Death doulas transforming how we die in Canada

Death doulas transforming how we die in Canada

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WATCH: Doulas are trained to help families through childbirth, but now they are also being used to guide people through their final moments. Shirlee Engel looks at an emerging profession that aims to change the way Canadians handle dying.

Click here to watch the video: http://globalnews.ca/video/rd/703400515811/

OTTAWA — Michael Crane met his mother’s death doula at the drink table at a friend’s party.

He asked Barb Phillips what she did for a living and her response immediately drew him in. At the time, he was struggling with his mother’s terminal cancer diagnosis.

“I was very intrigued and very interested when she started talking about being a death coach and actually walking alongside the family who is experiencing a death or a pending loss,” said Crane.

A few months later, he was feeling overwhelmed with emotion and decided to reach out to Phillips for help.

“I’ll never forget the first discussion with her. I basically was crying the entire time,” he said. “It was the first time I had talked about my mother’s death with someone outside our family in that level of depth and detail.”

Phillips helped the family engage in conversations about death that Crane believes otherwise would not have happened. She talked to his mother openly about what was happening to her and how she was feeling. After his mother passed away, she helped the family plan the funeral and ensure they were fulfilling her wishes.

 Death doulas talk about what they do and why their services are needed.

Phillips said we live in a death-denying culture where even talking about dying is taboo. Many people don’t allow themselves to take the time to grieve properly.

“People’s grief is more engaged at the very beginning,” she said of her practice. “It’s seen as something viable and valuable rather than trying to shut it off.”

A growing field

Phillips is one of a growing number of death doulas in Canada trying to transform the way we view death and the dying process.

“It seems to be really reaching a tipping point,” said Marco Mascarin, co-director of the Institute of Traditional Medicine in Toronto.

The institute’s Contemplative End of Life Care program is now so popular, the school now offers annual training. Forty students enrolled this year — the largest group yet.

“I say it’s an atrophied skill. And we’re re-learning it as a culture,” Mascarin says.

The Institute uses the term ‘thanadoula’, from the Greek words ‘Thana’ meaning death, and doula, which means servant.

Life and death

Thanadoula Susan Dawson trained as a birth doula but decided to enroll in the program after hearing about death doulas on a radio show.

“I’ve walked the death path with several loved ones in my life and I just knew,” said Dawson. “I see the transition out of life as having the potential to be just as celebratory as the transition into this world.”

The program attracts a variety of professionals who work in palliative and end of life care — and even some people who are terminally ill. Many students have experience with a loved one dying and want to address the gaps in the system.

“I can’t imagine having gone through my dad’s death without taking the course,” said Yolanda Campbell, who just lost her father a month ago.

For Crane, having a thanadoula brought peace and a sense of closure and satisfaction.

“As a son, I was able to do everything possible for my mother. Those are the thoughts that I will take with me for the rest of my life.”

 

Doulas Who Cradle the Dying

Doulas Who Cradle the Dying

Usually associated with birth, they now help families make the journey to life’s end

By Bruce Horovitz Kaiser Health News May 23, 2017

Part of the Transforming Life as We Age Special Report

(This article appeared previously on Kaiser Health News.)

Credit: Courtesy of the Gutenstein family
Bob and Ellen Gutenstein celebrated Ellen’s birthday three months before her death.

As Ellen Gutenstein lay in her bed at home, dying from lung cancer that had metastasized in her brain, a heart-wrenching Mother’s Day card arrived from her granddaughter. Neither Ellen’s daughter — nor her husband — felt they could read it to her without breaking down.

Fortunately, a volunteer from the local hospice’s doula program was on hand to help the then-77-year-old resident of Ridgewood, N.J., comfortably die at home. She picked up the letter and read it with compassion.

“I’m not sure I could have done that,” said Lisa Silvershein, the daughter who helped arrange a more comfortable end-of-life experience for her mom in 2014. “The doula not only made my mom’s life easier — she made our lives easier, too.”

Doulas, an ancient Greek term that loosely means a woman helping another woman, have long comforted women during birthing. But the definition has broadened, and doula programs — a combination of male and female volunteers and paid certified staff — are increasingly helping elderly patients fulfill wishes to die at home rather than in hospitals or nursing homes.

Doulas Come Full Circle, From Birth to Death

End-of-life doula specialists are now in at least a half-dozen states, including New York, Colorado and Texas, said Henry Fersko-Weiss, executive director of the International End of Life Doula Association, which he co-founded in 2015. A social worker with hospice experience, he first came across the idea 15 years ago, when a birth doula told him that she was also offering comfort to the dying.

While most hospice workers focus on the physical needs of the dying, doulas offer emotional and spiritual support.

“I thought to myself: Oh my God, this is exactly what we should be doing at end of life,” said Fersko-Weiss, who has since authored a book, Caring for the Dying: The Doula Approach to a Meaningful Death.

In 2003, he set up what he says was the nation’s first end-of-life doula company to train people to care for the dying. Fersko-Weiss helped create the doula program at Valley Home Care in Paramus, N.J., which assisted the Gutenstein family.

The doula association trains and certifies professional end-of-life doulas. Certification requires 22 hours of classes that cost about $600 for those who hope to make a career of it. Volunteer doulas complete 18 hours of training, with costs typically paid by a sponsoring hospital or hospice.

A Proactive Step for Families

“Nobody should die alone,” said Ellen Rand, a longtime hospice volunteer, blogger and health journalist. Finding a doula is a proactive step for families facing terminal illnesses. “I’ve never come across anyone who has done too much end-of-life planning — it’s usually just the opposite,” she said.

The end-of-life doula movement is supported by the National Hospice and Palliative Care Organization. “As long as they go through a training process, I think they can complement the work of the hospice team really well,” said John Mastrojohn III, the organization’s executive vice president. “The more people there to help a patient and family, the better.”

While most hospice workers focus on the physical needs of the dying, doulas offer emotional and spiritual support. They often help the dying reflect on life’s meaning. They conduct comforting rituals, including light touch and holding hands. They will read to patients or play favorite music. Doulas also explain signs and symptoms of dying to the family and help them know what’s coming next.

“We work as a team with doulas,” says Bonnie Schneider, manager of social services at Valley Home Care, part of the Valley Health System, which oversaw Gutenstein’s care. Its volunteer doulas must be trained, go through criminal background checks and health screenings and offer three written references.

Planning for a Vigil

Shortly after Gutenstein, then a Valley Hospice volunteer, was diagnosed with incurable cancer, the hospice connected her with Fersko-Weiss.

“To be honest, we weren’t sure if an end-of-life doula would work for us,” said Silvershein. “But we finally decided, what the heck, let’s give it a shot.”

It turned out to be just what the family needed. In her final days, approximately eight doula volunteers assisted Gutenstein and her family, with one always by her side.

“They ended up making our lives easier — and hers,” said Gutenstein’s husband, Bob. “All along, the doulas helped us to know what to expect next — which is something most of us didn’t know.”

This included planning for Gutenstein’s final days, which the doula association refers to as “the vigil.” The doulas helped create a “vigil plan,” which detailed who should be in the room at her death and the sounds and smells she wanted around her.

Early on, Gutenstein’s volunteer doulas recommended that the family assemble a memory book. “My mom loved the idea,” recalled Silvershein. The book featured photos, letters, writings and illustrations. The doulas frequently read the memory book to Ellen because they saw how happy it made her.

When family needed time away from Ellen’s bedside, the doulas frequently talked, read or sang to her. One doula sang Ellen’s favorite song: Over the Rainbow.

Giving Emotional and Spiritual Care

There are things end-of-life doulas can’t do — at least in most hospital or hospice settings. Because they aren’t nurses, they aren’t typically permitted to physically care for patients — whether it’s changing bandages or giving them medications. But in private homes, doulas and families agree on acceptable tasks, said Fersko-Weiss.

They can do light massage, or they might brush teeth and help a primary caregiver change a patient’s clothes and bedding, said Fersko-Weiss. Doulas also can help caregivers reposition someone in bed or apply cold compresses if fever spikes.

Unlike home health aides, end-of-life doulas are trained in emotional and spiritual care — not just physical care, said Fersko-Weiss.

Perhaps the most important thing doulas did for the Gutensteins was to constantly make everyone in the room — particularly Ellen — more comfortable.  “It was the doula who kept her positive,” said Bob Gutenstein.

Doulas give family members time to sleep, which can improve their decision-making. “The last few days, the doulas were there around the clock, which was really helpful for me,” said Silvershein.

Both Volunteers and Paid Professionals

The best way to find a volunteer end-of-life doula is via a patient’s local hospital or hospice, said Fersko-Weiss. But volunteers typically have limited availability.

To find paid doulas, his association intends to post a list on its website with contact information for member doulas across the country. Until then, Fersko-Weiss suggested directly contacting his group’s website at inelda.org.

Trained and certified non-volunteer doulas cost $40 to $100 per hour, Fersko-Weiss said. Some charge flat rates for initial visits and during a dying patient’s final days, when round-the-clock vigilance is often needed. Costs for that end-stage service typically range from $1,200 to $4,000, he said.

At the moment, medical insurance does not cover paid doula services, said Fersko-Weiss. But just as some insurance companies are starting to offer partial reimbursements for birth doulas, he predicts that families may eventually receive some reimbursements for end-of-life doulas.

Gutenstein’s doulas were volunteers, and the family later showed its thanks by giving a substantial donation to the hospital’s doula unit.

Knowing what they know now, said Bob Gutenstein, they would have happily paid for the services if volunteers were not available. It was, after all, the doulas who recognized and alerted both Lisa and Bob that Ellen’s death was imminent.

“We wouldn’t have had this confirmation without them,” Silvershein said.

It gave Bob — who had been dozing at his wife’s bedside — his final moments with his wife, which he might have otherwise missed. After the doula alerted him to Ellen’s last breaths, “I reached over, and she gave me a squeeze,” said Bob, “and then, she was gone.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

Jon Underwood, Founder of Death Café Movement, Dies at 44

Jon Underwood, Founder of Death Café Movement, Dies at 44

“I know I will cope,” Jon Underwood once said of death. Credit Dean Brannagan, via Art of Dying Magazine.

LONDON — Jon Underwood, who as the founder of the Death Cafe here encouraged people around the world to discuss, over tea and cake, life, the finality of life and why we fear it, died on June 27 in London. He was 44.

His wife, Donna Molloy, said that the cause was a brain hemorrhage from acute promyelocytic leukemia. His death was sudden, she said; his leukemia had not been diagnosed.

Mr. Underwood was working as a strategy and business development director for the council of Tower Hamlets, a London borough, when he came across an article about the so-called cafe mortels — which were events rather than places — started in 2004 by Bernard Crettaz, a Swiss sociologist.

As a Buddhist, Mr. Underwood had already contemplated the philosophical questions of dying. Although everyone experiences it, he felt, the topic seemed so taboo that no one wanted to discuss it.

Death has “a magical sort of quality about it,” he said in a speech in 2014.

He quit his job and decided to bring the movement to London. “He said that no job would be more meaningful than this,” his wife said.

From the basement of his house in Hackney, an artsy borough in London’s East End, Mr. Underwood perpetuated a movement that spread to more than a dozen countries with more than 1,000 gatherings.

He came to learn that the meetings, which began in 2011, were more about laughter than tears. People often talked less about how to die than how to live.

These were not grief support groups or end-of-life planning sessions, but rather casual forums for people who wanted to bat around philosophical thoughts. What is death like? Why do we fear it? How do our views of death inform the way we live?

“You know you have a certain time left, and then the question is, What is important for me to do in that time?” Mr. Underwood said in a BBC interview in 2014. “That’s different for everyone, so talking about death, for me at least, is the ultimate prioritization exercise.”

Each meeting was led by a volunteer facilitator (one of the cafe’s founding principles was “Never do it for cash”). The participants included people of all ages, working and retired, who were drawn by Facebook announcements, storefront fliers, local calendar listings or word of mouth. Women usually outnumbered men.

The purpose, Mr. Underwood said, was not to influence attendees or lead them to any sort of conclusion or course of action.

Cake and tea, however, was a must.

“Some people have a fear that by talking about death, it will attract death and make it more likely to happen,” he said. “Eating and drinking are conscious acts of nurturing the body. They help mitigate the fear.”

Mr. Underwood, said Rosie Inman-Cook, one of the directors of the Natural Death Center, a nonprofit funeral counseling service, “was so aware of mortality that he lived every day to the fullest.”

Jonathan Underwood was born on Oct. 28, 1972, in Chester, England, to Mike Underwood, an accountant, and Sue Barsky Reid, a psychotherapist. He attended Queen’s Park High School in Chester, and studied politics, philosophy and economics at the University of Oxford, where he met his wife, whom he married in 2006. In addition to her, he is survived by a daughter, Gina; a son, Frank; his parents; a brother, Matt; and a sister, Jools.

Ms. Molloy said she recently found an interview in which Mr. Underwood was asked about his own death: Did he fear it?

It’s not “that I’m not scared of dying — I am!” he said. “But doing this work has given me confidence that whatever happens I will respond with openness and resilience. I know I will cope. That’s really useful!”

Correction: July 14, 2017

An obituary on Wednesday about Jon Underwood, the founder of the Death Cafe movement, misstated the profession of Sue Barsky Reid, his mother. She is a psychotherapist, not a psychiatrist.