I’m a death doula

– These are the most common regrets people have before they die

From staying in sexless relationships to putting off downsizing, these are the issues that come up time and time again

By Sadhbh O’Sullivan

There are few as well acquainted with the dying, and their regrets, as death doulas. Also known as end-of-life doulas, they provide support to people through terminal or life-limiting illnesses by improving their quality of life, and death.

This encompasses everything from helping with logistics to providing emotional support to those at the end of life and their loved ones.

i spoke to three death doulas to understand the biggest regrets of the dying, the living who love them, and steps we could take to avoid those same regrets and have a better end of life.

Staying in unhappy (and sexless) relationships

Emma Clare, who is a chartered psychologist and death doula, says that the most common, though unspoken, regret she hears is about relationships.

“I often hear people say that they wish they’d left either unfulfilling or unhappy relationships sooner. A lot of people have regrets about spending a large part of their life in situations that didn’t feel true to themselves or have any fulfilment.”

She says when we’re confronting death, we feel a lack of intimacy and closeness acutely – including sexual intimacy.

“As humans we look for intimacy and that doesn’t go away because we’re dying. If anything, it increases because people are aware they have a limited time left and they want to have that connection with other people.”

Not downsizing or decluttering

“We all know we’re going to die, but we just put it to the side, even with a terminal diagnosis,” says Jane Depledge, a doula based in North Powys, Wales. When patients are told that treatment is going to stop, that lack of preparation “hits them”, she says. Getting a will in place, transferring over health insurance, or discussing their wishes are all simple things that we don’t want to face, but will feel better for it.

Emma Clare adds that this includes very practical decisions.

“People wish they’d downsized their home earlier and cleared out their stuff, and now they’re aware their often adult children are going to have to deal with that and feel a big sense of guilt. That means regret from the family too: they’re then left sorting that out and haven’t had the conversation about what was and wasn’t treasured and should be kept.”

Being in hospital instead of at home

“People often don’t realise they have choices”, says Depledge, so when a person is dying they panic and send them to hospital. Though for some people hospital care is essential, she says it is always worth asking and looking into ways their loved one could die at home.

Not being prepared

The emotional and physical burden of caring for someone at the end of life can take its toll on both the carer and the patient, who may feel huge guilt at being ‘a burden’. People often regret being inadequately prepared for everything that needs juggling, and not realising what support they can get.

“Carers can claim immediate Government grants to care for someone who is dying,” explains Depledge. “Knowing that could have enabled someone to take time off work or give up work to care for and be with a loved one.”

Not being able to say goodbye to friends

When a person is dying, they tend to want to surround themself with the things and people they love most – but so often, they are lonely, says Depledge.

“I think a lot of people avoid visiting people when they get a terminal diagnosis because they worry they don’t know what to say,” she explains. “But actually I hear a lot of upset from the people who are dying, saying that they feel like their friends have gone quiet or disappeared and they feel very lonely. And that’s needlessly lonely because at the funeral there are lots of people there.”

Not saying how you really felt

Amanda Waring, a death doula working in West Sussex says that the biggest regret she comes across is from people who feel they didn’t “heal their relationship, or speak frankly”.

“Regret stems from a lack of honesty. This is true even for exceptionally difficult conversations where someone has wronged the other and the only catharsis is if you bring it into the open and it takes a lot of courage.”

She says this can range from apologising for harsh words spoken at a bedside, to being honest about deeper rooted, historical conflicts, to sharing feelings of love and pride that were perhaps not made clear before.

“Bravely speaking up and trusting your gut is the key to avoiding all regrets really,” adds Emma Clare.

Complete Article HERE!

Death doulas

— Helping people at the end of their life

By

You may have heard of a birth doula – someone who provides non-medical support and advocacy throughout pregnancy, birth and after the baby has been born. More recently, so-called death doulas – people who assist at the other end of the lifespan – have been growing in popularity.

The role of death doulas is still relatively new, so the terminology and definitions of what they are based on what they do are in flux. They are sometimes referred to as an end-of-life doula, soul midwife, death coach, dying guide, death midwife and palliative care doula. The actual term used is often down to the preference of the practitioner and how they define their work, as well as cultural norms within the country they work in.

Death doulas are known to work in Brazil, Canada, the Czech Republic, Germany, Ireland, Italy, Japan, New Zealand, Russia, the UK and the US. They tend to provide support to people with life-limiting or terminal illnesses, focusing on improving both the quality of life and the quality of death someone experiences. This can include helping with funeral plans, talking about the processes involved around death, or helping someone with their care appointments.

Sometimes, the doula’s contribution is simply about being next to the person and providing company.

The work of a death doula can extend beyond the dying person. They can provide emotional and social support to family, friends and even neighbours – typically the informal carers and social network surrounding the dying person.

Doulas help those close to the dying person with the impending loss (so-called anticipatory grief). Some also carry out errands and chores to enable them to spend time with the dying person. They may also continue to visit those people after the death to support them as they grieve. Crucially, death doulas can enhance the links between professionals and the social support around a person by helping with communications and advocacy work.

Filling the gap

With healthcare systems and informal carers typically stretched beyond capacity, death doulas can provide a means to fill the gap and provide personalised attention. Someone can access doula support either privately or, depending on the doula, through voluntary means.

My colleagues and I recently examined how end-of-life doulas can be provided by the NHS. It noted that the flexibility of the services doulas can provide was not only helpful for the dying person but also for the wider healthcare system. It helped people who may otherwise not receive support due to service gaps, strict referral criteria, or lack of social support.

Beyond supporting individuals, some death doulas see community engagement as core to their role. They are keen to share information about the dying process and grief with others. They may host workshops or death cafes. Across this work, their contributions are to normalise talking about death, dying and loss in society.

Anyone can become a death doula, and it is not currently a regulated profession. There is a wide range of doula training available internationally, including online, provided either by individual doulas or by organisations such as Living Well Dying Well.

People at a death cafe
Death cafes give people the space to talk about the ultimate taboo.

Personal experience

In addition to their doula training, doulas bring their own professional and personal experience to the role. International research on death doulas has noted that many who have become death doulas have a background in professional healthcare, social care or education, and may already have some experience with death.

Those who have trained to be a death doula can be eligible to join a community of practice. Within the UK, End of Life Doula UK is a membership organisation for doulas, setting standards for doula practice and representing doulas. Similar organisations exist globally, including the International End of Life Doula Association.

Death doulas are not a replacement for specialist palliative care and cannot prescribe drugs. Their role is to support people in having a good death.

The growing demand for death doulas is one example of how society is questioning what a good death can be and how to make it happen. Other examples include discussions about assisted dying and improving death literacy. Rather than consider death a societal taboo, there is a growing recognition that people want to value the end of life and reshape how it is experienced.

Death doulas can play a pivotal role in supporting a dying person and those around them. Their support can be emotional and practical, often bridging the gaps in existing support or helping to signpost to relevant services. Not everyone may want a doula, but those who do may see it as someone who can guide them through a significant life process.

Complete Article HERE!

Demand for death doulas has soared.

— Here’s how they help patients go with grace.

By Stacey Colino

What does it mean to have the “best possible death?” A growing number of end-of-life doulas are helping patients and families figure that out.

When Jerry Creehan was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in January 2017 at age 64, he and his wife Sue knew they were facing a rough road ahead. For more than a year, Jerry had struggled with his balance and had been falling, unable to get up. ALS (formerly known as Lou Gehrig’s disease) is a progressive neurological disorder affecting nerve cells in the brain and spinal cord that regulate voluntary muscle movement, breathing, and other bodily functions; it eventually leads to paralysis and death.

In 2020, his condition began declining and he became reliant on eye gaze technology to move his wheelchair, and on a non-invasive ventilator to breathe. While attending a support group at the ALS Clinic at Virginia Commonwealth University, Sue heard Shelby Kirillin, an end-of-life doula, speak. Kirillin, a former nurse specializing in neurotrauma, spent two decades working in intensive care units, where she saw “how ill-prepared people are for the end of life. People don’t know how to talk to people with a terminal diagnosis. I thought we could do better.” That’s what inspired her to become an end-of-life doula in 2015.

“We knew we were in the final stages of ALS, and even though Jerry wasn’t afraid of dying, we needed someone to help us talk about it,” recalls Sue, a wound-care nurse consultant in Richmond, Virginia. “He wanted it to be the best possible death it could be, pain-free, and not filled with anguish.”

Many people are familiar with labor doulas, postpartum doulas, and maybe even abortion doulas, who provide support for people dealing with challenges related to ending a pregnancy. By contrast, end-of-life doulas work with those on the verge of dying, and their families. Also called death doulas, these professionals used to be rare but that changed during the COVID-19 pandemic. Since the virus began wreaking havoc, organizations that support and train death doulas in the U.S. have grown. In 2019, the National End-of-Life Doula Alliance (NEDA) had 260 members in the U.S.; membership grew to 1,545 doulas as of January 2024. Research has found that end-of-life doulas are most active in Australia, Canada, the United Kingdom, and the United States.

“During the pandemic, people were facing their own mortality more than at any other time because there was a lot of dying and grief happening,” says Ashley Johnson, president of NEDA, which is based in Orlando.
Offering various forms of support

Generally end-of-life doulas provide non-medical, compassionate support and guidance to dying people and their families. This includes comfort and companionship, as well as social, emotional, spiritual, and practical support (such as household help or running errands), depending on the provider’s strengths and the patient’s needs. Some end-of-life doulas help with estate planning, end-of-life care planning, or legacy planning. Others focus on helping people create an ambiance they want for their last days, facilitate difficult conversations between clients and their loved ones, or help with grief counseling with survivors.

“People don’t want to talk about death—they’re so afraid of it,” says Elizabeth “Like” Lokon, a social gerontologist who recently retired from the Scripps Gerontology Center at Miami University in Ohio and is now training to become a death doula. “As a social gerontologist, I want to bring it out from hiding and help people accept it. In some cultures, the denial of death, the separation between the dying and the living, is not as severe as in some western countries,” adds Lokon, who grew up in Indonesia.

“We labor into life, and we labor out of life,” says Kirillin. “All of us are born with life and death walking next to us.”
Changing the approach to death

Since it was formed in 2015, the International End-of-Life Doula Association (INELDA) has trained more than 5,600 doulas around the world, but the practice and training of death doulas varies considerably. There isn’t a universally agreed upon description of this type of care or federal regulations in the U.S. for becoming an end-of-life doula or oversight of their work. A study in the journal Health & Social Care in the Community concluded that the lack of a business model for death doulas creates inconsistencies in the services death doulas offer and what patients and their families can expect.

For example, INELDA offers a 40-hour training that focuses on the foundations of doula work and support for the dying. By contrast, NEDA is a membership organization that offers micro-credentials after doulas show their knowledge and proficiency in the skills involved. Other training programs offer four-week in-person courses, 12-week online courses, six-week programs, and other formats.

There’s also no standardized fee structure for end-of-life doulas: It typically ranges from $20 to $100 per hour, depending on the location and range of services that are offered, Johnson says. And some death doulas offer a sliding scale of fees or do it voluntarily, on a pro bono basis. Their services are not covered by insurance.

Regardless of how they’re trained or paid, many death doulas find the practice meaningful and fulfilling.

“People find it profoundly moving—some people use the word honor or sacred,” says Douglas Simpson, a trained end-of-life doula and executive director of INELDA. “End-of-life doulas help people take control of what their death looks like … It’s very fulfilling and not as depressing as people think.”
During the pandemic, Julia Whitty, a writer in Sonoma County, California, who had done volunteer hospice work earlier in her life, trained to become an end-of-life doula because her mother and a friend were on the verge of dying. She wanted to be better prepared personally, and she wanted to help other people with a terminal diagnosis in her social sphere.

“It’s a two-way relationship because you’re learning something from someone who’s coming to their end,” says Whitty, “and hopefully you’re helping them manifest what they want in their last days—physically, emotionally, socially, and spiritually.”

Among the things end-of-life doulas don’t do: administer medicine, monitor vital signs, make or recommend medical decisions for the client, impose their values or judgments on clients, or act as therapists.

“We meet people where they are—we come in holistically and help them navigate the final stages of life,” Johnson says. “It’s helping people face their own mortality with dignity. We’re promoting death positivity, decreasing the stigma.”
Creating a peaceful ending

Eleven months before he passed away, Jerry Creehan was put into hospice care and his wife Sue contacted Kirillin who worked with them once or twice each month for an hour at a time then more often as his condition deteriorated.

At first, Kirillin helped them talk about what death looks like and how Jerry could “own” his death. Sometimes she’d spend time just with Jerry, other times just Sue, and sometimes with both of them. As Jerry got weaker, Kirillin helped him come up with rituals to do with loved ones; she talked to Jerry about what he wanted his legacy to be and helped him write letters to loved ones. With Kirillin’s guidance, they created a detailed plan for his funeral and he designated personal belongings to be given to people he loved on his last night. Kirillin suggested they send an e-mail to friends and family members asking them to share memories and photos of time spent with Jerry.

“We got a wonderful response and put together a legacy journal,” recalls Sue who has three adult children and six grandchildren with Jerry. “I would read it to him, and it was very consoling to him to know that he had an impact on people’s lives.”

On his last evening, May 2, 2022, his breathing had become very difficult. There were 19 people in the bedroom, and someone opened a prized bottle of pinot noir to be used for communion with everyone present. Jerry was a certified wine educator, a foodie, an avid golfer, traveler, and a devout Christian, according to his wife of 46 years.

“He turned to me and said, Sweetie, I think it’s time,” she recalls. They kissed and hugged each other—family members helped put his arms around her—and Jerry said to Sue, “I love you. I always have and I always will. I’ll see you soon.” Then he winked at her and closed his eyes, she recalls. His ventilator was turned off and he passed away.

Afterwards, Kirillin and the hospice nurse stayed with him, bathed him, dressed him, and prepared his body for the funeral home.

“We did everything the way he wanted it to be done—that was a big gift to my family,” says Sue.

The Creehans’ experience isn’t unusual. In a study published last year in Palliative Care and Social Practice, researchers interviewed 10 bereaved family members about their experiences with a death doula and found that it was overwhelmingly positive. The most valuable benefit families gained was an increase in death literacy, including the ability to talk openly about death, which helped them feel empowered to care for their loved ones at the end of life. There was also a positive ripple effect as families spread the word about the benefits of using a death doula.

“People don’t want to wait for death to come and get them—they want to play the hand they were given the best they can,” Kirillin says. “We’re all going to die. I can’t change that. But I can help someone end the last chapter of their life the way they think they should. And I will sit next to them as they own it.”

Complete Article HERE!

Message From A Death Doula

— Everyone Needs A Death Plan (Not Just A Will)

By Hannah Frye

Death is a taboo subject in American culture. So much so that, by the time someone close to you passes, you may not have any idea how they want their affairs handled.

But according to death doula Alua Arthur, getting an “end-of-life plan” in place can make death easier to think and talk about at any age. And this plan goes far deeper than the financial and logistical items covered in a will.

Here’s how Arthur recommends making your end-of-life plan and the benefits it can bring for a well-lived life.

What is an end-of-life plan?

Arthur thinks everybody should have an-end-of-life plan. While the exact contents will be unique to each person, here are some items she recommends including:

  • Your end-of-life care: When you’re nearing the end, what kind of environment do you want to be in? Where would you like to be? What type of food do you want to eat? How do you want to feel? This will help your loved ones make the best decisions for you if you’re physically unable to. 
  • Your body & funeral service: What do you want done with your remains? Do you want a funeral? What does it look like? Any places you’d prefer not to have it? If you don’t know your options, consider looking into it. There are so many innovative and beautiful ways to handle remains you probably haven’t heard of yet. 
  • Your possessions & financial affairs: This tends to be covered in a will, but can be included in your end-of-life plan as well. 
  • Your pets & non-relative dependents: Are there any living beings you take care of that you want to pass on information about but may not be included in your will? If so, add a plan for them in this document. Consider pets here if you have any.

Now, it’s important to remember that these end-of-life plans are meant to change and evolve with you. 

If you learn about a new burial service that interests you, add it to the document. If you went to a funeral and saw something you wouldn’t want for yourself, put it in your document. This way, when you do eventually pass, your loved ones will know it’s up-to-date with your honest wishes.

Why are end-of-life plans important?

For those who prefer to shy away from discussions about death, don’t worry—you’re not alone. But here are a few reasons that making an end-of-life plan and talking more openly about death can actually help us live healthier lives:

1. Too often, we see death as “a failure”

Shoshana Ungerleider, M.D. has a unique perspective on death as an internal medicine physician and the founder of End Well–a nonprofit on a mission to change how the world thinks about the end of life.

Ungerleider says some of the strong distaste toward the topic stems from how Western medicine views death in a hospital setting. “It’s partly because we as doctors see death very, very often as a failure. And we try to do everything we can to avoid failure in medicine,” she explains.

But in the end, she notes, “Death keeps us awake to our lives.” By pushing thoughts of death away, we can actually increase the power they have over us. Making an end-of-life plan is a way to accept death for what it is and take away some of the stigma that surrounds it.

2. Speaking about it can help with death-related anxiety

On an individual level, death can be scary and anxiety-inducing to think about. The unfortunate truth is that we don’t control how we pass or when. But, what you can control (at least a little bit) is how your death is handled, hence the freeing effect of the end-of-life plan.

Knowing this part of the equation is sorted can actually bring an element of known to the unknown, potentially easing death-related anxiety.

3. A plan can help support your loved ones when the time comes

Having these big questions answered ahead of your death is a service to your loved ones who will care for you in your final days. By taking some of the work off your loved ones’s plate through pre-planning, you’ll help them grieve your passing with just a bit less stress related to logistics. Think of it as paying it forward to those who will care for you during this time.

Though it may not be accessible for everyone, working with a death doula could also prove helpful for you and your loved ones (and you can even request that in your end-of-life plan).

4. Acknowledging death can make you more present

Your considerations around death don’t need to stop once you wrap up your end-of-year plan. Instead, Arthur strongly recommends that everyone start talking about death more often. This doesn’t need to involve serious sit-down conversations. In fact, sometimes easing into it with casual topics can take away the initial shock and overwhelm.

Having more casual conversations around death can improve your quality of life and presence. Ungerleider notes that her colleague Lucy Kalanithi, M.D., often says that living and dying aren’t separate things. We’re doing both at the same time. This perspective can make death a bit less scary and unfamiliar since it reminds us that while we are living every day, we are dying every day, too.

Death keeps us awake to our lives

Making an end-of-life plan probably won’t make you completely fearless when it comes to death. But there’s a chance that it can ease your anxiety around it a bit, as well as provide support to your loved ones.

5. Don’t be afraid to ask for help

If you feel strong anxiety or fear when you think or speak about death, consider reaching out to a therapist for help. They can guide you through difficult emotions that come up and process any potential trauma that could be impacting your fear of death.

The takeaway

Death doula Alua Arthur recommends making an end-of-life plan that includes preferences related to remains, funeral services, how you’ll be cared for in your final days, and other important considerations that may not be covered in a will. If you find the topic of death uncomfortable to talk about, you’re not alone. However, getting familiar with your wishes and desires may benefit your mental health and presence, and help those around you in the long run.

Complete Article HERE!

End-of-life doulas are changing conversation around death in Central Oregon

By Genevieve Reaume

We’re all going to die. While we don’t know when or how, the sun will set on each of our lives.

American culture struggles with this, in turn making the inevitable insufferable. This is where end-of-life doulas are breaking new ground.

Cheryl Adcox has been working as an end-of-life doula in Central Oregon since 2018. That’s when the registered nurse opened Hand-in-Hand End of Life Doula Services. For her, death is “sacred and it’s magical and it’s part of the mystery of life.”

It’s a view that few people understand. It’s one these death doulas understand intimately.

“Part of this is about normalizing conversations around death, dying, loss, grief,” Elizabeth Johnson, the Executive Director of the non-profit Peaceful Presence, said.

Johnson opened Peaceful Presence, which offers end-of-life doula care, in 2019. It was founded just before COVID-19 shut down the world, but thrived as the world began to see death more regularly through the pandemic.

What are end-0f-life doulas?

End-of-life doulas are caregivers who help people find peace with the circle of life. Most often, they work with people who are dying, along with their families. But they also help healthy people come to terms with life’s inevitable end.

Erin Walker is one of those people who was deeply impacted by death during the pandemic. Before this, she hadn’t had any real life-changing relationship with death.

“I hadn’t had anybody close to me die,” Walker explained.

When her husband, Hans, became gravely ill in 2021, shortly after the two welcomed their first daughter, Harper, she had to handle death head-on.

“He didn’t care about what people thought, in the best way,” Walker said, describing her husband.

Erin Walker
Erin Walker

Hans was diagnosed with stage-four liver cancer in the middle of a pandemic. An already challenging time was made nearly unbearable.

The two decided an end-of-life doula could help them navigate this foreign path. The decided to work with Peaceful Presence.

“An end-of-life doula is a non-medical companion to someone,” Johnson explained. “We do a lot of legacy work, life review work.

Doulas treat the family, not just the patient

For Johnson, the goal of a doula is to help families like Walker’s deal with death and all the logistics that come with dying. They treat the whole family unit, not just the patient, in a way that compliments medical care received in the hospital and hospice.

Walker said Hans was afraid of being alone as he got closer to death. Walker had to balance both being a wife and mom. Sometimes she couldn’t do it all, having to leave her husband in the hospital or hospice to take care of their daughter.

With Peaceful Presence, Hans didn’t have to be alone during these moments. As Walker explained, the doulas were “there to just be there, to just be that person in the room for when and if Hans woke up, to be present with him.”

Walker also got essential support.

“They’re there to hold your hand. They’re there to hug you when you’re crying. They’re there to get you tea,” Walker explained. “It was having people to call — not the friend, not the sister, not the people with baggage or their own relationships with Hans.”

In September of last year, Hans died. Memories of him sit on shelves and side tables throughout their Sisters home. His urn is below a pair of paintings the couple did together. His death still isn’t easy to talk about, but through the experience, she found a greater understanding of life.

“It can be a traumatic experience to have someone die, or it can be something that you can talk about and that you can share with others and that you can connect with them on,” Walker said.

That connection is catching on in Central Oregon.

“We actually have a lot of hospice and palliative care professionals who come and say, ‘I was in medical school. I learned a lot, but I didn’t learn, you know, some of these ways of just being with somebody during this end-of-life window,’” Johnson explained.

Johnson said when she joined the National End-of-Life Doula Alliance board pre-pandemic, they had about 250 members. She says that’s grown to more than 1,500. International End-of-Life Doula Association says it had a 36% increase in learners between 2021 and 2022.

Adcox has found, since starting Hand-in-Hand back in 2018, that people are more willing to have these death conversations.

“People are much more receptive to it now than when I first started,” Adcox explained.

Cheryl Adcox
Cheryl Adcox

Death Cafés come to Central Oregon

In 2018, in addition to starting the doula service, she began hosting Death Cafés. The practice, which originated in Europe, offers free, public meet-ups just to dish about death.

“We have people in their late seventies, early eighties. We have people in their early twenties,” Adcox said of the cafes. “It’s so beautiful that we can all sit in a circle and share this one commonality that we all have as human beings.”

The meet-ups happen about once a month, except during the summer when they are paused. They’re also now sponsored by Deschutes Public Library. Plus, with their popularity, Adcox has expanded the cafes beyond Bend to Redmond.  The next Death Café is on January 30. Adcox says this work is a part of a growing “death-positive movement.”

It’s a mission Peaceful Presence is also on. One way they help people of all ages and health do this is through their guidebook End Notes.

“What are all the life logistical things I might wanna have in place if I were to die tomorrow? What do people need to know about my life, right?” Johnson said, explaining End Notes. “Are there letters that you want to write? Are there things you want to communicate? Are there places where you need to ask forgiveness?”

Johnson also notes that the work is expanding across Oregon. Thanks to funding from three different foundations, Peaceful Presence is going to rural Oregon communities, not necessarily to establish more end-of-life doulas there but to embed the doula training into existing professions, helping people better handle death.

Elizabeth Johnson
Elizabeth Johnson

By May, Johnson says they’ll have trained 60 people in rural Oregon communities.

The death doulas, cafes and guidebooks — all changing the conversation around death in Central Oregon. Helping people, like Walker, change their perspective on dying.

“Do you feel like having worked with a doula that your perspective on death has changed?” I asked Walker.

“Yeah. I have a lot less fear, which I didn’t even know I was holding before,” Walker responded.

Complete Article HERE!

‘People didn’t realise a funeral could be so beautiful’

— Poland finds a new way to celebrate life – and death

Mourner Malgorzata (right) thanks celebrant Emilia Mandes for a perfect funeral: ‘Maybe I’ll go on such a journey myself …’

More and more Poles are turning away from traditional funeral rites. But what can replace them? Enter the Institute for the Good Death, grief doulas, ‘death cafes’ and music by Whitney Houston

By Katarzyna Piasecka

“Then, feeling really sorry for himself, he exclaimed: ‘There is fucking nobody to help me,’” reads Emilia Mandes, and the crowd bursts into laughter. They look at each other, nodding – this story has already become a family legend. But this is not an anecdote about a drunk uncle at a wedding. I am at a funeral: a special ceremony to say goodbye to Jan Ledwoń, who died in October at the age of 74.

Despite taking place in Elbląg, a medium-sized city in the north of Poland, it doesn’t feel like a typical Polish funeral. Instead of wreaths, people have made donations to a local animal shelter; instead of dirges, Leonard Cohen’s Tonight Will Be Fine is playing; and instead of a formally robed and solemn priest, there is Mandes, a professional celebrant, dressed modestly in black, and hugging the family and friends.

We are in a humble chapel next to the cemetery, with about 30 mourners, including Ledwoń’s daughter Kasia, who reached out to Mandes and organised most of the funeral. The chapel has allowed only half an hour for this farewell, but it is enough time for Mandes to deliver an emotional and moving speech about Ledwoń. As well as honouring his coarse language and crisp sense of humour, it reveals things that his friends weren’t aware of – that his parents wanted him to become a priest, for instance. Or that, when his father died, he promised his mother that he would replace him.

Such a ceremony is still a rarity in Poland, a predominantly Catholic country, in which the church has monopolised the celebration of most rites of passage. Although fewer and fewer Poles participate in religious rituals, they are still reluctant to give up traditional church ceremonies such as funerals or children’s baptisms. But recent years have brought changes: the Catholic church is in crisis and many Poles are turning to non-religious forms of spirituality, and as in other countries, there is now a growing “death positive” movement.

“The first ceremony I officiated at was the funeral of my husband. He died by suicide,” says Mandes, 47. “I wanted to respect his wish, in his final letter to me, to disappear unnoticed and avoid the ‘church circus’. Moreover, both of us left the institution a long time ago and our children are not connected with the church either.”

Mourners escort Jan Ledwoń’s ashes to the grave in Elbląg, northern Poland.
Mourners escort Jan Ledwoń’s ashes to the grave in Elbląg, northern Poland.

Mandes explains that her husband had depression, which he refused to acknowledge. It eroded their marriage and she decided to move on. “And then he decided to move on, as well,” she says. Two weeks spent with her husband in hospital in a coma gave Mandes time to think about how to organise his funeral. It was winter 2021, in the middle of the Covid lockdowns, so she had to negotiate limitations. But the main question was, if not a priest, then who would officiate at the ceremony? “I Googled Polish secular celebrants and knew my husband would haunt me if I hired one of them. They were more like celebrities than celebrants,” she says. “So, I decided to do it myself.”

A former audiobook reader with some acting experience, she harnessed her writing skills to concoct a unique speech for her husband, and her acting skills to deliver it. She even used the occasion to raise awareness about depression. “Afterwards, people commented that they hadn’t realised a funeral could be so beautiful, so personal. Some time later, a friend told me that being a celebrant could be a profession and this is how I got to know the Institute of the Good Death,” she recalls.

Anja Franczak, 39, founded the Institute of the Good Death in 2020, after losing a child in 2015 and realising that society offered few tools to cope with the grief. She then discovered the roles of grief doula, end-of-life doula and celebrant, and trained in all three in Germany. “Doula” comes from the Greek word for “a woman who serves”, and is popularly associated with birth doulas, who help mothers navigate the beginnings of life. But the need for assistance with end-of-life matters has become more and more salient.

A grief doula is a non-medical professional who supports individuals or families experiencing loss. They help them to come to terms with death, navigate emotions arising from grief, and deal with practical issues, such as fulfilling the deceased person’s will. An end-of-life doula, in turn, guides a dying person through the process of passing and supports those important to them. Like a grief doula, they also help people come to terms with death, and deal with administrative issues such as planning a funeral. They also help communities recognise death as a natural and important part of life. A celebrant complements the doulas, supporting mourners and organising a farewell ceremony that honours the departed person.

End-of-life doulas Katarzyna Boni, Anja Franczak and Magdalena Siwecka (left to right), about to start a workshop on the circle of grief.
End-of-life doulas Katarzyna Boni, Anja Franczak and Magdalena Siwecka (left to right), about to start a workshop on the circle of grief.

While training, Franczak started sharing the experience on her blog and received a lot of reactions from people who were fascinated by this new, fear-free approach to dying. Death is a taboo subject in Poland, as it is in many countries. According to research, 33% of Poles don’t think about it at all, and 27% very rarely.

“I don’t avoid death: on the contrary, I seek contact with it. My perspective on life has changed,” Franczak wrote on her blog. “I want to talk about life with the knowledge that we’re all going to die. I believe that this awareness offers us a chance to live an intense life in line with our values, to open up to a deep experience of being human and to have relationships full of respect, acceptance and love.”

Together with like-minded people she met along the way, Franczak created a grassroots collective that morphed into the Institute of the Good Death. Today, it has more than 100 members, including professionals from the funeral industry, experts in medicine and palliative care, psychologists, journalists, scientists and artists. They organise courses, lectures, meetings and events such as “death cafes”, informal open meetings during which people can talk about loss and grief.

Their aim is to foster conversation and education about end of life, death and grief in a sensitive and supportive way. The institute also aspires to transform the culture from one in which death is absent or censored into one that draws from transience for our benefit, to enrich and enliven us. “We want to empower people to keep each other company in life and in death,” says Franzcak. “To raise awareness that we do not necessarily have to outsource all things concerning dying to institutions. We can deal with many things ourselves.”

The institute does not oppose the church or tradition, she stresses: “Many Poles value these religious, Catholic rites. We are open to collaboration with priests.”

One notable aspect of the institute is that it attracts mainly women; few men have participated in courses or events. “Maybe it’s because, for some reason, topics of life and death, childbirth and dying are closer to women,” says Franczak. Mandes suggests it might also be down to a difference in socialisation between men and women, “and the fact that what we do at the institute is perceived as care work, historically associated with women”.

Emilia Mandes conducts the humanist funeral ceremony of Jan Ledwoń.
Emilia Mandes conducts the humanist funeral ceremony of Jan Ledwoń.

Back in Elbląg, after the ceremony, Mandes invites mourners to the cemetery, where Ledwoń’s ashes will be returned to the soil. “He chose the forest as a place to say goodbye to this world. It leaves us in pain. If you feel that you want to tell him something, recall some memory, thank him for something, get angry about something, forgive him for something, you may express it with a metaphorical letter in the form of an autumn leaf,” she says.

As orange and red leaves fall on to Ledwoń’s grave, Mandes plays one of his favourite songs, Whitney Houston’s I Will Always Love You. This is the saddest moment of the funeral and Ledwoń’s widow, Magda, bursts into tears, hugging her husband’s photo in her arms. “You may now get closer to the family and hug them,” encourages Mandes, and the crowd clings together, forming a swinging mass.

“It is one of these rare experiences that really unite people,” Mandes says later. “It’s incredible how we are able to bond when we stand together in the face of death. It is above all divisions, all polarisation.”

A few days earlier, on 1 November, it was All Souls’ Day, a day when Poles do commune with the dead. On this day, Polish cities are typically deserted, but the cemeteries are bursting with life. Trains and motorways all over the country fill up with those travelling to visit the graves of the departed, and necropolises are covered in flowers and flickering candles. It is a time reserved for family and friends, and for remembering those who have died.

The Wind Phone Booth, where mourners can ‘communicate’ with those who have died.
The Wind Phone Booth, where mourners can ‘communicate’ with those who have died.

As dusk falls, Warsaw’s historic Powązki cemetery becomes as busy as an airport. People who have come to visit graves mingle with those collecting money for charity, and vendors of candles and chrysanthemums. The place is dotted with booths housing priests selling commemorative masses.

But Mandes is not there. “I’m not going to the cemetery today,” she told me. “I don’t like crowds and I want to show my children that a connection with the dead is not limited to one day in the year.” Instead, across the city from Powązki cemetery, in the Osiedle Jazdów – a cultural commune housed in tiny houses in the centre of Warsaw – she is preparing an “open grief ritual” organised by the institute. This small ceremony is aimed at helping people honour and remember the deceased and engage in the process of letting go. Wading through autumn leaves in a small public square, Mandes and two other celebrants place lit candles in various corners and set up a microphone. A dozen participants observe them curiously. Some of them use the Wind Phone Booth, an imitation phone box installed by the institute in May 2022, where mourners can “communicate” with those who have died (the line is not connected to anything).

“I will give each of you a ribbon. It will be your bridge to your departed person and will let you connect with them,” says one of the celebrants, and divides the group into small circles. After a moment of awkward silence, each of the circles starts resounding with words, and soon with sobbing. “I wanted to thank you for being such a great auntie …”, “I wanted to say sorry that you couldn’t die in your beloved flat …” As the stream of words intensifies, I cannot believe that these people are able to show such vulnerability despite being complete strangers.

Mistress of ceremony Dominika Galza offers blue ribbons as a symbol of connecting with a loved one who has passed away.
Mistress of ceremony Dominika Gauza offers blue ribbons as a symbol of connecting with a loved one who has passed away.

“I came here exactly for that,” says Monika, 44. “I am not ashamed – I want to cry among strangers.” She explains that she knew about the ritual from social media. “It is a relief to discuss emotions concerning death and grief that in Poland have been suppressed for years,” she adds.

The ritual led by Mandes and her fellow celebrants is vaguely reminiscent of the pre-Christian Slavic rite of Dziady (Forefathers’ Eve). This “communion of the living with the dead” involved gathering in houses to feed wandering souls with honey, barley, eggs and vodka. It was an occasion to share grief with the living and talk to the dead.

At the end of Ledwoń’s funeral, as his sister-in-law Marzena and her husband Jerzy say their goodbyes, I ask them what they thought of the ceremony. “I loved it,” says Jerzy. “I’m enrolling my name in Emilia’s agenda.”

“Not so fast,” says Marzena. “You still have a couple of dozen years to live.”

Complete Article HERE!

A Guide to Dying

— We Talked to 3 Death Doulas

As Halloween, Day of the Dead, and All Souls and Saints Day have passed, we reflect on death and the afterlife. In fact, it’s all consuming. It’s impossible to not think of our loved ones we have lost or those we may lose when visiting grave sites or setting up an altar with candles.

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Whether religion comes into the conversation or not, death is a complex topic to discuss. The dying process is a mystery for most people, and shielding away from “the end” is an uncomfortable reality that many aren’t ready to face. Oftentimes, most people ignore it alltogether.

Avoidance, however, doesn’t always work when it comes to the inevitable — preparing for one’s departure from the world. And sometimes, people just need a little help, guidance, and comfort to ease into this next transition.

That’s why having a death doula assist during the latter stages of life is increasingly becoming a popular business and option for those heading toward the light.

A “doula” is a term commonly employed to describe someone who supports a pregnant woman during childbirth. The name is derived from the Greek word “doulđ,” which means “slave or female servant.” More recently, the definition of a doula has been expanded beyond the introduction to life and includes someone who provides support to those who are nearing the end of their lives.

What does a death doula do?

The tasks performed by death doulas can change depending on the needs of the person they are currently assisting. A death doula may concentrate on performing menial duties so that others who are close to the dying person can concentrate on spending meaningful time with them. They may assist with funeral rites and ceremonies, such as ensuring that the proper cultural or religious customs are observed during the dying process and that the deceased’s body is appropriately handled after death.

Listening to the dying person and others close to them while providing nonjudgmental emotional and spiritual support can be a significant portion of the death doula’s job description.

To learn more about this compassionate role, we asked three death doulas about their difficult but rewarding profession.

Interview questions have been edited for length.

Alysha Suryah, Baltimore

Photo by Elizabeth Kopylova

Q: What kind of training goes into being a death doula?

A: While end-of-life doulas have been around for years, the process for entering this space as a professional is somewhat unregulated. There are a plethora of opportunities to get out in the community to receive training in specialized topics, like rituals and communication, as well as the business side of this role; however, certifications are not required to provide this level of care to clients or even within your community — there are even opportunities to be a volunteer doula at hospice centers or other related organizations.

The only thing needed to be a doula is a willingness to provide compassionate care and a deep commitment to supporting individuals and their families during this potentially life-changing journey. It’s really a role rooted in humanity, and while formal training and certifications can certainly enhance your skills, the essence of being a death doula is the unwavering dedication to being there for others when they need it most.

Q: What are some of the challenges of the job?

A: One of the primary challenges of this role is the emotional toll it can take, even if one is vigilant about protecting their emotional well-being. Death is an intensely personal experience for everyone, and as an end-of-life doula, you have the potential to build deep, meaningful relationships with the individuals you serve. Bearing witness to their grief, pain, and loss, as well as the grief of their families following their passing, can be emotionally taxing at times. Sometimes, the relationships formed with clients are so close that you find yourself sharing in their sense of loss. It necessitates practitioners to have a considerable amount of mental fortitude to provide unwaveringly compassionate care consistently.

In addition to the emotional challenges, end-of-life doulas also encounter practical challenges. Effective communication, including facilitating difficult conversations, is a key aspect of the role. Irregular hours, often involving evenings and weekends, demand flexibility. Additionally, managing multiple clients simultaneously can increase the risk of burnout, emphasizing the need for self-care and support. Balancing the emotional demands and the practical challenges of the role, end-of-life doulas exemplify resilience in their commitment to providing support while navigating the complexities of end-of-life journeys.

Q: Is a death doula brought into hospice, or is it home care?

A: The professional role of a death doula is remarkably diverse, shaped by an individual’s strengths, experiences, interests, and the specific needs of their community. Death doulas can be found in both hospice and home care settings, and their responsibilities closely align.

In hospice settings, death doulas collaborate closely with hospice teams to provide comprehensive support to patients and their families. Their mission typically involves offering emotional support and guidance, contributing to legacy projects, and assisting individuals throughout the end-of-life journey. Their role seamlessly integrates within the hospice care framework. Conversely, some death doulas choose to operate within the context of home care. In this capacity, they provide support to individuals who have decided to receive end-of-life care in the comfort of their homes. Within this environment, death doulas can have a higher degree of flexibility compared to the structured relationships found in hospice settings. Their services encompass companionship, emotional and/or practical support, as well as guidance and education on end-of-life decisions. They also continue to provide support to clients’ families, guiding them through the dying process in a familiar environment.

Catherine Durkin Robinson, Chicago

Photo courtesy of Catherine Durkin Robinson

Q: What led you to become a death doula?

A: I’ve been doing death doula work for a long time. Raised Irish Catholic, I was at my first “Last Rites” when I was five, and thought everyone was raised to believe that death is a natural part of life. I was much older when I realized that most of my friends were shielded from death and quite frightened by it. So I’d been their “death buddy” for years. I was also a longtime volunteer for two hospice organizations. It was around the time of the pandemic when I realized my 30-year career as a political organizer was coming to an end. I wanted to continue advocating for people outside the political system (it’s gotten quite toxic out there.) Someone said that I was already doing this work, so I went back to school (University of Vermont) and opened up my practice.

Q: What are some of the biggest challenges in your line of work?

A: I think one of my biggest challenges is helping people to see death in a different light. We can be awed by its mystery rather than frightened by it. Another challenge is helping people understand that plant medicine, or psychedelics, can reduce anxiety and fear around end-of-life. People are afraid of that idea, too. So, I’m pioneering in this space and need to remember that and be patient as I go.

Q: I’m interested in your experience in the polyamorous space. Can you discuss this?

A: Yes, there are lots of challenges about the end of life for different families. This is especially true for non-traditional families, like polyamorous or anyone on the LGBTQ+ spectrum. As someone with training and lived experience in this realm, I’m happy to advocate for families and help healthcare providers to better support them when needed.

Laura Lyster-Mensh, Washington D.C.

Photo by Isabella Carr

Q: How long have you been assisting others as a death doula?

A: I have always been interested in the processes of birth and death. At my stage of life, there is more death, and I wanted to explore how to be a better caregiver, supporter, and mourner.

I started my training in late 2021 and have been volunteering with dying people and doing death awareness work since early 2022.

Q: How has becoming a death doula changed your perspective on death and dying?

A: I’m less afraid of dying. I am able now to separate dying from death, and that is quite helpful.

Q: Can you tell me about the death positivity programming at the Congressional Cemetery, where you are a death doula?

A: Congressional Cemetery is taking a bold and active stance on this programming. Despite a very busy calendar with so many activities going on, they make space for these special events and gatherings. It’s innovative, and the community of death-positive participants is growing and supporting one another. It’s an honor to be facilitating these programs.

People stop me, often, when I’m walking around the cemetery and say, “Aren’t you the death doula?” These are the start of some of the most interesting and enriching conversations I’ve ever had. It is amazing how much people want to talk but don’t know where to start.

  1. Professional Care Management. End-of-Life Doulas.

Complete Article HERE!