Death doulas provide support, comfort and a new option for the dying and their families

Posted on December 3, 2019

COLUMBUS, Ohio – When Jason Bradley-Krauss has a hard day, he pulls out a love letter his late husband, Chris Bradley, wrote for him before his death.

Bradley-Krauss treasures the letter and knows that it wouldn’t be possible without Donna Baker, a local end-of-life doula.

“There’s just so much comfort in that gift,” said Bradley-Krauss, 51.

Bradley, a well-known weatherman in Columbus, Ohio, died in December 2018 after an 18-month battle with leukemia.

Death doulas, as they are also known, help someone at the end of their life with dying, just like birth doulas help at the beginning of life with the birthing process.

“We journey with the person who’s dying and their family to help them navigate through the whole end-of-life process,” said Janie Rakow, president of the International End of Life Doula Association (INELDA) based in Jersey City, New Jersey.

A relatively new option for the dying and their families, death doulas began seeing a rise in popularity over the past few years after associations like INELDA began offering training. “It’s a brand-new movement,” Rakow said.

Death doulas are hired by patients or family members when a terminal diagnosis is given and stay with that person and their family through their death and beyond, Rakow said.

When people are nearing the end of their lives, a doula will visit and often sit vigil with them as they are dying. They also help patients with their will and other advanced directives.

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They help people do legacy projects such as quilts, art projects, scrapbooks or writing letters to leave behind for their relatives.

“It’s kind of an adjunct to hospice where we’re there for them to provide emotional, spiritual and physical support,” Rakow said.

Baker said she was just a close friend while she was at Bradley’s side. But that’s when she decided to change the course of her life.

″(Bradley) really encouraged me to make this transition and make this into my life’s work,” Baker said. She had been considering it but hadn’t yet decided to make it a career at the time.

Since becoming a doula, she has made sure a patient could bring her cat into her hospice room and sat with the woman while she contemplated what comes after death.

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Father's death led to 'reawakening'

She has also been a resource for inexpensive burial options, for how to negotiate with health care providers and for understanding end-of-life care options such as hospice and palliative care.

“Five years ago my dad died, and with my father’s death I had this reawakening of how important it is we get back to a place where we are at our best with dying,” Baker said. “Where we don’t rely on institutions, we rely on each other.”

She learned a lot while working with her dad, and helped with his advanced directives so he could have the peaceful death he wanted, Baker said.

Shortly afterward, she quit her job at an advertising agency. Baker went through a three-day training with INELDA and is working on becoming certified, a process that requires 36 hours of work as a doula. While certification is recommended, it is not required, as the industry is unregulated.

INELDA has been offering certification since 2016, and it has 30 certified doulas, Rakow said, adding that the group has sent out more than 700 certification packets.

Due to the unregulated industry, Rakow recommends people interview a doula before hiring them, just as they likely would a birth doula.

Death doulas don’t provide medical services.

Before a person becomes unable to speak and make decisions, Baker works with them to figure out every detail of what they would consider their ideal death, down to what they want to listen to at the end.

In March, Baker started her private practice, Columbus Community Deathcare, and began serving as a professional death doula. Before, she provided services free of charge.

'Well worth it'

John Schadek, 59, hired Baker a few months ago to help him and his siblings care for his 89-year-old mother, Kathleen, after she was diagnosed with Alzheimer’s and Parkinson’s diseases.

Schadek is the primary caregiver for his mom, who lives in his home with him. Baker has been a great resource for him, he said, and she’s also formed a strong bond with his mother.

Baker uses a sliding scale and charges $30 to $100 per hour, depending on the service. She also offers support to family members of the dying, such as explaining the signs of death, helping prepare them emotionally and discussing burial options.

Schadek said hiring Baker was “well worth it.”

“Most people don’t know what to expect” with a dying parent, he said. “It’s a valuable resource that almost anybody could use.”

Death is often a taboo topic, Rakow said. And having a death doula can help the patient and their grieving loved ones better get through the process.

Rakow said the response from hospices has been mixed. But some are already working with doulas, who say their services are different than hospice.

Deanna Cochran, an end-of-life doula and former hospice nurse, is chair of the National Hospice and Palliative Care Organization’s doula advisory council created in early 2018.

Though hospices are still learning about what death doulas do, Cochran said they’re open to using doulas.

Doulas often have more time to spend with patients than hospice does and aren’t bound by regulations when it comes to payment, such as Medicare. Some, for instance, have built time to do pro-bono work into their schedules, she said.

“There’s a gap in what hospice can offer ... (people) need emotional support, they need spiritual support, they need guidance to what the end looks like,” Baker added.

Bradley-Krauss said Baker anticipated his needs, bringing him coffee or offering to sit with Bradley when he needed to have some time alone.

“Donna helped me talk through things and talk about a lot of my fears, and I know she was amazing at talking to Chris and helping him arrive at a place of great peace,” he said. “I saw such benefit in having those important conversations. ... Because nothing was left unsaid, the healing process for me has been easier.”


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