End- of- Life 'Doulas,' Helping Professionals Who Guide the Dying

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Last edited Mon Nov 18, 2019, 11:43 AM - Edit history (2)

'End-of-life doulas': the professionals who guide the dying. Doulas are tasked with maintaining a sense of calm for the dying and those around them, and opening the conversation about death and loss, topics that can often be taboo. The Guardian, Nov. 6, 2019. Excerpts:

In October of 2016, Gregory Gelhorn ran the Twin Cities Marathon. Seven months later, he was diagnosed with ALS, a progressive neurodegenerative disease that causes nerve cells to break down, resulting in muscle weakness and atrophy. The average life expectancy of an ALS patient, once diagnosed, ranges from about two to five years. The cause of ALS is not fully understood, and no cure is known. Gelhorn was in his mid-40s. “It was a shock,” said Kathy Fessler, Gelhorn’s sister. “He was always the one who took the best care of himself.”..The disease progressed rapidly; soon, he was using a wheelchair and relied on a BiPAP machine to breathe. Doctors estimated he only had a few months left. Gelhorn and his family – his two teenage children, wife, parents, and siblings – began to grieve.

In the midst of it all, Fessler happened to see an article in the Star Tribune about Christy Marek, a certified end-of-life doula who lived only a few miles away. Fessler contacted Marek, who soon took on Gelhorn as a patient.

A doula, typically, is a professional who helps mothers during pregnancy and childbirth. Unlike midwives, doulas do not serve in a medical capacity; rather, their primary role is to provide emotional, physical and psychological support.
The practice originated in the natural childbirth movement in the US in the 1970s, alongside the Lamaze method and the popularity of alternatives to hospital birth, like water birth and home birth. That same generation of Americans who were having children in the 70s are now approaching their twilight years, and the practice of serving as a doula has expanded in scope. End-of-life doulas use the same concept as birth doulas: they provide support for the dying.

“On all sorts of levels, I think the Baby Boomers, that generation has just been here to shake things up,” said Marek. “The natural birthing movement, they did that. And now it’s the same thing. They’re saying, no, I don’t want the death my parents had. We are rich in possibility, why can’t I make this whatever I want it to be?”
End-of-life doulas are sometimes called death doulas, though many have reservations about the term. “To me, end-of-life is a process,” said Marek. “The work I do with people isn’t just about that one point in time when somebody dies.”

Although doulas are not required to have medical training, many come from the healthcare field. Shelby Kirillin, an end-of-life doula based in Richmond, Virginia, has also been a neurointensive trauma nurse for over 20 years. It was her experiences in the neuro-ICU that led her towards becoming a doula. Many of the deaths she had seen there, she explained, struck her as cold, sterile and lonely..“The doulas are there to calm everyone down. They work with the dying and their families to educate, to explain what’s happening. That what they’re seeing is part of the dying process.” Part of what doulas do is open the conversation about death and loss, topics that can often be taboo or deeply uncomfortable for the dying or their family..

Doulas often also perform legacy work, the practice of guiding the dying to create tangible artifacts to leave behind for their loved ones. Sometimes, it’s a photo album, a collection of recipes, or a video archive. One of Rakow’s patients wrote a series of letters to her pregnant daughter’s unborn child, expressing her hopes and wishes for a granddaughter she knew she would never meet.

As death approaches, doulas are tasked with maintaining a sense of calm for the dying and those around them...

More, https://www.theguardian.com/lifeandstyle/2019/nov/06/end-of-life-doulas-the-professionals-who-help-you-die

~ "Doula” derives from the Greek word for a female servant, but has been re-appropriated in recent decades by trained individuals of all genders who offer support and comfort to people during pregnancy and, now, to those who are dying.