Making dying meaningful with an end of life doula

By Julie McClure

My dad died nine years ago after he suffered a long, debilitating illness. It was an outcome we knew was inevitable when he was diagnosed 10 years prior, but that didn’t make it any less difficult to see him slowly lose all of the functions that are necessary for one to live a fruitful life. At the end, I spend two weeks at his bedside, in his home, alongside my family, and there were times where — despite the visits from the wonderful and dedicated hospice nurses, and despite knowing this was ahead of us — the emotional toll we experienced as we honored his directive to finish his life at home without invasive life saving measures was overwhelming.

I know I’m not alone here. That every day, people are dealing with the overwhelming feelings and decisions that accompany the death of a loved one. It’s something we will all experience at some point in our lives, yet it’s a topic we’d rather avoid, that we’d rather not think about or deal with until we absolutely have to.

A couple of months ago I listened to a podcast that examined our stigmas and stereotypes surrounding death, and I was introduced to the concept of a “death doula.” We are generally familiar with the concept of a doula at birth — someone who is not your doctor or midwife or nurse or partner or family member — but is there to provide physical and emotional support for the mother before, during, and after the birth. A death, or end of life doula, provides physical and emotional support for those who are dying, and their families, throughout the death process. It makes so much sense! Of course this needs to be a thing! And indeed it is, right here in our community. Not long after this initial introduction to the concept, I stumbled across the Instagram profile for Threshold End of Life Doula Services, a relatively new service started by Melanie Sheckels, a local hospice nurse.

Sheckels has been a nurse for almost eight years, many of those years with cardiac patients, and has been present for deaths not only professionally, but more recently in her personal life. Her mother passed away just over a year ago, and her nursing experience gave her insight into how to counsel and advocate for her mother throughout the process. “She and I had many in depth conversations about what quality of life meant to her, and she asked me to advocate for her if she was not able to do so for herself. She had an end stage lung disease, and it was very difficult for her to talk and breathe, so she asked the doctor to just ask me to make decisions for her. Those decisions really supported her comfort and her dignity, and it created a lot of peace and healing for us both. So when I look back at that experience, I can see so many ways that could’ve been a really traumatic experience, and I was able to make it a really good one relative to the situation.”

Not all dying people and their families have the benefit of a close friend or family member with a working knowledge of what the dying process looks like, so Sheckels felt that she could use her experience to provide such a service for those families in our community.

“To be perfectly honest, a lot of my experiences around the dying and their families during the end, professionally, have been rather traumatic. Hospital deaths aren’t often pretty. Obviously we do our best, but it’s a cold sterile environment, it’s unfamiliar, and almost nothing that’s happening is within the control of the person who is doing the dying. It’s hard to maintain comfort let alone anything meaningful, ceremonial. I really noticed that all of these experiences had given me this insight and skill for being able to be present for people in a way that really improved their experience.”

So, what does it look like to be an end of life doula? Sheckels emphasizes that it’s really different for every person, every family, but that it ranges from talking through those practical issues such as advanced directives and what different medical interventions look like, to being sort of a life coach. She tries to help each person identify their priorities, and look to those priorities to determine what quality of life looks like for them. Often people have unrealistic expectations of the medical industry, that their loved one is just one intervention away, when this is often not the case. “There’s this idea that if we can then we should. This idea that death is something that has to be fought off. These things put a lot of pressure on the person that is dying.” Sometimes their experience becomes a “prolonged experience of life as a dying person.”

Sheckels helps the person create a care plan called The Best Last Three Months that addresses the emotional, spiritual, physical, and mental domains of life. “We identify what they really need to feel a sense of completion in that area. If you were to pass tomorrow, what would be the hardest thing for you to let go of? Sometimes those things are not really achievable, so we try to tease out what the significance is of that thing and find a meaningful and realistic way to do it.”

Legacy planning is also a part of the discussion. She helps people work through those big questions: “did I matter, how did I matter, and will the people that I’m leaving behind be okay without me?” For the family, she helps them work through planning vigil during active dying, and how she can help facilitate that. It may mean having a doula present for days, 24 hours at a time. Sheckels works with another end of life doula to help accommodate these more intense situations. She can also be a resource for lessening caregiver burnout by listening and allowing that person to express their emotions or staying with their loved one so they can get out and about. 

The concept of an end of life doula has really emerged with the past 10 years, and while there is not yet a certification for the practice, there are various organizations that offer training. Sheckels trained with the Conscious Dying Institute. She explained that many of these organizations are working to develop a certification exam and create an industry standard, and they are also connecting with the National Hospice and Palliative Care Organization to blend their work with hospice work, much like a birth doula works alongside midwives and doctors.

Beyond the personal care of families, it’s clear that Sheckels hopes to educate the community about the dying process. As she states, “A lot of people aren’t ready to approach death in a straightforward manner.” It goes back to fear and avoidance. “We take our fear and denial and put it in a closet and don’t look at it.” Through her work, she hopes to bring that fear and denial out into the open to work through it in an honest way.

I’ve often marveled at those who work with the dying and their grieving families, and I wonder about their well-being — their ability to care for themselves and separate from those intense emotions from time to time. Sheckels eloquently shares her strategy for self-care. “To walk people to and from the gate of mortality, I have to be able to navigate that terrain for myself. I have to regularly undertake personal work to maintain the ability to be present in the moment, to connect deeply with myself and others, and to embrace the impermanence of all living things, up to and including myself. That looks like meditation, journaling, therapy, connecting with nature, and completing my own end of life care planning.”

You can find out more about Threshold End of Life Doula Services through Facebook or Instagram, or reaching out at thresholddoula@gmail.com.

Complete Article HERE!

End-of-life doulas bring guidance and strength at a time of need

End of life doula Susan Capurso

By Erika Prafder

After her 52-year-old husband died of the flu in 2014, Susan Capurso from Long Island, New York was left feeling helpless, angry and unsupported.

“We weren’t prepared at all,” says Capurso, who had been married for 25 years. “We didn’t have hospice, as my husband’s illness was not a long-term one. At the end, there was no one standing next to me saying ‘this is what is happening now. He’s going to pass within hours and this is what to expect.’ I’m detail-oriented, I wanted to know.”

Interested in offering non-medical, holistic and emotional support to the dying and their families, Capurso began to research the work of an end-of-life doula. Traditionally, a doula is a layperson who aids a woman in childbirth and newborn aftercare alongside medical staff. In the same way, end-of-life doulas are supportive to hospice; they do not take the place of it.

To further her interest in this growing field, Capurso began volunteering for a hospice and enrolled in the certificate-bearing Doulagivers training school of New York City (DoulaGivers.com), a school started by Suzanne O’Brien, formerly a hospice and oncology nurse.

O’Brien was inspired when, on a trip to Zimbabwe in 2012, she saw how local people were trained to sit with a person who was dying and “guide” them through their journey. While the country lacks basic needs and medicinal care, “they did have neighbors sitting with a family member who is dying — holding that space for them,” says O’Brien. “The power of presence might be the most powerful medicine we have, but we’ve lost that in our health care system. We’re all in this together. We should support each other however we can.”

On O’Brien’s course, “training is individualized,” says Capurso. “Weekends are spent with [O’Brien] and everything else is done online through a series of live webinars and modules.”

The three-pronged curriculum covers end of life phases from diagnosis to stabilization, transition and disease process. Elder care assistance and advanced directive (when a patient determines their end of life wishes while they are still able to do so) is also covered.

“This covers the important papers you really need to button up, such as health care proxy, living will, do not resuscitate,” says Capurso.

Practical help is also part of a doula’s workload.

“We come into homes, prepping meals for the week, doing laundry and going through each room to ensure it’s safe,” says Capurso.

Beyond these basics, Capurso extends her healing work to include the creation of a legacy book with patients.

“It’s something we work on together. We go through your life, adding personal stories, photographs and memories,” says Capurso. “It’s not just something you’re leaving for family and friends, it really is therapeutic — bringing light, love and closure.”

Helping patients to compose letters to loved ones and assisting families with writing memorials and eulogies are also customary tasks.

Having your “funeral” before you die is another trend that doulas can help with.

“Why not have a memorial before you go?” says Capurso. “Let’s laugh, say our goodbyes and be happy. It doesn’t have to be scary. A celebration with the dying person there shapes the person’s life and offers closure.”

Carrying out a dying person’s wishes is also a top priority for Capurso.

“I can help find a way for the last days to meet a dying person’s desires. Maybe starting to contact family members to come in for a final visit, asking them to write a memory down on a card and placing it in to a basket, incorporating nice music, candles or aromatherapy,” says Capurso.

This line of work is especially well-suited for hospice volunteers who want to do deeper work, as well as healers, reiki practitioners, massage therapists and acupuncturists. It’s also beneficial to have a genuine interest in educating the community on the resources available for them.

“You don’t go looking for this career, it calls out to you,” she says.

The demand for such caregivers is overwhelming. By 2020, an estimated 117 million Americans will need some caregiver assistance.

“Doulas fit in to the personal companion model, which is a billion-dollar industry serving our elder population,” says Deanna Cochran, RN. Cochran is the founder and CEO of Quality of Life Care, LLC, in San Marcos, Texas, an end-of-life training and certification agency. She’s also the first chair of the End of Life Doula Council within the National Hospice and Palliative Care Organization.

“The dying have specific needs and fears that need addressing,” she says. “As we evolve, the field is ripe for training people to be skillful at this — it’s a movement that’s growing. There’s plenty of room for every single hospice in this country to have at least one part-time doula. Within the next 10 to 15 years, opportunities will also become prevalent at nursing homes and assisted living centers.”

Fortunately, training is more prevalent now.

“There are over 10 certification programs, ranging in price from $700 to $2,500,” says Cochran, who offers a fast-track, 16-week program. “You can learn the skills, but you need to do the work by volunteering through hospice, nursing homes, hospitals. There’s an art to it.”

Complete Article HERE!

How can we deal with death better?

From DIY funeral services to death doulas, B.C. is on the leading edge of a trend that wants to make death a part of life, and a better experience for everyone. Meet the women leading the trend.

 

By Denise Ryan

There may be no table more full of life than the corner booth at Paul’s Omelettery on Granville Street, where a group of women are talking over breakfast about death.

Three of the women are licensed funeral directors, two specialize in end-of-life planning, one is a celebrant, another an apprentice death doula — someone who assists families before and after death, the way a midwife does with a birth.

They call themselves the D’Posse.

The name is a playful nod to the word “death,” but their aim is thoughtful and resolute: to transform the way we commemorate and bury our dead, to bring death back to life.

Glenn Hodges, manager of Vancouver’s Mountain View Cemetery, has dubbed them “the disruptors” — part of what he says is a growing number of end-of-life workers, many of them women, who are quietly, respectfully, and often joyfully, working to take death out of the hands of the corporate monopolies, and give it back to families.

Although many funeral homes in B.C. still bear the names of the families that originally established them, many of these are owned by Service Corporation International, a conglomerate headquartered in Texas. SCI owns 45 funeral homes in B.C., about a third of the funeral service providers in the province. (SCI, which trades on the New York Stock Exchange, has repeatedly tangled with consumer advocates over everything from its pricing to sales techniques.)

Funeral director Ngaio Davis spent 20 years working for a number of providers in the corporate funeral industry before breaking away to start Koru Cremation, Burial and Ceremony (korucremation.com), which she runs out of a cheerful space on Kent Avenue in Vancouver.

Like the other women at this monthly breakfast, Davis says she was drawn to the funeral industry because she wanted meaningful work. “I wanted to do something that felt worthwhile,” says Davis.

Coming face to face with death never made Davis uneasy — but the funeral industry did.

“There are a lot of wonderful, compassionate people in the corporate funeral homes,” says Davis. What bothered her, she says, was the focus on profit: “What’s the bottom line?”

Davis says one funeral home she worked for stipulated that commissioned sales staff be in every meeting with grief-stricken clients to have the “face time” to push extras. At another job interview, she was grilled on what her average sales “per call” were — this was not the work she wanted to be doing.

Lisa Hartley is a ‘celebrant’ who officiates at weddings as well as funerals.

‘What can I help you do?’

Despite decades of scrutiny, the North American funeral industry has changed little since Jessica Mitford’s 1963 expose, The American Way of Death, in which she called the funeral industry a “huge, macabre, and expensive practical joke on the American public.”

A big part of that macabre joke is the cost.

The average traditional funeral in Canada costs $10,000, according to Stephen Garrett of the Memorial Society of B.C., and GoFundMe counts funerals among its fastest-growing fundraising categories.

“From a basic cremation at about $1,200, costs range up to $15,000 or $20,000 — which is fine if it’s in line with your budget. But that’s where we get into problems with funeral homes pushing that on people,” said Garrett.

In addition to basics, such as registration of death, transportation, sheltering and disposition of the remains, costs — and funeral home profits — skyrocket once the bells and whistles are added: the expensive casket, which may be incinerated days later, embalming (not a legal necessity in B.C.), makeup, hairdressing, flowers, grief counselling, memorial, and follow-up house calls to sell products, such as future burial services, to survivors.

Five years ago, Davis decided to do something different.

Davis says her approach to death is informed by her Maori heritage. “Maori practices around death and dying are very strong. You are with your dead. You don’t just let them be taken away and be controlled by others. The family is the one who is crafting and planning what happens, and what will be the final ceremony.”

At Koru, the reception room is simply decorated with none of the trappings of a traditional funeral home: no sombre music, heavy curtains, or staff in dark suits.

Clients can plan as elaborate or as simple a funeral, ceremony and cremation or burial as they wish. Koru also specializes in green burials — biodegradable casket or a simple shroud, and no embalming — and will facilitate DIY, family-led or “home funerals.”

“This week, I’m looking after a family that wants to take their father and husband back home to his condo in North Vancouver. They want to have him there, they want to give him a sponge bath, dress him, and let him spend his last night there with his wife,” Davis explains.

Davis will transport the man and bring a special table so he can be laid out in his own home. “We will move him onto the table so it’s more comfortable for them to bathe him and dress him,” said Davis.

The next day, Davis will return with the casket, which will be placed in the condo’s common room because it won’t fit in the elevator.

“They are lining the casket with sheep wool that one of the kids brought from Scotland, and then we will go to the cemetery,” said Davis.

“His wife knows what she wants. They’ve been married for 60-plus years — they want those last moments together.”

At Paul’s Omelettery, over the warm clatter of breakfast dishes, cups and spoons, Lisa Hartley, a celebrant who officiates at weddings as well as funerals, recalls meeting Davis when her father-in-law died unexpectedly in his West End apartment.

His death had come quickly and the family was unprepared.

“We didn’t know what to do. Someone said, ‘Call Ngaio,’” says Hartley. “Her first question to us was, ‘What can I help you do?’”

They didn’t have to go to a funeral home, something Hartley was uncomfortable with.

“Ngaio came over to the apartment, and sat on the sunny balcony with her checklist, and we went through all the options.”

The family chose to keep Hartley’s father-in-law at home for a short period, and her husband decided he wanted to participate in the washing of his father’s body. “I never expected him to do something like that,” says Hartley. “But it really helped him.”

While the family gathered in the apartment, Davis completed the preparations.

“When she had him ready, she wrapped his body in a beautiful red velvet cloth, but she came to us first and said, ‘Peter is ready to go now.’”

Hartley was deeply moved by the experience, and now works closely with Davis and other alternative providers as a funeral celebrant. “My special interest is in sustainability in death care,” says Hartley. That means being more hands-on, in DIY and home funerals.

Hartley’s ceremony design process includes in-depth meetings with the client and family and friends to talk about the person. “It’s quite beautiful, and it’s often the start of the healing process. People get to tell stories about the person that has died. I recently had one person who said, ‘I feel better already,’” says Hartley.

Jennifer Mallmes is a death doula who founded the End-of-Life Doula program at Douglas College.

When death is expected, a death doula can help the family prepare for what Jennifer Mallmes, founder of the End-of-Life Doula program at Douglas College, calls “a gold-star death.”

“Planning really does help with the death and bereavement process, even when people don’t want to die,” said Mallmes. “Barring sudden or unexpected deaths, you can have some choice in how you go. Who do you want around? Who do you not want around?”

A death doula will help individuals and families faced with an illness or a diagnosis that a death is coming plan home care or hospice care, work with funeral services. They can also help with making what life is left fulfilling: “We can help with a life review, ask what are the things I still want to do? We might look at services to help them accomplish those things.”

Death isn’t just a business, it’s a way of life

Garrett said that although the funeral business is slow to change, Baby Boomers are pushing the trend toward the “reclamation” of death and dying.

“The Boomers demographic changed the world they lived in — they questioned authority, lived through the Summer of Love, built the environmental movement,” says Garrett. “We’re on our way out, and that’s going to change things, if only because of the large numbers.”

About 34,000 to 35,000 people a year die in B.C. “That death rate in the next 10 to 12 years is going to head north of 45,000,” says Garrett. “We’ve got 916,000 Baby Boomers living in British Columbia with only one way off the planet.”

Glen Hodges is the manager at Mountain View Cemetery in Vancouver.

Although Statistics Canada doesn’t keep numbers on the kinds of funerals people hold, Glen Hodges says he has seen changes in people’s attitude toward death. Part of that has been the renaissance of the city’s only cemetery.

Mountain View shut down briefly after running out of grave space in 1986, but a new master plan created more space. Mountain View built columbaria (condos for cremains) to house niches for cremated remains, and reclaimed unused graves from families — a complex and provincially regulated process that applied to plots purchased at least 50 years ago and never used by family members in that time.

Hodges says the city has also been working to re-establish the cemetery as a place for the living.

“A cemetery is not just a utilitarian place for disposal of the dead and keeping of public records,” said Hodges. “(It is also) a sacred place to remember and commemorate, and it has a larger role within the community.”

That includes family oriented community events, such as its annual All Souls Night, which draws up to 2,000 people.

“We invite people to wander into the cemetery to light candles and leave mementos for their loved ones and be in a contemplative atmosphere filled with candles and music and in a place that is safe for them to speak of the dead and talk with others.”

Mountain View doesn’t require grave liners, so green burials are possible, as well as reburials, an option that allows families to open the grave and reposition any remains still there so a new casket can be added.

Hodges regularly hosts free workshops hosted by D’Posse members Reena Lazar and Michelle Pante of Willow EOL (end of life).

The workshops, says Pante, are designed to help people figure out how embracing their mortality can change the way they live. “Our lives are limited, they are precious and finite, so we ask how does that fact affect how we live?” said Lazar.

The workshops help people explore their thoughts and feelings about death and guide them through the process of creating what Pante calls “heart wills,” or love letters for the family and friends who will survive them.

Their clientele ranges through all age groups, says Pante, although many are healthy and in the Boomer demographic.

Boomers may be fuelling the trend toward a more compassionate, affordable, personalized experience after their final exits, but for Davis and her growing network, death isn’t just a business — it’s a way of life.

Many find their way to Koru after a negative experience elsewhere, says Davis — whether it was sales pressure that shamed them into overspending, a service that didn’t reflect their loved one’s personality, or a makeup job that made them look like a stranger.

“Here was this very important moment in their lives, and they were robbed of it. It could be a special time, or it could be something you never want to go through again. So I’m just doing my little bit to change that.”

Stephen Garrett, seen here at Mountain View Cemetery in Vancouver, is the executive-director of the Memorial Society of British Columbia.

The Planner

Stephen Garrett, executive director of the Memorial Society of B.C., a non-profit society serving 240,000 members, believes that much of the expense and discomfort families inherit when a loved one dies can be avoided with good planning. To help people making final arrangements, Garrett has designed the “All Ready To Go Binder” to help with the death planning process.

“When my sons were 21 and 23, I invited them over for beer and pizza. I had the death binder in the middle of the table,” said Garrett. “They were a bit shocked — they didn’t want to think about me being dead and I didn’t want to think about it either — but as a responsible parent, this was my gift to them.”

The mood changed as he went through his wishes and let them know that he would be throwing in a family holiday: an all-expenses-paid trip to India, where he wants his ashes to be sprinkled in the Ganges River. Making a plan that’s personal, that includes opportunity for meaning, is part of what can make the process fun, said Garrett.

The binder is available on the society’s website for a nominal fee, and Garrett would like to see every family in B.C. have one.

The All Ready to Go Binder is a place for everything from your last will and testament, to advanced care directives, funeral arrangement forms, and other details such as people to call, copies of personal identification, and celebration-of-life plans.

The purpose of the Memorial Society is to help families prepare for and plan affordable services by partnering with ethical providers. The Memorial Society of B.C. offers lifetime membership for a one-time $50 fee. Members receive discounted prices of 15 to 30 per cent with participating funeral providers and access to support, advocacy and planning.

By The Numbers

$7,181: Average Cost of a traditional funeral (includes viewing, burial, embalming, transport of body)

28.6%: Percentage increase in average traditional funeral costs between 2004-2014

87%: Percentage increase in average traditional funeral costs between 1980-1989

90%: Cremation rate in B.C., up from 60% in 1986

Source: B.C. Memorial Society

Complete Article HERE!

How to die the way you want

Tackling the tough questions over a cup of tea or coffee

By

We’re all dying, every one of us.

But we learn early on that despite the fact our lives are universally finite, most people don’t want to talk about it.

We’ll talk sex, we’ll talk drugs, we’ll even talk money—but not death.

That could be changing with the proliferation of so-called Death Cafes, informal get-togethers in cities across America, Europe and Asia, where people eat a little something, drink some coffee maybe and talk about, well, the inevitable.

The mission is to revamp typically depressing and urgent end-of-life discussions to more leisurely “Everything-I-Wanted-To-Know-About-Death-But-Was-Afraid-To-Ask.”

The conversation ranges, and depends on the group of people who’ve gathered: anything from how much a funeral costs to the details of a “green” funeral (think: corpse as compost) to tips on how to talk to your family members about your own funeral.

There’s a range of people who attend, too, from someone who had a death in the family and wants to be better prepared next time, to health care providers who want a different perspective on dealing with death. They range in age from 20-somethings to 90-somethings.

The object: to turn death from a feared end to something that is part of life.

“Death Cafés change the way you live in the most profound and wonderful way,” says Kim Mooney, 67, who runs monthly meetings in Longmont, Colorado.

Mooney even held a few events in a mortuary. “I like to say it’s the only time you will walk in and walk out of one, so you might as well take advantage of it.”

Death café hosts tend to have a sense of humor.

Death on twitter

If you want to confirm the popularity of the death positive movement, just go on social media. There’s The Death Café Facebook group, which lists times and dates of meeting and has more than 50,000 likes and followers. 

Or you could follow Death Café on Twitter

Advocates say the meetings allow people a low-pressure way to express fears about the Great Unknown; to chat about the way other cultures handle death; and to share practical information, such as learning the nuts and bolts of filling out end-of-life forms.

Talking with strangers, hosts say, is often an easier way to broach the topic before launching a conversation about death with loved ones.

Lizzy Miles is a hospice social worker who hosted America’s first café in 2012 in Westerville, Ohio. She baked cookies in the shape of tombstones with grey icing and “Death Café” where the epitaph normally goes.

She is one of more than a 100 Death Café hosts in this country. She’s still hosting—and still making treats—for nearly a dozen people who show up each month.

Yes, these are the cookies Lizzy makes for her Death Café guests in Ohio.

“No one ever comes to a Death Café already uncomfortable talking about death,” she says. “If you are, you’re not going to come. We have a lot of sandwich generation people, who are taking care of their parents.”

Miles is so committed she even traveled to a Death Café in Hong Kong—“on my own dime!”—to see what it was like. 

“It was amazing, people were speaking English and Mandarin and Cantonese,” she says. “And I thought ‘Oh my gosh, all these different languages. This is pretty cool but almost exactly the same.’” 

Dos and don’ts

Anyone can be a host, but there are guidelines. The Death Café website has a set of guidelines and Miles herself was a co-author on an article that included a list of dos and don’ts in the Omega Journal of Death and Dying: 

Do: Allow a space for folks to share their ideas respectfully and openly. 

Do: Offer the opportunity for everyone to speak but allow those who want to remain silent to do so. 

Don’t: Charge an admission fee. 

Don’t: Sell death-related products. 

Don’t: Turn the group into grief support. 

Miles and others believe that confronting our mortality will prompt us to the make the sorts of life changes that some folks do only when confronted with a fatal disease. Why wait? 

Shellie Balogh, a 61-year-old hospice nurse attended one of Miles’ cafés in Ohio.

 “It wasn’t what I expected; it was more upbeat,” she says. “It’s a fun thing to do if I have a free Saturday. You go and meet people you may never see again and just have this conversation, opening up this forbidden area of discussion.” 

A midwife for dying

Suzanne O’Brien hosts a New York City group that meets at a public library on the Upper West side. She’s a nurse turned death doula.

Death doulas—part of this burgeoning “death-positive” movement—provide the same sort of bedside care, comfort and companionship that birth doulas offer to pregnant women but at the other end of the life cycle. 

O’Brien said monthly conversations tend to fit into five buckets, sometimes all five covered in one 90-minute session: 

The physical: How do I make sure I’m comfortable during my dying hours. What do I want to happen to my body? 

The financial: What forms do I need to fill out? Or how much money do I want to spend on a funeral versus, say, end-of-life care? 

The emotional: How do we deal with potential regrets or forgiveness? 

The mental: Reasoning and acceptance  

The spiritual: How do beliefs about death inform the way we live.  

One woman wanted to know how to donate her body to a medical school anatomy class. She also wanted to make sure her family would not be given the leftovers when the students are done picking her apart, something she had heard can happen. 

She told the group: “I’d rather just be flushed.” 

Banishing the secrecy

The idea of a group of a random community members chatting about death over refreshments was the brainchild of Swiss sociologist Bernard Crettaz. He launched a “Café Mortel” in 2004 in the lakeside town of Neuchâtel, Switzerland. A dozen mortal members attended. 

The point, as he once told a reporter for the Independent, a British newspaper, was to remove death talk from its “tyrannical secrecy.” 

The first cafe outside of Switzerland was held by John Underwood,  who hosted in his London basement in 2011. He’s given credit for helping the movement go global; he died last year, at the age of 44, from undiagnosed leukemia.

Today, there are death-with-food meetings in about 55 countries—including the U.K., Italy, Hong Kong, Finland, the Netherlands and New Zealand.

Becoming a regular

Those who are regulars say that while the subject matter is death, the meetings are not sad. Hosts emphasize that they are not grief support groups, more death-curious groups.

Jane Geller, a retired schoolteacher in New York City attends the Upper West Side meeting nearly every month.

“It’s a misnomer to think it’s depressing,” she said. “Death Cafés are really about life.” 

Shatzi Weisberger, an 88-year-old retired nurse from New York City is a regular, too. 

 “I was always especially interested in how we come into this world and how we leave it. When I got into my eighties, I got personally interested for my own edification.” 

Last fall, she hosted her own “FUN-eral” (pronounced Funn-eral) in the common room of her apartment building. More than 100 attendees came to the event. It sounded like a macrabe-themed birthday but she said it was a death, not a birth, party. And a way to attend her own funeral. 

She said she has planned her own green burial. “I’m going to be wrapped in a shroud and buried in the woods upstate and my body will deteriorate and something will grow.  I don’t know if it will be grass or flowers or a tree so I feel my dying is bringing life into the world. That’s not depressing at all.”

Complete Article HERE!

Seattle, It’s Time to Talk About Death

There are many things we want to talk about with family and friends; death isn’t usually one of them. But from Death Salons to Death Cafes and dinners, there are plenty of signs in Seattle that this is changing

BY: Jen Swanson

There are a couple of ways to kill a dinner conversation. First, discussion of politics, a truism that is magnified in our divisive modern age. Second, religion, although this doesn’t often come up on this side of the Cascades. Finally, death, though most people would never consider raising a subject so morbid. In terms of topics to avoid discussing over dinner—or ever—mortality ranks high on the list.

However, one local entrepreneur and author, Michael Hebb, considers such conventional thinking dead wrong. “It’s like the opposite end of the continuum of talking about the weather or of a cocktail conversation,” says Hebb, whose new book, Let’s Talk About Death (Over Dinner), describes death as the most important conversation we’re not having. Such silence bears serious repercussions, and not only in terms of missed opportunities to connect with your loved ones. The book identifies end-of-life hospital expenses as a leading factor in American bankruptcies, Medicare patients outspending their total assets, and the sad fact that 80 percent of Americans die in hospitals, despite most wanting to die at home.

CONVERSATION STARTERS: The dinner table is the perfect place to gather and talk about death, says Michael Hebb whose new book helps foster these conversations

To Hebb, whose deep interest in death-related discourse led friends to throw a living funeral for his 40th birthday, one problem is that modern Americans no longer make time to eat together. “Just like we’ve forgotten how to pickle and can and preserve, we’ve also forgotten how to come together around the dinner table and have meaningful conversations,” he says, ruing the loss of this important “cultural engine.” The book and its companion website , inspired by a course Hebb taught at the University of Washington, offer an easy, DIY format intended to help readers host their own death dinners, with personalized cues and prompts that have fostered 150,000–200,000 dinners worldwide since launching in 2012. “There hasn’t been a single Facebook, email or Twitter response indicating a dinner went badly, which tells me that people know how to have this conversation,” says Hebb. “Maybe they’ve had a forgettable experience, but no one having a bad experience tells me that we’ve tapped into a basic human need.”

Hebb isn’t the only local focusing on this topic. From Death Salons to the locally produced Speaking of Dying film and companion workshops, there is a quiet movement in the area that’s giving voice to this once taboo subject. “This is a great region that’s having an interesting undercurrent conversation,” says Taryn Lindhorst, Ph.D., LCSW, a Behar professor of integrated oncology and palliative care social work at the University of Washington, who cites the Pacific Northwest’s counterculture vibe, antiauthoritarian bent and focus on experimentation as some of the reasons why.

Karuna Duval hosts Death Cafes which offer a safe place to talk about death

While Michael Hebb was restoring the lost art of breaking bread, the concept of discussing existential topics—like death—over tea and cake was gaining traction in England. The idea for Death Cafes was originally conceived in London in 2011, but quickly spread across the pond to North America and particularly to Seattle, where Death Cafes have cropped up in libraries, mortuaries, houses and actual cafés.

“It’s a safe place to talk about death,” says Karuna Duval, an ordained interfaith minister, hospice chaplain, certified death doula and one of many volunteer facilitators hosting Death Cafes in and around the city.

Duval has hosted Death Cafes in Washington and California, where she used to live, and estimates 7,200 Death Cafes have now taken place in 52 countries worldwide. “I just found it so fascinating because of the experience of so many people,” says Duval of attending her first Death Cafe in 2012 in California, following the deaths of her father, grandmother, partner and first husband. Such open discourse hadn’t been evident 10 years before, when Duval, inspired by a book titled Talking About Death Won’t Kill You, tried to organize her own workshops to foster end-of-life discussions and planning. The response then was lukewarm, but a decade later, the temperature had changed. “It felt like a relief,” says Duval, who was seeking to process all the loss in her life. “It was like, oh my gosh, I can finally be around people who aren’t like wigged out or weird talking about this stuff.”

There are all sorts of reasons why people don’t talk about death: A desire not to sound overly morbid. Fear of the unknown. A remove from death that has happened because so many people now die in hospitals, not at home. The superstitious notion that talking about death might hasten the event. The “go, fight, win” mode often prompted by serious illness. “In fact, the opposite is true,” says Hebb, describing how our cultural programming can work against us. “If somebody has a terminal diagnosis, having end-of-life conversations will extend their life. And that’s clinically proven.”

Our underlying “death anxiety” was the key focus of the late scholar, author and roving professor Ernest Becker, whose seminal book, The Denial of Death, won the Pulitzer Prize in 1974. “Ernest Becker was a cultural anthropologist who developed theories about how the uniquely human awareness of our mortality impacts our behavior,” explains Deborah Jacobs, executive director of the Seattle-based Ernest Becker Foundation, which was founded by a retired physician in 1993.

“I would posit that the death-positive movement is founded on Ernest Becker’s thinking,” says Jacobs of the growing swell of Death Cafes, death dinners and other efforts in recent years to reclaim the ways in which we talk and think about death, actions that echo the foundation’s longstanding efforts to bring our underlying awareness of death to the forefront.

To Becker, who saw death anxiety as a key driver in everything from religion and culture to our choices of partners and jobs, knowledge of our inevitable passing also drives each person to embark on an “immortality project,” or a quest to fill our lives with meaning. “Meaning has to last beyond our demise, our physical demise, so it could be making children, writing books, being good at your job, being a war hero, being a terrorist,” says Jacobs, noting Becker’s diverse appeal.

LIFELINE: Retired hospital chaplain Trudy James, through her company Heartwork, offers workshops that tackle numerous end-of-life issues

Trudy James, a retired hospital chaplain, also sees Becker’s theories at play in our current health care system. “The medical system became part of what was already the underlying denial of death,” says James, describing a system in which doctors don’t talk to their patients about death or dying. This marks a departure from James’ early career, which stems from the 1980s AIDS crisis, when patients knew they were going to die, openly discussed it and ultimately died more peacefully. “We live in this fantastic medical environment where we’re the beneficiaries of fabulous health care and have all these new procedures and new clinical trials and new treatments and new medications,” she says. “It’s caused people to believe they can live forever.”

James’ solution was to create a four-part series of end-of-life workshops and a documentary film, Speaking of Dying, which follows patients, families and medical professionals through various end-of-life options, including Washington state’s “Death with Dignity” law. Screened at churches, senior homes and other venues in Seattle since debuting at the Frye Art Museum in 2015, the film always draws attendees, including doctors and hospital chaplains who’ve never discussed death with their own families, says James, describing the documentary as an instant conversation starter. Meanwhile, the workshops, offered since 2008 through James’ company, Heartwork, offer participants a safe, intimate space to share stories, address questions and fears, complete advance directives and get familiar with hospice/medical procedures, such as CPR, which rarely works out in real life like it does in the movies. Doing this “real work of dying,” as James calls it, allows people to spend their final moments in peace with their family.

Death Doulas
These coaches help ease the end of lifeAs more people decide to die at home, death doulas, also known as end-of-life doulas or death midwives, guide patients and their families through the end-of-life process in a way similar to how regular midwives would assist with home births. Death doulas play various roles, from offering patients comfort and companionship in their final days to supporting the family by performing basic caregiving tasks, assisting with funeral planning and helping loved ones grieve. “It’s not to replace any of the components of hospice,” says Karuna Duval, a hospice chaplain who is also a death doula, of the two programs’ complementary functions. The International End of Life Doula Association (INELDA), founded in 2015, is just one of many organizations offering training and accreditation to anyone interested in joining this budding movement.

“If you haven’t had these conversations by the time you get to the hospital, the hospital is a terrible, terrible place to have them,” says Lindhorst, the UW professor, noting the ease with which hospitals can overwhelm patients who haven’t considered their options beforehand.

“It’s kind of like a conveyer belt,” says Lindhorst, describing a medical system whose default status is always set to treatment. “Once you step on it” and start down that path, “then treatment implies the next thing, implies the next thing, implies the next thing,” she says, noting how easily people can get moved through the system, in part because doctors don’t often have more than 15 minutes to explain various options. “It’s not anybody’s fault per se, but the system is so strong in this,” says Lindhorst, who saw early on in her career, which was also rooted in the HIV/AIDS epidemic, that the onus is on patients to be knowledgeable and empowered.

ACTING OUT: Playwright Elizabeth Coplan channeled her grief over the death of a family member into a a play, The Grief Dialogues which is also now a book of essays by 61 authors

The medical community could learn something from Elizabeth Coplan, a playwright who four years ago was struggling to cope with the death of a cousin, a freak accident that claimed a loved one and octogenarian in-laws so fearful of dying they refused to entertain any end-of-life discussions. “Some people write in journals,” the theater veteran remembers of her efforts to process the situation. “I’m going to write about my cousin’s death as a play.”

That exercise resulted in The Grief Dialogues, a series of short plays structured like The Vagina Monologues, but with actors exploring scenarios centered on grief, death and dying. The 90-minute production, which invites a grief counselor on stage to lead an audience Q&A after every show, immediately resonated with people, says Coplan, who credits the play’s passive, third-party presentation as a safe way to broach a taboo topic. “By sharing my stories that way, which you could just take as strictly theatrical or you could take it as entertainment,” people finally started to open up, she says. “Suddenly, people who were afraid to talk about death in general, or their own experiences with grief, all of a sudden wanted to share their stories.”

It was while applying for grants for her production that Coplan came across The Order of the Good Death, a Los Angeles–based group of funeral-industry insiders, academics and artists seeking to promote a culture of “death positivity.” She was especially taken by the group’s Death Salon, a weekend conference on mortality styled in the vein of an 18th-century gathering of intellectuals, so much so that she volunteered to bring the event to Seattle. “It was kind of like a Comic-Con for death,” says Coplan, recalling the Victorian-style hairstyles, makeup and dress on display during the sold-out affair, which took place early in September 2017, in partnership with the UW School of Social Work.

The event marked an important turning point for Seattle’s death community by uniting the diverse leaders of a fragmented movement that had so far existed on the relative fringe. Presentations were delivered by Chanel Reynolds, whose husband’s untimely death led her to found GYST (Get Your Shit Together), a website introducing others to the easily avoided world of wills and life insurance. Other presentations included a Death with Dignity panel moderated by Sally McLaughlin, executive director of End of Life Washington; an introduction to green burials; a film about Death Cafes; and an exploration of postmortem pet options with Caitlin Doughty, the 34-year-old mortician who founded The Order of the Good Death in 2011. Lindhorst, the UW professor, explained the natural signs and symptoms of approaching death, knowledge that’s becoming increasingly rare as fewer people die at home. Nora Menkin, executive director of The Co-op Funeral Home of People’s Memorial—the country’s oldest and largest funeral cooperative and also a Death Salon cosponsor—examined alternative death care. Katrina Spade, the founder of Recompose, described her pioneering efforts to transform human remains into soil. On the first night, The Grief Dialogues debuted to a full house at the UW’s Ethnic Cultural Theatre.

“People who are into this, they’re hungry for it,” says Jacobs of the Ernest Becker Foundation, describing the Death Salon as a “critical community builder,” which has a mission similar to the foundation’s of providing “a home” for like-minded seekers. Along with cosponsoring the event—and participating in Death Salons in Philadelphia and Boston—the foundation facilitated a lunchtime dialogue, allowing guests to break from the conference format and engage in a round-table discussion about death.

The success of the Death Salon conference is one indication of our region’s relative death positivity, which could be attributed to the sheer number of innovators working in this space. “The good-death movement, or the death-positivity movement, used to be defined by a couple of individuals,” says Hebb. “Now, there’s a huge community of thought leaders, practitioners and enthusiasts, so that’s the big change,” he says. “It’s a very multidisciplinary community of people considering these issues,” he says, pointing to the mix of artists, entrepreneurs, doctors and “blue-chip establishment folks,” like Cambia, an organization that runs an entire center devoted to palliative care at the University of Washington, feeding Seattle’s “unique influence and impact.”

Such attitudes could also be influenced by our diversity, speculates Lindhorst, who points to our large Asian population as an example. Religions originating in Asia, she says, “have a very different kind of orientation towards death,” contrasting the Christian biblical literalist interpretation of death with Buddhist movements flourishing on the similarly progressive West Coast. “In many Asian cultures, that idea of integrating daily thinking about death is actually part of the spiritual condition as opposed to the dominant avoidance that we have here in the United States.” Social media, which makes it easier than ever to find and share information, also factors into the death-positive movement’s recent swell.

“I think more of us are talking about death and grief in a very open way,” says Coplan, describing today’s conversations about death as less a “macabre, voyeur” issue and more of an academic one, even if society still has some way to go. “I actually give the millennials a lot of credit for this kind of chipping away of the stigma around talking about death,” says Coplan, who has two millennial sons and meets plenty more at her shows. “They are incredulous that their parents are getting so worked up and don’t want to talk about death,” she says, describing the younger generation’s lack of fear regarding what they know to be a natural eventuality. “We talk about sex, we talk about drugs, why don’t we talk about death?”

Why Talk About Death?

There are lots of good reasons to talk about death, and not only because such discussion helps us prepare for the inevitable. Completing your advance directive, a set of legal documents that detail your last wishes, and communicating its contents and location to loved ones clarifies your thoughts on life support and other medical interventions. (Advance directive forms are available from your physician or most health care organizations.)

Sharing your post-life wishes up front removes any guesswork involving the funeral, which, pending legislation scheduled for the upcoming January session in Olympia, could soon extend beyond the standard burial and cremation options to include alkaline hydrolysis, a water-based cremation also known as “aquamation,” and recomposition, a natural process that converts human remains into soil. Communicating the contents of your will and choosing an executor of your estate helps avoid surprises and legal pushback. Moreover, having these conversations beforehand alleviates stress on your loved ones, allowing them to avoid making difficult decisions under pressure and simply focus on their grief.

“The people who have had the conversation and at least know what the deceased person wanted, if they got a chance to talk about what was important to them, they’re much more confident in making the decisions and going through the process,” says Nora Menkin, executive director of People’s Memorial Association and The Co-op Funeral Home on Capitol Hill. “The people that tend to have the hardest times are ones that didn’t have any conversation, therefore there was absolutely no preparation for it,” says Menkin, whose organization, in addition to regular end-of-life planning workshops, furnishes each of its 70,000-plus members with end-of-life planning documents that double as excellent conversation starters. “We also want to make sure it starts the conversation with the family, because it does the family absolutely no good for Mom to say, ‘Oh, it’s all taken care of,’ but not tell them what she wanted.”

A Few Tips for Getting the Conversation Started

It’s never been easier to instigate conversations about death, at least if you have a copy of Michael Hebb’s new book, Let’s Talk About Death (Over Dinner). The book builds a solid case for why the dinner table is actually the perfect place to discuss death and dying followed by ideas and tips—including what to eat, whom to toast, and a menu of conversation starters—for hosting your own death dinner at home.

Prompts include, but aren’t limited to, the following thought-provoking questions:
• If you had only 30 days left to live, how would you spend it? 
• What is the most significant end-of-life experience of which you’ve been a part? 
• Do you believe in the afterlife? 
• Would you ever consider doctor-assisted suicide?
• If you were to design your own funeral or memorial, what would it look like?
• What song would you want played at your funeral? Who would sing it? 
• What does a good death look like? 
“It’s like a board game,” says Hebb of the death dinner series’ easily replicated structure, which is also available online. “The only thing we don’t provide is the food.”

Complete Article HERE!

The Death Doula

Traverse City doula Krista Cain guides people in … and out of the world

By Molly Korroch

“The human brain learns from stories,” says Traverse City birth and death doula, Krista Cain. As she sits with a mug of hot herbal tea at Cuppa Joe in the Village at Grand Traverse Commons, she explains her own story and the not-so-strange duality of her business, Sweetwater Doula, this way: Everyone experiences birth and death. Whether you’re experiencing them directly or through someone close to you, they’re an inevitability. They’re both also mammoth experiences marked by extreme emotion, hospital visits, and ceremony. Each of these experiences, she says, is a wave that smacks our bodies and minds repeatedly back down into the fray. Each is exhausting. But, she asks, “Why not ride [that experience] and let it take you in the direction you want to go? I want my teaching to be a surfboard.”

A doula is not a medical practitioner. A person working as a doula is not a doctor or a midwife; he or, more commonly, she is a guide.

Doula is a Greek word that was appropriated in the ’80s to describe a female assistant,” says Cain, but the definition has since expanded to describe someone who helps others during intimate emotional and physical events. Becoming a doula isn’t something with a hard start or stop, like a medical degree or a teacher certification. It’s common life experiences. “Walking people through life is a softer line,” she says.

Cain’s own line toward becoming a doula wasn’t a direct one. She originally hails from Southern California. She has a background in education and worked as a high school math teacher before coming to Michigan. But when she and her husband, who grew up in Traverse City, moved to northern Michigan in 2011, Cain, who was pregnant at the time, had a jarring resolution: “I’m not here to teach math. I’m here to teach people.”

Her transition into teaching about birth and death began with a certification in the Lamaze technique, which she still teaches alongside her workshops in birth and death. As she taught, she began to see that there were some holes in her personal experience with birth: She had never attended a birth other than her own. Her training as a birth doula began from a desire to offer even deeper knowledge and empathy to her clients.

Likewise, another life experience led her to expand her business to include not only guidance in birth but also in death. In particular, experiencing the death of her young goddaughter showed her how helpful it is to approach death in whatever way makes most sense to the person experiencing it. Death is certain, yet always feels unexpected.

Cain began training as— what she calls — a “death doula” in 2016, with an organization based in California called Bridging Transitions. The mother of one of its founders lived on the Leelanau Peninsula before she passed away in 2016. Cain was able to participate and assist the family during this time. She learned about both the scientific and social nature of death and dying.

Funeral Director and owner of Life Story Funeral Home, Vaughn Seavolt, worked directly with Cain during the funeral for a family who wanted to participate in all aspects of their father’s death. He said he sees a lot of value for both the person passing and the loved ones left behind.

“Having a death doula participate made it very meaningful for the family,” says Seavolt, “I think that it’s very rewarding and very healthy for families who want to participate as much as they want to.”

Cain says birth and death are extremely social experiences, and a doula helps with the social needs and pressures surrounding these major life transitions.

“A doula is a person who is skilled to walk beside you — your family, your partner — to meet your needs as you go through these changes,” says Cain. She will help you and your family in whatever way you need, from deciding what sort of service you want (do you even want a service?) to finding a place in the refrigerator for all the casseroles you’ve received.

“It’s not all about green burials,” says Cain. “You can do this with a body preserved in formaldehyde. You can do this with someone who’s been cremated.” On her website, Cain talks about how the ceremony surrounding the death of a loved one can be exactly what you make of it. It can take place at a funeral home, the hospital, a loved one’s home — whatever makes most sense for your situation. It can have as much or as little religion as is right for you and your family and friends. “There are religious traditions that guide the day, and there are ways you can walk alongside those traditions to serve the needs of the people who are carrying them out,” says Cain.

Most importantly, she provides both information and validation for your personal choices. In birthing and dying, what is right for one person might not be right for another, and that’s OK, Cain says.

Explains on of Cain’s birth clients: “It is also refreshing to hear people talk openly and without judgment about ‘taboo’ topics like postpartum depression and mental health counseling, miscarriage and infertility.”

Cain is adamant about empowering her clients through education. “We have a right to know about this stuff,” she says, “[both the] transformative experience of it and the nuts and bolts.”

A quick internet search reveals that end-of-life doulas are on the rise. There are lots of names for it: “end-of-life transition guide” or even “midwife of the veil,” but Cain prefers to keep things simple and bypass the poetry.

“Right now I straight up say ‘Death Doula.’ The reason I say that is because it’s really reallyclear. I don’t want to have to be that blunt, but we’ve done such a good job at covering it up.”

She’s working to uncover these topics, though she recognizes that it takes a fair amount of bravery to approach them openly. Cain often hosts workshops in both life and death. Who are they for? “Anyone with a life span!” she says, laughing. “If you’ve got a life span, you might at some point want to consider thinking about these things.”

Matters of Life and Death
Want to learn more about Cain, her services, or upcoming workshops? Check out www.sweetwaterdoula.com.

Complete Article HERE!

Death doulas can fill care gaps at the end of life

Palliative care nurses, social workers and people from the funeral industry are among those who work as death doulas.

by , , and

With continual advances in modern medicine, we’re enjoying longer lives. As the population ages, and particularly as many people are living longer with cancers and chronic diseases, end-of-life care is adapting and changing.

People who are approaching the end of their lives will usually spend some or most of their time at home, requiring care and support to do so. Family members might not always be available to provide this care. When they are, the process can be rewarding, but it can also be challenging and complex, often leading to a severe emotional burden for the carer.

Gaps in our health and social care systems are starting to be filled by death doulas. But beyond providing practical support, families are increasingly seeking the services of death doulas to help navigate the experience of dying. Those nearing the end of their lives, too, may bring in a death doula to ensure they can die the way they want to.

We urgently need a conversation about death doulas and new models of care at the end of life. We are continuing to build an evidence base through research with the death doula community and via consultation with the health services that interface with death doulas.

Defining the death doula

We’ve seen a similar concept in midwifery, where birth doulas have long been providing social, emotional and practical support to help women through the process of childbirth. This has been shown to have positive outcomes for mothers and their babies.

Like birth doulas, death doulas’ roles and functions are non-medical; these can include advocating, supporting (spiritually and sometimes physically), guiding, and providing emotional support to the person and their family, mainly in the home.

We undertook a systematic review of the literature to find available evidence about the death doula role. We found little formal academic literature describing the role, their training, or contribution to individuals, families and the health system.

But what we do know is that each death doula enacts the role differently. They might spend time with the dying person, offering emotional and spiritual support, and sometimes providing physical care. They might support the family carers in the work they are doing. Some death doulas are only present in the last days of life, offering “vigiling” – sitting with the dying person so they are not alone.

Some doulas offer after-death rituals such as helping families prepare the body or keeping the deceased at home.

A death doula can provide additional support to family members acting as caregivers at the end of life.

Some death doulas are paid by families who engage their services. Families have often found their chosen doula online or through word-of-mouth. Other death doulas work voluntarily, in a similar way to a hospice volunteer. But, because there are no formal structures or registers, we don’t know how many death doulas there are.

In Australia and elsewhere, palliative care nurses, social workers and those from the funeral industry work as death doulas. This seems to be a natural progression, but it’s a grey area: doulas are providing care, but are not registered or supervised.

There is little formal assessment to guide patient and family choice or to inform end-of-life care provided by professionals.

How can doula care be formalised?

Providing care in homes can be informal. It may be provided by families, friends, or community groups. Care can also be formally negotiated and provided by health services, aged care providers or private agencies.

It’s necessary to understand the implications of the death doula role. For example, they could become part of formal care arrangements such as home care packages or via private health insurance funding.

We also need to look at how these new roles are authorised to represent the dying person, as they are neither a family member nor a qualified health professional. It’s also important that they are appropriately trained and insured (if providing paid services).

There are personal, social and cost advantages in enabling care in the home for a dying person. For families, being able to support the person in a familiar environment can be a powerful motivator to engage a death doula to fill the gaps in care provision.

For the health system, care in the home is seen as positive. It can avoid unnecessary hospital use and help spread the costs of caring.

For the dying person who may prefer to die at home, it is a way of achieving this. Importantly, death doulas can improve the dying person’s ability to control their own care.

The death doula role may well incorporate some of the direct care provided by families and help them to navigate the complex needs and planning required at the end of life. If so, death doulas could represent an important opportunity to improve dying outcomes.

We need to ensure our community is informed, health service provision crosses both hospitals and homes, and that those providing care – regardless of setting – have skills and knowledge appropriate to their role.

Complete Article HERE!