This is what it’s like to be a death doula

The founder of Going With Grace, Alua Arthur, shares how she found her way into death work and how she manages not to take her work home with her.

Alua Arthur

By Anisa Purbasari Horton

For many people, the thought of being surrounded by death (and have that be a central part of how they earn their living) can seem quite morbid. But for Alua Arthur, the founder of the end-of-life planning service Going With Grace, it feels exactly the opposite.

Arthur is a death doula—also often referred to as a “death midwife.” Arthur’s journey to becoming a death doula is a profoundly personal one, but she represents a number of professionals who are active in the growing “death wellness” and “death-positive” movement. As Fast Company‘s Rina Raphael previously reported, this movement rests on the notion that having a good death is “part of a good life.”

Fast Company recently spoke to Arthur about her motivations for becoming a death doula and how she copes with work-life balance as she helps others through the grieving (and often stressful) administrative process that comes before and after a loved one’s death. The interview has been edited for length and clarity.

Helping people become clear on what death looks like

A death doula is a non-medical professional who provides holistic support for the dying person of the family and the family members. I help the people who are close to death on what it looks like. After that, I help family members deal with their affairs.

I also work with healthy people. The way I conceive it, as soon as someone comes into any recognition that one day they’re going to die, that’s the time to start preparing for that, so I help them with an end-of-life plan. It’s where we write down all the stuff that’s going to be a pain. We get clear for what their desires are for life support, and who’s going to make the decisions for them. We walk through important information and documents, like where’s their birth certificate? Where is their retirement account? Where do they bank? 

I also help people who are terrified of death. I find that people are more afraid of the dying process than death itself, so with them, I do death meditations. This looks like us going through the eventual decline of the body, their systems shutting down, and their breathing becoming ragged. It’s an opportunity for the person to lay there with whatever it is they experienced. A lot of times, people experience a sense of peace after going through this process.

The desire to build a career around death

Growing up, I wanted to be lots of things. I really wanted to be an astronaut. I loved to read and immerse myself in another world. I also wanted to be a conductor. I applied to a music conservatory, but I ended up in a liberal arts school that had an okay music program. I got involved in student government and decided to go to law school. I worked in property law, starting with government benefits, and then I moved to domestic violence and then not-for-profit development. I fumbled around for 10 years and started getting really depressed, so I took a medical leave of absence. That’s how I found death work.

I met a woman in Cuba. She had cancer and was traveling, and we bonded. We spent 14 hours on the bus together, and I asked all the difficult questions. What would be undone in her life if the disease killed her? What does she think happens after she dies? Did she live with the recognition of death constantly? They were questions I never really had myself. That was the first time it hit me that death was very real and that we don’t talk about it enough. It became clear that I wanted to spend my career talking about death.

That was solidified when my brother-in-law got sick and died. It showed me how all the ways that we do it now are broken. We had so many questions—how do we transfer the title for his vehicle, and what should we do with his leftover medication? There was nobody to answer them.

A day in the life of a death doula

A typical day always includes a lot of emails. So many emails. The part of my job that stresses me out is the business part. God, it’s the worst! I need to go back to my vision of helping people feel less alone to keep me in clear focus.

I start my day checking on various things—with the people who are dying, how things were over the course of the night. I’ll also check on plans for any funeral procession. I do a lot of phone calls and talk to therapists who work with people that are dying. If I do have clients that are dying, I see them in the afternoon, or I will see my end-of-life planning clients.

These days, I also do a lot of education around death and dying. I’m doing a lot of talks to reach people about how to do this work because we’re all going to have to do it for somebody in our lives.

When it comes to work-life balance, I do things like meditate daily, exercise regularly, and drink a gallon of water every day. I just got my nails done. I don’t deny myself pretty things.

On death and relationships

I talk about death all the time with my friends and family. I think sometimes I can be a little bit annoying because I want people to be authentic in their decision-making. I tend not to tell people what to say or do, and I listen actively. My best friend and I, we always have challenges because she always wants to tell me what to do. It is a struggle for my friends who have a hard time with the concept of their own mortality, because I’m talking about it all the time.

I don’t push the issue with my friends who are uncomfortable, but with my family members, I do. For my dad, he first had to come around to the idea that I wasn’t going to be practicing law anymore. Being an African parent, he wanted me to be either a lawyer, doctor, or engineer. I was like, how about death? He was like, how about what? That was a little tricky. But eventually, we got around to talking about it. After all, I’m the one who’ll have to deal with it when it happens.

I think people actually want to talk about death, but they feel like they don’t have permission to do so because it’s “heavy.” Well, it’s a regular part of living. Without death we wouldn’t have life. It’s funny: when I meet someone for the first time and I tell them I’m a death doula, so many of them say, “Oh, when x died, I wish that you had been there.”

Complete Article HERE!

How ‘Death Doulas’ Are Helping People at the End of Their Life

They’re changing how we approach end-of-life care.

by Kristen Fischer

To many people, the word “doula” refers to a childbirth coach. But doulas aren’t only available for when life begins — they can help when life ends too.

An end-of-life doula is a nonmedical professional trained to care for a terminally ill person’s physical, emotional, and spiritual needs during the death process. While you may never have heard of this position in the healthcare field, there’s quite a market for “death doulas.”

The role is also referred to as an “end-of-life coach,” “soul midwife,” “death midwife,” or “transition guide.”

Searching for a way for patients to have a “good death” has become increasingly important in the medical community. Last year the medical journal Behavioral Sciences devoted an entire issue to communication over end-of-life issues to ensure patients’ end-of-life wishes were realized.

“In the American culture, where the majority of people die in hospitals, death has been routinely denied, sterilized, and/or removed from view,” said Maureen P. KeeleyTrusted Source. Keeley, who is director of graduate studies at the Department of Communication Studies, Texas State University, wrote in the journalTrusted Source. “Talking about dying with the person that is terminally ill can relieve anxiety for both participants in the conversation, and it can help ensure that final wishes regarding treatment at the end of life are honored.”

Currently there a few organizations that administer credentials for death doulas, including the International End of LifeDoula Association (INELDA), International Doulagivers Institute, and Lifespan Doula Association (LDA).

Jeri Glatter, vice president of INELDA, said her organization has trained about 900 end-of-life doulas in the United States since 2015. The organization provides personal certifications as well as training to hospital staff members including hospice workers. In addition to popularity in the United States, there is a significant interest for training in Asia.

Individuals who seek a personal certification often go on to run their own businesses. An INELDA certification involves attending a training session and then applying for the credential. Several requirements, including hands-on work, must be completed to become certified, which takes the average person six to nine months and is quite rigorous, Glatter said.

Life as a death “doula”

For those who embark on the career, it’s quite a personal choice.

Kelly Sanders, RN, an end-of-life doula from Michigan, worked as a nurse in the long-term care field for many years before becoming a death doula.

“I saw people die without any control over the process,” she recalled. “It seemed as soon as the terminal diagnosis came, the patient became invisible to family and friends. They would talk as if the patient was already gone, even while the patient was in the room.”

She said that hospice cannot provide all of the services a person needs — especially the emotional help — when they have a terminal prognosis.

“Hospice does a great job taking care of the medical aspect of dying, but due to the changing nature of healthcare compensation, little time was left for the other aspects of dying that are just as important for a peaceful passing,” she said. “End-of-life doula services fit that need.”

She said there is a big misconception that hospice provides the same services as a death doula.

“I think it was the overall idea of hospice, but because of Medicare/Medicaid cuts, hospice only has time to deal with the medical needs. They do not have the training to even do the work of a doula.”

Death doulas can fill a gap in care. People can work with a death doula before they reach a point where they qualify for hospice. And an end-of-life doula is able to devote themselves to a single person, going in without an agenda to fulfill that person’s needs.

What a doula does

Sanders said a huge part of the job is to establish trust and build a relationship with patients and their families. It’s important to respect their wishes and not influence their decisions, she said.

As part of her services for Peaceful Journey Home, LLC, Sanders is often asked to take family photos or assist patients in writing letters to ask for forgiveness. Some patients hire her to plan their funerals.

“The more time that you have with a person, the more you learn and it is easier to learn their life story and advocate for their wishes,” she said. Sanders said it’s important to be flexible during the process. When she notes a patient’s wishes and they change, she gently reminds them of their initial preferences but allows them to change their minds.

“It is their death, so they can certainly have the right to change focus,” she said. “Sometimes we don’t always know what we want, and we mold the idea as we go along.”

Some family members rely on the doula to remain present and keep them informed on the patient’s status while they take a much-needed break.

A death doula can also answer questions about the dying process and empower family members to create the kind of environment that the person dying has requested, said Christy Marek, an end-of-life doula from Minnesota who sees patients locally and offers her services via phone and video conference.

“We help family feel competent and central to the process and less afraid of the unknown,” Marek said. “It is a true partnership, and I think that’s the best support we offer for families — assuring them they are not alone.”

Typical services include helping patients create legacy projects or planning a person’s final days and moments. Mostly, Marek said she focuses on creating a safe space for clients to do the emotional and “soul” work needed to help them prepare for their death.

“I help the individual who is dying to stay close to what is most important in the time that remains, to focus on what is possible rather than on limitation, and to support their loved ones in staying as involved as desired as things progress,” Marek said.

One of the biggest advantages of having an end-of-life doula is the continuity of care and consistent support. Patients often transition from actively seeking curative treatment to no longer receiving treatment. Some are put in hospice, and some “graduate” from hospice before their death, Marek explained.

“These are all circumstances where care teams change and support systems get disrupted and lost. Having an end-of-life doula throughout the process of end of life ensures that there is a consistent supportive foundation that remains the same,” Marek said.

Family ties can help lead to a ‘good death’

Sanders said it is best when family members are actively involved with the doula to respect the patient’s wishes.

“I try to encourage and engage families to participate in the process, especially if they are not in agreement with the process,” she said. “All input is valuable, but I like to politely remind families that this is not their death. So, the dying person’s wishes and needs come first.”

“Many times, a patient is not able to articulate their wishes, such as cases of dementia, but the patient still deserves a lasting tribute,” Sanders said.

Marek said her goal is to serve the patient even if they forget they hired her, don’t remember what they initially asked for, or have different wishes than family members.

She said her ultimate goal is to get what the patient wants — even if she is hired by family members.

Aside from bedside manner, death doulas have to run their business. Their services might be too costly for some patients, and insurance is unlikely to cover their work.

Sanders said an individual package may cover 20 hours for $700 plus an additional fee if the patient wants more time with the doula.

Marek said that prices typically are flexible and can include a weekly or monthly retainer or individual sessions and packages. An end-of-life vigil, which takes place during the active dying process, can range from $1,500 to $3,500 or so.

Leaning ‘into’ the fear

Anyone who is struggling with their diagnosis or wants to leave something behind for family, may want to seek out a death doula.

Sanders loves her job but admits that it’s hard when a patient passes away. “That part never gets easy,” she said. “I take comfort that I was able to help them transition on their terms.”

“Our culture holds so much fear around death that when we find ourselves face-to-face with it, either our own mortality or that of someone we love, we typically don’t know what to do,” Marek added. “It’s incredibly scary to face into the unknown, so most of us do our best not to.”

But Marek said ignoring real life can be harmful.

“It affects not only the person who is dying, but the entire circle that surrounds them,” Marek said.

The presence of an end-of-life doula helps people “lean into” the pain and fear of the unknown. That frees up space and energy so they can experience the emotions including actual joys that come with death. She said the doula’s experience helping others through death can ease the process for both family and patient.

“The comforting presence of a doula enables opportunities for the dying to connect more deeply with loved ones and to enjoy the time that remains, focusing on possibility rather than only on limitation, on what they can control rather than on what they can’t,” Marek said.

She said she believes that many people would benefit from having an end-of-life doula because they can help foster connections even during an emotionally painful time.

“I believe a death doula — the openhearted presence of someone who won’t turn away in the face of suffering and will offer support to help us work with it rather than fight against it — would benefit everyone at end of life.”

Complete Article HERE!

‘Death doulas’ assist people before and after death

Death doula Christy Marek talks with Mark Quinlan at Our Lady of Peace in St. Paul, Minn. on Friday, May 10, 2019. They discussed the specifics of funeral planning and the nuances of the end of life. She has followed him from the hospital to a transitional care unit, and now to the hospice.

By BOB SHAW

In the dimly lit room, Mark Quinlan struggles to be heard.

His voice box has been silenced by his thyroid cancer. He tries to whisper, but the hum of his oxygen machine drowns out the sound. The voice of the bone-thin 67-year-old barely carries to the edge of his hospice bed.

But Christy Marek is listening.

Marek, an end-of-life assistant called a death doula, leans forward to catch every word. She asks him about funerals, the afterlife and memories of happier times.

“Do you want last rites?” she asks.

The whisper: “I suppose.”

She has been with him for months, in a hospital, transitional care unit and a hospice. Every step of the way, she has guided him through a dark and scary wilderness.

In many cases, death doulas are redefining how people approach death. They are breaking away from traditional generic funerals, and pioneering approaches to grieving, memory and death.

“Death is being reimagined at this moment,” said Anne Murphy, owner of the death-consultation business A Thousand Hands.

In the past, doulas were women working as midwives to help the process of birth. “Death doula” is a term for people who help with the other end of life. They also call themselves celebrants or soul midwives.

“They all do the same thing — companioning for people dying,” said Jane Whitlock, a St. Paul death doula.

The National Doulagivers Institute reports that its training has quadrupled in two years. President Suzanne O’Brien said she has now trained 402 certified doulas in a six-month course. The cost is $997, Twin Cities Pioneer Press reported.

“I just got back from a month of training in Thailand,” O’Brien said in April. “This is needed around the world.”

Doulas-to-be are drawn to a job that that pays up to $100 an hour in Minnesota. The trainers are proliferating, with names like Doulagivers, Lifespan Doulas, Soul Passages and the National End of Life Doula Alliance.

The traveling doula schools are arriving in Minnesota.

One session starting May 31 offers a three-day program by the International End of Life Doula Association for $750. Or you could get training from the Conscious Dying Institute, which is offering three-day classes starting June 22 and September 26, for $2,995 and $1,895, respectively.

The inconsistency makes some uncomfortable.

“I look at the programs where you get certified after a weekend. It is not doing the people you work with justice,” Marek said.

“It is frankly a little bit messy.”

Doulas sometimes overlap the services of a hospice — causing some friction.

“Hospices frankly do not know what to do with the end-of-life doula role,” Marek said.

Susan Marschalk, director of the Minnesota Network of Hospice and Palliative Care, said they do not compete but must learn to work together.

“Doulas are newer, and there is some trepidation about them,” Marschalk said. She said hospices provide medical care and emotional support for dying people.

Doulas are flexible, hired by the hour. They can be employed before or after the dying process begins, helping with funerals and commemorations.

The training for death doulas is sketchy.

It’s a new vocation, with no regulations or standards. With no training whatsoever, anyone can start working as a death doula.

Sometimes they are hired months before a death, and work for months afterward. Some are called at the last minute and may help only in a person’s final hours.

“This is so new. We are all finding our way,” said Marek, of Lakeville, owner of Tending Life at the Threshold.

Being a doula is not a full-time career — yet.

“Right now there are no full-time death doulas,” said doula Whitlock. But she predicts that as baby boomers age, the demand will increase along with the number of deaths.

Doulas seeking full-time work sometimes branch out into related areas — paperwork, aging in place, consulting, or doula services for pets.

“Dying people want to put things in order,” she said. She helped a woman arrange for her ashes to be dropped into the Mississippi River from a pedestrian bridge.

Death doulas encourage doing whatever is meaningful — which can often mean breaking the rules.

For example, one dying man recently requested a wedding and an end-of-life celebration — in the same service. He was engaged, said doula Murphy, and saw the dual-purpose ceremony as meaningful.

What was meaningful at Susan Showalter’s funeral was utterly original.

Showalter, 71, of St. Paul, died in December of diabetes complications. End-of-life adviser Murphy suggested a home vigil, displaying the body for visitors to see.

About 175 mourners were served white wine and Doritos — Showalter’s happy-hour treat.

Respecting an ancient ceremony, they washed the body with washcloths and pans of water. They anointed her with oil, dabbing it on her face and hands.

The group spontaneously sprinkled rose petals to make a pathway between the body and the funeral-home van.

Once the body was gone, they shaped the petals on a table into an outline of her body. Where her feet had been, someone placed hockey socks — which she wore when her feet were cold.

The personal touches enriched the process, said her husband, David.

“This allowed us to be in charge,” he said. “We were participants, not just observers.”

“I swear at least 20 people thanked me for such a wonderful way to say goodbye.”

At other times, death doulas help celebrate the lives of the deceased — before and after they die.

On May 10, Marek hovered at the bedside of cancer victim Quinlan in Our Lady of Peace hospice in St. Paul.

She reminded him of the impact he had on his students, from 40 years of teaching at Centennial High School in Circle Pines.

One of them — Chris Roskowinski — flew from his home in Sherman Oaks, California, when he learned that Quinlan was dying.

The night before, he was taken to the opening-night play at the high school, which he had helped direct until the cancer left him incapacitated. The cast and the audience honored Quinlan — which made the occasion both happy and sad.

“Tell me, did that make it easier for you?” Marek asked. “Harder?”

After a pause, a raspy whisper rose from the bed: “Easier.” The word seemed to hang in the air.

At his bedside, Roskowinski could barely hear Quinlan speak, but nodded appreciatively.

“She can be his voice,” he said.

Complete Article HERE!

My Odd Job: I help people live a good life, up until their last breath

By Anna Lyons

Most people know what a birth doula is, but not many have heard of an end of life doula.

Sometimes we’re called death doulas, death midwives, end of life companions or soul midwives. While a birth doula provides support and guidance to mothers at the start of life, an end of life doula provides practical and emotional support at life’s end.

Often I’m called in at diagnosis when there’s an element of disbelief and panic but sometimes it’s at the last minute when someone is actively dying. Their needs can change, too – someone who doesn’t require much support in the beginning can need a lot more assistance as their illness progresses.

No two days are ever the same. One day I might be going to hospital appointments with someone I’m working with or advocating on their behalf with their medical team. Another day I might be helping children say goodbye to their mum or dad. Some days I’ll be attending funerals.

There’s a very practical side to my job. I might help someone write an Advance Directive, a will or a do not resuscitate order (DNR), and help anyone thinking about appointing a lasting power of attorney.

Disbelief often accompanies a life-limiting diagnosis. Often, in the stiflingly small consultant’s office, any words spoken after a devastating prognosis fall onto ears that are powerless to hear any more. I take extensive notes in consultants’ appointments because I know my clients will be too distressed to process it all.

One client I worked with had an amazing medical team, an incredibly supportive and present family and a big group of friends.

She contacted me because she needed someone to offload to without making her amazing support network feel inadequate or unappreciated. She wanted someone she didn’t feel she had to protect from the harsh realities of her illness and her feelings about it.

They never knew she’d sought extra help. I only found out she’d died from an online obituary.

Yet some people don’t have family and friends who can help them, or who can’t take time off from jobs that pay the bills.

Illness can also drive our friends and family away. These losses can be isolating and frightening at a time when you most need company and reassurance.

At 17, I found myself standing at the graveside of one of my nearest and dearest friends. Despite being ill for a long time, we didn’t know that he’d been diagnosed with an incurable cancer.

He knew he was going to die but didn’t feel able to tell us any of us. There was a stark clarity to sitting in that packed congregation knowing he was barely out of their teens. His death shaped my life and his silence made me decide that I wanted to help people at the end of their lives.

When I first meet people we’ll talk about what a good life looks like to them and what they would consider to be intolerable.

They’ll set out boundaries around what they consider will be the limit of their suffering, and as their illness progresses, those boundaries almost always shift.

People have described their illness as being like a huge magnifying glass, augmenting what matters most and sometimes allowing them to let go of things they realise don’t really matter.

Others have described to me the lucidity that can come with a short prognosis, how things taste and look different when you know you’ll only ever get to eat or see them a few more times. Of course, this isn’t always the case, and depression can go hand in hand with being physically unwell.

With some clients it’s more important to acknowledge just how sh*t the situation is. There’s no fix for end of life. There’s no cure. Sometimes all someone needs you to do is acknowledge how unfair what’s happening is. The most fundamental part of my job is listening: to really hear what life is like for someone, to bear witness to their pain, to sit with them in their darkest moments and to be there.

That said, I am always amazed at how people are able to find humour in the darkest of situations.

I once helped a young woman say goodbye to her father. She hadn’t been able to get to see him before he died and I accompanied her to the funeral directors.

She was distraught. She’d told me that he had always been a joker and while his lame jokes drove her to distraction during his life, they would be one of the things she’d miss most.

She started crying so I handed her a box of tissues, which she dropped. She then bent down to get it, stood up too soon and knocked his coffin, rocking him like a dingy on a rough sea. I looked up in concerned horror to find her giggling hysterically. She said he’d have loved the sitcom silliness of the moment and felt they’d shared one last laugh.

That people can smile despite, in spite, of all they are facing, that family and friends can demonstrate and show a love that’s pure and deep, is humbling to bear witness to.

I don’t really believe in the idea of a ‘good death’. Describing death as ‘good’ makes me feel I’m doing a disservice to life, to loss and to grief. My job is about helping people live a good life and that ‘living’ includes dying.

The dying, we all hope, will be as gentle and as painless as possible but it’s the living of a good life right up until your last breath, that what it’s all about.

Talk to your children about life and death, dying and grief – it is as important as talking to our children about sex and relationships. And do it now. It’s so much easier to have those conversations when everyone is well. Every adult should write a will, we should all have an Advance Directive, appoint a lasting power of attorney and sign a DNR.

I have regular supervision and therapy to help me do this job. I take time out, and I would prefer to work with fewer people and do an excellent job than take on too much and buckle under the emotional weight.

Hanging out with my three daughters and walking our silly one-eyed dog helps me keep my emotions in check. Gelato helps a lot too.

Complete Article HERE!

‘Soul midwife’ offers companionship to the dying in their final moments

Linda Jane McCurrach is an end-of-life doula – a non-medical, holistic companion who guides and helps people to have a gentle and tranquil death.

Linda McCurrach says it a privilege to do the job she does

By Maria Croce

Midwives are associated with helping to bring new life into the world. But there’s another type who are there at the end, when people are dying.

Linda Jane McCurrach is a “soul midwife” or end-of-life doula – a non-medical, holistic companion who guides and supports the dying to help them have a gentle and tranquil death.

She describes the people she supports as friends and says it’s about helping them have a “good” death. But she admits some people initially find it difficult to grasp the idea that there can be a positive side to something so finite.

Linda Jane added: “People don’t even want to think about having a good death because they can’t imagine dying.

“But in eastern culture, they believe that only by looking at our death can we live fully.”

She sees some parallels between conventional midwives who bring new life into the world and her role for the souls who are leaving.

cancer about 18 months ago, Linda Jane was able to be by her side.

Linda pictured as a baby with her late mum Myra McCurrach, who she was able to be with at her death

She said: “I couldn’t imagine my mum not having someone there. I thought, ‘What would it be like for someone to be on their own?’ It really struck home that I can help people going through this alone.”

Linda Jane has now launched a charity called No One Dies Alone Ayrshire.

For those who are alone, it aims to provide companions in the last 48 hours of life. It also offers respite for those with families.

Companions will offer support at home, in care homes, in hospital and hospices and will enable people to die according to their wishes.

The charity has started its work in East Ayrshire with plans to expand into the rest of the county.

Linda Jane, 48, has five children – Jordan, 23, Lewis, 22, Kai, 17, Nathan, 15 and Freya, eight – and lives near Newmilns in Ayrshire.

Having had difficult experiences and relationship break-ups, she said death puts everything else into perspective.

She added: “You have a greater sense of what’s important.”

The hardest part of her role is when people open up to her in their final days.

She said: “It can be hard to then move back into a normal life. But I surround myself with the right people who help me with that.”

She remembers the first time she sat with someone who was dying.

Linda Jane said: “I was concerned with doing everything right. It wasn’t until the end I realised it’s not really about the stuff you know and the things you can do, it’s about being there.

“Death is individual. It’s not scary. But if the person is feeling a bit scared, you can be a loving presence to help them get through.”

She said the dying want to know what’s happening to them.

Linda’s beloved mum Myra McCurrach who died from cancer 18 months ago

Linda Jane added: “People want to know the process. It’s not commonly spoken about.”

She also helps them make peace with the world.

“Ultimately, death is the major letting go in our lives,” she said. “We have to let go of everything and it starts with letting go of the past.

“Sometimes they need to get things off their chest or make amends with family members and things weighing heavily with them.

“And everybody wants to know where they’re going to go afterwards. Having a visualisation of somewhere they would like to go really helps with that, for instance a meadow full of bluebells.”

Although she’s less scared of dying herself now, Linda Jane said she wouldn’t want to leave her children yet.

She added: “I think hopefully by the time I die, I’ll be ready. I know death can be positive and beautiful.”

Complete Article HERE!

Review: The Art of Dying Well – A Practical Guide to a Good End of Life

Author photo Katy Butler and book cover

By Trish Rodriguez*

I have to confess that I am a Katy Butler fan. When I started the journey to become an End of Life Doula, her Knocking on Heaven’s Door was one of the first books that I read. I didn’t so much read the book as devoured it, often catching a sob in my throat as I read her deeply personal account of the horror show that became her fathers final years. I admired the courage and honesty of the parts of the book that were memoir, and the research on the current culture of American healthcare with respect to death. I agreed that our way of dying in the good ol’ USA has come to leave something to be desired.

In her newest work The Art of Dying Well – A Practical Guide to a Good End of Life, Katy picks up the narrative in a new and accessible way. She divides the process of moving toward the end into seven unique segments defined not so much by age but by ability and functionality. At the beginning of each of these chapters she has a list of statements and suggests that if many of these apply to you now, this might be where you find yourself. I found this approach fresh and, best of all, non-threatening. This might be just the way to start a conversation with a unwilling family member.

In the first segment, aptly titled Resilience, we learn that in this stage of well being we can still dramatically impact our health, longevity, and ultimately the quality of our death. By building reserves (aka altering what we eat and whether we’re active enough), finding allies in preventative medicine, and increasing our circle of friends and acquaintances, we are still in the drivers seat with regard to how things will go for us as our situation changes. This perspective gives lots of practical advice for those who may think there is plenty of time.

With each ongoing chapter comes an inevitable decline – not according to any decade of life or disease process – but according to naturally decreasing functionality. I like that she is careful to follow this definition, as people age as they darn well please, and I personally know 90 year olds who are still more capable than I am. This lets you find your home page, so to speak, without feeling like a failure or self fulfilling a prophecy to act your age. Every chapter offers practical advice; about healthcare, money, housing, and all those pesky details like advanced directives and wills. In nearly every chapter there are personal accounts of folks who managed things well, or not so well, and lots of food for thought.

There was a great deal of material that wasn’t new to me, but I work with dying  people. In my every day life, I am always shocked at how hard working, responsible people don’t bother with a will or advanced directive… because? They aren’t going to die? Or they’re not going to die tomorrow? This book may be just the ticket to get you going, or to give to that parent who is dragging their feet about preparing for anything. With a helpful glossary and pages and pages of useful references included, this will certainly be a ‘go to’ book in my personal library and in my practice.

* Special correspondent, Trish Rodriguez,  is an End of Life Doula and hospice vigil volunteer in Anacortes, WA.

How the Death Positive Movement Is Coming to Life

From joining coffin clubs to downloading apps like WeCroak, here’s how a growing number of people are living their best life by embracing death.

Are you ready to join the death positive movement?

by Stephanie Booth

Taking a dirt nap. Biting the big one. Gone — forever.

Given the gloom and painful finality with which we speak about death, it’s no wonder that 56.4 percent of Americans are “afraid” or “very afraid” of the people they love dying, according to a Chapman University study.

The cultural mindset is that it’s something terrible to be avoided — even though it happens to all of us.

But in recent years, people from all walks of life have begun to publicly push back against that oxymoronic idea.

It’s called the death positive movement, and the goal isn’t to make death obsolete. This way of thinking simply argues that “cultural censorship” of death isn’t doing us any favors. In fact, it’s cutting into the valuable time we have while we’re still alive.

What does that look like, exactly?

This rebranding of death includes end-of-life doulas, death cafes (casual get-togethers where people chat about dying), funeral homes that let you dress your loved one’s body for their cremation or be present for it.

There’s even the WeCroak app, which delivers five death-relevant quotes to your phone each day. (“Don’t forget,” a screen reminder will gently nudge, “you’re going to die.”)

Yet despite its name, the death positive movement isn’t a yellow smiley face–substitute for grief.

Instead, “it’s a way of moving toward neutral acceptance of death and embracing values which make us more conscious of our day-to-day living,” explained Robert Neimeyer, PhD, director of the Portland Institute for Loss and Transition, which offers training and certification in grief therapy.

Death as a positive mindset

Although it’s hard to imagine, what with our 24-hour news cycle that feeds on fatalities, death hasn’t always been such a terrifying prospect.

Well, at least early death was more commonplace.

Back in 1880, the average American was only expected to live to see their 39th birthday. But “as medicine has advanced, so has death become more remote,” explained Ralph White.

White is the co-founder of the the New York Open Center, an inspired learning center that launched the Art of Dying Institute. This is an initiative with a mission to reshape the understanding of death.

Studies show that 80 percent of Americans would prefer to take their last breath at home, yet only 20 percent do. Sixty percent die in hospitals, while 20 percent live their last days in nursing homes.

“Doctors are trained to experience the death of their patients as failure, so everything is done to prolong life,” White said. “Many people use up their life savings in the last six months of their lives on ultimately futile medical interventions.”

When the institute was founded four years ago, attendees often had a professional motivation. They were hospice nurses, for instance, or cancer doctors, social workers, or chaplains. Today, participants are often just curious individuals.

“We consider this a reflection of American culture’s growing openness to addressing death and dying more candidly,” White said.

“The common thread is that they’re all willing to engage with the profound questions around dying: How do we best prepare? How can we make the experience less frightening to ourselves and others? What might we expect if consciousness continues after death? What are the most effective and compassionate ways of working with the dying and their families?”

“The death of another can often crack us open and reveal aspects of ourselves that we don’t always want to see, acknowledge, or feel,” added Tisha Ford, manager of institutes and long-term trainings for the NY Open Center.

“The more we deny death’s existence, the easier it is to keep those parts of ourselves neatly tucked away.”

Death as a community builder

In 2010, Katie Williams, a former palliative care nurse, was attending a meeting for lifelong learners in her hometown of Rotorua, New Zealand, when the leader asked if anyone had new ideas for clubs. Williams did. She suggested she could build her own coffin.

“It was a shot from somewhere and totally not a considered idea,” said Williams, now 80. “There was no forward planning and little skill background.”

And yet, her Coffin Club generated massive interest.

Williams called up friends between the ages of 70 and 90 with carpentry or design skills she thought could be useful. With the help of a local funeral director, they began building and decorating coffins in William’s garage.

“Most found the idea appealing and the creativity exciting,” said Williams. “It was an incredible social time, and many found the friendships they made very valuable.”

Pearl, a New Zealand Coffin Club member, poses with her pet chicken in her decorated coffin.

Nine years later, although they’ve since moved to a larger facility, Williams and her Coffin Club members still meet every Wednesday afternoon.

Children and grandchildren often come too.

“We think it’s important that the young family members come [to] help them to normalize the fact that people die,” explained Williams. “There’s been so much ‘head in the sand’ thinking involved with death and dying.”

Younger adults have shown up to make coffins for terminally ill parents or grandparents. So have families or close friends experiencing a death.

“There’s lots of crying, laughing, love and sadness, but it has been very therapeutic as all ages are involved,” said Williams.

There are now multiple Coffin Clubs across New Zealand, as well as other parts of the world, including the United States. But it’s less about the final product and more about the company, Williams pointed out.

“It gives [people] the opportunity to voice concerns, get advice, tell stories and mingle in a free, open way,” said Williams. “To many who come, it’s an outing each week that they cherish.”

Death as a life changer

Janie Rakow, an end-of-life doula, hasn’t just changed her life because of death. She helps others do the same.

A corporate accountant for 20 years, Rakow still vividly remembers being mid-workout at a gym when planes struck the World Trade Towers on September 11, 2001.

“I remember saying to myself, ‘Life can change in one second,’” said the Paramus, New Jersey, resident. “That day, I wanted to change my life.”

Rakow quit her job and started volunteering at a local hospice, offering emotional and spiritual support to patients and their families. The experience profoundly changed her.

“People say, ‘Oh my gosh, it must be so depressing,’ but it’s just the opposite,” Rakow said.

Rakow trained to become an end-of-life doula and co-founded the International End of Life Doula Association (INELDA) in 2015. Since then, the group has trained over 2,000 people. A recent program in Portland, Oregon, sold out.

During a person’s last days of life, end-of-life doulas fill a gap that hospice workers simply don’t have the time for. Besides assisting with physical needs, doulas help clients explore meaning in their life and create a lasting legacy. That can mean compiling favorite recipes into a book for family members, writing letters to an unborn grandchild, or helping to clear the air with a loved one.

Sometimes, it’s simply sitting down and asking, “So, what was your life like?”

“We’ve all touched other people’s lives,” said Rakow. “Just by talking to someone, we can uncover the little threads that run through and connect.”

Doulas can also help create a “vigil plan” — a blueprint of what the dying person would like their death to look like, whether at home or in hospice. It can include what music to play, readings to be shared aloud, even what a dying space may look like.

End-of-life doulas explain signs of the dying process to family and friends, and afterward the doulas stick around to help them process the range of emotions they’re feeling.

If you’re thinking it’s not so far removed from what a birth doula does, you’d be correct.

“It’s a big misconception that death is so scary,” said Rakow. “99 percent of the deaths I’ve witnessed are calm and peaceful. It can be a beautiful experience. People need to be open to that.”

Complete Article HERE!