Tag: Death Talk

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Musicians must prepare estate plans for their musical works

Chris Osgood of Suicide Commandos performing at the Turf Club

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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.”

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A Personal Día de Los Muertos Journey

By Joseph Leahy

A transplant to Los Angeles since 1988, Joseph Leahy was familiar with mortality. His family was in the funerary business. His family often took him to the cemetery as a child. “I’ve spent a lot of time around death and dying,” Leahy said. It was only when he moved out West, however, that he discovered the traditions of Día de los Muertos and identified with it. His enthusiasm for the celebration was so much so that his altars were often lauded in the early years of the Hollywood Forever Cemetery’s annual celebrations. Today, he continues to honor its sanctity with a yearly ritual commemorating his loved ones through a personal altar made at home and with the help of his daughter. His appreciation for the sacred tradition has also influenced his work in the HIV positive/AIDS communities. Apart from his yearly personal altar, Leahy has also helped these communities celebrate the ones they’ve loved and lost through meaningful remembrance.

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Dia de los Muertos (Day Of The Dead) 2019

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.”

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How to die a good, green death

With water cremation and human composting on the horizon, Washingtonians are asking: What should happen to our bodies after we die?

by Manola Secaira

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.

“Nobody knows,” Herring says. “[Even] now, hardly anybody knows.”

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.

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Death Cafes Allow People To Confront Death With Others

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.

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The Cost Of Dying

Hospice’s Biggest Fans Now Have Second Thoughts

The rapid growth of the hospice industry has exposed the burden of putting the family in charge of the death bed.

By

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.

But some of the biggest end-of-life evangelists are beginning to see unintended consequences of putting families in charge of the death bed.

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.”

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Struggling with care — When is ‘end of life’ too much?

By GARRY OVERBEY

A 94-year-old Venice man allegedly shot and killed his wife, who suffered from dementia. He then tried to turn the gun on himself, authorities said, but the weapon jammed. He told the 911 dispatcher, “I’ve had a death in the family.”

Cheryl Green, 73, lost her husband of 54 years in July after a long struggle with Lewy body dementia.

When Green read about the arrest of Wayne S. Juhlin — currently the oldest inmate at the Sarasota County Jail, charged with first-degree murder — she felt sympathy for him — and guilt, for her husband.

“Unless you’ve walked in his shoes, you don’t know what’s going on,” she said. “He (Juhlin) probably saw something in her condition, that killing her was a mercy.”

The would-be murder/suicide made her think of her husband, and the horror of his final days in a Lake Placid nursing home.

“If I had the means and the courage, I would have ended his misery,” Green said.

She contacted the Sun following Juhlin’s arrest, objecting to the narrative put forth by authorities that help for caregivers is readily available but ignored.

“It sounded as if there were many options open to the man and he just didn’t know they were there. The options are few for individuals who don’t have a lot of money,” she said.

Had her husband been accepted into a long-term care facility, she said, she would have depleted their savings in two months.

A former Washington state employee with a degree in social work, Green said she’s not naive about Medicare and Medicaid and how easily people can slip through the cracks of a bureaucracy. But she was stunned to find herself marginalized in Florida’s elder care system.

“If you’re indigent and you need long-term care, you can get Medicaid,” she said. “But if you’re in the middle — if you’re not wealthy enough to afford $3,000 to $5,000 a month (for nursing care) — you’re stuck.”

Through the looking glass

Cheryl and Drew Green both grew up in upstate New York. High school sweethearts, they met while working in the same grocery store and married while still in their teens.

They moved to Seattle, where she got her master’s degree in special vocational education, he opened his own business as an electrician, and they raised their two children. She worked for the state, running and developing programs for people with developmental disabilities and mental health issues.

Drew was extremely handy and could do almost anything that needed doing around the house.

“He was an excellent craftsman,” Green said. “People liked him because he was so good at what he did.”

Around his mid-50s, things changed.

“He started making mistakes at work,” Green said. “He would say, ‘I don’t know why, but I can’t figure things out anymore.’”

The man who had once built her a backyard gazebo was now forgetting things and had trouble with basic tasks.

Doctors told them he had dementia, but it would be years before one finally diagnosed him with a specific type: Lewy body dementia. LBD is a progressive form of the disease, with visual hallucinations, that affects thinking, behavior, mood and movement. Life expectancy is usually five to seven years.

Drew couldn’t work and his business folded. Green quit her job to care for him. Seattle was too expensive under those circumstances, so she looked for a cheaper place to live. In 2010, they moved to Burnt Store Lakes in Punta Gorda.

They lived off their savings and took early Social Security benefits. As his health declined, they were relieved when he qualified for Medicare.

“He was living in an alternate reality,” she said. “He had delusions and thought he had to act on them.”

For instance, Drew once thought he could go upstairs by walking through a mirror.

His condition steadily worsened over the years.

“He still had a sense of humor. He stayed kind,” she said. “But he became really delusional and started lashing out at people.”

Drew would sometimes stay up and wander the house for three or four days at a time. He would walk into sliding glass doors.

“I was under the delusion that I could take care of him,” she said.

Green, who had been diagnosed with lupus in the last year after struggling with fatigue her whole life, was exhausted and finally reached out for help. Earlier this year, she contacted Charlotte County’s Senior Services. They agreed to send someone to help for four hours twice a week to provide respite care — giving the caregiver a break for a few hours and helping with household chores. But when the worker arrived, Green was shocked to learn she didn’t speak English. Green was handed a cell phone and told to talk to a supervisor, who would translate Green’s instructions. A second worker spoke some English, but she mainly sat and did puzzles while Drew watched.

The county’s Senior Services cannot discuss details of a specific case because of privacy, but there are limitations on help that can be provided.

“Vendors do have difficulties providing services in more remote areas of the county, weekends and evening service, and we have no vendor willing to handle heavier chore tasks,” said Deedra Dowling, manager of Charlotte County Human Services/Senior Division. “We depend on the subcontracted vendors to provide the staff for service provision and we do monitor for contract compliance. … We have had clients who have tried every worker, every agency, and finally left with no service provision as they could not be satisfied. While this scenario is extremely rare, it has happened a few times over the years. Overnight services have always been extremely difficult to staff for a variety of reasons.”

Dowling added she wishes there were “many more resources.”

Green said she needed someone to come three nights a week, and someone on call at night.

She started sleeping on the couch so she could keep an eye on the doors to make sure he didn’t leave the house.

“I didn’t understand what I needed. I thought, I’ll keep him until I can’t keep him home anymore.”

Resources were few. Her children, who live out of state, helped when they could. Neighbors helped, but Drew’s aggression scared them.

“It’s difficult to ask anybody to help restrain someone in the middle of the night.”

Reality check

In May, Drew escaped through a window. Green searched the neighborhood and found him wandering the streets in his boxer shorts. The next night, he got out again. This time, she found him unconscious in the bushes near the alligator-infested lake behind their home.

She brought him to Fawcett Memorial Hospital May 19. He was placed under observation, but Medicare wouldn’t pay until he was actually admitted, which happened once he began having heart issues and his blood pressure shot up.

His decline accelerated. “He started punching people,” Green said. “He was scary aggressive.”

At Fawcett, she credits one doctor with giving her a reality check on what she knew were her husband’s last days: “He said, ‘This isn’t a fairy tale. Grandpa isn’t going to come home and be surrounded by loving grandchildren.’ He said he’ll be ranting and raving and lashing out at people.”

One night in the hospital, to keep him from jumping out of his bed, Green wrapped him in a bed sheet and held it tight.

He was beyond being helped at home. A doctor said he would need three people caring for him around the clock.

“Obviously, he was lots and lots of work wherever he went.”

She tried to get him into Tidewell Hospice, but was turned down. She said she wasn’t given a reason, only that he “didn’t meet the criteria.”

“I knew he was dying,” she said.

A hospital social worker started looking for a nursing home, but no one local would take him, Green said, “because he was aggressive and had Lewy body, and they didn’t have the experience or the staff to deal with him.”

Only two facilities in the state would take him. Online reviews for the one in Clearwater were so bad it was unthinkable, so she went with a facility in Lake Placid.

“I hoped maybe he could have some rehabilitation, maybe learn to feed himself again.”

Fawcett insisted he be transported to Lake Placid by ambulance, a $3,000 trip the hospital agreed to cover.

‘The old person’s friend’

The Lake Placid facility turned out to be worse than she could have imagined.

“The place was dirty, the staff overworked and the administration was less than helpful.”

Drew’s conditioned worsened.

“He could not feed himself or use the bathroom,” Green said. “He cried when he saw me. He was wet, dirty and being fed food he would never eat in his former life. He was frightened and tried to keep the staff away from him. He was usually put in an old wheelchair missing half its parts and was slumped to the side.”

After 20 days, the facility notified her he would be taken off Medicare because he wasn’t making progress. They would let him continue to stay there for $260 a day. Had Green agreed, “I would go through any money I had left very quickly,” to keep him in a place where “I would not keep my dog.”

“I wanted someplace stable where I could visit him, but that was not available to me at all,” she said. “I looked every day for a new place. He was terrified and I was miserable.”

Suffering from infections, pneumonia and near-continuous seizures, Drew was taken to the emergency room. From there, he was finally accepted to a hospice in Clermont, near Orlando. Green noted someone telling her pneumonia was called “the old person’s friend” — “because it takes them away when they have other diseases.”

“It was a wonderful place to be,” she said of hospice.

She was able to be with him that night. The next morning, July 16, a nurse’s aide told her he had died.

A better ending

Three months later, Drew’s last days haunt her.

“What an awful way to die — thinking you’re not safe, that you’re being attacked all the time, no help from anybody, and the nursing home didn’t want him anymore.

“To have him in that place, to see him crying and scared,” she said, shaking her head. “I’ll never get over the guilt.”

She adds: “I shouldn’t have lived in a delusional state that I could take care of him.”

If he could have gotten into a hospice earlier, she said, “his life would have had a better ending.”

Her thoughts roll back to Juhlin and others like him who took action to end a loved one’s suffering.

“I don’t think I could kill anybody, especially someone I loved. But I wish I could have ended his misery.

“It’s horrible when the person you love most, you think they’d be better off dying. My last three dogs got so sick I had to put them down. I loved those dogs. I didn’t murder them.

“I wouldn’t shoot anybody, but I might have given him too many sleeping pills.”

Green said she visits online forums for people with loved ones suffering from Lewy body dementia. But she is reluctant to participate.

“I don’t want to tell my story because I don’t want them to know how bad it’s going to be.”

She wants to be an advocate for raising awareness about the condition, and offers advice for those in similar situations.

“Don’t think that anyone is going to automatically be there to help you.”

She recommends getting an elder care attorney once it becomes clear a loved one is going to require long-term care.

“Sit down and talk about Medicare and Medicaid options, and whether you can keep your house after your loved one passes away.”

Green still owes a little money on their house, and she’s confident she can keep up with home repairs without having to take out a loan.

Nine years of Medicare “doughnut hole” expenses for Drew’s medications, as well as retiring early, ate up their savings.

Still, she’s able to get by on Social Security and her pension from Washington. Plus, she says with a little chuckle, Social Security gives her a widow’s pension — $37.91 a month.

She’s adjusting to life without her husband.

“I had a man who could do everything,” she said. “Now I’m figuring out how to do everything.”

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