‘I’m a Death Doula and This Is the Top Way Most People Prefer to Be Comforted at End of Life’

By Jessica Estrada

Death doulas or end-of-life doulas, if you’re not familiar, are trained professionals who help people who are dying and their loved ones. These doulas provide emotional and practical support such as sitting vigil, helping plan funeral and memorial services, communicating with the medical support team, and assisting families with processing grief. Ensuring the person nearing the end of their life is comfortable is another big element of the job. While every death and situation is different, there are many practices and rituals that death doulas do—and teach and encourage the person’s loved ones to do—to bring comfort to the dying.

Below, Ashley Johnson, the founder of Loyal Hands, a team of millennial death doulas, shares five rituals, including the top way most people prefer to be comforted at the end of their life. Interestingly, many of these practices are universally comforting, even for those who are not actively dying, and can be incorporated now to help cultivate comfort in your everyday life.

Create a comforting ambiance

Setting the mood and creating a comfortable ambiance is important. Many people prefer to die at home, Johnson says, but wherever they may be, there are things you can do to make the environment as comfortable, familiar, and soothing as possible for them. To do this, she suggests asking the person what their ideal last day would consist of. Some ideas she recommends include playing their favorite music, having soft lighting, filling the room with soothing scents, and having their pets around.

Rub their feet or hands

Rubbing a person’s hands and feet can also provide comfort. “The last senses to go are usually touch, followed by hearing,” Johnson says. “Gently rubbing hands and feet will help the family and the dying process the labor of death. The comfort of massage helps relax tense moments. That sense of touch reminds the dying that they are loved and not alone.”

Sit vigil

Sitting vigil with someone nearing the end of their life also provides great comfort. Johnson says this involves sitting bedside with them, actively listening, and ensuring they are as comfortable as possible during their final hours. Sitting vigil also includes relaying any sign of pain to the hospice team.

Perform deathbed rituals

Deathbed rituals are a way to honor the dying person and their loved ones, Johnson says. Rituals can be done before, during, or after death and can be religious, cultural, or simply personal things the person finds comforting. For instance, Johnson recalls one client requesting that his family wash his body with warm water and lavender.

Shift their perspective on death

Death doulas also support the dying and their loved ones to adopt a death-positive mindset. They do this by having conversations about death, dying, and grief and encouraging them to view death as a normal part of life that everyone experiences. That can help reduce fears and anxiety around death.

Share and preserve memories

Another way death doulas help grieving families is by encouraging them to share memories and stories about their loved one. “This can help provide the family with a sense of purpose and also help significantly with coping and healing,” she says. You can get as creative as you’d like with this. Some ideas Johnson shares include capturing voice memos and videos, creating a family cookbook, planting trees in their honor, stitching a memory blanket together, donating to a charity they support, and keeping trinkets and mementos around that remind you of them.

Help get their affairs in order

According to Johnson, the top thing that makes people nearing the end of their life feel the most comforted is ensuring that their affairs are in order before they pass. Not only will this cause less stress to their loved ones, it also helps them achieve a sense of completion and peace before they pass.

“While legal documents are important, complete end-of-life care also includes helping the dying person spiritually, mentally, and emotionally in alignment as well,” Johnson says. “People ideally would like to transition with a sense of completion, a sense of satisfying their purpose here [in] this realm.” Examples of things that can provide that sense of fulfillment include extending forgiveness or requesting forgiveness from others, releasing things beyond their control, and addressing any fears or concerns around death.

Complete Article HERE!

An end-of-life doula’s advice on how to make the most of your time on earth

Life is short. Here’s how to cherish every day of it.

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“I want a party in the woods with an all-night campfire. I’ll be off to the side in a sleeping bag, nice and cozy. There will be s’mores and cocktails. My friends can come and go, saying goodbye however they want, or just sitting quietly with me and holding my hand. Nobody should touch my feet, though. I hate having my feet touched. A playlist of my favorite songs should be on repeat. I’d like to die as the fire burns out at dawn. Lights out and lights out, you know?”

I’m on Zoom and a chaplain from Iowa is describing her ideal final hours of life. We’re training to become end-of-life doulas, and this morning’s assignment is to help each other talk through a final hours ritual. It’s one of many exercises designed to confront us with our own mortality, so we can leave our own feelings about death at the door before we step across someone else’s threshold to help with theirs.

End-of-life (EOL) doulas are at the opposite end of the life cycle spectrum from birth doulas. They provide non-clinical care (emotional, logistical, and physical) and help with planning; engage with life reviews and legacy work; and provide support for family and friends so caretakers can bring their best, rested selves to support their dying loved one.

I knew training to become a doula would change my relationship to death, but I didn’t anticipate how it would transform my day-to-day life. Like others, my smartphone use skyrocketed during the isolation of the pandemic. Even after those panic-inducing first months in NYC, I still found myself using my phone as a constant distraction — lurking on Instagram, clicking every New York Times alert, obsessively refreshing my email like it was a Vegas slot machine.

I didn’t become an end-of-life doula to fix my fragmented focus. I did it because Covid-19 made death suddenly feel very real and very present. But I found that a deep dive into death work profoundly clarified my priorities, and has helped me spend time in ways more aligned with those priorities thanks to the soul-shaking understanding that our time here is truly limited.

Here are three components of EOL doula training that have been useful in my never-ending quest to live a more present and focused life in this Age of Endless Distractions. Think of it as a looking-back-from-your-imagined-deathbed approach to living — which sounds morbid in theory but is empowering and enriching in reality.

Imagine you have three months to live

I’m not going to lie to you: This exercise isn’t going to feel great! Please do it only if you feel equipped to engage with feelings of grief and loss. I recommend having someone you trust read it to you, someone who also has the emotional bandwidth and who is not currently grieving. You’ll need a pen and paper. Choose a time when you’re not going to feel rushed and are in a comfortable space. Take some deep breaths. Settle in. Here we go.

Write down your five most-prized possessions, your five favorite activities, your top five values, and the five people you love the most.

Close your eyes. Imagine you’re at a doctor’s office. You’ve just been given a terminal diagnosis and told you have approximately three months to live. Sit with that news. Breathe. Open your eyes. Cross any four items off your list.

Close your eyes. You’re back home with your spouse or friends or children or pet. You have to find a way to tell those you love: “I’m dying.” Breathe. Open your eyes. Cross another four items off your list.

Close your eyes. You’ve started feeling the effects of your illness. You can’t get around as easily. Your sleep is restless. You’re nauseated from the medications you’re taking. Breathe. Open your eyes. Cross four more items off your list.

Close your eyes. You’re mostly confined to your bed now. Your loved ones have gathered because they know they will soon have to say goodbye. They drift in and out of your bedroom, or wherever you have chosen to spend your final days, holding your hand, perhaps playing music you like or reading aloud your favorite book. Breathe. Open your eyes. Cross four more items off your list.

Close your eyes. You’re in bed, eyes closed, unable to move much or to speak at all. You sense that you’re going to die soon, and you wonder what will happen when you go. What are you thinking about in these final moments? Breathe. Open your eyes. Cross the remaining four items off your list.

Whew. You did it. Make sure to give yourself as much time as you need to regroup before you reenter the “real world.” Sit still. Focus on your breath. Drink lots of water.

When I did a version of this exercise, I was amazed at how real loss and grief felt as I crossed items off my list. (There is nothing quite like imagining your kid’s life without you to bring on The Sobs.) I don’t want to overstate the impact of imagining loss versus actually experiencing it, nor minimize our individual, multi-faceted responses to real grief, but research has shown that stressful life events can change us, and that includes clarifying our values and priorities. Maybe you, like me, tapped into some of that clarity during this exercise.

A few days after I tried this exercise, I rewrote my Top 20 list on a notecard. I keep that notecard by my laptop and look at it often. It has been an unexpectedly powerful reminder of what and who I love, of who I am and want to be. Each day I think about how to fit in as much as I can from this list, even if I only have a few free minutes to myself. It has become the framework that informs my daily to-dos and balance of urgent/important tasks.

Practice deep, active listening

A good deal of EOL doula work is listening work. The deep, active listening doulas are trained for involves holding back our own stories, comments, and feelings. Doulas don’t tell a dying person what to do. They don’t try to fix the situation. They ask open-ended questions and understand that how people move through the dying process is up to them. This kind of listening requires empathy and restraint. It insists on being free from distractions, external (cellphone notifications, I’m looking at you) and internal (like that voice inside your head that wants to judge or give advice).

As the person at a party who makes approximately 30 seconds of obligatory small talk before diving into deeply personal conversations with strangers, I assumed I was custom-built for this part of being a doula. But it can be difficult to stick to open-ended questions, to sit comfortably in silence, or to resist giving well-meaning but unsolicited advice.

So, I’ve been practicing. A lot. This kind of listening has altered what I can only think to call the texture of my time. It has made me more present, empathetic, and curious in conversations and relationships.

The next time you’re having a conversation with someone who is sharing important information or struggling in some way, you might try it. Ask open-ended questions. “How are you feeling about X?” “Do you want to talk more about Y?” Give their answers space and silence to settle.

Reflect back what you think you’ve heard. Be open to being wrong about what you think you’ve heard. Be supportive, but don’t try to fix the situation with advice or talk them out of what they are feeling. Avoid platitudes like “give it time” or “it wasn’t meant to be.” Even “I know how you feel,” well-intentioned though it is, often misses the mark because we mostly don’t know exactly how someone else feels or entirely understand their specific situation.

Of course, not all our conversations require this therapist-like level of restraint, but challenge yourself to consider that plenty of them could benefit from a touch more deep listening.

Legacy projects in the here and now

Doulas often help with legacy projects: autobiographies, letters to loved ones, art projects, and more. These projects memorialize a person’s passions and creativity, values and contributions, and — spoiler alert! — you don’t have to wait until you or someone you love is dying to work on one.

Complete Article HERE!

Enriching the dying experience

— End-of-life doulas help those who want to personalize their journey

By Nancy Burns-Fusaro

As a master gardener, Noreen Kepple is familiar with the natural cycle of life — with birth and growth, with dying and death. Her next chapter is a natural progression.

“Human beings are part of that cycle,” Kepple said one day last week as she spoke about her work as an end-of-life doula. “I think that’s what led me to end-of-life care.”

Kepple, 70, an early childhood educator by training, spoke recently at Stonington Free Library about her new calling — accompanied by Greta McGugan and her sister-in-law, Lavina Kepple — at a presentation titled “What is an End-of-Life Doula?”

This presentation, designed to discuss a doula’s role in the dying process and share ways doulas enrich the dying experience for patients and their families in non-medical ways, was well-attended and attracted many “brand-new people” to the library, noted Karla Upland, library assistant director.

The Kepples and McGugan, all Stonington residents, completed the certificate program at the University of Vermont’s Larner College of Medicine in 2020, where they studied to become end-of-life doulas. The term, Noreen Kepple said, is becoming more and more popular as members of the baby-boom generation come of age.

Add the pandemic to the mix, she said, and the thousands of people who were forced to die alone in hospitals while separated from family members, and there’s no wonder people have been pondering their own end days and those of their loved ones.

“Most people in this country die in hospitals,” Noreen said. “I think many more of us hope to die at home. … The pandemic underscored the need for people to not die alone. People are thinking about their own deaths and of how they’d like it to be. Dying at home can be a more rewarding process.”

Dying at home, she continued, is also a process that can be guided with help from a trained doula.

The word “doula” — which comes from the Greek word meaning “woman who serves” — is often associated with birthing, babies and new mothers. In the last few years, as more and more people seek to take control of their own dying experiences, it has become also associated with the dying process.

“Birth and death are so similar,” said McGugan, 56, the mother of three adult children and the grandmother of 10 who was present at the births of her grandchildren. “They’re really the same thing.”

An “end-of-life doula,” Noreen Kepple told the 30 people gathered at the library, can also be known as a “care doula,” a “death midwife,” an “end-of-life coach,” a “transition guide,” a “soul midwife” and “many, many others.”

Whatever the name, she said during a phone interview last week, an end-of-life doula is a non-medical companion who offers emotional and sometimes spiritual support to the dying and their families.

“A doula can have many kinds of service,” Noreen Kepple said. “They can help plan a vigil, help with paperwork and legacy projects.”

If someone is a good cook, for instance, Kepple went on, a doula might help organize recipes.

“Some doulas help record oral histories,” she said. “It’s really whatever the client wants.

“It’s important to be present, to be an active listener and to be open-minded.”

“Open minds and open hearts,” said McGugan. “We meet people where they are.”

“Back in the day,” McGugan said, people would have learned about dying at home and probably would have been present at the passing of a grandmother or elder relative, and would have been “holding the hands” of the person passing.

“We weren’t as afraid of death then,” she added. “Today we live in more of a death-denying culture.”

“Our culture has a hard time with death,” said Lavina Kepple, 73, a former schoolteacher who is training to be a hospice volunteer. “Taking the course really helps you look at your attitudes about death and dying.”

One of the books the three women studied while taking the online program through the University of Vermont, Noreen Kepple said, and one she recommends to people interested in learning more about the work of a doula is “Cultivating the Doula Heart: Essentials of Compassionate Care.”

The book was written by Francesca Arnoldy, the program director and course developer at UVM’s doula certificate program.

Arnoldy, who is also a bereavement researcher with the Vermont Conversation Lab, a hospice volunteer and author of “Map of Memory Lane,” said the program has grown exponentially since its inception in 2017.

As more and more people want an “intentional” dying experience, Arnoldy said during a telephone conversation from her home in Vermont one day last week, and choose to “personalize their end of life,” it makes sense that more and more people are enrolling in the eight-week online class, which prepares participants to “meet the growing demand for end-of-life support as people live longer.”

“I just trained nine more people to be instructors,” Arnoldy said of the program, which includes topics like “Dimensions of Grief and Loss,” “Non-Judgmental Support, Acceptance, and Unconditional Positive Regard,” and “Entering Sacred Space.” “And we are already full for this year.”

It’s an intensive course, Arnoldy said, with lots of reading, writing, modules, discussion boards and plenty of support.

“We do lots of sharing,” Arnoldy continued, noting that coursework requires roughly eight to 10 hours of studying a week. “It’s deeply personal … and there’s lots of feedback … lots of support.”

The course is appropriate for all those interested in exploring end-of-life possibilities, she added.

“Everyone has a seat at our table,” Arnoldy said, “although people with fresh grief might want to take time to heal before enrolling.”

“As a doula, I trust in my clients’ inherent wisdom and strength,” Lavina Kepple told the group gathered at the library last month as she read aloud from Arnoldy’s book. “A doula knows that each person is entitled to the completeness that is his or her journey.”

“It’s important to get people aware that doulas are out there,” said Noreen Kepple, who suggested that, in addition to the program at the University of Vermont, people interested in doula work look into an organization called The National End-of-Life Doula Alliance, a nonprofit that “welcomes and supports all end-of-life doulas, trainers, and interested parties, regardless of background or level of experience.”

The three women are already planning their next talk, a training session for the staff at Seniors Helping Seniors in Mystic.

Upland, who organized the sound and livestreaming technology for the Stonington Free Library presentation, has also made it available on the library’s YouTube channel via the library website.

The doula presentation at the library was well-received, Upland said in an email. “The audience was very engaged and attendees expressed interest in either employing an end-of-life doula for a family member, or becoming trained as doulas themselves.

“Many of the questions revolved around locating and engaging local end-of-life doulas for palliative care work,” she said.

Complete Article HERE!

‘Death Doulas’ Help Patients With Cancer Face Their End of Life With Courage and Meaning

Dying does not have the be scary, and there are resources available to help patients and their loved ones, explained an expert.

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Better care is needed for patients with late-stage cancer who may be facing the end of their life, and death doulas — also referred to as “soul doulas” or “end-of-life doulas” — may provide a resource that help patients and their family members cope with this difficult stage, according to Lorraine Holtslander.

“A death doula has education and expertise to support persons and families facing serious illnesses, including through death and grief,” Holtslander, a professor at the University of Saskatchewan College of Nursing in Canada, said in an interview with CURE®. “The doula provides support to access needed resources, make the best decisions and planning and preparing ahead for critical illness.”

Death doulas can help “fill the gaps” between the clinical and personal side of care, explained Holtslander, as they aid patients and families in navigating the health care system while also ensuring that important aspects such as their culture, gender and sexuality are honored through the end of their life. They may also offer services such as aromatherapy and music therapy.

“More people are wanting to take control over how they manage life-threatening illnesses, be supported to do their own future planning and move away from a strictly medical approach to death and dying, toward a more natural end of life,” she said.

Holtslander noted that death doulas are just one aspect of often-underutilized end-of-life-care resources that may be available for patients and their families. She mentioned that palliative care is always appropriate for patients with serious illnesses like cancer and ensuring that patients’ wishes are met starts with a conversation.

“It is so important to know what are the values, wishes and beliefs of the person facing serious illness or end of life so that the best decisions will be made,” Holtslander said. “We all face end-of-life at some point. Let’s make it the best experience, filled with courage and meaning, as there are many choices and options to bring comfort to the person and family.”

Options for patients with late-stage cancer may include palliative care, which focuses on symptom management and psychosocial wellbeing and hospice, which is care for the end of life.

“Patients with advanced cancer should access palliative and hospice care sooner, rather than later, in the process, which research shows will increase both the quality and quantity of their days and time,” Holtslander said. “If a patient is wanting to die at home, supports can be in place, such as the palliative care team, hospice resources and information, and doulas to support family caregivers.”

Death doulas not only help the patient through the end of their life, but also support loved ones through the grieving process after the patient with cancer dies. These professionals may be utilized at any time throughout the process, from completing the advanced-care plan up until and after death.

“Death doesn’t need to be scary of painful; it can be a very beautiful, truly spiritual experience,” Holtslander said.

However, more needs to be done for patients with late-stage cancer facing the end of their life, according to Holtslander.

“We can do better for people with advanced cancer, providing them with the best options, individualized plans of care, and more control over what is happening to them,” she concluded.

Complete Article HERE!

A ‘death doula’ explains how to transcend your fear of dying so you can truly live in the present

Death doula, Tree Carr, explains what she’s learned as an end-of-life guide and how to overcome fear of death so you can live a life with no regrets

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Death doula Tree Carr’s insight into peoples’ final days means that she’s more in touch with mortality than most. Supporting people on their final journey may sound like a grim task, but for Tree, this calling has taught her lessons on how to truly live. Lessons which she has shared with woman&home…

Death is the great unknown and the idea of having to face up to our own mortality and how we’ll be remembered after death can feel more than daunting. However, by learning to interact with this inevitable experience with a positive and supportive lens—you can stop being scared of it. In doing so, you focus on living a far better life, with no regrets.

The word alone can evoke terror, superstition, grief, feelings of loss of control, and existential dread. The sobering reality of death is often kept swept under the carpet and considered taboo for most conversational circles. 

In our long timeline of humanity, we’ve sought to cheat it; delay it; bargain with it; or transcend it. Its great and elusive mystery has captivated the mystics and has raised the eternal question that science has yet to answer—does consciousness carry on after the body expires? No matter what your ontological or epistemological worldview on death is, it’s safe to say that most people are scared to death of dying.

What is a death doula?

A death doula is an end-of-life guide who holds compassionate space for a person journeying through the psychological, emotional, spiritual, and practical terrains of death and dying. The word doula is from ancient Greek, meaning, ‘a woman who serves’—although the role is far from being gender-specific.

I felt the calling to become a death doula in my early forties after a lifetime of synchronistic events all revolving around death. From a near-death experience of nearly drowning in the Atlantic Ocean at the age of four, through to many serendipitous moments involving being at the right place at the right time when strangers on the street have been close to death.

“You can stop being scared of it. In doing so, you focus on living a far better life, with no regrets.”
— Tree Carr

What I’ve learned as a death doula

In my work as a death doula, the most challenging aspect that I witness a dying person go through is surprisingly not the biological deterioration of the body (there is plenty of palliative care pain control for that). In fact, it is the emotional or psychological loss of the sense of ‘self ‘ that appears to be the most painful.

From what I’ve personally observed, at the end of life many people experience a long, slow, and winding loss of who they knew themselves to be. They are thrown into the existential dark night of the soul asking the big questions: What am I? Who was I? What was this all for?

As a result, this can propel the dying person into depression, grief, isolation, and anxiety. This is where the role of a death doula can be very helpful, traversing alongside a person as they lean into the fears and trepidation of the big D!

Certainly, overcoming the fear of death it’s not a ‘one shot’ remedy most of the time and can be a gradual unfolding that combines a mixture of practices and experiences.

How I help people overcome fear of dying

Person contemplating life

Surprisingly enough, my death doula work isn’t always for people who are actively dying. I have folks getting in touch who aren’t dying at all, but they have anxiety around death. Perhaps they are coping with the loss of a parent or struck with grief from experiencing the death of another person they knew.

I guide my client’s through navigating death phobia, tackling grief illiteracy, bereavement catharsis, and reframing the narrative around the topic and therefore moving into a peaceful acceptance of death.

Part of the journey can involve meditations on death, closure techniques, and emotional integration through a variety of creative processes—letter writing, drawing, conversation, and more.

Here are some simple practices I encourage my clients to engage in each day to help overcome the uncomfortable feelings around death…

Observe the ‘little endings’

One way you can start to journey into your fear around death is to have a daily practice where you bear witness to the ’little deaths’ all around you every single day.

It’s a form of mindfulness with a central focus on the theme of endings. When you meet a friend for coffee and then you both say goodbye and they walk away and leave. This is a little ending. When you lose your mobile phone. This is a little ending when the sun sets every evening. This is a little ending.

Allow yourself to hold awareness for these little endings and be with any emotions rising up. Begin to surrender to the process of not holding onto the little endings but allowing them to release. 

Engage the art of non-attachment, seeing that the only constant, is change. Regular meditation practice is also a good habit because it will help to stabilize a conscious state of equanimity through experiencing endings.

Watch the cycles of nature

A pathway through a dark foggy wood

Another helpful tip is to sit and be with nature, observe and be mindfully present. Being closer to nature connects a person to the reality of impermanence. Observing the shifting and changing of the seasons. The growth, decay and return to Spring Equinox. This forever cycle of life, death, and rebirth.

Observe yourself falling asleep

Something else that can help out is sleep. The threshold states of sleep are liminal experiences just as death can be. When one becomes comfortable in these altered sleep states it can help ease the fear of death.

Make space in your bedtime routine for observing this. As you fall asleep every night and you hover on the liminal threshold of the hypnagogic state you can practice and surrender to the idea of your own death. Allowing yourself to relax and surrender to sleep from the cusp of fatigue is a surprisingly easy and transformative technique.

Attend a Death Cafe

Death Cafes are safe spaces to gather and meet to talk with other people about all things death and dying over coffee, tea, and cake. Whether you share your own experiences around losing a loved one or a beloved pet. Or maybe you are navigating your own end-of-life journey, Death Cafes are death-positive, compassionate, non-biased, and non-judgemental events.

In the many Death Cafes that I’ve facilitated worldwide, I see the boundaries of culture, gender, age, race, and religion dissolve as we all come together in solidarity over the one thing we all have in common—the fact that we will all one day die.

Living a life in fear of an inevitability that we all share can prompt or worsen difficult emotions, like anxiety, depression, panic attacks, and conditions like sleep anxiety
and insomnia.

However, by embracing the awareness of this inevitable life process, through positive and supportive ways, can not only help us live a more enriching life—but also help us to live one with no regrets.

Complete Article HERE!

A good ending

End-of-life doulas are destigmatizing death to help the dying end their lives well

By Jacqueline Salomé

Piercing through the chaos of chance and unexpected plot twists that we encounter throughout our lives, there is one stark and certain truth: we’re all going to die.

Yet, our death-phobic society has taught us to fear the only thing we know for sure. Even talking about death evokes superstitious reactions, as if speaking the word aloud is a death sentence in itself.

Death has surrounded us during the pandemic, with millions tragically losing their lives to COVID-19 worldwide. Though we hear about death daily, most of us remain detached from the experience. The whole thing is a terrifyingly mysterious taboo.

Death doulas think we can do better.

As part of a burgeoning death-positive movement, end-of-life doulas support people on their journey toward passing away. They fill a key gap in the typical medical dying process by offering a simple, yet radical, kindness that asks people what it means for them to die well, and makes their vision a reality.

Sue Phillips signs her emails quoting author Haruki Murakami: “Death is not the opposite of life but an innate part of life.” It’s a guiding philosophy for many death doulas.

“We just allow people the space to fully experience what they’re going through,” says Phillips, a death doula in Hamilton, Ontario, who found her calling after retirement. “[We are] really just trying to help people not be as afraid.”

By providing non-medical support and companionship from terminal diagnosis to death, end-of-life doulas like Phillips help the dying clear their practical to-do list and inner consciousness so they can cross the threshold with as much ease as possible.

They encourage clients to plan for what they want their deaths to look and feel like. They assist with paperwork, funeral arrangements and celebrations of life, and offer respite relief to primary caregivers. And they normalize conversations on death and grief through death cafés—informal gatherings where people can talk freely about topics related to dying.

For Phillips, the heart of the work is emotional, guiding clients to say what they need to say, forgiving and asking forgiveness before it’s too late.

“That might be something that a family would turn to a [death] doula for,” she says. “That person is going to advocate for you; that person is going to get you the information you need, or that person is going to sit at your side and let you talk about your emotional feelings, what you’re going through.”

Death doulas are self-regulated through the End of Life Doula Association of Canada, where Phillips sits on the board of directors. The Association connects death doulas across the country, overseeing quality assurance, continuing improvement, and providing education and networking opportunities.

Because the field is not officially recognized, death doulas’ services are not covered by provincial or private health care plans and insurance. Though this gives them flexibility to offer personalized care, there can be cost barriers and little awareness of their offerings.

Yet, without death doulas, many people die unsupported, with their goals for a good death unexamined and unfulfilled.

In Phillips’ experience, most people want to die at home surrounded by their loved ones.

“That’s kind of how it goes. They want to die at home, then hospice, then hospital. Long-term care is like the final choice. They don’t really want to go there,” she says.

Although 87 percent of Canadians wish to receive end-of-life care at home, the majority die in hospitals. The situation has worsened during COVID-19, where the proportion of deaths in hard-hit Canadian long-term care homes has been much higher than the international average.

Phillips says most of her clients don’t want to suffer, either, preferring medical assistance in dying if suffering becomes unbearable. But the medical system often defaults to acute care, seeing death as failure and prolonging it against some people’s wishes.

When Chrystal Toop’s beloved Métis grandmother passed, she was buried with tobacco in her coffin. Toop was angry and confused. Because her grandmother was a smoker who died of cancer, Toop felt like she was being buried with a symbolic weapon.

Toop, an Algonquin death doula from the Pikwàkanagàn First Nation in Renfrew County, Ontario, didn’t understand the significance of tobacco at the time. Colonization, systemic racism, and the legacy of the residential school system—of which Toop’s great grandparents were survivors—took many aspects of culture and language away from her family.

“It was around the end of my twenties that I finally started to make the connections of culture and [the tobacco] finally made sense. What they had done was ceremonial, and it was spiritual, and to show her that she had a safe journey back to the sky world.”

Her grandmother’s death had a lasting influence on Toop, encouraging her to bring cultural practices and plant medicines back to Indigenous people through her decolonial death doula work.

As demand for Toop’s services increased staggeringly during the pandemic, she turned to her mentors to co-found the Indigenous Death Doula Collective, serving Hamilton to Thunder Bay, Ontario. To widen their reach, the collective created Indigenous death doula training for youth, which Toop says is the first of its kind in North America.

The wildly successful program intended to reach 20 youth, but has a waitlist of over 200, is informed by Toop’s personal philosophy that death work is life work that begins at birth. “Society is designed to kill us. It’s that genocidal reality of Canada for Indigenous people…. the reality is, we’re always fighting against our own early deaths,” she says.

What makes Toop’s death doula work unique is the fact that it isn’t only about guiding people to die well. Because the average life expectancy of Indigenous people is up to 10 years less than settler Canadians, her approach also relies on harm reduction strategies to fight against early death. “One of the things I say is that we have the right to die of old age,” says Toop. “That’s all we want. We want Indigenous communities to realize that fantastic reality of becoming an old person, because that’s not typical.”

At four years old, Kim Winnicky was choosing a casket and planning her funeral. But she wasn’t dying. Growing up with a funeral director father, she always felt comfortable knowing that death is a natural part of life.

“Holding space for all that is involved in the end of the dying process is really powerful work,” says Winnicky, an end-of-life doula and hospice volunteer in Whitehorse, Yukon. “I just feel called to it.” When Winnicky sits vigil at a person’s bedside as they die, she feels that power viscerally. “Sometimes the feeling is very calm … and sometimes it’s a feeling of fear and clinging,” she says. “My work is to ground into equanimity and steadiness … that seems to help temper those waves and just sort of bring this grounding radiance into the room.”

Winnicky treats the dying with healing touch—a therapy that balances a person’s energetic fields. Clients have reported profound impacts, including Winnicky’s own mother, who said it was more effective than morphine at controlling her pain from chronic obstructive pulmonary disease.

Simple physical touch can be the comfort that someone needs to release into a peaceful death—Winnicky has seen it firsthand. But during the pandemic, with visitor restrictions in medical facilities and care homes, many have died alone without any loving touch at all. “That breaks my heart for everybody in that situation,” she says.

Everyone’s idea of what it means to live and die well is different. But for Jody Roberts, a death doula based in Coquitlam, B.C., there’s one common thread: love.

“At the end of the day, nothing is permanent but love. We have to ask ourselves, did we love well and were we loved? Did we love ourselves and did we love ourselves enough?” says Roberts.

It’s an influential aspect of Roberts’ work, encouraging clients to engage in these deep emotional and spiritual reflections well before they die. One of Roberts’ clients was a lawyer struggling with losing his identity late at the end of his life—an identity tied up with the achievements that he worked so hard for, but that he couldn’t take with him. It seemed to make his transition uneasy.

“It’s why we need to loosen our attachments before the end and stay attached to love. You can take love with you everywhere, but you can’t take people or things,” Roberts says.

With the help of death doulas, she thinks Canadians are realizing that a better death is possible, and that it actually starts by living fully. And for the living, recognizing that grief is a manifestation of loving what you lost can be a powerful way of moving through the hard feelings. “It’s about loving fiercely every day,” she says. “And loving life so you can end well.”

Death is with us every day—it’s a fact of life. And it feels more present than usual, with the pandemic dragging on and an anticipated increase in cancer deaths due to the pause in elective screening procedures.

But, while death is inevitable, having a tumultuous and fearsome dying experience is not. Death doulas know that the final chapter of our lives can be magnificently powerful, if we embrace it.

Complete Article HERE!

What Are Death Doulas?

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When people say someone had “a good death,” they usually mean that someone was comfortable and not in pain. But what if you could help their final days include the things they treasure — like their favorite song playing, who is at their bedside, even the scent of a candle in the room — so they feel at peace.

That’s why some people turn to end-of-life doulas. They are among the professionals who can help someone prepare for their death and reflect on their life: their greatest joys and regrets, any fears or worries on their mind, and how they want to be remembered.

It’s work that many people don’t want to think about.

“We live in a death-denying culture,” says Elizabeth Johnson, executive director of the Peaceful Presence Project, a nonprofit end-of-life doula collective in Bend, OR. Doulas can be part of the team that helps prepare people for death by opening up conversations about it, as well as providing comfort and resources. Hospice care teams and other palliative care practitioners also work in these areas.

Doulas and Hospice

Hospice care often involves a team of people, such as a social worker, a chaplain, and a nurse who checks a patient’s vitals, administers medication, and changes bandages. Doulas, on the other hand, have no required medical background and do not perform any clinical or medical tasks. They may read aloud to a patient, clear clutter, or sing with someone.

“Doulas are able to step into those unsupported spaces,” Johnson says. Where a hospice social worker or chaplain may visit once a week, “Doulas have more time and bandwidth. They are available for deep listening during acute windows of need,” says Johnson, who is on the board of the National End-of-Life Doula Alliance (NEDA).

Doulas can assist patients outside of hospice, too. Merilynne Rush, RN, a doula in Ann Arbor, MI, and vice chair of the End-of-life Doula Advisory Council of NHPCO (formerly the National Hospice and Palliative Care Organization), recalls a client who was overwhelmed after taking her husband home from the hospital to die. Rush talked to her about palliative care, a social worker, hospice, and getting a hospital bed. “She didn’t have the first clue about any of that. No one in the hospital tells you,” says Rush, who is also a past president of NEDA.

Likewise, Cynthia Schauffler of central Oregon contacted Peaceful Presence about a friend with terminal cancer. “My friend asked me when she should call hospice and I didn’t have the wherewithal, resources, and contacts to help her.”

Doulas from the group began visiting her friend twice a week. The visits included reiki, art therapy, and conversation with a chaplain. They got her hospice care and talked to her family about what to expect.

No Typical Cases

You may hear end-of-life doulas referred to as a soul midwife, end-of-life coach, death midwife, transition guide, or death doula. Unlike hospice, the cost of a doula is not covered by Medicare.

Private insurers do not reimburse for doulas, either. But some doulas provide volunteer services through a hospice or nonprofit organization.

Doulas may charge an hourly rate, from $45 to $100, or on a sliding scale. Or you may be quoted a flat fee from $500 to $5,000. Costs will vary depending on the number of visits, location, whether the doula is staying overnight, or other service requests.

Similar to a birth doula, an end-of-life doula tailors services to each client. Beyond getting wills and advance directives in order, they encourage the dying to reflect on their life. Are there relationships they want to repair? Something they need to say or do before they are gone? Who do they want to see again before they die?

There is no such thing as a typical case when you’re a doula. “It’s all over the board,” says Rush, a former hospice nurse and midwife, too. It’s not unlike the old tradition of a neighbor, friend, or auntie coming into help, she says.

Doula visits can be daily, weekly, or span several years. They can assist with writing letters, doing laundry, planning a funeral, or creating a legacy. A legacy project might involve captioning photos, scrapbooking, or organizing recipes to pass on to family.

One of Johnson’s patients had an extensive record collection. She helped him write meaningful stories about his life that coincided with each album. She hung up the stories in his room for visitors to read and discuss with him.

Someone to Talk to and Cry With

Sometimes, the family needs practical or emotional support more than the person who’s dying does — especially if that person isn’t conscious or alert.

Joanna Harmon of Finksburg, MD, described her doula as “a formidable advocate” who helped her weather the stress and emotional strain when her dad was dying in 2019. The doula was trained by Gilchrist, a hospice in Maryland that has offered volunteer doulas to their clients since 2010.

“She sat with my dad for as long as 3 hours and held his hand so I could leave the room.” The doula also helped get her mind off “the inevitable” by asking about her childhood with her dad. “She was someone to talk to, to cry to, to let those things off your chest,” Harmon says.

Schauffler says that her friend’s doula dropped everything to be there for her friend’s final hours and kept in touch with her husband afterward. “It made a huge difference,” she says.

Where to Find a Doula

To find an end-of-life doula, inquire at local hospices that may work with doula volunteers. Or start with the state-by-state directory of doulas from the National End-of-life Doula Alliance.

These end-of-life doula training programs can also link you to people who completed their course work:

  • International End of Life Doula Association
  • The International Doulagivers Institute
  • The University of Vermont Larner College of Medicine
  • Lifespan Doula Association

If You Choose a Doula

Ask prospective doulas about their training, experience, and fees, and also about their availability and backup, advises Rush, who also trains doulas as owner of The Dying Year. Plus, see if they offer the services you want. Massage therapy? Meditation? Meal prep?

You may opt to hire an end-of-life doula who has completed training courses and received certification. But there is no license or credential required to practice. “There is no universally recognized local, regional, or federal authority, regulatory or accrediting body that holds liability or provides monitoring for end-of-life-doulas,” states the website of National End-of-Life Doula Alliance. “There are a growing number of organizations offering certification but it is voluntary.”

Get references and also consider whether they have the experience but not formal credentials. “The person may have a lot of experience and no certification so don’t rule that out,” Rush says.

Complete Article HERE!