She arranges everything, from finding long lost families to organising organ donation
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.
“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.
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↩!
— and finds meaning and balance as a death doula
“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.
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.
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↩!
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
The professionals who guide dying people
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.
Complete Article ↪HERE↩!
By Cara McDonough
The term “death doula,” which a lot of people use when describing Nathalie Bonafé, makes her job sound edgy. But the proper name for what Bonafé and her company A Gentler Parting do is “end-of-life doula.” And while the job does involve helping individuals and their caregivers face the existential mysteries of the great unknown, end-of-life doulas spend a lot of time facilitating the practical duties that surround the event.
These doulas — who, like birth doulas, are focused on ushering individuals from one phase of life to the next — aren’t as common as the hospice and palliative care workers we associate with end-of-life care. However, they hope their work, approaching death with compassion but also a pragmatic business sensibility, will become more mainstream.
In fact, Bonafé and her colleagues refer to what they do as “a movement.” In addition to their primary responsibilities, they also conduct free workshops, seminars and discussions known as “Death Cafes” to get people talking about death more often, making it a less taboo topic.
Bonafé, previously a molecular biologist, was trained at the New York City-based International Doulagivers Institute. While end-of-life doulas do not provide medical care, she and other doulas offer a wide range of services: Bonafé can help a client do anything from write a living will to downsize his or her home. After a client has passed, she can help create “legacy projects” and facilitates grief management. Rates vary greatly from client to client, she says (most end-of-life doulas seem to average several hundred dollars for typical services).
While the actual client might be the individual facing death, an end-of-life doula can prove invaluable to that person’s family, health care team and legal counsel, too, Bonafé says. The doula serves as an unaffiliated advocate during an “emotionally charged” period, she says, providing crucial support and planning.
Ingrid Harrison of Affordable Personal Services & Pet Care is a former veterinary technician and New Haven County-based end-of-life doula who specializes in keeping clients with their pets.
“I have seen firsthand with my clients, family members and friends that if there is no plan when you become debilitated or pass away, it can have a disastrous outcome,” she says. “Having an end-of-life doula makes for the peaceful passing that everyone deserves.”
As for the Death Cafes? Again, sounds edgy, although the concept is anything but. Bonafé holds them on the last Tuesday of every month at New Haven-based coffee shop Koffee?, describing the gathering in flyers as “a safe, respectful space where we can share our beliefs, curiosity, fears, and stories — and maybe gain a little insight into our mortality.”
There are usually about 10 participants at each meeting, of different ages and from diverse cultural backgrounds, ethnicities and religious beliefs, she says. One young man joined a recent group after he’d finished a date at the coffee shop because he had recently attended his first funeral and wanted to share thoughts.
People hear about the events through word of mouth, social media or the official Death Cafe website deathcafe.com, which includes events all over the world; there are over 8,800 Death Cafes held in 65 countries, according to the site.
“People leave the meetings with big smiles and a heart full of joy to have been able to share their stories,” Bonafé says. “As the moderator, I ensure that the space is a place of respect and lack of judgment.”
Dawn Whelan operates My Last Gift in Staffordville. Her services, in addition to many like those provided by fellow end-of-life doulas, also include destroying paperwork “not intended for public view” after a client has died.
She says that death is the “one thing we all have in common” and is honored to serve her clients and the community through her work and the free monthly webinar she’s created — DASH — allowing individuals to discuss death openly on a regular basis.
Whether at “cafes” or online, discussing death can help dissuade fearfulness, says Sharon McCullough, an end-of-life doula based in Southington. Her company, Sharon Cares, also offers free discussions on death at a local wellness center.
“People live as if they will recover from all diseases and incidents and are angered by anyone who even starts to talk about the idea that treatment is not curative. This leaves many families stricken with anger when a loved one dies,” she says. “As a doula, I am able to be a witness and support through the struggles of this very natural part of life.”
Dr. Kathleen Leinhardt, a physician who treated one of Bonafé’s clients, saw firsthand how the emotional and logistical support offered — providing food, music and companionship, while also helping organizing home health care and hospice services — changed her patient’s experience. “Nathalie truly took on the role of a surrogate daughter,” she says. “End-of-life doulas can be an invaluable help to those who lack family or whose family lives far away. More than that, though, they can serve as a guide to both patient and family through the emotional and logistical process of dying.”
Nathalie Bonafé shares what she’s learned as an end-of-life doula.
Everyone has a story.
When I spend time with people toward the end of their lives, I am always amazed by the stories they share with me: what/who really mattered to them, where they grew up, their relationships, places they called home, visited, loved, their daily activities, their passions, their beliefs. I find that many express their grace and humanity alongside their vulnerability.
Everyone wants validation.
People want to be seen, heard and understood. No matter what religion, beliefs, education, socio-economic status, mental or physical abilities people have, everyone I encounter is receptive to a smile, compliments or being listened to. People at the end of life want to be witnessed and remembered as the young and strong and able people they used to be. They also want to be remembered as loved, decent, loving human beings, without judgment.
People tend to die the same way they chose to live.
People have a lot more control over the way they die than one can imagine. For instance, a very private person will prefer to spend the very last instants alone or in the arms of a very trusted person; a person who was a natural caregiver will die making sure that the most sensitive/fragile people in their lives are sheltered from shock and pain. Likewise, those who understand the benefits of planning a little, and learn the notion of “letting go” during their lives, tend to find acceptance and inner peace more easily than most.
Listening is more powerful than speaking.
Compassion, understanding, forgiveness and love can be expressed very simply. Similar to the way a frightened child will find incredible comfort and reassurance in your open arms, people in grief, whether facing their own mortality or that of a loved one, want a safe, intimate space to shroud their pain and fears. Learning to build and offer such a space to others in need of such reassurance has been one of the most sacred, humbling and profound discoveries of my life.
It’s worth living to learn.
Life is hard. Every day, we get disappointed, we either feel hurt, or we hurt, we misunderstand, we get angry, we win sometimes, yet we fail a lot more often than we win. Still, we learn throughout it all. Think about it this way: since it is scientifically proven that novel experiences give us a rush of dopamine, the “feel good” neurotransmitter, we can turn the pain and changes in life into growth and love and more rushes of dopamine. Intense moments of joy and excitement are rare. Pay attention and enjoy them; they are precious.
Complete Article ↪HERE↩!
Death doula Jane Whitlock on end-of-life care, grief, and the importance of telling our death stories
When her husband got sick with kidney cancer and died four months later, Jane Whitlock, having had no experience with death or grief, found that the guidance and spiritual care provided by hospice just wasn’t enough. Resolving to find her own purpose while answering for the gaps she saw in end-of-life care, she followed her intuition and became a death doula.
A death doula, or end-of-life doula, is someone trained to provide holistic care to a dying individual. There is no nationally standardized certification program, which means there are multiple training options—a process that involves a set of training classes and documented hours of direct client support, plus whatever specific assessments a particular certification program requires. Death doulas represent a growing movement toward redefining our typical approaches to death.
A death doula’s role is as nuanced as each individual who occupies that role, and Jane Whitlock sees herself first as a companion. She provides comfort and support to the dying individual and their “tribe”—as she often refers to the circle of family and friends—through a time for which most people may not be spiritually prepared. Through intentional connection, she deciphers how she and the tribe can best serve the dying person. She abides by the slogan, “Death: it’s a collaborative event!”
This Q&A has been edited for clarity and length.
The Growler: Why do you believe death doulas are important?
Jane Whitlock: A doula helps ask the big questions so this process is as spiritually comforting as it can be. Think of your deathbed and how you want to feel—at peace, right? So, how do you get there?
A doula also gives you some sense of what’s coming and can support you through these tough situations that you may not be prepared for. You haven’t been here before and often don’t have any bank of knowledge to draw from.
Cultures have evolved to include how we care for people who are dying and have died, and while some intact cultures can trace their beliefs back very far (to the Buddha, for example), Americans don’t have those deep ties.
Since the Civil War, the standardization of funeral homes, embalming, and the medicalization of end-of-life have removed death from the home. We no longer know how to care for people who are dying, how to have home vigils, how to mark significant transition points (leaving a body for the last time, a body leaving the house).
How can our modern standardized systems shift to accommodate what death doulas have to offer?
It would be amazing if hospitals employed doulas! Wouldn’t it be great if you could transfer someone who has died to a room to clean them up, bring the family in, and have someone guide them through rituals of saying goodbye and nurturing the body?
I think a lot of times this seems like a white lady movement—like, we want to cover everything in crystals and candles and aromatherapy or whatever. I push pack against that because there are so many other ways of experiencing death. This movement needs to be more inclusive, to change a whole bunch; being a death doula is a teeny, tiny door, and there is a lot of growth ahead.
What characteristics make an effective death doula?
You have to be able to empty yourself out, to be hollow and free of judgment, of any preconceived ideas about what should be happening. You have to listen without thinking and really be with someone when they’re suffering without trying to fix it. An effective death doula is someone who is calm, quiet, and vulnerable. It’s really so much about vulnerability.
I volunteer at a hospice and often have to practice that whole “soft belly” thing, to stop before every room and become wide open. Even when someone doesn’t want to see you, you have to think, “It’s not about me.” You just kind of clear your energy, go into the next door. You have to fight being defensive in order to just be vulnerable.
What are some ways to go about changing our death culture?
It really starts with your stories. We don’t tell our death stories; we tell our birth stories and our family stories, but we don’t tell our death stories. It would be great to just listen to a bunch of stories about how it happens, maybe know just some weird and messy stuff, too. What was it like? What would you have done differently? What went well? What surprised you?
There’s this guy, Dr. Allan Kellehear, who says our inability to talk about death is a public health epidemic. He refers to the AIDS epidemic and how you couldn’t shut a bathroom stall without a poster on the back teaching about prevention and safety. Wouldn’t it be great if we took that type of vast approach to shifting death culture?
Another maverick in the field, Suzanne O’Brien of Doulagivers, says there should be someone on every block who knows the end-of-life basics so that when somebody in your community is dying, they are supported.
Who do you think is the best at approaching death?
Well, the Buddhists, hands down. They’ve got the saying: “We are of the nature to get old; we are of the nature to suffer; we are of the nature to die.” Imagine if that’s how we started every morning—we wouldn’t be so shocked by death! There are people who think that aging is some kind of radical punishment or who feel entitled to live in a full healthy body forever. That’s just not our nature.
I would say that to prepare for death, you have to get your spiritual house in order, whatever that means to you. Life is finite, super fragile, and you are not entitled to anything! So, spend your time wisely and be grateful.
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“Everyone dies and that is OK.”
Those six words are something of a mantra for Kayla Moryoussef, a Toronto “death worker” who has spent the last six years immersed in death and dying. As the program manager of the Toronto Home Hospice Association’s “Death Café” initiative, she holds sessions for people to talk about death (more about that later) and, in addition, works to help people experience a “good death.”
What might make a death good? That probably depends on the person, but one of the main things Moryoussef works to get people to let go of is fear.
And she’s not alone. While it’s still a relatively niche corner of the death care industry in Canada, there are an increasing number of people with “death doula” or “end-of-life-worker” practices and, like Moryoussef, most are participants in the “death-positivity” movement.
“It’s not that we should celebrate the fact that people died,” says Moryoussef, who works with Toronto’s Home Hospice Association and has a practice called Good Death (www.gooddeath.ca) through which she runs “Death Café” sessions in Toronto. “But we should accept the fact that people die and, even though it’s not a good thing, it’s an OK thing that’s a part of life. As soon as we recognize that, it becomes less scary.”
In a nutshell, the theory is that we’ve lost touch with death, which used to be more a part of life than it is now. Prior to, say, 100 years ago, people often died at home and, if they lived in small communities, neighbours and family dealt with a lot of pre- and post-mortem issues. As it became more “hands off,” it also became distant, invisible and shrouded in mystery. As a result, we’ve become more afraid of it. Some people use euphemisms, like “passed,” others speak in hushed tones, as though something shameful has happened. At death cafés, people learn to talk about it more openly, in hopes of getting past the fear and awkwardness.
“People get together to talk about dying and death,” says Moryoussef. “They’re not support groups, they’re not grief and bereavement groups, they’re literally just open forum events, although, since we realize that certain populations have different needs, we started to make some population-specific, so we have LGBTQ cafés and, in November, we’re having our first death café for people with chronic illness and chronic pain.”
Death cafés (or “death salons,” as they’re sometimes called) are one of the most successful components of the death positivity movement, says Dr. Katherine Arnup, retired professor at Carleton University and author of “Family Perspectives: Death and Dying in Canada,” a report published by the Vanier Institute of the Family.
“I just looked at the most recent stats, and there have been 9,261 death cafés in 65 countries,” says Arnup, pointing out that this is pretty good given that they only started eight years ago. “I’ve been to a few and it can actually be kind of fun, with a lot of laughter surprisingly. I mean, 65 countries is pretty impressive and there are other ones like “Death over Dinner” and “Death at a Bar,” you know, those kinds of things.”
There’s obviously a demand for a different conversation about death and dying than the one most of us have been having, but public and private sessions aren’t all that death workers offer. Moryoussef has been called upon to join families sitting in vigil and help dying people settle on a “legacy” — usually letters, gifts or memoirs that are to be given to loved ones, post-mortem. This, along with dying at home (when possible), is all part and parcel of the philosophy of the good death. Some death workers even help families who want a home funeral clean and preserve the body.
There are some parallels between this and the big midwifery resurgence (circa 1960-1990s) that saw feminists objecting to a medical system that tended to keep women in the dark and gave them few choices. The modern midwifery movement worked to rectify that by giving women information, encouraging them to be active in making a birth plan and, in some cases, even empowering themselves to choose to deliver at home, instead of the hospital.
So, since birth and death — the only two inevitabilities of life — arguably faced many of the same problems, why didn’t we notice that the death care industry needed some changes, too?
Dr. Arnup says demographics played a big part in the shift in attitudes toward death.
“I don’t like the stuff around the Baby Boomers so much, how you see claims that Boomers changed everything, from the way we eat to the way we die,” says Arnup. “But I think there’s something to be said for the fact that, just because there are so many of us, some have a sense that we can do anything and control things. Certainly some Boomers pushed for medical assistance in dying, which is now the law of the land, and they’re also the people who are supporting hospice.”
Boomers aren’t alone in wanting to avoid the indignities of, say, a protracted death in a hospital, but the sheer number of people in that demographic who hope for pain-free deaths, surrounded by friends and family and, ideally, in their own home, is starting to reshape the industry by supporting alternatives like Moryoussef’s.
And, as she says. It’s still sad — for everyone. It’s not a celebratory moment. But since letting go is a natural part of life, it’s also OK.
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