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.

Complete Article HERE!

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.”

Complete Article HERE!

Resting in Peace…

Death doula Jane Whitlock on end-of-life care, grief, and the importance of telling our death stories

Jane Whitlock

by

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.

Complete Article HERE!

Toronto death doula helps take the fear out of dying

By

“Everyone dies and that is OK.”

Those six words are something of a mantra for Kayla Moryoussef, a Toronto “death worker” who has spent the last six years immersed in death and dying. As the program manager of the Toronto Home Hospice Association’s “Death Café” initiative, she holds sessions for people to talk about death (more about that later) and, in addition, works to help people experience a “good death.”

What might make a death good? That probably depends on the person, but one of the main things Moryoussef works to get people to let go of is fear.

And she’s not alone. While it’s still a relatively niche corner of the death care industry in Canada, there are an increasing number of people with “death doula” or “end-of-life-worker” practices and, like Moryoussef, most are participants in the “death-positivity” movement.

“It’s not that we should celebrate the fact that people died,” says Moryoussef, who works with Toronto’s Home Hospice Association and has a practice called Good Death (www.gooddeath.ca) through which she runs “Death Café” sessions in Toronto. “But we should accept the fact that people die and, even though it’s not a good thing, it’s an OK thing that’s a part of life. As soon as we recognize that, it becomes less scary.”

In a nutshell, the theory is that we’ve lost touch with death, which used to be more a part of life than it is now. Prior to, say, 100 years ago, people often died at home and, if they lived in small communities, neighbours and family dealt with a lot of pre- and post-mortem issues. As it became more “hands off,” it also became distant, invisible and shrouded in mystery. As a result, we’ve become more afraid of it. Some people use euphemisms, like “passed,” others speak in hushed tones, as though something shameful has happened. At death cafés, people learn to talk about it more openly, in hopes of getting past the fear and awkwardness.

“People get together to talk about dying and death,” says Moryoussef. “They’re not support groups, they’re not grief and bereavement groups, they’re literally just open forum events, although, since we realize that certain populations have different needs, we started to make some population-specific, so we have LGBTQ cafés and, in November, we’re having our first death café for people with chronic illness and chronic pain.”

Death cafés (or “death salons,” as they’re sometimes called) are one of the most successful components of the death positivity movement, says Dr. Katherine Arnup, retired professor at Carleton University and author of “Family Perspectives: Death and Dying in Canada,” a report published by the Vanier Institute of the Family.

“I just looked at the most recent stats, and there have been 9,261 death cafés in 65 countries,” says Arnup, pointing out that this is pretty good given that they only started eight years ago. “I’ve been to a few and it can actually be kind of fun, with a lot of laughter surprisingly. I mean, 65 countries is pretty impressive and there are other ones like “Death over Dinner” and “Death at a Bar,” you know, those kinds of things.”

There’s obviously a demand for a different conversation about death and dying than the one most of us have been having, but public and private sessions aren’t all that death workers offer. Moryoussef has been called upon to join families sitting in vigil and help dying people settle on a “legacy” — usually letters, gifts or memoirs that are to be given to loved ones, post-mortem. This, along with dying at home (when possible), is all part and parcel of the philosophy of the good death. Some death workers even help families who want a home funeral clean and preserve the body.

There are some parallels between this and the big midwifery resurgence (circa 1960-1990s) that saw feminists objecting to a medical system that tended to keep women in the dark and gave them few choices. The modern midwifery movement worked to rectify that by giving women information, encouraging them to be active in making a birth plan and, in some cases, even empowering themselves to choose to deliver at home, instead of the hospital.

So, since birth and death — the only two inevitabilities of life — arguably faced many of the same problems, why didn’t we notice that the death care industry needed some changes, too?

Dr. Arnup says demographics played a big part in the shift in attitudes toward death.

“I don’t like the stuff around the Baby Boomers so much, how you see claims that Boomers changed everything, from the way we eat to the way we die,” says Arnup. “But I think there’s something to be said for the fact that, just because there are so many of us, some have a sense that we can do anything and control things. Certainly some Boomers pushed for medical assistance in dying, which is now the law of the land, and they’re also the people who are supporting hospice.”

Boomers aren’t alone in wanting to avoid the indignities of, say, a protracted death in a hospital, but the sheer number of people in that demographic who hope for pain-free deaths, surrounded by friends and family and, ideally, in their own home, is starting to reshape the industry by supporting alternatives like Moryoussef’s.

And, as she says. It’s still sad — for everyone. It’s not a celebratory moment. But since letting go is a natural part of life, it’s also OK.

Complete Article HERE!

Can We Talk … About Death?

Some recent, intriguing examples of how the conversation is evolving

By Ann Oldenburg

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.”

Boomers do seem to be getting better about not only facing death, but also embracing it. The Conversation Project, Death over Dinner project, Death Cafes — all have been propelling us towards a more open view of death for nearly a decade. Remember how Swedish Death Cleaning became “a thing” two years ago?

Maybe It’s About Hope and Control

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.

Explained Hsu, “It’s a happy thing.”

Complete Article HERE!

Choosing death during a life with debilitating disease

By SHEILA HAGAR

Donna Coffeen remembers hearing about Washington state’s Death with Dignity Act when it passed in 2008.

That legislation allows terminally ill adults who want to end their life ask for lethal doses of medication from a physician.

Eight states, including Oregon, have right-to-die laws.

Coffeen was especially alert to the matter. Her husband, Jon, had been diagnosed with Parkinson’s disease in 2003.

Both Coffeens researched Death with Dignity and were pleased with their findings at first, she recalled.

Parkinson’s is a progressive nervous system disorder that affects movement. The symptoms start gradually, sometimes with a barely noticeable tremor in just one hand. Tremors are common, and so is stiffness or slowing down, according to the Mayo Clinic.

Those issues contributed to why the Death with Dignity act would fail Jon, who could no longer swallow by himself by the time he died last year.

Fatal doses of medication must be self-administered under the law.

Donna, a lifelong educator, wants others to know more about physician-assisted death and what changes would benefit others in her husband’s situation. Particularly in an area like Walla Walla, with fewer health care options, she said.

The Coffeens had been sure of two things for the past several years: Parkinson’s would take Jon’s life too soon, and he didn’t want to end up in a wheelchair or dependent on a caregiver, Donna said.

For better or worse

The couple met while attending Walla Walla University. Their engagement photo, a study of the 1970s in hair and wardrobe, shows two faces glowing with contentment. They married March 19, 1978, in Donna’s hometown of Miles City, Mont.

Jon had arrived in the Walla Walla Valley at age 12, when his family bought 35 acres of farmland along Old Milton Highway, south of College Place. While he and Donna were teaching middle school at Milton Adventist School, Jon built a custom home on a section of that land, Donna said.

“He would get up at 5, come build on this house, teach all day, then build on it at night.”

Jon craved activity. For 41 summers he fished commercially in Alaska. He built fiberglass boats. He loved to hunt and hike and camp. He served with Walla Walla Fire District 4 for more than 20 years, his wife said.

It seemed especially cruel when Jon got the diagnosis of Parkinson’s at age 49. By then, some signs had been present for a few years, such as unexplained fatigue and pain.

The average onset age of the disease is 60, according to Parkinson’s resources.

Donna said Jon was determined to stay healthy as long as possible, despite the diagnosis. Their sons, Phillip and Aaron, were just entering adulthood, and the parents were becoming more free to have adventures.

“He fought as hard as anyone could,” Donna recalled.

“He had nine surgeries in 11 years. He walked every day. He exercised. ”

In 2009, Jon underwent a procedure known as DBS, or deep brain stimulation. A surgeon implants a device similar to a heart pacemaker in the brain. The neurotransmitter delivers electrical stimulation to targeted areas in the brain, blocking the abnormal nerve signals that cause tremors and other Parkinson’s symptoms, said Sherri Woodbridge in writing for Parkinson’s News Today.

Doing so added five or six years of “high quality” life to her husband’s timeline, even letting him captain his fishing boat another three summers, Donna said.

“It brought him back to a level of functioning … But it’s not a cure. The disease will progress past what the surgery will do for you.”

The Coffeen family could tell when Jon’s brain intervention had passed its efficacy. He gave up fishing and firefighting in the same week and eventually began falling at home. The travel they loved stopped. Jon’s exhaustion and pain enveloped everything.

Cannabis use helped a lot. “This was a man who’d never had a drink in his life,” Donna said with a laugh.

Looking back, she could see her husband was beginning to plan for the end of his life.

“I think he wanted to spare me. He didn’t want to use up our money, and he didn’t want to be in a nursing home.”

When Jon began worrying he was developing cognitive issues, “that was his line in the sand,” Donna noted.

Out of options

In September 2018, Jon mowed the lawn one day and entered Providence St. Mary Medical Center for foot surgery the next.

He ended up in rehabilitation care at a nursing home for about 10 days, his son Phillip said.

It was there his dad’s Parkinson’s symptoms worsened, likely from stress, he added.

Those increased symptoms sent Jon back to the hospital, where he spoke little and stopped eating, Donna said.

“‘This Parkinson’s is coming down on me like a freight train, and I won’t be able to make decisions soon,’ he told me. But I thought he was coming home. I bought a wheelchair and a wheelchair lift just a few days before we figured out what he was doing.”

What Jon was doing is called VSED — Voluntary Stopping Eating and Drinking. Because he could no longer effectively swallow, Jon could not drink a fatal potion of prescribed medicine, nor was that allowable at the Catholic-based St. Mary.

He was too sick to go to another hospital, Donna said.

“He was out of options.”

VSED is an intentional decision to stop taking liquids or nutrition. According to the National Institute of Health, some people at the end of their lives choose this over physician-assisted death to give them more time for family interaction and reflection. In a case of terminal illness, VSED is not considered suicide. Some patients side-step the medical system altogether when choosing this action.

Some accounts say fatal dehydration and starvation are a hard way to end life, but that wasn’t their experience, Donna said.

In any case, she’d already agreed to follow Jon’s wishes.

“He told me, ‘Don’t you dare give me water.’ He was worried about delirium but that never happened,” she said.

“It took awhile for my heart to catch up with my brain. But I had no urge to talk him out of VSED. I did some grieving in front of him, but I would never ask him not to.”

Hospital staff knew what was happening when Donna and her sons brought Jon home the day after he began the VSED process, she said.

“No one actively stopped us, but no one could officially help us. It’s a Catholic hospital; we knew it would be that way.”

Few people understand the real loss of Walla Walla General Hospital or limited medical care choices until it comes to times like these, Donna added.

Going forward

Friends continued to be a constant support, and the family made sure all home visitors were either on board with Jon’s decision or kept their thoughts to themselves.

While most VSED users die in about seven days, Jon took 12, she said, attributing that to his age.

Jon Coffeen died Oct. 7, 2018, surrounded by his family.

Donna said she believes her husband wanted to go while his wife could still have an active life.

“I miss him, but he would not be happy if I quit living life to the fullest … In the last year it was like living with a ghost,” she said.

Advances in medical technology are wonderful, and the Coffeens took advantage of those while it made sense.

“But many people prolong things, too. We were right on the edge of hell.”

She might choose the same, given Jon’s shoes to walk in, Donna added softly.

“Our family considers him a hero for doing this.”

After 40 years of marriage, it’s hard not to feel cheated by Parkinson’s, she said, noting Jon’s parents lived into their 90s.

But Donna is learning to live alone. Toby, the “mostly” shih tzu puppy, joined her not long after Jon died and provides a reason for routine, she said, offering the bouncing, barking dog a few Cheerios during the interview.

“We’re still working on manners.”

At 63, Donna said she’ll retire soon. She believes a mission is ahead for her and suspects it’s bringing awareness of end-of-life matters.

“I strongly feel something needs to be done. I just don’t know the next step yet,” she said.

“Maybe it’s time to take another look at the law.”

Complete Article HERE!

New program provides mobile end-of-life support to people in poverty

The new Palliative Outreach Resource Team (PORT) brings compassionate medical care and support to people living in poverty at end-of-life. Dr. Fraser Black,Island Medical Program’s associate dean of student affairs, is a team physician.

Death may be the great equalizer but the availability of good end-of-life care is rarely equitable. Now, a new mobile palliative care program designed to address that inequity is providing care and dignity to people with life-limiting illnesses who are homeless and living in poverty in Victoria. 

The Palliative Outreach Resource Team (PORT) is a collaboration of the University of Victoria, Island Health, Victoria Cool Aid and Victoria Hospice. PORT acts as a bridge between people with serious illness and their caregivers, palliative care, and other health and social support systems. 

The program is built upon lessons learned from a three-year study led by UVic palliative care researcher Kelli Stajduhar, lead investigator of the Equity in Palliative Approaches to Care program with the Institute on Aging & Lifelong Health and the School of Nursing. The study followed 25 people living homeless or barely housed while struggling with life-threatening medical conditions. The 2018 report Too little, too late: How we fail vulnerable Canadians as they die and what to do about it, found that homeless and barely housed people have to navigate many systems—health care, housing, social care—and that as their health declines, their ability to access these systems also declines. The big takeaway: despite a terminal diagnosis of cancer, heart failure or lung disease, those who were able to access palliative care actually experienced an improvement in quality of life. 

For PORT’s first year, the clinical team will be funded by Island Health and Saint Elizabeth Health Community Enterprise, a social enterprise with a commitment to end-of-life care for marginalized communities. Mirroring similar models in Toronto and Calgary, people can self-refer or be referred by their caregivers to a palliative care nurse and a physician who provide whole person care, manage the pain and symptoms related to life-limiting illness, support chosen family and caregivers, and provide grief and bereavement support. Chosen family and caregivers in this population include “street family” and shelter, housing, harm reduction, and peer and support workers from inner-city community organizations who are doing the bulk of end-of-life care for people living in poverty. 

The Vancouver Foundation is funding the UVic-led evaluation of the program, as well as the development of initiatives to increase access to and quality of palliative care in the inner city. The PORT team, which began service in July, has supported three deaths and is currently supporting seven people who are dying.

“For almost a decade, providers in our community have cobbled together resources to meet the needs of our clients who are living with unmet palliative needs,” says Grey Showler, director of health and support services at Cool Aid. “We are thrilled to see PORT come to life.”

“Over the next year, we will be implementing this model of palliative care in collaboration with organizations and people who have expertise in care and support for homeless and vulnerably housed people at end-of-life including street families,” says Jill Gerke, director of the palliative and end-of-life care program with Island Health. “We are using research and promising practices to inform the development of this model adapted to our community that bridges existing support and services.”

“Palliative care isn’t a ‘thing’ or a ‘place’ but an approach that focuses on whole-person care for the person, their family and community. This approach necessitates a community response where everyone sees their responsibility and their part in care for dying people,” says Stajduhar.

Complete Article HERE!