. You hear them talk about your cold feet and your blue hands. Your daughter wonders if you need a feeding tube. The hospice nurse quells her concerns about your declining need for food.
Your death is shown symbolically. An imaginary great blue heron that has visited you before, capturing your fading attention to this world, appears again and flies off from the foot of your bed.
You watch the rest from above as your wife and daughters take turns saying goodbye.
The hospice nurse returns to bathe and dress you in your military uniform. She speaks to you in a gentle, now familiar voice, as if you are still alive.
“Mr. Crowder, we’re going to take care of your body now, OK?” she asks.
Your experience as Clay Crowder ends as your casket, draped in an American flag, is wheeled out of the house.
“The human brain learns from stories,” says Traverse City birth and death doula, Krista Cain. As she sits with a mug of hot herbal tea at Cuppa Joe in the Village at Grand Traverse Commons, she explains her own story and the not-so-strange duality of her business, Sweetwater Doula, this way: Everyone experiences birth and death. Whether you’re experiencing them directly or through someone close to you, they’re an inevitability. They’re both also mammoth experiences marked by extreme emotion, hospital visits, and ceremony. Each of these experiences, she says, is a wave that smacks our bodies and minds repeatedly back down into the fray. Each is exhausting. But, she asks, “Why not ride [that experience] and let it take you in the direction you want to go? I want my teaching to be a surfboard.”
A doula is not a medical practitioner. A person working as a doula is not a doctor or a midwife; he or, more commonly, she is a guide.
Doula is a Greek word that was appropriated in the ’80s to describe a female assistant,” says Cain, but the definition has since expanded to describe someone who helps others during intimate emotional and physical events. Becoming a doula isn’t something with a hard start or stop, like a medical degree or a teacher certification. It’s common life experiences. “Walking people through life is a softer line,” she says.
Cain’s own line toward becoming a doula wasn’t a direct one. She originally hails from Southern California. She has a background in education and worked as a high school math teacher before coming to Michigan. But when she and her husband, who grew up in Traverse City, moved to northern Michigan in 2011, Cain, who was pregnant at the time, had a jarring resolution: “I’m not here to teach math. I’m here to teach people.”
Her transition into teaching about birth and death began with a certification in the Lamaze technique, which she still teaches alongside her workshops in birth and death. As she taught, she began to see that there were some holes in her personal experience with birth: She had never attended a birth other than her own. Her training as a birth doula began from a desire to offer even deeper knowledge and empathy to her clients.
Likewise, another life experience led her to expand her business to include not only guidance in birth but also in death. In particular, experiencing the death of her young goddaughter showed her how helpful it is to approach death in whatever way makes most sense to the person experiencing it. Death is certain, yet always feels unexpected.
Cain began training as— what she calls — a “death doula” in 2016, with an organization based in California called Bridging Transitions. The mother of one of its founders lived on the Leelanau Peninsula before she passed away in 2016. Cain was able to participate and assist the family during this time. She learned about both the scientific and social nature of death and dying.
Funeral Director and owner of Life Story Funeral Home, Vaughn Seavolt, worked directly with Cain during the funeral for a family who wanted to participate in all aspects of their father’s death. He said he sees a lot of value for both the person passing and the loved ones left behind.
“Having a death doula participate made it very meaningful for the family,” says Seavolt, “I think that it’s very rewarding and very healthy for families who want to participate as much as they want to.”
Cain says birth and death are extremely social experiences, and a doula helps with the social needs and pressures surrounding these major life transitions.
“A doula is a person who is skilled to walk beside you — your family, your partner — to meet your needs as you go through these changes,” says Cain. She will help you and your family in whatever way you need, from deciding what sort of service you want (do you even want a service?) to finding a place in the refrigerator for all the casseroles you’ve received.
“It’s not all about green burials,” says Cain. “You can do this with a body preserved in formaldehyde. You can do this with someone who’s been cremated.” On her website, Cain talks about how the ceremony surrounding the death of a loved one can be exactly what you make of it. It can take place at a funeral home, the hospital, a loved one’s home — whatever makes most sense for your situation. It can have as much or as little religion as is right for you and your family and friends. “There are religious traditions that guide the day, and there are ways you can walk alongside those traditions to serve the needs of the people who are carrying them out,” says Cain.
Most importantly, she provides both information and validation for your personal choices. In birthing and dying, what is right for one person might not be right for another, and that’s OK, Cain says.
Explains on of Cain’s birth clients: “It is also refreshing to hear people talk openly and without judgment about ‘taboo’ topics like postpartum depression and mental health counseling, miscarriage and infertility.”
Cain is adamant about empowering her clients through education. “We have a right to know about this stuff,” she says, “[both the] transformative experience of it and the nuts and bolts.”
A quick internet search reveals that end-of-life doulas are on the rise. There are lots of names for it: “end-of-life transition guide” or even “midwife of the veil,” but Cain prefers to keep things simple and bypass the poetry.
“Right now I straight up say ‘Death Doula.’ The reason I say that is because it’s really reallyclear. I don’t want to have to be that blunt, but we’ve done such a good job at covering it up.”
She’s working to uncover these topics, though she recognizes that it takes a fair amount of bravery to approach them openly. Cain often hosts workshops in both life and death. Who are they for? “Anyone with a life span!” she says, laughing. “If you’ve got a life span, you might at some point want to consider thinking about these things.”
Matters of Life and Death
Want to learn more about Cain, her services, or upcoming workshops? Check out www.sweetwaterdoula.com.
Any pet owner will tell you that losing them is as great a pain as losing any member of the family. It’s in these moments we’re at our most vulnerable. One brave photographer has taken on the task of capturing such fragile moments in a series that documents owners struggling to cope in the last moments of their animal’s life.
Ross Taylor’s powerful new series is one that’s sure to bring a tear to the eye of any pet owner. His inspiration came after being “profoundly moved” by witnessing a friend struggle with the deteriorating health of her pet and her subsequent decision of euthanasia. The collection of images, he says, explores the intimacy of the human-animal bond, specifically “the last moments before and after the passing of a pet at home with their owner.”
The images were taken in Tampa Bay, Florida throughout 2017-18 and involved working closely with the families involved. The pet owners seen in the images were aided by veterinarians from Lap of Love, a pet euthanasia service that allows for a peaceful passing at home. Founded by Dani McVety, the organization has been working with Caring Pathways, all of whom Taylor expresses utmost gratitude for. “It couldn’t be done without their willingness to participate and belief in the project… They have my respect,” Taylor said.
While difficult, the at-home euthanasia process can be one that mitigates some of the painful reality of the end of life. It’s worth noting that the vets I’ve worked with are some of the most compassionate people I’ve met and always offer the families a chance to have a respectful moment afterwards with their beloved pet. It’s in stillness of these moments that I sometimes felt the most emotional for everyone involved.
If you were as moved as we were by this powerful series, you can see more of Taylor’s work (some of which saw him nominated for a Pulitzer Prize) at his website and Instagram.