‘Live well, die well’: Local death doulas provide end-of-life support for individuals and their families

This story first appeared in the December 2024 issue of Prestige, a special section dedicated to telling the stories of Iowans over the age of 55.

Angie Ketcham remembers the day she decided to help her husband die.

It was Oct. 25, 2023. Ketcham, of Muscatine, came home from work and found her husband Ray screaming and drenched in sweat. He was suffering from symptoms caused by posterior cortical atrophy, a rare disease similar to Alzheimer’s and Lewy body dementia, that causes the gradual and progressive degeneration of the outer layer of the brain in the back of the head. He was diagnosed with the disease in 2022.

“Ray was sitting on the edge of our bed, and he was screaming, and he had on a long t-shirt, and it was soaking wet,” Angie said. “He had been screaming for a while, and I finally got him to calm down. At that time, he said, ‘I can’t do this anymore. This is too much for me. I’m tired, you know? I just can’t go on like this.’”

Angie, a nurse with experience in hospice, began looking for end-of-life options for her husband. But, because of Ray’s rare diagnosis, Angie knew physician-assisted death wasn’t an option. She also wasn’t sure he would meet hospice’s criteria for palliative care. That’s when she came across VSED, or Voluntarily Stopping Eating and Drinking.

During VSED, a competent individual makes the decision to stop eating and drinking to advance their own death. The VSED process requires 24-hour care and is legal nationwide. However, Angie had difficulty finding palliative care to help him through that process; at the time, Ray did not meet the hospice criteria. Hospice did, however, recommend a death doula.

“I didn’t even know what a death doula was,” she said.

Death doulas provide any non-medical, end-of-life support for individuals and their families. Angie found Annie Brownberger and Mary McCall, certified community death doulas based in the Corridor, online.

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“Death doulas provide a much deeper level of support than hospice,” McCall said, like emotional, spiritual and educational support.

McCall specializes in dementia, family communication and conflict, and grief and bereavement support. Brownberger has extensive experience navigating complex systems and medical needs, from hospice and life insurance to appointments and postmortem care. Both have provided support during the VSED process for individuals and their families, including the Ketchams.

McCall and Brownberger helped communicate Ray’s wishes to family. They found a nurse to take care of Ray at night so Angie could rest. Once Ray qualified for hospice, they provided support during the intake process. They handled the logistics of donating Ray’s brain for medical research after his death.

“There’s really no way to express how much they really do,” Angie said. “Until you’re in the spot where you’re watching your person suffering and nobody really cares, and nobody is going to help you, and you have somebody that you don’t even know say, ‘Yeah, we’re going to help you.’ It was huge.”

Ray stopped eating and drinking on Jan. 3, 2024. He died Jan. 11, 2024, at the age of 61.

“Having (McCall and Brownberger) here was like having a life preserver in the middle of the ocean,” Angie said. “I had nothing when I called Annie. I didn’t have hospice. I didn’t have any doctors who would help me … I wasn’t going to let (Ray) sit here and suffer through this disease.”

‘Live well, die well’

Death doulas, end-of-life doulas, death midwives — however you choose to refer to them — are nothing new.

“This role has existed for centuries, over time, across cultures,” Brownberger said. “The term ‘death doula’ and making it a career … is new in modern culture.”

Brownberger works part-time as a community death doula and full time as the executive director of The Village Community, a nonprofit that provides services to adults with intellectual disabilities. Multiple experiences with death throughout her life led Brownberger to her work as a death doula.

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“In all of those experiences, I was really ill-equipped to deal with the situation at hand. There wasn’t really anyone around me who was comfortable having questions asked of them, let alone anyone that had any answers,” she said. “So I spent most of my life feeling like there was a gap between what I should know and understand and what I did (know about death).”

Brownberger received her death doula certification from Lifespan Doulas and is NEDA, or National End-of-Life Doula Alliance, proficient. As a certified death doula, she helps individuals and families explore their goals for “living and dying well,” identifies fears and concerns with living and dying from illness, and offers guidance for health care planning. She also provides respite to caregivers and assistance with postmortem care and logistics.

But not all death doulas are the same. Each has their own areas of expertise, and there are dozens of specialized training programs.

McCall is a full-time death doula specializing in dementia, family communication and conflict, and grief and bereavement. She holds bachelor’s and doctorate degrees in human development and aging, and is a Certified Values Coach, Certified Life Coach, and Certified Death Doula through INELDA, or the International End-of-Life Doula Association.

“I help people identify what’s important to them and how they can use their values to make informed decisions that are in alignment with those values,” McCall said.

McCall’s experience with death also shapes her work as a death doula, especially navigating complicated family dynamics during times of grief. She had 12 siblings and started losing them to cancer in her late 20s. She also lost her father to cancer and dementia.

“I realized based on my first brother’s death that it was really important to support people in what they wanted and what they chose to do and what their values were, regardless of how the people around them disagreed. I wanted to help people work through letting people go when they’re ready to go,” McCall said.

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Both McCall and Brownberger’s primary objective as death doulas is to help individuals “live and die well.” This is unique to everyone, but to live and die well, individuals need to figure out what’s important to them, what their resources are, and what will help them live in alignment with their values as best they can.

That starts with coming to terms with the fact that we’re all going to die someday. But we need to stop being afraid to talk about it, Brownberger said, and to let ourselves grieve and learn how to process that grief in a healthy way.

“When you can be open to (death) and soften to it and experience the beauty around it and the community that can be there, it really can change the way you think about dying … It sounds cliché, but it is not untrue to say it changes the way I live and the way that I look at my life on the regular,” Brownberger said. “You really look at what matters and what doesn’t.”

To find a network of community death doulas in the Corridor, visit communitydeathdoulas.org.