By Madelyn Beck
Chris Bruton said his dad got sick in 2017 and just never got better.
“He had fatigue and we didn’t know what it was,” he said.
By January 2018, they had an answer.
“He actually had stage four kidney cancer,” Bruton said. “He was basically given about two to four months to live.”
When Bruton was a kid, his dad travelled a lot, so he didn’t get to know his dad that well. But after Bruton’s mom died, his dad moved from North Carolina to live with Bruton in Colorado. Bruton was in his 40s, his dad was in his 70s.
A year later, his dad got sick. Once they got the diagnosis, a woman Bruton was seeing suggested a death doula.
“And of course, I’d never heard of it. It sounded a little bit, a little bit hocus pocus-y to me,” he said. “I thought, well, I don’t think my dad would be up for anything like that.”
But then his dad started to close himself off and isolate, so Bruton agreed to meet with Cindy Kaufman, an end-of-life doula who works out of Denver. And Bruton introduced her to his dad.
He remembers chatting before Kaufman asked his dad how he was doing – how he was really doing. In an uncomfortable silence, Bruton and his aunt left to give them space.
“And as I walked out, I heard sobbing from my father that I had never heard before,” he said. “This well of stress and fear, anxiety, sadness, it all just came out.”
Kaufman came by one or two times a week, and then drove down for the end. It only took about two months. Bruton said she even helped his dad’s dog through it.
“After my dad had passed, she said, ‘Hey, let’s get Matty up here on the bed and so she can see your dad.’ And I think that even helped the dog find closure and understand what was going on,” he said.
Even though he’d never heard of a death doula before, Bruton is now a convert.
“I had no idea how much work there was to do to help someone who’s going through the dying process until I saw what Cindy did. And yeah, changed our lives,” he said. “Changed our lives and changed my dad’s life at the very end of it.”
Death doulas are also called death midwives or end-of-life doulas, but whatever you call them, their numbers have blossomed in the last decade. There’s a few in every state, but Colorado is a hotspot in the Mountain West. Beyond being a doula, Cindy Kaufman leads the Colorado End-of-Life Collaborative.
“End-of-life doulas fill what we believe is a gap,” she said.
That gap is the space between hospices, which provide necessary medical care, and what she does – help someone with the actual process of dying.
Since the hospice industry started in the ’70s and ’80s, Kaufman said, it’s become more of a business with certain hours and staff caring for multiple clients. While they started as non-profits, the majority of hospices are now for-profit institutions.
“We don’t carry those kinds of case-loads, we work for (ourselves),” she said, comparing death doulas with hospice staff. “We don’t fall under insurance, we’re private pay.”
Kaufman said death doulas can bring ritual back into dying, and make it easier to say goodbye.
They can help plan legacy projects, say late-night prayers, figure out what kind of burial or cremation someone wants. For some, they just sit with people, right up to the end.
And death doulas are incredibly diverse, not only in what they offer but with their backgrounds. There’s no licensing requirement or mandatory training. Kaufman said some people use their own culture to inform how they practice as death doulas, and they don’t want more regulations.
“They want to be honored for the fact that they were trained within their own family and community to do what they do,” she said.
Still, several training centers have cropped up in recent years. Some are in places like Australia and the UK. And there’s one in New Jersey called the International End Of Life Doula Association, or INELDA.
Henry Fersko-Weiss is a death doula who created INELDA six years ago.
He said it’s good to take other cultures into consideration, but the profession needs standardization if they want to be reimbursed by Medicare or Medicaid. He said that could also improve quality of care – and help the fledgling profession evolve and gain trust.
“Anybody could call themself a doula without knowing anything, without having any training,” he said. “And I think that can do a disservice to the development of this field.”
Nancy L. Compton is an INELDA trainer based in Boise, Idaho. She’s also a certified hospice nurse assistant, palliative nurse assistant and death doula.
She’s proud death doulas can work outside normal constraints.
“Not everybody is born nor dies Monday through Friday, 8 to 5,” Compton said.
But she’s also proud of what her intimate knowledge of the dying process does for families.
“That’s where I am different and that’s where I pioneered this, especially in the Boise Valley,” she said.
Compton said a hospice paid her to practice there, and that’s unusual for a death doula. Medicare sanctions death doulas, but won’t reimburse for their care – yet. That would require a lot more standardization.
Deb Rawlings, at least, is fascinated by the diversity in this budding industry.
“It was amazing to find that there were so many differences in what the death doulas say that they do and what they offer,” she said.
Rawlings teaches palliative care at Flinders University in Australia. She’s one of the few people who’ve researched the occupation.
She found that many death doulas are former hospice workers or nurses. Some volunteer, others charge. Some help with a spiritual journey, others help with more physical tasks.
But even though they’re so different, death doulas have generally described their role to Rawlings like this: “We’ve got time. So I’ve got time to come in and sit with you. I might sit with the person who’s dying and let their family go and have a break. I might help and do the washing.”
In other words, they give time to those who are running out of it.
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