- Steven Vargo
- Jude Higgins
Jeane Martha Kane didn't get everything she wanted in life, but she was absolutely going to get everything in death.
When she was diagnosed with terminal cancer at age 84, she decided against chemotherapy, which could have extended her life but would have left her feeling miserable—a cure perhaps worse than the disease.
I accepted this, but she still tried to console me in her usual witty way.
"I've lived a long life, Rich," she said. "I've outlived my expiration date!"
She wanted no funeral, no memorial service.
"Too expensive! Such a waste of money!"
And definitely no burial in a cemetery surrounded by strangers and Republicans.
"Just stick me in the oven and burn me up!"
About halfway through her five-month illness, she told me she wanted to try marijuana for the first time, to see if it made her feel better or gave her an appetite. I scored some, went to her apartment and was inside for about a minute when she whispered, as if about to do something naughty, "Did you get my Mary Jane?"
I also told her what I would do with her ashes: take small amounts and scatter them in her favorite places where we'd traveled or spent time together. And I'd shoot a video of each toss to preserve the moments for her other kids. She seemed to really like that.
"You were her death doula," Jude Higgins says to me after I tell her Mom's story.
I was ... what? I don't know about that. But Higgins would know a doula when she sees one. A cultural anthropology professor at Salt Lake Community College and founder of HELD (Help from an End-of-Life Doula), she says doulas are transitional coaches who assist people moving toward death. (There are also more-common birth doulas.) They can do anything from helping the dying person make a photo album or scrapbook to leave their children, to guiding them through any lingering feelings of grief, regret or guilt, to giving families a break from holding vigil so they can sleep, to simply washing the dishes.
Unlike hospice workers, doulas aren't medical providers, but they're often just as important. Just their mere presence and availability can be invaluable.
And more people are becoming doulas. ("Doula" is Greek for "female servant," but men can be doulas, too.) Last year, Money magazine called death doulas and other "death care" occupations a "viable career track."
In Utah, new programs at hospitals are designed to comfort the dying, and new monthly groups where people talk freely, often humorously, about what's usually considered an uncomfortable, even taboo, subject—and finding out it doesn't really have to be.
What's going on here? Higgins thinks she knows.
"I really think we're moving toward a more death-positive culture," she says. "People are living longer and they want more control over the end of their life, and that includes doula work and creating sacred spaces. We help them in that in-between transition space that family members usually aren't comfortable with, helping them cope with their emotions and giving power back to the family instead of doctors and nurses in a hospital."
- Jackelin Slack
- Michelle Marthia
"We honor the end of life for our pets more than we do for loved ones," says Michelle Marthia, who became a doula through Higgins' HELD program. "Our medical system is not geared toward a dignified death where people get to make their own choices. American culture is behind in a lot of ways, like how we operate our health care system. We're less connected to the Earth than other cultures. But I think this is a conversation that's rising more and more to the surface right now."
Marthia came to doula work through her own cancer diagnosis, when she recognized she had an ability to be a safe, calming presence for people going through similar crises.
"It's a very spiritual experience," she says. "We get to create a space where a patient's wishes are honored in the best way possible. Anything we can do to alleviate some of the burden the family is carrying during that time, we need to be there. If they need someone to talk to in the kitchen over a cup of tea, that's what we do. If they need us to wash the body after they have passed, that's what we do. If they need us to call a funeral home, that's what we do. It's emotionally fraught, but it's also this beautiful thing to be a witness to. We're invited into these spaces with these families who are strangers until we meet them."
From her cancer experience, Marthia founded Heal Courageously, a nonprofit that helps people deal with life-changing illness through free photo portraits—a way to frame their stories as something larger than a diagnosis or statistic.
She was inspired to create the project after the death of a close friend.
"I was with him two days before he died, and that experience gutted me," Marthia says. "There was this keen sense of wanting to have been able to do more. He had fought so hard for so many years and beat so many odds. He was a hero. I experienced the honor of being with him at the end and I think he was the catalyst for me wanting to help people in a different way."
- Steven Vargo
- Mindy Relyea
No One Dies Alone
"We have this preconceived notion that dying is going to be a hell on earth," death doula Mindy Relyea says, "but that hasn't been my experience with those that I've sat with. Especially if there's some dialogue created beforehand. It can be loving, intimate and nurturing, it doesn't have to be this shocking, disruptive thing. There'll always be grief and sadness when we lose somebody we love, but the process doesn't have to be so jolting."
Relyea isn't only a doula, she's also a volunteer in the University of Utah Hospital's No One Dies Alone program, where people sit and spend time with actively dying patients who don't have any family or friends who can be with them. (A similar program is running at Intermountain Medical Center.)
NODA began in Oregon in 2001 and has grown internationally. University Hospital's program started last year and now has more than 50 volunteers, who each take three-hour shifts sitting with as many as five patients a month.
Relyea says she used to be petrified of dying, but she experienced something profound following the death of her stepmother.
"It was kind of unexpected," she says. "My dad and I just sat alone with her body after her passing. But I was so comfortable and felt so grateful for having that time. She was dead, but her body was with us and it felt, for me, very honoring and supporting for my dad. It was super intimate to be there."
The people who NODA volunteers attend might have family or friends who want to be with them, Relyea says, but individual circumstances don't always make it possible.
"Sometimes they've been sick for a really long time and family members have used up all of their leave from work. They were here waiting for that person to pass away, but they don't pass, so they had to go home. There was one man here whose brother was watching him. He had to work all day, but he didn't want his brother to be alone; he could only be here evenings. So we had volunteers sitting with him during the day and it gave him so much peace to know that his brother wasn't alone."
Relyea has also bonded closely with some of the patients, making it emotionally difficult when they eventually die.
One gentleman, in particular, stands out. "He had really high anxiety and none of his family could be there in time to be with him," she recalls. "I met him when he was awake and alert, but he was really scared and he just kept saying, 'Please don't leave me, I don't want to be alone.' We actually got to kind of hang out, because he was a musician who lived by Jimi Hendrix growing up, and my sons all love Jimi Hendrix, so we had this really great rapport. Then when he died, I had a lot of the same emotions that people who loved him had."
Sometimes, not all NODA shifts can be covered 24/7. Relyea was particularly guilt-ridden when she arrived late for a sitting only to find out that the patient had passed.
"I had barely gotten back from San Francisco and during the time that I should have been there, he died. And I was devastated," she says. "I remember sitting with one of the chaplains and she just let me cry. I told her he died alone; we're supposed to be here and he died alone. I just felt so horrible."
But Relyea reflects that it was a deeply profound learning experience, something that didn't have anything to do with her.
"Even those people who have loved ones who are right by their side, they might have to go to the bathroom and they come back and they've died, and that person feels so awful that they weren't there. So even though it's called No One Dies Alone, death comes when death comes. And that's just the way it is."
- Steven Vargo
- Brian Zenger
Brian Zenger, co-director of University Hospital's NODA program, says that although volunteers might not always be present at the actual time of a patient's death, they are present during the dying process.
"That's what's important," Zenger says. "We're providing human connection during the death process that makes that patient not feel alone, even if they are physically alone when they die. There are countless stories from family members saying they were with their dad, then they left the room and they died. And while there are guilt feelings, the one thing I will hit home is that those patients are choosing to do that. Maybe they don't want you to see that. That's their choice, they are really making those decisions. Which is a much more powerful way of thinking about it—that it's not you, it never was, even if you feel that way."
Zenger says NODA programs reflect a growing change in attitudes about death, making it more personal, more human and less clinical.
"A lot of physicians, in my opinion, are pretty bad at sitting and being present with suffering and pain," Zenger, who's also a medical student at the hospital, says. "But death is becoming more predictable in terms of years and life expectancy, so people are having to think about what they really want if they get diagnosed with a terminal disease. It's a fundamental shift in the way people think about death because it's become a much more controlled part of life."
Cathy Gray worked at University Hospital as a nurse for 34 years before her recent retirement and is now a NODA volunteer.
"When I was in school, people would be referred to by their diagnosis—the cancer patient in bed 9, or whatever. It wouldn't be, Jim Smith who has cancer. No name or face, just a diagnosis and a room number. Nurses would do their treatments and medications and that's it."
Gray has seen an evolution in approaches to dying at the medical level. Early in her career, she worked in the pediatric unit, where "kids died all the time," she says.
"That's where I gained my first interest in trying to make death an OK experience for the child and more importantly for their family," she says. "It turned out to be one of the things I enjoyed doing the most. I really felt a connection to those kids. For them, death wasn't a scary thing. They talked about what they might experience and we let them know they would be kept as comfortable and safe as possible. We also broke hospital rules, like when kids wanted to have their pets with them. We let their dogs stay all the time."
As a student nurse, Gray was invited to go to the funeral of a cystic fibrosis patient, something she wasn't taught how to deal with in school.
"Quite the opposite," she remembers. "We were told we're the professionals, keep it professional, don't get emotionally involved. You are here and the family is over there. But I learned I could be a much better nurse if I became a little personally involved instead of going by the textbook. I had no problem letting go of that old way of thinking early on. That was just not going to be me as a nurse. To not get to know about them, their likes and dislikes, didn't make any sense to me. It made me more human."
- Rich Kane
- Liana Teteberg at Death Cafe
Life is on the Menu at the Death Café
It's a cool summer evening in a Sugar House backyard. Tiki torches are blazing. Empty patio chairs are set up in a circle. On a large serving table, there's cheese, rice crackers, a tasty broccoli salad, lemon water, chocolate fudge and plenty of wine.
Guests start arriving, bringing more food, more wine. Name tags are slapped on shirts. It's an age- and gender-diverse group that eventually grows to 12—the most off-the-hook party you could go to if you want to talk about death.
Such is the point of the Death Café, a movement that started in London then migrated Stateside. This Utah group has been active since 2014, and on this night, there are hospice workers, NODA volunteers, philosophy professors and ordinary folks who are all in agreement that not enough people talk about dying. So they will.
Anyone can come to these once-a-month gatherings, where the talk quickly becomes free-flowing, even fun:
"I don't like not knowing the end of stories. Will my grandkids get married? I won't ever know. They're only 5."
"Death could just be the next adventure, like a rocket ride to another place. Or the flame could just go out and that's that."
"I want to be the rock in my family, but when my kids ask me questions about this, I don't know how to answer them."
"My children won't talk about it ... they just won't."
"I would love my vet to come give me a shot and I'd be gone in seconds."
"I think most people aren't afraid of dying as much as dying miserably. That's why we have to have assisted suicide."
"I've heard of women plaster-casting their husband's ashes into the shape of a dildo."
Organizer Liana Teteberg, who owns a hospice in Summit Park, says people need to get more comfortable with the subject of dying, and Death Cafés are a great, informal way of doing that. They've had as many as 20 show up, and the food and wine is always a nice incentive.
"It's one of the things I look forward to every month and we've all become friends," she says. "We always have someone new. Some of the most interesting ones are when people describe what they would like their own death to look like, and they're so different from one to the other. Some wanted to go in their sleep, some wanted very elaborate ceremonies, some hadn't really thought about it."
Death and dying have always been hushed topics, Teteberg says, not just in Utah but elsewhere.
"People have questions and concerns; they want to just be able to talk about it. They want to express themselves and hear what other people have to say. And like anything, when you put it on the table and start to have conversations about it, it becomes not such a heavy thing after all."
Teteberg believes there's a strong delusion that dying of a terminal illness automatically means something went wrong—that a doctor missed a diagnosis or didn't treat the patient early enough. That's part of a long list of negatives about fatal illness stretching back a century, when the dead were displayed in the parlors of homes for days before burial. That's where the term "living room" comes from, a neat rebranding so people would feel comfortable being in that room again.
But one way or another, of course, the Great Equalizer visits every one. And Teteberg knows that the more people accept that, the better off we'll be.
"Our body has got so many miles, then its over. We have to start asking ourselves what quality of death are we interested in having? What would you like to see happen? How much pain are you willing to tolerate? How much discomfort do you want to deal with? What do you want done after you're gone? These are the kind of talks we need to have and they're finally becoming more prevalent."
Ashes to Ashes
A year after she died, I stood on a Southern California beach where Mom and I spent late summer afternoons in the '70s. She always liked the ocean, so I dug a small hole near the surf break, made sure nobody was looking—I doubt that leaving human cremains in public spaces is very legal—and poured out a small Ziploc of her ashes, just like I told her I'd do.
Another year, another baggie, this time emptied into a river in a park where she spent a couple summers working in the 1950s, in a hidden, quiet area lined with gigantic pine trees.
Then this year, the Deep South, in a region lush with plant life, drenched in history and ghosts, where she could now be among them.
And New Orleans, which we first saw on a 1991 vacation. She went into the Mississippi, near a spot off the French Quarter where there's a Mardi Gras tradition of people spreading ashes of relatives in the river during the St. Anne's parade.
More later still, but just a sprinkling, into a red brick planter in the magnolia-treed courtyard of our favorite hotel.
There will be more places. There's a list. New England. Europe. Québec. Just not a desert. Mom hated the desert.
"What you're doing is beautiful," Higgins tells me. "You're turning grief and reframing it into memories, and that's what death doulas do. You did legacy and vigil work for her. She was taking you through the steps of what she wanted done and you were honoring her wishes."
By Ray Howze
Heal Courageously's founder, Michelle Marthia, takes great care to help capture people's beauty as they deal with life-threatening illnesses. Marthia fought cancer in 2010 and had the words "Heal Courageously" inscribed on a necklace during her treatment. A few years later, she founded the photo project to provide a gift to others.
"This is both nostalgic and emotional and leaves me stretched by my gratitude and grief," Marthia says about curating the project. "These images aren't intended for the public, but many families allow us to share a glimpse of their private lives so we can connect to our community and reach more families."
- Nata Stone and Jess Downer
"This image reflects pure joy. A young mother has finished cancer treatment and is enjoying the simplest of moments with her family."
- Alex Adams
"We faded into the background while this family gathered around their father who had Alzheimer's. This tender moment between him and his wife is filled with love."
- Jackelin Slack
"Knowing this man and his family has changed the way I exist in the world. He was real and funny and kind. He was irreverent and open and honest. He was brave and angry and clawing for every moment."
- Alex Adams
"This delightful young boy and his parents spent nearly one year living at the Ronald McDonald House while he endured surgeries and chemo. His face reflects the inherent joy and resiliency of children."
- Jackelin Slack
"This sweet boy was born with a complicated heart that couldn't be repaired. His family decided to return home so he could pass peacefully, but not before celebrating his life with the many who had supported them in his care."
- Will Michael
"This photo was taken shortly before an extraordinary woman was taken too soon by cancer. This represents love, family, care, comfort and grief all at once. The moment is stunning and beautiful."