Whether or not we want to plan for it, we all inevitably die. A hard subject for some to grasp, death can bring forth a variety of emotions, conflict, or even chaos, depending on whether or not the deceased had a pre-established estate plan.
To some extent, everyone has assets, but what happens when music is one of those assets—specifically song lyrics and the recording of those songs? We often think about the physical attributes of an estate plan after someone dies—like jewelry, amplifiers, and guitars—but how does a musician plan their legacy that will proceed their death?
Some Minnesota musicians and artists have developed assets over time and have developed their own plans for their music as part of their estate planning process.
Musician Chris Osgood, one-third of the punk-rock trio The Suicide Commandos, has spent time organizing his own musical assets with his fellow bandmates, and for himself, as he continues his own estate-planning process.
“People like myself have a tendency to forget non-physical property is still an asset,” Osgood says over the phone. “When you are doing your death planning, the first thing you think about is, who gets which guitar and objects? The last thing you think about is intellectual property, like your songs, that hopefully will continue.”
Working with musicians, artists, and other talent, attorney Ken Abdo has helped create estate plans that include music assets and legacy planning.
“An artist’s music assets, in the context of estate planning, are really just one of many assets that an artist has,” Abdo says. “The estate planning does not limit itself just to the music aspect. They may have a house, debts, other property, other children. It is part of the whole estate of an individual.”
When you are a musician, prominently known or not, you may have the additional, non-physical assets of copyright, trademark, and even name and likeness potentially included in estate planning. All of these assets together are better known in estate planning as intellectual property.
“When we are talking about music assets, we are really talking about the greater world of intellectual property,” says Abdo. “Copyright is one of those parts. There are two different copyrights involved in the recording of music: there is the underlying composition or songwriting part of it, and then there is the recorded version of that song.”
Protected under United States copyright law, a musician’s compositions and recordings are preserved for 70 years past their death. Musical assets can continue making money well past the death of the musician—an estate plan can determine who benefits from or administers these royalties. Once the copyright period expires, the music enters into the public domain, which helps explain the popularity and exorbitant recordings of songs like “Silent Night,” or other classical hits—because the originator is no longer protected, anyone can write and record the song without the penalty of payment.
Osgood and the other members of The Suicide Commandos have a musical history that spans back to 1975. Planning everything from songwriting credits to publishing rights to trademark, Osgood and his fellow bandmates recently meticulously combed through their catalog and assigned the appropriate credits for their music to each band member.
“When we put out the last record “Time Bomb,” we got a publishing deal from a company called Words and Music down in Nashville,” says Osgood. “It was mandatory when we accepted that contract, to go through each song of our entire catalog and figure out who wrote what and make sure that all parties were content with the fractions. It was easy for us to agree. Songwriting credits are pretty easy to divvy up. Song lyrics hold equal weight to the music.”
A newer technology is helping to preserve intellectual property: holograms. Holographic tours have grown in popularity amongst some musicians, and although the process to create a holographic tour is complicated, it can help protect an artist’s name and likeness, trademark rights, copyright rights, and enable an income source for heirs.
As for reputation and how musicians want people to see their image after death, they can include that in their estate planning under the right of publicity, also known as “personality rights,” which applies to 23 states and controls the commercial use of their identity.
“When you die, that is an asset, where you can bequeath the rights to your name and likeness to another person,” says Abdo. “If you died and were famous and branded, you would want to make sure that your name and likeness fall into the right hands. You would designate that person for trustee, or someone who could shepherd your legacy by making good and correct use with guidance, to keep your legacy going—it survives your death. [For] most people, when you die, you’re dead. But when you are a famous person, you have a name and likeness that has value after your death.”
Although most people do not start their estate planning process until their 50s according to a national survey, Osgood believes being pragmatic is important when dealing with assets- especially when creative assets such as music, are a part of the process.
“It’s still mailbox money and money that can go to someone who is handling my estate,” says Osgood. “I think a lot of people overlook that and don’t think a lot about it. For most of us this side of Steely Dan, it’s not that big of a deal one way or another. It could be, and it often is, if someone’s song gets picked up for a movie or an ad posthumously.”
The Suicide Commandos performing for the Current’s 10th Anniversary Celebrations at the Turf Club
For anyone that has music as an asset, Osgood believes that musicians should include their work in their planning, even if they do not work full-time in the industry.
“For any creative person, don’t sell yourself short or think that because you are not making a complete living from your art, whatever it happens to be, that it isn’t important or that it wouldn’t be important for future generations,” says Osgood.
Reflecting on artists like Aretha Franklin, who recently made headlines for not having a formal estate plan, Osgood believes that musicians and others who have assets can learn from those public eye experiences.
“It’s a cautionary tale for anyone,” says Osgood. “You are taken aback that somebody of that stature hasn’t given that some thought. Maybe they didn’t because they were afraid of death, or something spooked them. It doesn’t spook me. It’s the last part of life. You have to prepare for it the same way you fill up your car before you take it on a trip.”
More than 500 years ago, when the Spanish Conquistadors landed in what is now Mexico, they encountered natives practicing a ritual that seemed to mock death.
It was a ritual the indigenous people had been practicing at least 3,000 years. A ritual the Spaniards would try unsuccessfully to eradicate.
A ritual known today as Dia de los Muertos, or Day of the Dead.
The ritual is celebrated in Mexico and certain parts of the United States. Although the ritual has since been merged with Catholic theology, it still maintains the basic principles of the Aztec ritual, such as the use of skulls.
Today, people don wooden skull masks called calacas and dance in honor of their deceased relatives. The wooden skulls are also placed on altars that are dedicated to the dead. Sugar skulls, made with the names of the dead person on the forehead, are eaten by a relative or friend, according to Mary J. Adrade, who has written three books on the ritual.
The Aztecs and other Meso-American civilizations kept skulls as trophies and displayed them during the ritual. The skulls were used to symbolize death and rebirth.
The skulls were used to honor the dead, whom the Aztecs and other Meso-American civilizations believed came back to visit during the monthlong ritual.
Unlike the Spaniards, who viewed death as the end of life, the natives viewed it as the continuation of life. Instead of fearing death, they embraced it. To them, life was a dream and only in death did they become truly awake.
“The pre-Hispanic people honored duality as being dynamic,” said Christina Gonzalez, senior lecturer on Hispanic issues at Arizona State University. “They didn’t separate death from pain, wealth from poverty like they did in Western cultures.”
However, the Spaniards considered the ritual to be sacrilegious. They perceived the indigenous people to be barbaric and pagan.
In their attempts to convert them to Catholicism, the Spaniards tried to kill the ritual.
But like the old Aztec spirits, the ritual refused to die.
To make the ritual more Christian, the Spaniards moved it so it coincided with All Saints’ Day and All Souls’ Day (Nov. 1 and 2), which is when it is celebrated today.
Previously it fell on the ninth month of the Aztec Solar Calendar, approximately the beginning of August, and was celebrated for the entire month. Festivities were presided over by the goddess Mictecacihuatl. The goddess, known as “Lady of the Dead,” was believed to have died at birth, Andrade said.
Today, Day of the Dead is celebrated in Mexico and in certain parts of the United States and Central America.
“It’s celebrated different depending on where you go,” Gonzalez said.
In rural Mexico, people visit the cemetery where their loved ones are buried. They decorate gravesites with marigold flowers and candles. They bring toys for dead children and bottles of tequila to adults. They sit on picnic blankets next to gravesites and eat the favorite food of their loved ones.
In Guadalupe, the ritual is celebrated much like it is in rural Mexico.
“Here the people spend the day in the cemetery,” said Esther Cota, the parish secretary at the Our Lady of Guadalupe Church. “The graves are decorated real pretty by the people.”
Often, the worst kind of dinner party is one with a bunch of strangers: It’s hard to break the ice, and if small talk dies, you might end up sitting in stony silence. But the dinner I spent Sunday at Ballard’s Brimmer & Heeltap came preloaded with excited chatter.
This was all the more surprising given the preordained topic: Death. And before I’d even picked up my fork, one purple-haired seatmate, Elly, was already telling us from across the dinner table about the passing of her grandma.
Elly said her grandmother’s death was about as clean as they come. Her grandmother was comfortable talking about it with Elly, she had distributed her belongings long before it happened, and her family was close by at the time of her passing. She even had a “death doula” to assist her during the process. Grandma planned it all out.
“That’s a good death,” Amanda, another participant, said enthusiastically at the end of Elly’s story. Everyone else at the table nodded in agreement. About 40 of us had gathered for Death Over Dinner, a Seattle-based nonprofit dedicated to reversing the pain and suffering associated with mortality.
Dying well means different things to different people. Maybe it’s dying for a good cause, or just dying when you’re still cognizant of your surroundings. But planning my funeral now, at age 23, is something I’d never considered — until I heard about death positivity.
Death positivity is a movement to get people comfortable talking about their eventual demise. Washington is a uniquely good place for it. You can go to one of Washington’s numerous death conventions or parties, such as one hosted by the People’s Memorial Association (PMA) in December. Many of its biggest supporters, like PMA’s Executive Director Nora Menkin or Katrina Spade, founder of Recompose, make their home here. And most death-positive advocates know the statistic that although 80% of people want to die at home, only 20% actually do, so they say these conversations are a good way to learn the last wishes of the people you love and to express your own wishes before it’s too late.
For the environmentally inclined, Washington has long been on the cutting edge of what a green death could look like; death positivity is often linked with green options, which offer even more choices for people to consider when planning their deaths. This includes green funerals — basically, environmentally conscious funerals that can include everything from recomposition to water cremation to green burials (also known as natural burials), which allow the body to naturally decompose without preservatives. And a cemetery in Bellingham, Moles Farewell Tributes, became the first certified natural burial ground in an existing cemetery in the nation and the 12th cemetery certified overall by the Green Burials Council in January 2009.
In addition, “recomposition” (frequently called “human composting”) was legalized this year along with water cremation, adding to the list of environmentally conscious ways you can dispose of your body post-mortem. Water cremation, also known as alkaline hydrolysis, is basically cremation with hot, chemical-filled water instead of fire inside a pressurized vessel. (Water cremation of pets has been legal for much longer.)
Advocates say that the death positivity movement, combined with the legalization of more options, has moved forward conversations about it further than ever before.
“Death is having its moment right now, in a lot of ways,” says Brian Flowers, green burial coordinator at Moles Farewell Tributes. “So that education is happening at a pretty rapid pace.”
Michael Hebb, the founder of Death Over Dinner, is one of those advocates in Washington persuading people to talk with their loved ones about their mortality. While most of Hebb’s dinners happen independently among families (you can download a template to host your own from his website), the dinner I attended was one of the first around Seattle where participants had a chance to delve into death with strangers. For me, those strangers were Amanda and Elly, who are longtime friends, on my left, and a quieter, elderly couple, Sheryl and Bill, on my right. Each person was fairly comfortable talking about their deaths; Sheryl told the table that her last meal would involve potatoes, and Bill matter-of-factly said all he would want was a mango.
Hebb took a moment at the beginning of the dinner to walk participants, seated all around the restaurant, through the night’s proceedings: On each table was an envelope with five short questions about death, ranging from playful to serious. “What would you choose as your last meal?” “What are your wishes for your body after you die?”
But before we could answer, he brought our attention to the candles by our dinner plates.
“The first thing that happens at the table is we all take a moment and think about someone who has died, who had a powerful impact on our lives,” Hebb told us. “Really the first person that comes to mind.” Then, each participant was asked to give that person a short eulogy to their table before lighting the candle.
I knew mine in seconds. Hebb told us to hold on to that person, even if it made us uncomfortable. Vulnerability, he said, was key to making this work. So I held on.
Participants engage in conversation during a Death Over Dinner event at Brimmer & Heeltap in Ballard on Oct. 27, 2019. The dinner series, started by Michael Hebb in 2013, is meant to facilitate and normalize open conversations about death in a positive way.
* * *
Most people I talk to know what they want their funeral to look like. Some friends told me they wanted something cheap and easy. Others were quite specific: One roommate told me she wants her cremated ashes exploded in fireworks; another said she’d like her body detoxified and eaten up by mushrooms (she told me this while cooking mushroom risotto). An ex used to tell me he’d like his body shot out of a cannon. When I sent my sister the question over text, she replied seconds later: “Make me a tree for sure.”
My parents also had a response at the ready and told me they’d want a quick burial, no fancy stuff, the day after they die. In Guatemala, most funerals happen that way; there’s no weeklong preparation. When my Abuelito Quique passed away in Guatemala City, my dad flew out from the Seattle-Tacoma International Airport the night it happened and arrived just in time for the funeral services the following morning. Abuelito Quique’s funeral might qualify as “green” in the U.S. — or at least greener, since there’s no need to preserve the body through embalming or other chemicals.
Most Americans these days don’t pine for a cushioned casket in which to put their immaculately preserved corpse. In Washington, almost 80% choose cremation; the national average sits at about 50%, according to a 2017 study. Curiosity about greener funerals is on the rise, too. Adults over 40 interested in green funerals jumped nationally from 43% in 2010 to 64% in 2015, according to a Funeral and Memorial Information Council study.
“In the time that I’ve been doing this, it’s accelerated tremendously,” says Lucinda Herring, a green burial consultant and author of Reimagining Death. “I think that’s only going to grow, particularly with baby boomers who are taking care of their parents and themselves.”
But a greener death doesn’t mean an easier one. There are plenty of hoops to jump through before getting a body in the ground — especially for greener burials. Part of it is the lack of options. In Washington, only a handful of cemeteries allow green burials, some of which are certified by the Green Burial Council. Preplanning is often necessary in order to ensure that the deceased can even be taken to a green burial site.
“[Plots are] hard to get to so, numberwise, there’s probably enough to meet the demand right now, but they’re spread out geographically in a way that’s challenging for families,” Flowers says. At his location, he’s helped service families from cities as distant as Olympia or Boise, Idaho.
Until Herring helped perform her first green burial in the ’90s, she and her friends didn’t know that such a thing existed. A friend dying of breast cancer told her and others that she didn’t want her remains to go to a funeral director. She wanted a funeral at home. It was only after some research that Herring discovered it was possible and legal to care for the body immediately after death at home.
Still, Herring says the increase in public interest has made educating others a little easier. She also emphasizes the need to plan ahead.
“If you’re looking for a green burial plot, you should very much talk to cemeteries and ask if they provide green burial,” she says. “Because doing it at need if someone dies quickly is difficult.”
Some of those barriers to green burials are coming down. With the legalization of water cremation for humans this year, Washington bodies no longer have to be shipped to other states (typically Oregon) for the process. Flowers says Moles Farewell Tributes was one of only a dozen green burial sites when it opened its green cemetery in 2009.
“We’ve definitely seen a shift,” Flowers says. “Now, there’s over 300.”
Flowers and others say lack of information is the biggest barrier keeping green death options out of the mainstream. Spade, the founder of Recompose, says that when people are taken aback by the idea of composting their remains, she usually let’s let them mull over other options before pressing further.
“If you really think of the traditional method, [and] you think of embalming, you’d think, ‘Oh, that’s intense also,’ ” she says, “So honestly, I usually just let it lie. I think people need their own time to come around to it.”
After telling her about the dinner, I asked what I should do if I ran into a person like that myself. She laughed a little. That shouldn’t be an issue, she says: “If you’re attending Death Over Dinner, you’re perhaps more comfortable than the average person.”
* * *
We began to light our candles at the dinner table, and when it was my turn, I returned to third grade. Anisha was one of my best friends, a small Muslim girl with chubby cheeks who shared my adolescent love of the Disney Channel show Kim Possible, whose brother we tormented by hiding his Pokemon cards under her bed, who I would talk to for hours on the carpeted floor of her bedroom, and who passed away from heart failure one night a couple years into our friendship.
My parents told me in our driveway, next to our minivan on a slightly humid, overcast afternoon. We talked about what it meant, and about God. The rest came in pieces: the news of her funeral, which happened quickly and privately, and then the realization that I would never see her again. When I visited her parents’ house the week of her death, Anisha’s mother told mine that she’d looked like she was only sleeping. There were cookies on the table that I didn’t eat. I remember wanting one but passing because everything felt so strange that it didn’t make sense to enjoy chocolate chips.
I’ve told myself this story many times. Retelling it now feels like reciting a mantra, one that’s simplified in its repetition, but has become as much a part of my life as my name or the soft scar on my knee. When I encountered my next death, I can’t say I was ready, exactly, but I knew who to talk to about it.
Finding comfort in talking about death takes practice. Hebb told me that he hadn’t always had that himself. Conversations about death in his family were nonexistent. Hebb’s dad was over 70 when he was born, making it likely he would pass before Hebb graduated from college, or even high school. He realizes that logic now but says he didn’t think much about it when he was a kid. When his father died, Hebb was 13, and his family didn’t know how to talk about it.
“It really devastated our family,” he says. “The majority of the time we’re faced with this conversation, it’s when something has gone horribly wrong or when it’s about to.”
Hebb says his father didn’t get to explain what he wanted from his death, and his family was left with a pain they didn’t know how to process. Just knowing how to talk could have made the situation much different.
The five other guests at my table expressed varying degrees of comfort with talking about the deaths of those close to them. I’d never told the story of Anisha to a group of strangers, and the words felt odd coming out of my mouth (it didn’t help that this happened before we got appetizers). But there was also peace in the process. Everyone listened. I listened in return. And by dessert, we were already planning what we wanted our funerals to look like in detail. I’ve always wanted a burial I can call “green,” whether that means turning my body into mulch or something else. But I also realized I was willing to bend if a cheaper but still-green option was easier.
At the end of the dinner, just before everyone got up to leave, the restaurant’s owner tapped a glass to get our attention. There were two birthdays to celebrate, she told us. A chocolate cake was carried out from the kitchen and everyone began to sing “Happy Birthday.”
Ending a dinner about death with a birthday might make sense to a death-positive person: Most advocates will tell you that life and death aren’t so far apart. Spade put it simply, saying she believes “that humans are part of nature, even if they’re destroying it.”
We go back to where we came from. All bodies decompose. Green burials — and the acceptance that comes with them — simply reinforce that whatever is left of us eventually gives life to something else. If that’s what I choose, I’ll be giving life long after my dying breath.
At a death cafe inside Bigelow Chapel at Mount Auburn Cemetery, people gather to enjoy cake and tea while discussing death and mortality in a safe space.
By Olivia Deng
Before dying or almost dying, the conventional anecdote is that people see a flashback or a white light and have an out-of-body experience. But Barbara Olson, a retired social worker, saw darkness and Darth Vader as she started accepting her end. She had fallen out of a raft 20 years ago in Maine. “I kept having all these ‘Star Wars’ images of Darth Vader… Our guy on the raft [had] a ‘Star Wars’ name so that’s why I started thinking Darth Vader,” Olson said. “The other thing I kept thinking about is, I was with a man that I didn’t know that well … I was worried about my father and what he might think.”
These conversations arise at a death cafe, a gathering where people enjoy cake and tea while discussing death and mortality in a safe space. Death cafes can be held anywhere — a home, a coffee shop, and in this case, a cemetery. Inside the regal gothic revival-style Bigelow Chapel located on top of a hill at Mount Auburn Cemetery, a diverse gathering of strangers treated themselves to cupcakes and tea before settling down in chairs arranged in circles. Boxes of tissues lined the walls, should anyone need one.
Death cafes are modeled after 19th-century salons where people convened for intellectual discussions. Bernard Crettaz, a Swiss sociologist, introduced the idea of death cafes in 2004 and Jon Underwood popularized them, hosting the first death cafe in his London home. Soon enough, death cafes were embraced across the world.
Death, famously called the “great equalizer” by journalist Mitch Albom, obviously sparks curiosity and questions. But many repress asking those questions out of fear. The topic is perceived as taboo and difficult to confront, even though death surrounds us.
“One of the eternal questions that we, as humans, have is about the meaning of life and part of that discussion stems from what happens after life, which is death,” said Bree Harvey, vice president of cemetery and visitor services at Mount Auburn Cemetery. Death is a daunting subject to grapple with, but the growth of the death positive movement and death cafes bring conversations about death to a more nuanced, collective grappling.
Far from a grim consortium of goths, death cafes attract people from all ages and walks of life. In my discussion group alone, there was a nonprofit worker, scientist, mortuary school student, yoga teacher, hospice volunteer manager, retired social worker, and Mount Auburn Cemetery employee. For all but one, it was their first time attending a death cafe. Before beginning our discussion, we were told ground rules to foster a comfortable and respectful environment: listen, speak your truth, share the air, respect, accept and expect, and self-care.
Olson said she attended the death cafe because she couldn’t talk about death with people in her life. “If you go by statistics, I’m three-quarters through my life and very aware there’s an end. I’ve seen people very scared in their life at the end, and people who have not been actually. I do think sort of normalizing and talking about it is very normal.”
Cupcakes at the death cafe at Mount Auburn Cemetery.Tissues line a wall at a death cafe inside Bigelow Chapel at Mount Auburn Cemetery.
Talking about death could be increasingly common with climate change. The thought of a mass extinction lurking around the corner brings great anxiety and urgency to make the most of our lives. “To have to envision that happening in my near or far future is the scariest part for me,” said Michelle Frasca, a mortuary school student, at the death cafe. Because of climate change, Frasca said she would rather not be immortal if given the choice. “I’m so much of a pessimist that I’m like, it’s going to be terrible, I’m going to have to watch people die, I’m going to have to watch the world die.”
Corinne Elicone, events and outreach coordinator at Mount Auburn Cemetery, may only be 25, but she’s already bought a plot at Mount Auburn Cemetery. Elicone had an experience where medical professionals did not respect her grandfather’s end-of-life wishes. “He wanted no life support, he didn’t want to get food or liquids. He was in the resuscitating area to be revived. And I had to go into that hospital room and tell the nurses to unplug his fluids,” Elicone said at the death cafe. “It made me feel like there’s nothing I can do when it comes down to it, people are going to do their daily tasks.”
However, not everyone gets to make their end-of-life plans. Just like there’s inequity in life, inequity persists in death. “There’s no grand conversation on access to a good death. Who gets to die well in this country? People with money. They get comfort and they have care and they have shelter and they have music and soft linen. And people who don’t have money don’t really have options,” said Lashanna Williams, a death doula and executive director at A Sacred Passing.
Death grounds and humbles us, in addition to helping us prioritize our lives, said Eric Redard, a hospice volunteer manager, at the death cafe. Daily life is filled to the brim with pressures: You work until you die and along the way, fear failure and inability to fulfill your dreams. Is contentment all we can ask for?
Olson, who recently moved to a new home, said that she felt a newfound peace that isn’t quite happiness, but it is enough. “I could just sit on the back porch and listen to the crickets all night. I don’t feel like I need to do anything … I started thinking, if I should die anytime between now and the next 20 years, which is quite likely to happen, I want to feel this way.”
The leaves are green and awaiting to burst into shades of gold, orange and red, but in a couple months, they will fall to the ground and decay. Like fall, a season that brings both renewal and decay, death is full of dualities: denial and acceptance, mourning and comfort, and loss and living with intention. Death cafes show us we don’t have to reckon with it alone.
The booming hospice industry is changing what it looks like to die in the U.S. Rather than under the care of doctors and nurses in a hospital, more Americans than not now spend their final days in familiar surroundings, often at home, being cared for by loved ones.
While hospice has been a beautiful experience during a difficult time for many families, a yearlong reporting project by WPLN finds end-of-life support often falls short of what they need.
“Our long-term care system in this country is really using family, unpaid family members. That’s our situation,” says professor Katherine Ornstein, who studies the last year of life at Mount Sinai Hospital in New York. “As we increasingly see that we want to provide home-based care, we’re relying even more on caregivers. And it does take a toll.”
The federal government has found that families often misunderstand what they’re entitled to when they elect hospice. And many still have to pay out of pocket for nursing home services or private caregivers, which Medicare rarely covers — all while the hospice agency is paid nearly $200 a day.
Hospice has catapulted from a sector led by nonprofits and volunteers to one dominated by investor-owned companies — including several based in the Nashville area such as Amedysis and Compassus — with more growth expected.
In the process, hospice has ballooned into a nearly $19 billion industry. It’s now the most profitable service sector in health care, as the industry’s business model relies heavily on unpaid family caregivers.
“This seems like it’s in sync with patient-centered care,” says Ornstein, “but the reality of that situation may be very, very challenging.
“I think we have a responsibility to really think about whether the families can handle this.”
‘A Longer-Term Thing’
The Fortners could be the poster family for hospice of old. On an overcast morning last May, they gathered with dozens of other grieving families at Alive Hospice’s residence in Murfreesboro for the nonprofit agency’s annual butterfly release.
McCoy Fortner, 8, opened a triangular box and a dormant monarch began to twitch.
“You can also whisper to it to tell the person in heaven what you want to say,” he explained.
He held the winged messenger on his forefinger until the black and orange wings perked up and stretched out. He relayed a few words to his father, Jeremy, who died two years ago of cancer.
“Thank you for being my best dad,” he said as the monarch took flight.
McCoy’s mom, Elicia, stood behind her son with tears in her eyes. Her husband called off endless chemotherapy. He was on hospice at home and then moved to a residential hospice facility where he passed away. Between the two, he was on hospice for 10 days.
Elicia Fortner said she just wishes they had stopped curative treatment and switched to hospice sooner.
“I don’t know if I really understood the options,” she said. “I didn’t realize hospice could be a longer-term thing.”
The Hospice Nudge
The average amount of time patients spend on hospice has been creeping up steadily, amid an industry-wide push that has aligned most of the interests in health care. The Affordable Care Act gave hospitals new incentives to reduce the number of deaths that occur in the hospital or shortly after a patient’s stay. Some studies suggest that’s caused an uptick in hospice use. And many doctors have been sold on the idea of prioritizing quality of life in the final days.
More patients are also eligible: Hospice has expanded beyond cancer to any terminal illness.
Very few people now die in a hospice facility. More often, hospice is received at home or, increasingly, in a nursing home.
Jessica Zitter, an emergency physician in Oakland, Calif., wrote a book about needlessly dying in the hospital on ventilators with very little consideration about quality of life. She advocates for prioritizing comfort care, which often means recommending hospice. When a patient has been told they have less than six months to live, Medicare and most private insurance will allow them to sign up for hospice services meant primarily to help them die in peace.
Zitter filmed one documentary called “Extremis.” It showed the impossible end-of-life decisions that have to be made in a hospital.
Then, she decided to make a second documentary, still in production, following a husband who took his wife home on hospice after ending cancer treatment.
Zitter met with Rick Tash and Bambi Fass for the nine weeks she spent in at-home hospice. The storyline didn’t play out as expected.
“It made me realize how naïve I — the doctor of death — was,” Zitter says. “This is this beautiful love story of these two people. Then you hear him say, ‘I didn’t sign up for this.’”
Tash became overwhelmed — from managing Fass’s morphine doses to getting her to the toilet every few hours.
With at-home hospice, everyday caretaking — and even many tasks that would be handled by professionals in a hospital or nursing home — are left to the family.
Medicare requires agencies to provide a few baths and a nurse check-in each week. But government data reveals that, on average, a nurse or aide is there at the house only about half an hour a day.
Zitter sat Tash down at his kitchen table, with his granddaughter on his lap. She encouraged calling in reinforcements.
“Asking for more support from hospice, if you need it, is really important,” she told him.
“Yeah, but what they offered me was a volunteer for two hours, one day a week,” Tash responded.
“That’s it?” Zitter asked.
“That’s what they offered,” Tash said.
Zitter was stunned. She realized Rick was getting all hospice had to provide, and it wasn’t nearly enough.
“The good death isn’t as easy as you might think,” she says. “We’ve got to put some things in place here so we can make it more likely that people can achieve that.”
When her husband got sick with kidney cancer and died four months later, Jane Whitlock, having had no experience with death or grief, found that the guidance and spiritual care provided by hospice just wasn’t enough. Resolving to find her own purpose while answering for the gaps she saw in end-of-life care, she followed her intuition and became a death doula.
A death doula, or end-of-life doula, is someone trained to provide holistic care to a dying individual. There is no nationally standardized certification program, which means there are multiple training options—a process that involves a set of training classes and documented hours of direct client support, plus whatever specific assessments a particular certification program requires. Death doulas represent a growing movement toward redefining our typical approaches to death.
A death doula’s role is as nuanced as each individual who occupies that role, and Jane Whitlock sees herself first as a companion. She provides comfort and support to the dying individual and their “tribe”—as she often refers to the circle of family and friends—through a time for which most people may not be spiritually prepared. Through intentional connection, she deciphers how she and the tribe can best serve the dying person. She abides by the slogan, “Death: it’s a collaborative event!”
This Q&A has been edited for clarity and length.
The Growler: Why do you believe death doulas are important?
Jane Whitlock: A doula helps ask the big questions so this process is as spiritually comforting as it can be. Think of your deathbed and how you want to feel—at peace, right? So, how do you get there?
A doula also gives you some sense of what’s coming and can support you through these tough situations that you may not be prepared for. You haven’t been here before and often don’t have any bank of knowledge to draw from.
Cultures have evolved to include how we care for people who are dying and have died, and while some intact cultures can trace their beliefs back very far (to the Buddha, for example), Americans don’t have those deep ties.
Since the Civil War, the standardization of funeral homes, embalming, and the medicalization of end-of-life have removed death from the home. We no longer know how to care for people who are dying, how to have home vigils, how to mark significant transition points (leaving a body for the last time, a body leaving the house).
How can our modern standardized systems shift to accommodate what death doulas have to offer?
It would be amazing if hospitals employed doulas! Wouldn’t it be great if you could transfer someone who has died to a room to clean them up, bring the family in, and have someone guide them through rituals of saying goodbye and nurturing the body?
I think a lot of times this seems like a white lady movement—like, we want to cover everything in crystals and candles and aromatherapy or whatever. I push pack against that because there are so many other ways of experiencing death. This movement needs to be more inclusive, to change a whole bunch; being a death doula is a teeny, tiny door, and there is a lot of growth ahead.
What characteristics make an effective death doula?
You have to be able to empty yourself out, to be hollow and free of judgment, of any preconceived ideas about what should be happening. You have to listen without thinking and really be with someone when they’re suffering without trying to fix it. An effective death doula is someone who is calm, quiet, and vulnerable. It’s really so much about vulnerability.
I volunteer at a hospice and often have to practice that whole “soft belly” thing, to stop before every room and become wide open. Even when someone doesn’t want to see you, you have to think, “It’s not about me.” You just kind of clear your energy, go into the next door. You have to fight being defensive in order to just be vulnerable.
What are some ways to go about changing our death culture?
It really starts with your stories. We don’t tell our death stories; we tell our birth stories and our family stories, but we don’t tell our death stories. It would be great to just listen to a bunch of stories about how it happens, maybe know just some weird and messy stuff, too. What was it like? What would you have done differently? What went well? What surprised you?
There’s this guy, Dr. Allan Kellehear, who says our inability to talk about death is a public health epidemic. He refers to the AIDS epidemic and how you couldn’t shut a bathroom stall without a poster on the back teaching about prevention and safety. Wouldn’t it be great if we took that type of vast approach to shifting death culture?
Another maverick in the field, Suzanne O’Brien of Doulagivers, says there should be someone on every block who knows the end-of-life basics so that when somebody in your community is dying, they are supported.
Who do you think is the best at approaching death?
Well, the Buddhists, hands down. They’ve got the saying: “We are of the nature to get old; we are of the nature to suffer; we are of the nature to die.” Imagine if that’s how we started every morning—we wouldn’t be so shocked by death! There are people who think that aging is some kind of radical punishment or who feel entitled to live in a full healthy body forever. That’s just not our nature.
I would say that to prepare for death, you have to get your spiritual house in order, whatever that means to you. Life is finite, super fragile, and you are not entitled to anything! So, spend your time wisely and be grateful.
When the former TV news anchor spoke at Georgetown University at an event titled “The Healing Power of Communication” in August, 2019, she said she wished she had talked more to her late husband, Jay Monahan, about his impending death before he succumbed to colon cancer at 42 in 1998.
“It was just terrible,” Couric said. “After nine months of trying desperately to figure out some way to manage it, he lost his battle — and it was devastating.”
She explained that she’s writing her memoir and recently had drinks with Monahan’s two doctors to “revisit” those days.
“I told them how guilty I felt about so many things about Jay’s illness and that we never really discussed, you know, even entertained the idea that he might die. I was so afraid to give up hope, and make him give up hope, that we never discussed the alternative, which I really regret,” Couric said.
For example, she said, “He never wrote a letter to our girls” — daughters Ellie, 28, and Carrie, 23.
“I honestly believe that we, as a species, will do better if we come to terms with our mortality earlier in life.”
The fine line between maintaining hope and offering a reality check is tricky territory, said Dr. John Marshall, oncologist and director of Georgetown’s Ruesch Center for the Cure of Gastrointestinal Cancers, who was interviewing Couric at the event.
“As soon as we enter that world, we see the light go out,” Marshall said. “We don’t like doing that. So the balance of being on point and brutal, if you will, and factual, versus that maintaining of hope…”
“It must be a dilemma,” Couric responded. “For me, I erred on the other side — trying to protect Jay from information he had a right to hear.”
So, which is more important: knowing the reality of your situation or maintaining hope?
Most of us don’t want to hear bad news, especially this kind of bad news. And most of us don’t want to talk about it, or plan for it. And yet, in recent years, the thinking about this is beginning to change as our aging population starts changing its views of death. More hope, less grim reaper?
Is Dying About Control?
HBO’s documentary Alternate Endings: Six New Ways to Die in America, released Aug. 14, 2019, explores some of the ways Americans are finding meaning as life ends. And all of the ways show that the key is taking control of as much, or as best possible, of the end of life.
The documentary includes new types of urns, personalized obituaries, eco-friendly caskets, drive-thru funeral viewing, living wakes (which force people to say things to each other while still alive), space burials, green burials (in which the body is wrapped in biodegradable material in a shallow grave), memorials in an underwater “reef vault” and a seriously ill man who opts to take advantage of physician-assisted death to end his life peacefully and surrounded by family.
It’s all part of a $16 billion U.S. funeral industry that is being disrupted.
“The baby boomer generation has had a greater degree of control over their lives than any other generation before them,” Alternate Endings filmmaker Matthew O’Neill told Axios in an Aug. 10, 2019, article. “It’s because every topic that’s taboo — be it sex, be it drugs — it’s all on television and it’s all being talked about. And death is the last taboo.”
Is Dying About Hope?
The film was released around the same time as the book A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death by Dr. BJ Miller and Shoshana Berger was on The Washington Post’s Top 10 bestsellers list. The book includes practical advice (take your favorite quilt to the hospital) and wisdom (“love” is what matters most in the end).
Miller, too, addresses the idea of hope.
“I honestly believe that we, as a species, will do better if we come to terms with our mortality earlier in life,” he said in an interview on the Today show Aug. 5, 2019. “Get used to exercising hope within the framework of life being short and precious.”
De-stigmatizing death. Having a “good death.” Those are the goals.
The United Kingdom’s Academy of Medical Sciences installed “The Departure Lounge” in a London mall in May. It was designed to look like a departure lounge at an airport, complete with all that baggage we have, with the idea of getting people to talk about death. “Why can’t we say the ‘D’ word?” the website asks.
Packaged versions of the pop-up installation are now being offered to community groups across the UK to start a national conversation about death and dying.
As a student in Georgetown University’s new Aging & Health master’s program, I was treated to a guest lecture in our first semester by Becky Hsu, an assistant professor at Georgetown, who spoke to us about the Chinese concept of a “good death.”
Hsu explained that she had spent time in China with a woman who had already bought the outfit she wants to wear for her death: pants, shirt, shoes, earrings and purse.
The woman has an embroidered pillow picked out for her head to rest on. She had a portrait taken that will be displayed at her funeral. All of these things are neatly wrapped in a cardboard box that she proudly shows off to friends and family.
