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

[appalachiablue]

Last edited Mon Nov 18, 2019, 10:43 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.

[Sherman A1]

1. Thanks for posting

Very interesting.

[appalachiablue]

2. And the services doulas provide are so important.

More, Huff Post, https://www.huffpost.com/entry/end-of-life-doulas_n_591cbce2e4b03b485cae51c2

“c

[The_jackalope]

3. Death doula, psychopomp, deathwalker

The concept permeates many spiritual traditions, and is making its way into the secular world now. One of the stronger, more compassionate voices in the movement is the Canadian Stephen Jenkinson.

I had the enormous good fortune to be the Deathwalker for my soulmate as she died from aggressive ovarian cancer two years ago. It was the first time I had taken anyone up to and through the doorway. I had no training of any sort, but it turns out all you really need is the ability to care, to love and listen.

She firmly believed that death is just a change of address, and was eager to move to whatever her new home might be. Her anticipation and lack of fear made my task so much easier. As a result her death was a cooperative undertaking for us. She chose a medically assisted death, and so was able to transition without the trauma normally associated with cancer deaths.

The death doula movement speaks from the heart of what it means to be human, with its intense blend of communication, compassion and courage. I will carry the blessing bestowed by her death for the rest of my own life.

The day after she died, I wrote the following essay about the experience.

On the evening of September 6, 2017 our living room was its usual familiar, comfortable, cluttered mess. Outside the front window late afternoon sunshine slanted through maple leaves. An hour before, Kathy had eaten a small dinner - three exquisite grilled scallops and a crème brûlée from her favourite restaurant, whose owner had been astonished and thrilled to be asked to prepare a meal for such a special occasion.

After her final dinner Kathy decorated her favourite blue leather recliner with a pale yellow afghan she had crocheted forty years ago and an assortment of her beloved silk scarves. Around her neck she hung the amethyst pendant I bought for her birthday in 1976. It had become the symbol of our love, remaining close to her even during the 30 years we had been separated.

There was no fear to be found anywhere. Five months ago, when she received the diagnosis of Stage III ovarian cancer on her 65th birthday, she had told me with a smile that it was her “get out of jail free” card. For the past 20 years a host of nasty, unfixable ailments had turned her life into a morass of symptom-management misery. She wanted more than anything to leave, to be able to “go home.” She had refused any cancer treatment, and had spent the time since then preparing herself for this moment. Now her air was one of deep relief that the time was finally here, overlaid with calm curiosity and half-suppressed eagerness.

My mood was one of supportive, loving resolve. When Kathy and I had re-united as soul-mates in 2010 after being lost to each other for the previous three decades, we vowed to pack a 50-year marriage into whatever time might remain. I had promised myself that whatever Kathy needed I would do my best to give her. I was keeping that promise.

We said some heartful goodbyes, but they didn't have the same sense of urgency they had two weeks before. That was the night I sat with Kathy, holding space for her as she made two consecutive unsuccessful attempts at suicide. She had a bone-deep mistrust of bureaucratic institutions, especially medical ones, and was trying to keep her fate in her own hands. However, the following morning she made the decision to turn the task over to the professionals by requesting a procedure known as MAID - Medical Assistance In Dying - that had been available in Canada only for the last year. She knew what she wanted, and for once the system did not let her down.

At 6:00 Kathy settled herself into the recliner. In my mind's eye it became her seat in the back of a small ferryboat on the bank of the River Styx. I took some photographs of her.

At 6:30 Charon the ferryman arrived, in the person of a gentle Indian anesthesiologist. He asked Kathy if she was sure this was what she wanted, and she smiled as she said "Yes."

The nurse who was assisting put an intravenous line into the back of Kathy's left hand as the doctor began laying out large syringes of midazolam, propofol and rocuronium.

I sat facing Kathy. We kissed and held each other's hands. The room went utterly still. The doctor's voice emerged into the silence: "Are you certain that you want this to go ahead?" Once more Kathy said, "Yes, please."

We gazed deep into each other's eyes, touching each other’s souls and feeling the eternal bond that made us one. She smiled again, and her gaze seemed to turn toward more distant visions.

"I love you."
"I love you too."

Kathy's eyes sank gently closed. There was no other sign of what was happening. As the doctor pushed propofol into her vein, her breathing slowed. Before the third syringe was empty, it had ceased. After the doctor checked carefully for a pulse he turned to me.

"She's gone." I heard the nurse announce the time - 6:49. A remote silence roared in my ears.

There was some paperwork. As we waited for a call back from the coroner, I showed them some of Kathy's visionary digital art. They said their goodbyes and left.

I kissed her one last time. With some difficulty I picked up my camera again. I took the final photograph of my beloved. I sat with her until two men from the cremation service arrived. I declined their invitation to walk with the gurney out to their waiting vehicle. The door clacked shut behind them. I said a silent prayer:

GATE GATE PARAGATE PARASAMGATE BODHI SVAHA

In telling the story of her death I honour her courage, her resolve, her heart, her wholeness, her self-awareness, and her deep commitment to the flow of life.

At the same time I hope to unveil the moment of death a bit. In my own small way I am trying to remove a few of the barriers that have been placed between us and death by a culture that is inexplicably fearful of it.

So,

Go gentle into that good night.
Embrace, embrace the dying of the light.

Carpe aeternum

[appalachiablue]

4. Very moving, thanks for sharing this experience with a beloved one.

- Physician assisted death/medical aid in dying in the US is legal in 10 jurisdictions:

(Wiki) Physician-assisted death or "medical aid in dying" is legal in ten jurisdictions: California, Colorado, District of Columbia, Hawaii, Montana, Maine (starting January 1, 2020),[1] New Jersey,[2] Oregon, Vermont, and Washington.[3]

These laws (excluding Montana since there is no law) expressly state that "actions taken in accordance with [the Act] shall not, for any purpose, constitute suicide, assisted suicide, mercy killing or homicide, under the law". This distinguishes the legal act of “medical aid in dying” from the act of helping someone commit suicide, which is prohibited by statute in 42 states and prohibited by common law in an additional six states and the District of Columbia.[4] Opponents see no such distinction...

https://en.m.wikipedia.org/wiki/Assisted_suicide_in_the_United_States

[trof]

5. *wipes eyes*

whew