Tag: Doula

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She watched her mother die.

It inspired her most hopeful novel yet

By Stuart Miller

In the quietly simmering drama of Karolina Waclawiak’s new novel “Life Events,” Evelyn has lost her job, her marriage is flatlining, and she frequently frets about death, especially the eventual passing of her parents. Only when this Silver Lake drifter trains to become a death doula — to have the uncomfortable conversations that help the terminally ill come to terms with the life they lived — does she begin to shift from dreading the future to living in the present.

Evelyn is in a near constant state of “pre-grieving,” or what others call “anticipatory grief,” Waclawiak said during a phone interview last spring. “But we have no control over grief. That’s not how it works at all.”

The author of two previous novels began writing “Life Events” six years ago. “It’s unfortunately very timely,” says Waclawiak. “We’re all in this collective grief now. Our loved ones are dying alone, and I can’t think of anything worse. We’re all going to be collectively traumatized, and that’s something we’re going to have to deal with.”

Waclawiak’s initial inspiration was an episode of the podcast Criminal about an “exit guide,” a companion for terminally ill people ending their lives. Fascinated by new approaches to end-of-life issues, she watched videos of people working in the death-with-dignity movement; soon, she took a death doula course herself.

While her research explored the broader societal changes behind the movement, the novel’s themes are intimately personal and somewhat autobiographical. Waclawiak helped care for her grandfather when he was dying 13 years ago. Her mother, who was sick off and on since Waclawiak was 12, was diagnosed with cancer in 2015, soon after Waclawiak started writing “Life Events.” She died last September.

“Obviously this was a big part of why I wrote this,” she says, adding that she writes to understand her pain. “I start with a larger question that I’m trying to face, not necessarily answer.”

In her first novel, “How To Get Into the Twin Palms,” also set in L.A. and featuring a Polish immigrant who passes herself off as Russian, the big question was, “Who are you if you take away your ethnic identity?” Her follow-up, “The Invaders,” grappled with the “limitations and stresses” of living among people of a higher socioeconomic class than you are.

Those questions too arose from Waclawiak’s life. Her parents fled Communist Poland when she was two, eventually setting in suburban Connecticut. “I’m extremely Americanized, but I always felt like an outsider,” says Waclawiak, who studied screenwriting at USC and then worked as an assistant on “The Simpsons.” After getting an MFA at Columbia University, she began writing screenplays in New York — the well-received “AWOL” and a second film that was in preproduction when the pandemic hit. Now she’s back in the city where “Life Events” is set. (“Set” is an understatement: Each of her books is suffused with a deep sense of place, owing to Waclawiak’s road trips through the regions she’s writing about.)

Waclawiak believes her background has better prepared her for facing death than most Americans. On return trips to Poland, her family would join others who spend Saturdays at the cemetery, visiting dead relatives and cleaning their gravestones. “There’s a sense of ritual there,” says Waclawiak, “while Americans approach death with a sense of fear and denial.”

Despite its morbid subject matter, “Life Events” is more optimistic than her previous work, in which the protagonists sometimes seemed hellbent on self-sabotage or even self-destruction. In contrast, Evelyn’s work with her dying clients helps her reassess everything, from her marriage to her long-term future, with newfound clarity.

“I felt a book about death was going to be tough to read, and I was thinking about the reader’s experience,’” Waclawiak says. “I really wanted Evelyn to use her proximity to death to be a catalyst to push herself out of this stagnation and to feel a sense of hope, because you have to. This life is so hard.”

Struggling to give Evelyn more control over her messy life, Waclawiak wrote an entire first draft in the third person, then threw almost all of it away. “Evelyn had to have a sense of agency,” she says. “That awareness that you have choices is a really huge shift in the storytelling.”

Call it a midlife awakening: Since writing her last novel, Waclawiak turned 40 and watched her mother get sicker. “You can’t help but take a microscope to the way you are living,” she says. Her mother, approaching her life’s end, pushed Waclawiak to think about her own future — about “seeing what I can do differently now and how I can change my perspective.”

What colleagues notice most about Waclawiak’s work is that fine balance between fatalism and optimism. She is not a “cheerful writer, but she’s not reflexively cynical,” says Ben Smith, the New York Times media columnist and former editor in chief of Buzzfeed, where Waclawiak works as an editor. “She captures the desperation Americans feel in leading superficially ordinary lives.”

Emily Bell, who edited “Life Events” at Farrar, Straus and Giroux, praises the author’s “ability to balance an understated tone with high emotional stakes” as she explores “what it means if you don’t fulfill the expectations of society.”

As for Waclawiak’s expectations, she has always held a day job while writing. “I never had illusions that my creative work would pay the bills,” she says, “and that gives me the freedom to write weird stuff.”

She knows some readers “have an issue with complicated women who don’t always make the best choices for themselves,” but she refuses to tidy up her fiction. “There’s an expectation of how women should behave; they shouldn’t be messy or be complicated in a way that seems vulnerable or gross. But there are countless male narrators in fiction and all over television who are highly self-destructive.”

Waclawiak became so frustrated by aspersions on her “unlikable female narrators” that she designed a course at Columbia around such characters. “Let me put a woman up against the wall and see how she squirms out of whatever situation I put her in, not in a way that feels exploitative,” she says. “It’s about realizing there’s something to learn in the suffering and the pain.”

In “Life Events,” it’s about Evelyn learning not just that she has choices but that she has the chance to create new ones — a wisdom that emerges, ironically, from coping with the one thing no one can opt out of. “When the people you love are dying, it changes you, and you really start to question what you thought was important,” Waclawiak says. “I wanted the reader to think about how consciously they were living their own lives.”

Complete Article ↪HERE↩!

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A Death Doula’s Guide To Grieving In The Pandemic

By Molly Longman

Amy Wright Glenn’s outgoing voicemail message reminds me of a guided meditation app. “Before you leave your message, inhale [long pause] and exhale [another pause]… Thank you so much,” she says in a soothing tone.

There’s a reason she’s so intentional about what callers hear when she can’t answer her phone. Many of the people trying to get in touch with Glenn are in crisis. As an end-of-life doula, she talks to people who are close to death, or who have loved ones who have recently passed away.

Not surprisingly, more and more people have been reaching out to the Florida resident during the coronavirus pandemic, which has taken 294,025 lives worldwide, more than 80,000 of which have occurred in the U.S.

Most people associate doulas with childbirth. Birth doulas are trained to provide emotional and physical support to a parent-to-be during labor. (They don’t deliver babies; that’s a midwife.) But the term “doula” can be used to describe someone who acts as an intermediary through any stage of life. There are sleep doulas, postpartum doulas, antepartum doulas. And, of course, there are death doulas.

Before coronavirus, end-of-life doulas were tasked with carrying out the wishes of people who knew they’d be passing on. If someone wanted a specific song playing as they died, or a certain person at their bedside, the doula would help arrange it. They might also work with the deceased’s family as they planned the funeral, says Henry Fersko-Weiss, the cofounder of the International End of Life Doula Association.

But during the pandemic, end-of-life doulas can’t do their jobs in the same way. Due to social distancing measures, they’re not allowed in hospitals, hospices, and senior living facilities. It may be difficult to provide their services virtually. Some sick people only have limited “phone time,” and they’re using that to call family members, not doulas, Fersko-Weiss says. Funeral services are being put on hold, or are heavily restricted.

Still, people are finding ways to reach out. Often, the people seeking support from end-of-life doulas right now are in immense pain. “The most difficult consultations I’ve had recently have to do with suicide, and the sorrow of those who’ve had family members or friends die by suicide,” Glenn says. “For some who already had mental health struggles, this pandemic was a tipping point… I‘ve cried about that.”

The Unique Pain Of Grieving During COVID-19

One of the reasons this pandemic has been so devastating is that people are dying alone. In Japan, they refer to this as “kodokushi,” which translates to “lonely death.” Many patients in hospitals, hospices, nursing homes, and other healthcare facilities are not being allowed visitors because COVID-19 is so contagious. Their last conversations with their loved ones may take place over FaceTime.

Bridging that distance is not easy, though end-of-life doulas are trying their best to help. Fersko-Weiss says that many doulas are encouraging their clients to write letters to family members. People who are close to death have a unique perspective, which makes the wisdom they impart especially impactful, he says. When possible, Glenn suggests terminally ill patients ask their doctors about going home, where they can be surrounded by loved ones as they pass. “Being with someone as they die is very powerful,” she says. “It’s one of those life-changing memories.”

The experience of grieving alongside so many others can pose a challenge as well. “I don’t think it helps people to know they’re not alone,” Fersko-Weiss says. “It may make you feel better, very briefly, to know there are other people who might be suffering more than you are. But your grief is your grief, and you can’t escape it. And you may feel it more deeply because of everything else we’re losing — on top of the death of a loved one, maybe you lost your job and can’t go back to work, and you also feel like you can’t ever get back to the way things were.”

On some level, that’s often true. “For any grief, whether it’s related to COVID or heart disease or cancer, we never go back to who we were before,” Glenn says. “The experience can deepen us; we can get through it and grow. But the fact that it will change us is irrevocable.”

How to grieve in a pandemic

When asked whether she has any suggestions for people who have lost loved ones recently, Glenn offers this advice: lean in. Open yourself fully to the pain of mourning.

“Grief doesn’t need to be fixed,” she says. Glenn discourages the people she counsels from thinking of grief as an illness that needs to be cured. Instead, it’s more like a scar: It will change and fade, but it will likely be with you forever. The goal is not to erase it, but to grow accustomed to it and find ways to live with it. “Grief is woven into our world,” she says. “The work of grief is to mourn, to express, to share our stories, feelings, and find our way to our own meaning of what love, life, and loss are.”

Kinship is essential, Glenn adds. She says during the initial mourning period, people need to express their internal sense of loss.

But funerals, traditionally a time that friends and families could gather to grieve together, are being canceled and postponed due to social distancing restrictions. This can compound the burden of grief.

“There have been four deaths in my family where we never had a funeral,” says Caroline Caruso, who first learned about death doulas from a friend. She was inspired by her experiences during the pandemic to train as one herself. “The ritual of the funeral is getting robbed from the family, and it’s devastating to the collective,” she notes.

Right now, then, people must be more intentional about finding companionship. They can call or video-chat friends and family. Or get creative: “You could hold a vigil every day at 2 p.m. Use the time to sit in meditation or prayer or song, and ask friends and family to do the same — even if you’re not in the same physical space,” Glenn suggests. “It’s about knowing that your grief is being shared.” Fersko-Weiss also suggests working with a doula, a therapist, or a grief counselor virtually.

Your conversations with friends and loved ones can revolve around your grief and the departed, but they don’t have to. Reconnect to things that have traditionally made you feel good, whether that’s cooking, working out, or watching a funny movie with your best friends on Netflix Party.

You’ll have good and bad days. Over time, those painful, confusing, overwhelming early stages of grief will pass.

“Yes, my work involves holding space for sorrow, but it also involves holding space for hope and courage and resilience,” Glenn says. “When I listen to someone describe their mourning, it isn’t only sorrow I’m hearing about. It’s love. It’s an incredible honor to listen to someone express their love. And express their stories and hopes and fears. Grief is the window into the human soul.”

She adds: “Like birth and death, grief and love can’t exist without each other.”

Complete Article ↪HERE↩!

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Directives that “SPEAK!” A NEW Paradigm, Platform & Profit for Doulas

CALLING ALL EOL DOULAS and ACP FACILITATORS

WEBINAR: Directives that “SPEAK!” A NEW Paradigm, Platform & Profit for Doulas

APRIL 14th at 7:00 PM EDT / 4:00 PM PDT.

Register ↪HERE↩

This is a GAME CHANGER.
Please join us for a FREE WEBINAR to learn about participating in our Pilot Program for a NEW Advanced Care Planning tool, which is like nothing you have ever seen.

This INNOVATIVE, TELE-HEALTH solution dramatically improves patient safety and allows you to get PAID from the very first client. It will challenge the way you think about healthcare directives and have you questioning whether you or your clients are truly prepared with conventional documentation.

You will meet our ER Physician partner who has developed this revolutionary ACP model.
The exciting part is this approach may be COVERED BY INSURANCE and IS covered through MEDICAL/HEALTH SAVINGS ACCOUNTS.

DOULA TRAINERS WELCOME:
If you are interested in sharing this new approach with your tribe, we are preparing an affiliate program. Come to the webinar to learn more.

There will be a replay if you cannot attend live, BUT you must register to get the replay.

Hope to see you there!

AGAIN, Register ↪HERE↩

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The woman whose job it is to prepare people to die

She arranges everything, from finding long lost families to organising organ donation

by Abbie Wightwick

 

She’s only 26 but Claire Wretham is employed by a Welsh hospice to help people face death.

She is the youngest person in any of Marie Curie’s nine hospices nationwide in the role.

Watching her own grandmother have  “a beautiful death” inspired her to help others do the same.

“We all deserve a good death that celebrates life. I am helping people feel at peace,” she said.

As full time spiritual care co-ordinator at Marie Curie Hospice, Cardiff and the Vale , Claire answers any questions patients and their families have about life’s greatest mystery.

Marie Curie spiritual care coordinator Claire Wretham with her grandparents Maura and John Brosnan. Maura’s death in 2016 inspired Claire to take up her post.

“My grandmother died at home, a really beautiful death with all her family around her. We were able to facilitate for her the perfect death.

Penarth with everything from tracing lost loved ones to special religious or cultural requests, officiates at funerals and goes to local mosques,synagogues and church groups to talk about death and dying.

In an increasingly secular and diverse society her role at Marie Curie has replaced the traditional one of chaplain, although Claire still uses that term when first meeting patients.

“I introduce myself as chaplain because it really is a modern interpretation of that,” she explained.

“My age is mostly irrelevant. People often comment on the fact I am young but I don’t think it hinders my role.

“People my age group see the world differently and approach things in a different way.

“Part of my role is asking people “what makes you you, how would you describe yourself and how do you find peace?

“As younger people we often have lots of spaces and experiences to express ourselves, but some older people don’t feel the same freedom to express themselves, so I ask “who are you, what makes you you and what makes you comfortable and at peace?.”

A practising Christian, Claire was appointed to the job two years ago and is an “allied health professional”, not a medic, although she knows and can explain what may happen during dying and immediately after.

Her role as spiritual adviser was created in response to research that Marie Curie did in 2015 investigating how to improve access to palliative care for people with dementia, learning disabilities and people with different or no religious beliefs.

Sarah Lloyd-Davies, hospice manager at Marie Curie Hospice, Cardiff and the Vale, explained: Hospice care and chaplaincy services have long been rooted in the Christian tradition, as both developed at a time when Christianity was the majority religion in the UK.

“As the country has grown more diverse there has also been a trend in growing numbers of people identifying as nonreligious.

“The hiring of a spiritual care coordinator to replace the traditional chaplain role at the Marie Curie Hospice Cardiff and Vale reflects the feedback from our local community, which recognises that one person and one approach cannot meet everyone’s spiritual needs.

“In order to make sure our services are truly inclusive and person-centred, we need to focus on connecting with belief-based communities and exploring new ways of providing spiritual care so we can ensure people feel supported in the best way for them at the end of their life.

Whatever background people come from death and dying are still taboo subjects which Claire must help them face.

“A lot of my job is myth busting and explaining to people how it works at the hospice and what they can expect as they come to the end of their life,” the 26 year-old said.

“Questions I would normally ask are whether they have any spiritual or religious needs and whether they have a faith or anything that’s a source of comfort.

“If they are religious I will discuss that with them – for instance if they are Catholic and want the last rites I liaise with their priest, if they are Muslim and want their bed facing Mecca and halal meals my job is to arrange that and liaise with nursing staff about it.”

There is “no formula or prescription” for talking about death so Claire begins with a few questions.

“It’s about asking questions to get people to explore death or go away and think about it.

“The sort of questions I’ll ask are things like – have you got any unfinished business or anything you want to tie up? That can be relationships, writing a will, funeral planning, making amends with estranged family members , and how we can help with that, if we can.”

When patients tell her they are scared of dying she tries to remove some of the mystery around it to reassure.

“If someone is scared of dying a big part of it, from my point of view, is explaining what will happen when they die.

“There are lots of misconceptions about pain relief. They want to know what it will feel like. I explain that they will probably just fall asleep more.

“I explore with them what they think that will be like. There is nothing you can say really, ultimately it’s something people form their own ideas about.

“I may also ask people what they want their legacy to be. Some people think there is nothing after you are dead so I’d ask them how they want to be remembered.”

But she doesn’t push it if people don’t want to talk.

“We live in a culture where it’s normal to talk about things but the idea of a chaplaincy and spiritual support is so alien to some people that they say no, they don’t want to talk to me.”

As she doesn’t have all the answers Claire tries to keep things practical when explaining what happens after death in a hospice.

“I know what a dead body looks like, where you go after death and what the crematorium looks like.

“My main technique is to remove any confusion. I do ask people if they are frightened and how I can help them not feel afraid.

“Most of the time people are worried about “what’s happening next and what about the pain?”

“I think death is so difficult to talk about because we don’t see death often. The majority of deaths happen in hospital. People don’t know what death looks like.

“For us in a hospice a huge part of our role is pulling the curtain on that. Lots of people come in asking really big questions and having misconceptions.”

These include controversy and suspicion surrounding syringe drives to administer pain relief and the mistaken beliefs about how they are used.

“People are horrified by the syringe driver. It’s in a locked box and nurses replenish pain killers. It is controlled pain relief. Some people think it is a death sentence, but it’s not. Sometimes people have a syringe driver for pain relief and then have it removed.”

“On the other hand some people say “can I have the drugs now?”. That’s not legal and not what hospices are about.”

“When we talk to people here about donation it’s usually only corneas because they can’t donate anything else. Some people say “you can take anything but not my eyes, but I have watched eyeball removal and it is really amazing because one cornea can be used to help eight people.”

It is Claire’s job to arrange any donations. She recalled one case when she arranged for a motorbike to collect the brain of a patient with motor neurone disease who had requested it be donated to medical science – something that had to be arranged within 72 hours.

“I spent all day organising brain removal and that afternoon someone came down from London on a motorbike and took it back for donation to medical science.”

Although her job does involve these practical matters it is also a matter of listening to people at what can be the hardest time of their lives.

“My job is varied Once a man came in and said his father had died here 28 years ago. He said he had never visited Wales and now lives in Canada but had flown into Cardiff to see where his father died.

“I showed him around the hospice and talked to him about his grief and about Penarth. He was very tearful, he had flown all the way from Canada to see where his dad died, but he was able to resolve his grief.”

Surrounded by grief and death on a daily basis Claire says it is not morbid but a privilege to help people.

“Death happens to everyone. It’s coming to all of us. We should look to normalise it.”

Complete Article ↪HERE↩!

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As a Muslim Mariam lives the ‘five before five’

— and finds meaning and balance as a death doula

Mariam’s serious car accident led her to engage with Muslim attitudes to death.

By Alice Moldovan

“I collided head on with a truck, the car caught on fire. It was a huge emergency operation,” says Mariam Ardati.

It was one of those car accidents “you think nobody could have survived.”

When she crawled out of the wreckage of her car, Mariam was amazed to see that she didn’t have a single scratch on her.

As a body builder, Mariam had considered herself invincible at the time — at the peak of her fitness.

The close brush with death turned her thoughts to what would have happened to her body under Islamic tradition if she had in fact, died.

“I walked away thinking, ‘where would I have been buried? What would have happened to all my things?'”

After recovering from the trauma of the accident, Mariam says she walked into a funeral parlour and said, “teach me, show me what happens when someone dies”.

The experience prompted a spiritual journey to reconnect with the Sunni Muslim faith she had grown up with.

“I was largely self-centred up until that accident happened,” she told RN’s Soul Search, “and it helped me find purpose and meaning.”

For the last 15 years she has helped other people in the Muslim community through the transition from life into death — as a doula.

Mariam supports the dying and their families in the lead up to death, then leads the ritual care for the body of the deceased.

Anyone can take part in death care

Mariam says women have always performed the final rites for other women.

She wants people to know that there is a range of jobs that family members can do to assist after their loved one has passed away.

Supporting the head, washing the body and brushing the hair are all meaningful ways to care for the deceased.

Mariam describes how she bathes a body an odd number of times, starting with three.

“The first wash is done with soapy water. The second is with clean fresh water. And the third is water that’s poured over the body that’s been infused with camphor.”

Then family members will wrap their loved one in a death shroud that has been perfumed with incense.

“This is afforded to every Muslim that passes away,” she says.

Mariam recalls a woman she worked with who didn’t think she could enter the room where her mother’s body was undergoing the ritual washing.

“She stood at the door of the mortuary and said, ‘I don’t think I can do this, this is just too much for me’.”

Mariam reassured her that she could just watch.

Mariam Ardati says becoming a death doula has helped her find purpose and meaning.

The woman saw the water running, saw Mariam stroking her mum’s hair and talking to her, offering prayers.

By the end of the whole process, the woman had taken over.

“I took a step back and watched her — with a lot of tears and a lot of emotion — go through each ritual in its entirety.”

Mariam says seeing a daughter perform these last rites for her mother “as she’s working through her emotions and coming to terms with her grief is such a powerful thing to witness”.

She recalls many women who say, “I’m so grateful for the fact that I was able to honour my mother in that way,” or “I was able to hold my sister one last time”.

The ‘very human touch’ of burial

Muslim burial rituals have a “very human touch”, says Professor Mohamad Abdalla, referring to the practice of men going down into a grave to lower a body in with their hands, sans coffin.

Mohamad is the director of the Centre for Islamic Thought and Education at the University of South Australia.

He explains that the body is positioned with the head facing Mecca, the traditional direction of prayer.

“With the soil of the grave they make a small pillow to lay his or her head,” Mohamad says.

Mohamad says Muslim funeral practices revolve around honouring and caring for the dead.

Three quarters of the way up the grave, small edges are carved out to hold several planks of wood.

“The soil is poured over the planks of wood, not touching the body of the deceased, essentially leaving about half a metre … for the circulation of air for natural decomposition.”

Muslim death ritual requires the body be buried as quickly as possible, which can be difficult in the event of a sudden death.

“It’s an honour to bury the deceased within 24 hours,” Mariam says.

She’s referring to the belief that after death, the soul ascends and is given “the glad tidings of heaven”.

When the two are reunited in burial, the soul shares that news with the body, remaining connected throughout the process.

Organ donation and autopsies can complicate the ritual and throw timing off.

“We do exercise our rights to object to an invasive post-mortem, as do other faiths and communities,” Mariam explains.

“We believe that process is an undignified act.”

However, there are alternatives for Muslims, for instance in the case of an unexplained or suspicious death, explains Mohamad.

“In the classical Islamic civilisation, autopsy was undertaken to understand the human body and blood circulation.”

Beyond autopsy, medical procedures after death are technically allowed, because preservation of life is one of the most important objectives of Islamic law, Mohamad says.

He explains that as long as the donor or their family consents voluntarily, organs are not sold, and the organs are healthy, it is a highly virtuous act.

“But the minority viewpoint says a person has no right to dispose of their body as they wish, because it is a trust from God,” he says.

Much of Mariam’s energy is directed to increasing death literacy in the community — helping people become accustomed to the idea of dying.

She encourages the same open approach at home with her own children, in a “mother-daughter bonding exercise”.

“I have cut my own [death] shroud, and I had my daughter by my side with the measuring tape saying, ‘No mum, that’s too short, we need to make it longer this way’.”

‘Five before five’

Mariam sees her job as an opportunity to serve God through caring for other people.

“When you’re living the life of a Muslim, you’re living between two states,” she explains.

One of those refers to “fearing retribution or the accountability of your sins”, and the other is “believing in the hope and mercy of God”

Mariam says she looks for the balance between the two.

It’s a sense of purpose that leads to an understanding that “your actions have consequences, and that you’re part of a larger social context”.

A Muslim is encouraged “to take advantage of what’s known as the five before five,” she explains.

“Your health before sickness, your life before you’re overcome with death, your free time before you become busy, your youth before your old age and your wealth before you become poor.”

Mariam says Muslims’ relationship with God is “underpinned by the understanding that God is the provider of infinite love, compassion and mercy”.

But for a person to earn that favour, she or he must live a life that’s conducive to those values.

In death, Mariam sees our final transition as a deeply communal responsibility, one that she is humbled to be part of.

She says she’s glad her own encounter with a near-fatal accident showed her that she wasn’t invincible.

Rather, it gave her a sense of purpose and meaning.

“I didn’t find that in the world of the living — I found it in the world of the dead.”

Complete Article ↪HERE↩!

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The death doula: helping you prepare for the day you die

By , , , and

What does it mean to have a good death? Leah Green meets with Aly Dickinson, an end-of-life doula. Aly helps clients to plan what they want to happen at the end of their lives, and she accompanies them as they transition from life to death. She helps Leah draw up a death plan, and takes her to a death cafe, where strangers discuss dying over tea and cake

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End-of-life doulas:

The professionals who guide dying people

Christy Marek is a certified end-of-life doula: she accompanies dying people and their families.

By

Doulas are tasked with maintaining a sense of calm for dying people and those around them, and opening the conversation about death and loss, topics that can often be taboo

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.”

Dying from ALS is a singularly awful experience; the disease causes the body to progressively deteriorate while the mind remains clear and lucid. Gelhorn had loved being active. He had played three sports in high school, coached girls’ basketball and served as a travel director at Lakeville North high school in Lakeville, Minnesota. 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.

“I just couldn’t imagine that the person dying had ever envisioned their death to be like that,” she said. “Dying isn’t just medical. It’s spiritual.”

Fascinated by the idea of a structured approach to end-of-life care that prioritized the individual wishes of the dying, Kirillin enrolled in a doula training course with the International End of Life Doula Association (Inelda), a not-for-profit that promotes the approach. Although there is no centralized regulatory body for doulas, training and certification programs are offered by a number of organizations, including Inelda and the Larner College of Medicine at the University of Vermont.
“There’s so much fear and anxiety about death,” said Janie Rakow, the president of Inelda. “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.”

Rakow and her business partner, hospice social worker Henry Fersko-Weiss, founded Inelda in 2015 to train doulas and promote their use in hospices, hospitals, prisons and homeless shelters. Their training program covers topics like vigil planning, active listening and doula self-care.

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.

“Can you imagine if a woman was going through labor and no one around her was talking about it or preparing for it? There’d be an uproar if we treated birth like we treat death,” said Kirillin. “You have to talk about it. You’re dying and you’re no longer going to be here.”

Doulas help their patients plan out their deaths: talking with them about their wishes, and how they would like to spend their last day. Some prefer to die in a hospital, others at home. They decide who they want around them, whether it’s with all their family and friends, or a religious figure, or alone. They choose the details of the setting, whether they want to hear music, whether they want to have someone hold their hand, and what rituals – religious or secular – they want performed.

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 dying people and those around them.

“One of my patients this past spring, as he was transitioning, he started to vomit,” said Kirillin. “I reminded everyone that when a woman is laboring a birth, sometimes she vomits. It’s the body’s natural way. Let’s just make him comfortable.”

Finally, the last part of a doula’s work comes a few weeks afterwards, when the doula meets with the deceased’s loved ones to reprocess and discuss everything that has occurred.

“It’s after the casserole brigade has come and gone, and everyone’s gone back to work,” Kirillin said. “We talk about grief and bereavement. You’re not going crazy. You can be happy and sad in the same moment. There is no timeline.”

Of course, the practice of guiding the dying on their final journey is not new. Death is not an unknown phenomenon, and the act of tending to the dying has existed as long as human civilization itself. Marek has a theory for why the need for a formalized approach to death has manifested now, in these particular circumstances – why the dying feel the need to contract a trained professional, rather than being able to rely on a more organic source of support.

“In America, a few generations ago, our communities were doing this work,” she said. “The reason the role is showing up in a formalized way now is that we don’t have those community ties any more, not in the same way, and certainly not the same level of responsibility to each other as used to be woven into our communities.”

Kirillin agreed: “I would love for our culture to never need me,” she said.

Much of doula work is the very definition of emotional labor, and though Janie Rakow suspects some doulas feel conflicted about taking money for their services, she sees the profession as no different from that of therapists or hospice workers.

“I had one of my patients tell me I wasn’t charging them enough,” she said, though Inelda also encourages pro bono work, and many doulas serve purely on a volunteer basis. She also cautions her doulas not to take on too many cases in a row, and to be cognizant of their own mental health. But, she said, the act of tending to the dying is not as depressing as many assume; rather, it can be very rewarding.

“When you sit with a dying person and they take their last breath, it is as amazing and awe-inspiring as someone taking their first,” said Kirillin. “It is important, and sad, and needs to be cherished.”

Gregory Gelhorn died in September 2018. He spent his last day in his home, surrounded by his family. Together, they watched a movie and listened to 90s prog-rock.

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