Should Everyone Have An End-Of-Life Doula?

By Anna Lyons and Louise Winter

On a crisp January morning, we carried Camilla’s purple coffin, covered in blooming yellow flowers, into the Art Deco chapel of a London crematorium as Leonard Cohen sang “Dance Me to the End of Love”. Her family and friends watched from their homes in New York City via a livestream link. They’d recorded voice notes in advance, which we’d uploaded to the music system. Camilla’s coffin rested on the marble catafalque, as their pre-recorded words of love, gratitude and admiration were played. As the curtains closed around her coffin, a recording of Camilla’s niece reading “Phenomenal Woman” by Maya Angelou echoed around the empty crematorium chapel.

Camilla lived a creative, vibrant and full life, surrounded by a wide circle of like-minded people. She died alone on a Covid-19 ward in a central London hospital. In the saddest and loneliest of circumstances, Camilla’s family and friends found a way to come together to say goodbye to the person who had been a huge force in all their lives.an end-of-life doula and a progressive funeral director. Anna supports people who are living with life-limiting illness, their family and friends, helping people to live as good a life as possible right up until the very end. In her doula role, Anna also works with people who are grieving. Louise supports people to put together funerals that honour, heal and inspire. Our joint mission is to normalise death and dying as part of life and living. Over the last year, our work, both together and separately, has changed immeasurably.

Many of us won’t have any idea that, worldwide, in an average year, around 151,600 people die every single day. That’s almost two people every second. Annually, in the UK alone, more than 500,000 people die. However, the Covid-19 pandemic has meant that death and dying have infiltrated and impacted our lives in ways we’ve never experienced before. As a society, we’ve been faced with the shock of horrifying death tolls on a daily basis. We’ve been unable to be at the hospital deathbed of someone we love, or if we were allowed, we’ve had to say goodbye through multiple layers of PPE. Some of us have attended restricted funerals, unable to engage with the rituals and traditions associated with loss

Where do we turn when someone dies? In normal times, we’d seek solace in the presence of others, we’d allow ourselves to be supported by the people around us. They would bear witness to our losses, keeping us close and secure in the knowledge they were near. Devastatingly, Covid-19 has changed all of this. We couldn’t reach out. We couldn’t physically be there. We couldn’t hold someone’s hand as they lay dying in hospital or give a friend or colleague a much-needed hug after a funeral service. Human touch and connection were replaced by a phone, an iPad or a laptop screen – a cold, hard, reflective surface with its ability to “connect” reliant on an intermittent internet connection. With the absence of human connection, of closeness, of the comforting arms of someone we love, how and where did we find consolation and care? How could we find ways to come together while staying apart?

We are privileged that our jobs have allowed us to witness a myriad of inspiring and beautiful ways people have found to do just that. The humanity of NHS staff has astounded us time and again. One nurse stayed with a young woman who was dying alone in hospital long after his shift was over, reading aloud the text messages she was receiving from family and friends. We saw a frightened young woman transferred from the hospital where she was receiving cancer treatment to hospice so she could be surrounded by those who loved her at the end. Her family played her favourite music and soothed her with stories from her childhood in a peaceful room overlooking the hospice gardens. And a newly married man, with his entire life ahead of him, died unexpectedly in a tragic accident. Hospital staff, despite restrictive regulations, rushed to find extra PPE so his new wife could be there to kiss him for the final time.

We watched a fractured community come together to share flowers from their gardens when florists were closed and funeral flowers were unavailable. A simple request via the neighbourhood WhatsApp group resulted in a widow’s doorstep overflowing with blooms for her partner’s coffin. We witnessed how the rules of social distancing have necessitated some radical creative thinking and we worked with a celebrant who designed a long multi-coloured ribbon that everyone at the funeral could touch and hold to feel connected, while still remaining physically distant.

We were asked to help facilitate a worldwide Zoom by a group of friends when one of them died by suicide. They wore his favourite colours, shared photos of the fun they’d had together and raised a glass of champagne in his honour. Separated by a virus, united in grief, connected via technology.

Who would have thought just 18 months ago that today we’d be watching the people we love dying over FaceTime and attending their funerals via video link? Yet the unimaginable has become our everyday reality. And it’s within the reality of the unimaginable that we’ve seen the infinite beauty and endless possibility of the human spirit shine. We’ve learned we can bear the unimaginable. We are bearing the unimaginable. Through kindness, creativity and determination, we’ve found hope in our heartbreak, discovered that our vulnerabilities are also our strengths, and realised that our resilience is born from finding fragments of optimism and wonder in the most unlikely of places

Now, the promise of spring sits in the cool end-of-winter air. Gone are the dark afternoons; the frost and biting wind are slowly disappearing, allowing these March days to tenderly unfurl, reaching expectantly into the longer evening light. They bring with them a degree of anticipation, hope and new life. There is life. There is hope. There’s always hope.

‘We All Know How This Ends: Lessons about Life and Living from Working with Death and Dying’ by Anna Lyons and Louise Winter is available now.

Complete Article HERE!

Embracing the Role of the Death Doula for Your Hospice Patients

Meeting people at the end

by Daniel Morris

Many people know about the role midwives and doulas play in managing pregnancy and childbirth, but few are familiar with the concept of the death midwife, also known as a death doula. This person helps patients and their loved ones cope during the end-of-life phase. Life and death are both natural processes, but many people struggle to come to terms with the emotional difficulties of dying. Your homecare agency can enhance emotional support during this time by hiring a death doula to accompany your services.

Let’s go over the role of death doulas and answer some questions about how they operate and how they can deepen your homecare agency’s services during the end-of-life process.

What is a death doula?

A death doula helps manage the transition between life and death. During this time, a doula may act as a companion to the dying patient or as an advocate for the family’s needs. By nature, this role is holistic and highly personal. It depends a great deal
on what extra support the patient and family may require.

Death doulas are becoming more popular because they are filling a need created by the way families and communities are currently structured. In the past, communities were closer-knit and family members were nearby; today, that may not be the case. Death doulas can play a key role in bridging the gaps that can arise in companionship and end-of-life care, especially when a patient chooses to die at home.

What services does a death doula provide the dying patient?

A death doula will work to comfort the dying patient and coordinate legacy activities. Some common activities may include:

  • Listening actively, leading light conversation, answering a patient’s questions, helping them find peace
  • Providing comfort through reading and companionship
  • Using anxiety-reducing techniques such as guided visualization, meditation and massage
  • Refreshing their room with pillows, candles or beloved objects
  • Suggesting and supporting legacy projects, gifts and/or letters
  • Discussing end-of-life wishes

What services does a death doula provide the family?

A death doula works closely with family members to meet their needs during this difficult time. Many family members describe a death doula as a calming, supportive presence in the process. A death doula can provide a variety of support options, including:

  • Identifying the needs/preferences of the family
  • Providing respite care
  • Discussing end-of-life planning, such as advanced care directives, vigils, after-death body care, funeral planning and memorial services
  • Planning last hours of life, including goodbyes and favorite activities
  • Suggesting and supporting legacy projects, gifts and/or letters
  • Facilitating difficult conversations and advocating for the family’s rights
  • Coordinating domestic care, such as housekeeping, lawn care or pet care
  • “Just being there” to provide companionship and support

In addition to the acts of care listed above, a death doula can be beneficial to the patient and family in other ways. Often a professional caregiver isn’t there 24/7, so there are long breaks when a patient may be alone. Death doulas can cover some of these hours, providing comfort in those final weeks of life.

Death doulas may also provide emotional and spiritual support that is missing from the traditional hospice care experience. With their mere presence, a death doula can provide a shoulder for a family to lean on.

Why should home hospice providers partner with a death doula?

Your home health and hospice agency may need extra support during the end-of-life phase, as the act of dying can be a time for all hands on deck to ensure patient and family comfort. In this case, you should reach out to a death doula. They will listen to both your agency’s needs and the patient’s needs to create an end-of-life care plan that works for you and the patient. It’s important to find a doula that you and the family feel a certain chemistry with, as this person will be involved while care services are performed.

Home hospice providers who have experience working with death doulas find that it’s great for enhancing the end-of-life experience. A death doula will coordinate with your agency’s hospice nurses and workers to fill care gaps and provide more emotionally oriented activities for the family and patient. They should work closely with family and professional caregivers, taking the time to understand the caregivers involved and coordinate with them to provide end-of-life care. It’s also common for doulas to get a clear sense of caregiver gaps, such as respite care. You should work together in order to make sure that their services complement those your agency already provides. The overarching goal is for each patient to receive an enriching end-of-life experience.

Are death doulas certified?

It’s important to note that a death doula is not a medical professional and doesn’t have a medical role in a patient’s care. For example, they can’t prescribe pain medication or take vitals. Instead, a death doula provides emotional and spiritual support.

There’s currently no credentialing body for death doulas. However, all death doulas should have appropriate training. Training courses are offered by accredited organizations such as the International End of Life Doula Association (INELDA), the Lifespan Doula Association and the University of Vermont. When you search for a doula, make sure they have the required training.

Also note that death doulas aren’t typically affiliated with any particular religion. In fact, doula services are often designed to be universal. Whether your patient adheres to a specific religious tradition or not, a death doula can still be appropriate.

How do you find a death doula?

You can start your search for a death doula on the INELDA website, which lists trained death doulas by locale. I also recommend talking to friends and family about their experiences with death doulas. Ask your patients and their families if this is a service they would benefit from.

While being a death doula is a service to the dying patient, it is not typically a volunteer position; however, you may also be able to work with an organization that provides volunteer death doulas to work at some care facilities. Some death doulas will charge rates by the day or by the hour, or they may charge an overall fixed price. If you are bringing a death doula onto your staff, you should discuss pricing to understand how the service will affect the patient’s final bill.

Death doulas play a comforting role during the dying process. Consider hiring a death doula for your homecare agency to get the emotional support your patients need during their transition from life to death.

Complete Article HERE!

Death Doulas Give Time To Those Running Out Of It

By

Chris Bruton said his dad got sick in 2017 and just never got better.

“He had fatigue and we didn’t know what it was,” he said.

By January 2018, they had an answer.

“He actually had stage four kidney cancer,” Bruton said. “He was basically given about two to four months to live.”

When Bruton was a kid, his dad travelled a lot, so he didn’t get to know his dad that well. But after Bruton’s mom died, his dad moved from North Carolina to live with Bruton in Colorado. Bruton was in his 40s, his dad was in his 70s.

A year later, his dad got sick. Once they got the diagnosis, a woman Bruton was seeing suggested a death doula.

“And of course, I’d never heard of it. It sounded a little bit, a little bit hocus pocus-y to me,” he said. “I thought, well, I don’t think my dad would be up for anything like that.”

But then his dad started to close himself off and isolate, so Bruton agreed to meet with Cindy Kaufman, an end-of-life doula who works out of Denver. And Bruton introduced her to his dad.

He remembers chatting before Kaufman asked his dad how he was doing – how he was really doing. In an uncomfortable silence, Bruton and his aunt left to give them space.

“And as I walked out, I heard sobbing from my father that I had never heard before,” he said. “This well of stress and fear, anxiety, sadness, it all just came out.”

Kaufman came by one or two times a week, and then drove down for the end. It only took about two months. Bruton said she even helped his dad’s dog through it.

“After my dad had passed, she said, ‘Hey, let’s get Matty up here on the bed and so she can see your dad.’ And I think that even helped the dog find closure and understand what was going on,” he said.

Even though he’d never heard of a death doula before, Bruton is now a convert.

“I had no idea how much work there was to do to help someone who’s going through the dying process until I saw what Cindy did. And yeah, changed our lives,” he said. “Changed our lives and changed my dad’s life at the very end of it.”

Death doulas are also called death midwives or end-of-life doulas, but whatever you call them, their numbers have blossomed in the last decade. There’s a few in every state, but Colorado is a hotspot in the Mountain West. Beyond being a doula, Cindy Kaufman leads the Colorado End-of-Life Collaborative.

“End-of-life doulas fill what we believe is a gap,” she said.

That gap is the space between hospices, which provide necessary medical care, and what she does – help someone with the actual process of dying.

Since the hospice industry started in the ’70s and ’80s, Kaufman said, it’s become more of a business with certain hours and staff caring for multiple clients. While they started as non-profits, the majority of hospices are now for-profit institutions.

“We don’t carry those kinds of case-loads, we work for (ourselves),” she said, comparing death doulas with hospice staff. “We don’t fall under insurance, we’re private pay.”

Kaufman said death doulas can bring ritual back into dying, and make it easier to say goodbye.

They can help plan legacy projects, say late-night prayers, figure out what kind of burial or cremation someone wants. For some, they just sit with people, right up to the end.

And death doulas are incredibly diverse, not only in what they offer but with their backgrounds. There’s no licensing requirement or mandatory training. Kaufman said some people use their own culture to inform how they practice as death doulas, and they don’t want more regulations.

“They want to be honored for the fact that they were trained within their own family and community to do what they do,” she said.

Still, several training centers have cropped up in recent years. Some are in places like Australia and the UK. And there’s one in New Jersey called the International End Of Life Doula Association, or INELDA.

Henry Fersko-Weiss is a death doula who created INELDA six years ago.

He said it’s good to take other cultures into consideration, but the profession needs standardization if they want to be reimbursed by Medicare or Medicaid. He said that could also improve quality of care – and help the fledgling profession evolve and gain trust.

“Anybody could call themself a doula without knowing anything, without having any training,” he said. “And I think that can do a disservice to the development of this field.”

Nancy L. Compton is an INELDA trainer based in Boise, Idaho. She’s also a certified hospice nurse assistant, palliative nurse assistant and death doula.

She’s proud death doulas can work outside normal constraints.

“Not everybody is born nor dies Monday through Friday, 8 to 5,” Compton said.

But she’s also proud of what her intimate knowledge of the dying process does for families.

“That’s where I am different and that’s where I pioneered this, especially in the Boise Valley,” she said.

Compton said a hospice paid her to practice there, and that’s unusual for a death doula. Medicare sanctions death doulas, but won’t reimburse for their care – yet. That would require a lot more standardization.

Deb Rawlings, at least, is fascinated by the diversity in this budding industry.

“It was amazing to find that there were so many differences in what the death doulas say that they do and what they offer,” she said.

Rawlings teaches palliative care at Flinders University in Australia. She’s one of the few people who’ve researched the occupation.

She found that many death doulas are former hospice workers or nurses. Some volunteer, others charge. Some help with a spiritual journey, others help with more physical tasks.

But even though they’re so different, death doulas have generally described their role to Rawlings like this: “We’ve got time. So I’ve got time to come in and sit with you. I might sit with the person who’s dying and let their family go and have a break. I might help and do the washing.”

In other words, they give time to those who are running out of it.

Complete Article HERE!

Death doulas help the dying meet their end with affirmation

Death doula Anna Adams sits in an office at Holistic Hospice in San Antonio on Oct. 28, 2020. Just as birth doulas help expectant parents bring new life into the world, end-of-life doulas help the dying cope with their next journey. They help the dying and their survivors face death with empowerment and affirmation instead of fear and anxiety.

By RENÉ A. GUZMAN

Andrea Aycock can only sometimes look at the photos of her hands clasped with her mother’s just before she died in May. But she’ll always cherish the helping hand she got from Anna Adams, an end-of-life doula in San Antonio who preserved that personal moment and so many more for Aycock in her mother’s dying days.

“Anna came and took care of her,” said Aycock, a call center operator in San Antonio. “(She) just mainly comforted me.”

Just as birth doulas help expectant parents bring new life into the world, end-of-life doulas help the dying cope with their next journey. They help the dying and their survivors face death with empowerment and affirmation instead of fear and anxiety.

Also known as death doulas, these trained professionals provide the terminally ill and their families physical and emotional support before, during and after death, the San Antonio Express-News reported. These are nonmedical services that often include relaxation exercises, funeral planning, educating the family on their loved one’s condition and just simple companionship.

Adams sees death awareness becoming more commonplace in the United States in the way that Día de los Muertos (Day of the Dead) celebrations have grown more mainstream and that there are more calls for services of end-of-life doulas.

“Cultures like the Mexican culture that have these beautiful traditions of staying in connection with that (dying) process are so admirable and so beautiful. Doulas want to make sure that is available to all people,” said Shelby Kirillin, an end-of-life doula in Richmond, Va., and program development manager for the International End of Life Doula Association (INELDA) in Jersey City, N.J.

Kirillin sees the rising awareness of death doulas as part of what she calls a “death positive movement,” where more people are getting back to supporting their dying loved ones at home and engaging with their death more up close and personal, much as their ancestors did.

“In the last 100-plus years in our Western culture, that has been taken away from us,” Kirillin said. “How to be with someone who was dying, how to touch them. That was something that we knew how to do.”

INELDA is one of just a handful of death doula organizations in the nation and was launched just five years ago. Co-founder Henry Fersko-Weiss created the first end-of-life doula program in the United States at a New York City hospice in 2003.

Kirillin estimates INELDA has around 40 certified death doulas across the country, yet has trained around 3,000 individuals in death doula care. Many just sign up to learn more about facing death and don’t pursue death doula work, she said, while others branch off to do their own training.

Most death doula services come in three phases.

The first is planning and preparation, which involves getting a terminal patient’s affairs in order and asking some tough questions that call for honest answers. Where does that person want to die? Who do they want present for those final moments? What so they absolutely need to say or do before they’re gone?

Kirillin said that first phase often addresses the dying individual’s regrets and unfinished business, as well as any advance directives, wills, etc. Often referred to as “legacy work,” such planning makes it easier for family to understand and respect the dying person’s wishes.

Fran Morgan is in that early stage with her dying mother Rosalee, who receives hospice care at the private residence of a family friend.

“With Anna in the picture, she will be advocating for all of the things that need to happen,” said Morgan, a retired telecommunications company manager in San Antonio. “It will release me from those responsibilities, and I can just be with my mom and cherish those final moments.”

That second phase is called the vigil, usually the last four or five days of the dying person’s life where end-of-life doulas and family members spend more time at their bedside.

“I call them my angel vigils,” Adams said.

During her doula vigils, Adams, 38, often creates a soothing space for the dying with soft music and dim lighting. Sometimes she’ll add a favorite scent with aromatherapy. Most times, she just gently massages her client’s arms and holds their hands.

And in those final moments as they take their last breaths, Adams comforts them with what they most want to hear, be it Bible verses, soothing music or just someone to say it’s going to be OK.

The final phase of a death doula’s work addresses survivors’ grief. Kirillin said that involves circling back with the family a few weeks after their loved one’s death to check on their emotional well-being.

Kirillin stressed that end-of-life doulas do console families, but are not licensed grief counselors and will refer families to such resources if necessary.

When it came to caring for Aycock’s mother, Adams mostly helped with her bedside care and keeping her visiting nurses on task. Adams also explained to Aycock any of her mother’s diagnoses she didn’t understand.

Then there was that time Adams took those hand photos of Aycock and her mother. Difficult as it is for Aycock to look at those photos, much less share them, she still holds them close.

She holds Adams’s work even closer.

“It is the best help that you can get,” Aycock said. “They provide comfort not only for your loved one that is going through the transition, but for you.”

Morgan expects to experience more of that care from Adams. “I’m looking forward to the relationship that we’re going to have,” said Morgan, who started working with Adams around three weeks ago. “For now my initial experience (and) impression is she certainly has the heart for what she’s doing.”

Adams’s first experience comforting the dying came when she was 16. Fresh from certification as a nursing aid, Adams tended to a best friend’s cousin for several months at her home with bathing and conversation. That care continued when that cousin transferred to hospice care and well up to her death.

“So we just had a bonding moment. I gave her that sacred zone,” Adams said. “That kind of piqued my interest.”

Adams went on to pursue a career in hospice, then for the last four years worked as an EMS manager and dispatcher for a private company. But something pushed her back into working with the dying.

“I told my family, ‘God wants me to do this. God is keeping me in line with this,’ ” Adams said.

At the start of this year, Adams got her end-of-life doula certification. Then over the summer, she partnered with fellow certified doula Sonja Koenig to launch TX Doula Movement, an online training and certification course for death doulas, senior care doulas and doula consultants.

Adams knows of just a handful of death doulas in San Antonio right now, but she expects that number to double later this year when around five of her TX Doula Movement students complete their certification. Adams plans to launch her own doula training service next year.

Adams said the coronavirus has not deterred her from her work, save for having to incorporate more video consultations with families and masks and frequent hand-washings during visits. She has yet to provide end-of-life doula services to someone with COVID-19, but one of the hospice companies she works with takes in COVID-19 patients.

“I don’t have a problem working with COVID patients,” Adams said.

Adams said most hospitals still don’t work with death doulas, but hospice services are slowly warming up to them as adjuncts to their own care.

“It is relatively new, but we’re seeing it more,” said Rachel Hammon, executive director of the Texas Association for Home Care & Hospice in Austin.

Holistic Hospice Care is one of two hospice centers in San Antonio that works with Adams. Administrator Erica Sandoval said Adams has been a welcome bridge between families and clinical teams.

“She can get on (everyone’s) level,” Sandoval said. “And she’s very calm and very patient. And she just wins their trust and they feel very comfortable with her.”

Like Adams, Sandoval, too, sees parallels between death doulas and Día de los Muertos, such as the memory books the doulas make for their clients and the Day of the Dead tribute altars families make for their lost loved ones.

“I definitely think that there’s a good association to that because they are (both about) wanting you to cherish their memories and enjoy the last moments and everything that you can remember of the individual,” Sandoval said.

Complete Article HERE!

End-of-life coach

— The art of dying well

For most of us, the word “doula” is firmly associated with a coach helping a mother through childbirth. A modern-day version of a traditional midwife, a doula, is not a healthcare professional, but rather a guide, whose goal is to comfort and support women in labour both physically and emotionally.

Derived from the Greek word δούλα (“servant-woman”), doula stands for a woman who lends her knowledge, experience and presence of mind during the arduous process of childbirth. In the Western world, the popularity of birth doulas started to gain traction in the early days of the reproductive justice movement back in the ’70s.

Striving for more natural and less medical experiences women turned to doulas, who’d often act as advocates for women and babies in hospitals which weren’t always friendly and accommodating.

Recent years have seen the rise to a different kind of doulas, quite the opposite of those attending to childbirth. These are “death doulas” who support people in their end-of-life journeys. Also referred to as “death midwives”, their vocation is a relatively recent phenomenon emerging as part of the mindset recognising death as a natural, accepted, and honoured part of life.

Death doulas are by no means there to assist in ending one’s life (at least in the countries where euthanasia is illegal), but rather to ease the transition both for the passing person and his or her loved ones, who stay behind/Sharon McCutcheon via Unsplash

There are remarkable parallels between being born and dying, and in both life scenarios, doula’s aim to reduce anxiety and confusion, manage the pain, and, if possible, make the experience more peaceful. Just as birth doulas are coaching mothers on birthing a baby, death doulas are coaching people on dying. They provide non-medical aid which is a mix of emotional and practical counselling that can make all the difference.

Christy Moe-Marek, an end-of-life doula from Minnesota, says that doulas emerged from the Baby Boomers, behind the natural birthing movement. They decided to take things into their own hands as far as dying goes: “They’re saying, no, I don’t want the death my parents had. We are rich in possibility, why can’t I make this whatever I want it to be?”

Death doulas – just like midwives – have been around since the beginning of humanity. Traditionally their roles were played by the wise women from the community or extended family.

However, with the disintegration of traditional societies and the extended family per se, we have lost touch with our roots as we often find ourselves helpless in the face of the imminent. Death customs and practices within families have all but vanished as palliative care was delegated to hospitals and the funeral industry was commercialised. But these days people are yearning for a better life – and death! – and this is when doula’s role becomes so crucial.

According to The New England Journal of Medicine, the number of Americans wishing to die at home rather than in a hospital environment is the highest it’s been since the early 1900s/Dominik Lange via Unsplash

They want to pass away surrounded by their family and friends, who could be overwhelmed by witnessing the final days of their loved ones while feeling helpless and powerless. The trade of a modern death doula has emerged as a response to the people’s fear of facing death and even contemplating it. Death doulas have started a conversation about dying and have, in some way, given voice to those making the transition. After all, these days many more people get a chance to linger on a bit longer despite terminal illnesses thanks to the advances in modern healthcare. In many cases, they do need someone to discuss their transition with and make it more meaningful.

Unlike death midwives of the past, our contemporaries are women (and sometimes men) old and young, coming from different paths of life. They help people on the threshold of passing to write letters to their unborn grandchildren, to arrange farewells with relatives; they may perform traditional or religious rituals for their charges or offer assurances.

Doulas bridge the gap between the dying and their families, facilitating conversations about death, explaining things and advising when it’s finally time to let go. Some say that working with a death doula opens people up to a more spiritual side of death with less anxiety and trepidation/Manikandan Annamalai via Unsplash

As death doulas are gaining more mainstream attention, there’s been an ongoing debate, whether they should provide free services rooted in the community. For instance, in communities of indigenous people or African people death doulas have continued to be a steadfast part of the culture. On the other hand, most of today’s end-of-life professionals aren’t being supported by specific communities and, thus, cannot afford to render their services for free. In big cities, where tightly-knit communities ceased to exist a long time ago, death doulas are usually hired by the family of the person nearing the end of life. Still, their responsibility remains with the dying, whether they are being attended to at home, or in a hospice.

In traditional cultures, the art of attending to the dying is passed down from generation to generation. But a skillset of a death doula isn’t “god-given”.

It is something that can be learned. These days one can learn the ways of a death doula by attending training courses or seminars. Neither in the US or Europe are there national regulatory agencies that would provide licensing and oversight. Most likely, their creation is just a matter of time. The decision to become a death doula is often made after attending a dying family member. Others translate years of experience as nurses and palliative care specialists into a new dimension, and some feel the need to make traditional passing-related rituals available to members of their communities. Groups that train death doulas are usually led by nurses and social workers who want to change the impersonal nature of the dying experience most people faces. In the US organisations like The Doula Program to Accompany and Comfort, in New York, The International End of Life Doula Association (INELDA), or Lifespan Doulas and other groups train people to become death doulas.

In Russia, death doulas are virtually non-existent, because palliative care is still in its infancy, and people are culturally opposed to an open conversation about death and dying/Bret Cavanaugh via Unsplash.

However, the need to make dying less clinical and remove the fear and stigma surrounding death has become tangible. Society seems to have gradually realised that dying people, in whose shoes we’ll all end up one day, deserve greater compassion and companionship in their final days. Shelby Kirillin, an end-of-life doula, based in Richmond, Virginia, reasonably wonders “Can you imagine if a woman was going through labour and no one around her was talking about it or preparing for it? There’d be an uproar if we treated birth like we treat death”.

When it comes to dying, traditions and modernity don’t necessarily have to clash. Indigenous cultures have long regarded death as an essential part of life, and even though thanks to modern healthcare options the process of dying these days can be virtually painless, a “good death” is more than just a painless one. That being said, the emergence of death doulas is, perhaps, the best thing that’s happened to humanity in a long time.

Complete Article HERE!

Deathwives, Death Cafes And Death Doulas.

Learning To Live By Talking About Death.

By Robin Seaton Jefferson

“To die will be an awfully big adventure.” Even Peter Pan, the mischievous little boy who refuses to grow up but rather spends his never-ending childhood adventuring on the island of Neverland, attempted to see death in a positive light.

But things were different in 1902 when Peter Pan first appeared in the book “The Little White Bird.” We saw death differently then and treated it more as a part of life. Is it because we believe we’re more likely to avoid it for longer in the 21st century that we seem to shy away from talking about it? Or is it because we have removed ourselves so far from the reality of physically dealing with the dead.

Whatever the reason, a reluctance to face or even talk about dying is largely an American phenomenon. And though there are many and varied ways for families and friends to honor their dead, we don’t seem to want to talk about it until it’s too late. And then we pay others to handle most of it.

But people like Lauren Carroll are trying to change all of that. Carroll and her partner, Erin Merelli, formed Deathwives in hopes of forging a cultural shift which encourages people to think and talk more freely about death. They describe Deathwives as “a collective of professionals who care about the practice of good death.” And they want to educate others about their end of life options which they say should include in-home funerals and death doulas.

“You have the right to a good death,” Carroll said. “We seek to widen the narrative around death and dying and support our community as we remember how to care for one another till the very end.”

A former funeral director and current hospice volunteer, Carroll serves on the board of directors for the National Home Funeral Alliance (NHFA). She said she wants to create connections between funeral homes, home funeral educators, death doulas and families. Merelli is a death doula, ceremonialist, funeral officiant and grief counselor. She is often called to sit with people as they die and to “create ritual and sacred space around the dying process.”

Most people don’t know that home funerals are an option available to them, Carroll said. “There have never been laws against this. You have the freedom to die at home and to take care of your loved ones at home. The family legally owns the body even after death in a hospital. The only law is that you have 24 hours after death to refrigerate or cremate the remains.”

According to the NHFA, “keeping or bringing a loved one home after death is legal in every state for bathing, dressing, private viewing and ceremony as the family chooses. Every state recognizes the next-of-kin’s custody and control of the body that allows the opportunity to hold a home vigil. Religious observations, family gatherings, memorials and private events are not under the jurisdiction of the state or professionals in the funeral industry, who have no medico-legal authority unless it is transferred to them when they are paid for service.” The National Home Funeral Alliance offers a list of legal requirements on the books in each state—either statutes that are applicable to all or regulations that fall under the state mortuary board’s set of procedures applicable for licensed funeral directors only.

“Keep this in mind: there are no funeral police,” the alliance states. “And there are exceptions to every rule, many of which happen when someone dies in the middle of an ice storm or a weekend or a holiday or a multitude of other unpredictable circumstances. Even under perfect conditions or professional care, many of these requirements are not logistically or practically enforceable.”

When America was a new nation, families cared for their dead in their own homes. The preparation, dressing and readying for a funeral was done there, and the caskets were typically built by the family themselves. As parlors gained popularity, families held their funerals in them. Traditionally rooms filled with a family’s finest possessions, parlors were ideal locations for honoring the dead. The parlors of grander homes even had a “death door” for the removal of the deceased family member, as it was considered improper to remove a body through a door the living entered.

The Civil War brought about the practice of embalming, as so many men were dying far from home, and the practice allowed the time needed to bring the bodies home to their families. With embalming came the appearance of funeral homes, funeral directors, morticians and undertakers all over the United States. The National Funeral Directors Association (NFDA) as well as the first school of mortuary science—the Cincinnati School of Embalming, now known as the Cincinnati College of Mortuary Science—were both formed in 1882. It was really the beginning of the same funeral process we use today, though advances in the profession have improved the ways that morticians care for the body as well as the ways that families can remember their dead.

And new trends on how to honor the dead and even just how we talk about death are being presented all the time. Environmentally-friendly funerals are being offered by so-called “green” funeral homes. Advocates of these services say that it’s less expensive, uses less natural resources and eliminates the use of hazardous chemicals such as formaldehyde.

And apparently we’re using a lot. According to an article by Tech Insider, more than 800,000 gallons of formaldehyde are put into the ground along with dead bodies every year in the US. In addition, conventional burials in the US every year use 30 million board feet of hardwoods, 2,700 tons of copper and bronze, 104,272 tons of steel, and 1,636,000 tons of reinforced concrete, Tech insider reported. “The amount of casket wood alone is equivalent to about 4 million acres of forest and could build about 4.5 million homes.”

According to the NFDA, a green funeral may include no embalming or embalming with formaldehyde-free products; the use of sustainable biodegradable clothing, shroud or casket; the use of recycled paper products; serving organic food; locally-grown organic flowers; funeral guest carpooling; and natural or green burial.

“In a purist natural or green burial, the body is buried, without embalming, in a natural setting,” the NFDA states. Any shroud or casket that is used must be biodegradable, nontoxic and of sustainable material. Traditional standing headstones are not permitted. Instead, flat rocks, plants or trees may serve as grave markers. Some cemeteries use GPS to mark the locations of gravesites. A natural or green burial may also simply mean burial without embalming, in a biodegradable casket without a vault, when permitted by a cemetery.”

Jon Hallford, also a member of the Deathwives Collective, owns Return to Nature Burial and Cremation in Colorado Springs, Colorado. Hallford told 9NEWS.com in Denver, Colorado last month that he plans to begin offering aquamation as an alternative to cremation. “Aquamation uses an alkaline hydrolysis system that consists of a metal chamber that uses water and lye for the cremation process, which is a cleaner process than the traditional cremation,” 9NEWS reported. “Once he has the system in place, he’ll be the only funeral home in Colorado to offer the service.”

The environment isn’t the only reason we’re talking more about death. Death doulas are becoming more mainstream. Just as a doula or birth companion provides guidance and support to a pregnant woman before, during or after the first days of the life of her baby, the death or end of life doula accompanies the dying person and their loved ones through the final months, weeks and days of their life. The doula provides support, resources, education and friendship for this period of life, whether it lasts a year or a day.

Then there are now so-called “Death Cafes,” where people gather to share cake and coffee, tea or hot chocolate and talk about death. A “Death Café is a space where you talk about death to become more engaged with life. Such is the paradox of a Death Café,” writes Abby Buckley about a meeting at the Alchemy Café in Gawler, South Australia. “We came from all walks of life, aged 6 months to 64 years old, from all over South Australia but met as equals because we all have one thing in common. We know we are going to die. We don’t have many spaces in our lives or our culture that are conducive to talking about death and dying. But people are hungry to talk about their experiences, to listen to others and to reflect on death.”

Death Cafés typically offer visitors an opportunity to discuss death without judgment, without prescribed ideology, and without any sales pitches. They are not grief counseling or bereavement sessions. There are no agendas, objectives or themes, rather they are often philosophical—and at times, humorous—discussions about death.

Death Café is both the name of the organization that created the format of the death-discussion groups and the term for the meetings themselves. To date, some 9,045 Death Cafes have taken place in 65 countries—4669 of them in the United States—since September 2011.

Death Café calls Death Café a “social franchise,” meaning that people who sign up to the organization’s guide and principles can use the name Death Café, post events to the website deathcafe.com and talk to the press as an affiliate of Death Café.

The Death Café model was developed by the late Jon Underwood and his mother, Sue Barsky Reid, based on the ideas of Swiss sociologist and ethnologist, Bernard Crettaz.

It’s not surprising the concept of Death Cafes has taken off. There’s been a tendency in the last few years to bring death out from among the list of forbidden topics.

“We have become such an isolated nation,” Carroll said. “Death is normal, and for some reason we’ve made it seem like the most abnormal, scary thing. We don’t even talk about it. Like Jon Underwood said, ‘Just like talking about sex won’t make you pregnant, talking about death won’t make you dead.’”

Carroll said society has removed the family from taking an active part in the death process “other than picking out the casket and flowers. In the past we had to prepare and think about it. It helps the healing process to be more hands-on, and it has been proven across the board that it helps to be active in grief.”

With Deathwives, Carroll hopes to teach others to have a better “relationship” with death, to take away the fear. “I have a healthy relationship with death. Knowing I’ll die, and talking about it, has made my life fuller. That’s how everyone single person should live.”

Carroll compared the moment of death to the moment of being born. “We don’t know what happens after death, just as a baby comes into the world having no idea what’s about to happen. We’ve all done it before. We were all born. We opened our eyes to the unknown. I have a feeling what’s next is going to be pretty amazing. If you think about it, no person who has had a near-death experience has ever come back and said that it was awful.”

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How Death Doula Alua Arthur Gets It Done

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In 2012, Alua Arthur quit her legal career to become a death doula. The problem was that she had no idea such a job existed. “All I knew was that there had to be a better way to give support during one of the most lonely and isolating experiences a person can go through,” she says. Now 42, she is a leader in the field of death work and has guided thousands of people and their loved ones through the end-of-life process. She has also trained hundreds of other death doulas through her company, Going With Grace, and is on the board of directors at the National End-of-Life Doula Alliance (NEDA)

This year, as COVID has forced so many Americans to cope with sudden loss and their own mortality, Arthur has been inundated with new clients and students as well as larger questions about how to handle constant grief. She lives in Los Angeles. Here’s how she gets it done.

On her morning routine:
I usually get up around 8:30 or 9:00 a.m. I’m a night owl, and it helps me in my work because people tend to die between 2:00 and 5:00 a.m. I’m not sure why; there are a lot of different theories about it. But I’m most awake and alert at that time. The witching hours. I love to burn my incense at 4:00 a.m. and greet the crows.

Most mornings I meditate right after I get up. After I meditate, I fill up my gallon jug of water and exercise. I need to sweat and move. I love anything where the instructor is like, “Faster! Go! Only ten more seconds!” Since we can’t do group fitness in person right now, I have to re-create it in my house. It doesn’t work quite the same, because I will stop and eat snacks in the middle of a video. But I’m trying. Exercise and meditation are the things that keep me sane and grounded. They’re the baseline.

On being drawn to end-of-life care:
Being around death has made me more honest. I see that what we don’t say chokes us as we die. People always think they have more time, and when they realize that they don’t, they have regrets about things they haven’t done. I try to do what I feel like doing right now. And if that means eating white-cheddar Cheetos for breakfast, I will. Which is what I did this morning. I won’t always be able to taste delicious things, so let me do it now.

On managing her clients:
I don’t take on more than one client at a time who is imminently dying, because I want to be on call for them. Whatever they need, I will do. When a client with just a couple of weeks or months left first comes to me, we’ll go through the long list of items to consider in death and dying, and then we’ll create a plan. That usually happens over the phone. Then I go to visit, put my hands on them, really see what their physical condition is, and see what kind of support they have.

I continue to visit every week or so until their condition starts deteriorating fast, and then I’m there more often. I might be there when they die, and if I’m not, I’ll come sit with their family or caregivers afterward until the funeral home comes. I may also help wrap up practical affairs — possessions, accounts, life insurance, documents. It’s exhausting for a family to have to think about that when they’re also grieving, and I’m equipped to help. I’ll sit on hold with insurance companies, make funeral arrangements, all that stuff.

Beyond those who are imminently dying, I often have several clients who need end-of-life planning consultations. I can take on a couple of those at a time. That could be someone who has just gone on hospice and it doesn’t look that bad yet, or someone who just received a diagnosis and wants to prepare.

On winding down after an intense day:
I’ll drink wine and hang out with a lover. I’ll go out dancing until 5:00 a.m. Sometimes I just want to shut the brain off after a long day, and the best way to do that is by spending time with friends and people who tickle me. But it’s also good to spend a lot of time alone, which is the default these days. I like silence.

On becoming a death doula:
I spent the bulk of my career in legal services in L.A., working with victims of domestic violence. Then there were some big budget cuts, and I wound up getting stuck doing paperwork in the courthouse basement. I was already depressed and burnt out, but it blossomed into an actual clinical depression. So I took a leave of absence and traveled to Cuba. While I was there, I met a German woman who had uterine cancer and was doing a bucket list trip. We talked a lot about her illness, and her death. She hadn’t been able to discuss a lot of those things before, because nobody in her life was making space for her to talk about her death. Instead, they’d say, “Oh, don’t worry. You’re going to get better.” I came back from that trip thinking I wanted to be a therapist who worked with people who were dying.

I applied to schools to become a therapist, but in the meantime, my brother-in-law got very sick. So I packed up and spent two months in New York with him. That experience gave me a lot of clarity on all the things we could be doing better in the end-of-life processes. It was so isolating and I couldn’t understand why. Everybody dies — so why does it feel so lonely? After that, I did a death doula program in Los Angeles, called Sacred Crossings, and then I founded my company, Going With Grace.

On leaving her law career (and a steady paycheck):
It wasn’t a hard decision to leave my job as an attorney. The challenging part had more to do with identity and what achievement means. I was born in Ghana, and we’re all raised to be doctors and lawyers and engineers. So I was going against societal expectation and parental expectation. It was also tough to be broke for a long time. My student loans were in forbearance. I spent a lot of nights lying on my mom’s couch wondering how I was going to make things work. If my friends were going out, they’d have to pay for me or else I couldn’t join them. To support myself while I was starting my business, I worked part-time jobs at a hospice and a funeral home.

Eventually, I started hosting small workshops about end-of-life planning. I charged $44 dollars for people to come together and learn how to fill out the necessary documents. Now I have my own doula training programs. I have about 100 students at the moment, all online.

On charging for her services:
I have to navigate the financial conversations with a lot of directness. Part of the challenge is that our society doesn’t see the financial value of having somebody be kind and supportive. Being able to hold so much compassionate space when somebody’s dying — that is a skill. It needs to be compensated highly.

On living with grief:
I’m constantly grieving with and for my clients and their family members, all the time. There’s no fixing it. I have to be present with my feelings and let them wash over me, in whatever expression they take. If I try to shut off that part of myself, it becomes much harder to function in everyday life. Grief doesn’t always look like crying. Sometimes it looks like anger, promiscuity, or eating everything under the sun. Like all things, it’s temporary.

On how COVID has changed her work:
We have to rely much more heavily on technology and remote communication. There’s also a lot more interest in the death doula training program. Death is on a lot of people’s minds, and I’ve seen a lot more people starting to do their end-of-life planning — mostly healthy people in their 40s with young kids. A lot of people have seen younger people die suddenly, and it’s changed their perspective.

On her own end-of-life plan:
I would love to be outside or by windows. I want to watch the sunset for the last time, and I want to have the people I love around, quietly talking, so that I know they’ve got each other after I leave. I want to have a soft blanket and a pair of socks because I hate it when my feet are cold. I want to smell nag champa incense and amber. And I want to hear the sound of running water, like a creek. I’d love to enjoy all those senses for the last time. And when I die, I want everybody to clap. Like, “Good job. You did it.”

I want my funeral to be outside, and I want all my jewelry to be laid out. As guests come in, they grab a piece and put it on. I want my body to be wrapped in an orange and pink raw silk shroud. They’ll play Stevie Wonder — “I’ll be loving you always” — and everyone will eat a lot of food and drink whiskey and mezcal and red wine. There will be colorful Gerber daisies everywhere, and they’ll take me away as the sun goes down. And when they put my body in the car, the bass will drop on the music, and there will be pyrotechnics of some sort. I hope my guests have a grand old time and dance and cry and hug each other. And then I want them to leave wearing my jewelry.

Complete Article HERE!