Arlena Marie from Arizona, Texas, decided to take a leap and ask in Side Hustle Nation, a Facebook group, how to become a “death doula” and market herself as one.
While some were aghast at hearing such a profession exists, others had their interest piqued because, morbid as it sounds, every person on the planet is a potential customer.
The word doula originates from the ancient Greek term doule and translates as a person who serves. Birth doulas are now common and, like midwives, provide services during the birthing journey. A death doula, on the other hand, offers emotional support to people who believe they’re nearing the end of their life and would like to make the days count.
Death is the single certainty in life, yet people continue to fear it instead of preparing for it. I wanted to create a death-positive landscape.
Avril Carr, death doula from Al Ain
While professional moirologists (also known as “crying ladies” in some cultures) have been around for centuries and are hired to wail at funerals, the pandemic has brought death doulas to the fore, as an alternative form of mourner.
Avril Carr is a death doula from Al Ain. She trained as a hypnobirthing teacher, breastfeeding supporter and paediatric sleep consultant, and realised that while a wealth of knowledge is available for the birthing process, the reality of death remains largely ignored.
“We’re suspicious of death, which is interesting because not everyone will give birth, and yet there are countless ways in which mothers and fathers are encouraged to prepare for birth. Death is the single certainty in life, yet people continue to fear it instead of preparing for it. I wanted to create a death-positive landscape,” Carr tells The National.
Having a calm presence to see people through difficult moments and celebrate any glimpses of beauty together is a much-needed trait for death doulas. Carr says the feeling of fulfilment when helping someone with death anxiety is an extremely rewarding experience.
“We care for clients in ways that are personally meaningful and affirming to them. Our focus is assisting people with planning, preparing and processing,” says Francesca Arnoldy, a death doula from Burlington in the US, who also developed the end-of-life doula training programme for The Robert Larner, MD College of Medicine at the University of Vermont.
The most heartbreaking thing is to hear someone say: ‘I wish I had known about you sooner’
Lala Langtry-White, doula
Unlike hospice nurses and other end-of-life support providers, death doulas are emotional companions first and foremost, and must be able to customise their services based on what a person is looking to do to help ease the process.
Planning could involve creating schedules to meet others, having conversations that help with the transition, organising a pre-funeral while the person is still alive and sorting through belongings. Some may even want to make a scrapbook or involve family members to help them through the grief.
The amount of grief and uncertainty the pandemic brought has made many – both the ill and the relatively healthy – want to discuss death and have all their affairs in order, be they practical or emotional.
While stay-at-home measures were enforced in many places across the world, death doulas, like most others, turned to technology and came up with creative ways to virtually bring families together during tough times, making people realise they needed tools and information to bolster their sense of readiness.
Jessica Mendivil, a death doula from California, developed free community calls and training for families to help them cope with the loss of loved ones and general lack of preparedness.
Carr realised that while she missed being physically present, she could still impart training virtually on setting the death space, which included different ways to record one’s legacy and sit vigil when death was near.
Small and Mighty Babies, run by Lala Langtry-White and Joanne Hanson-Halliwell in the UAE, set up and continues to offer an online Love Through Loss community, plus monthly support evenings and access to voluntary bereavement doula support and counselling with The LightHouse Arabia.
It’s a lucrative job, but professionals know it can be a vulnerable and intense journey. Death is still not an easy subject for most people and perhaps never will be, but Langtry-White says the most heartbreaking thing is to hear someone say: “I wish I had known about you sooner.”
As parents of a child with a progressive and potentially fatal illness, Maryanne and Nick O’Hara lived on hope. Hope that their daughter, Caitlin, who was diagnosed with cystic fibrosis at age 2, would prove the statistics wrong and live longer than the 46 years expected. Hope that she would receive the lung transplant she spent two and a half years waiting for in her early 30s. Hope that her body wouldn’t reject it.
That hope faded on Dec. 20, 2016, when Caitlin O’Hara died of a brain bleed at the University of Pittsburgh Medical Center, two days post-transplant. She was 33.
Shattered, her mother decided to try to give meaning to her grief. And so she signed up for a certificate program at the University of Vermont’s Larner College of Medicine to become an end-of-life doula, or “death doula,” working with individuals and families as they moved from this life into whatever is next. (The terms “end-of-life doula” and “death doula” are used interchangeably, though some find the latter a little too blunt.)
“In our culture, we go overboard preparing for birth, but ‘hope for the best’ at the end of life,” said Ms. O’Hara, 62, who lives in Boston and Ashland, Mass., and is the author of “Little Matches: A Memoir of Grief and Light,” published in April. “The training was really a way of going even deeper into my own grief and realizing how I could take my own experience and help other people have a better end of life.
“I saw for myself how horrifying it is during a medical crisis and then after a death, to realize that life keeps going and needs attending to,” she continued. “As soon as Caitlin passed, suddenly it’s over and the person is gone and you have to deal with the business of living. A good doula will support you with that.”
The word “doula” comes from the Greek word meaning “woman who serves,” though most people associate it with someone who helps during birth to usher in life. In recent years, however, more people have come to recognize the need for as much assistance at the end of life as the start, part of the so-called death positivity movement that is gaining momentum in the United States and other countries. The movement, popularized by the mortician and writer Caitlin Doughty, encourages open discussion on death and dying and people’s feelings on mortality.
“The beginning of life and the end are so similar,” said Francesca Arnoldy, the lead instructor at UVM’s End-of-Life Doula program. “The intensity of it, the mystery, all of the unknowns. You have to relinquish your sense of control and agenda and ride it out, and be super attentive in the moment.”
Unlike hospice workers, doulas don’t get involved in medical issues. Rather, they support clients emotionally, physically, spiritually and practically, stepping in whenever needed. That could be a few days before someone dies, sitting vigil with them in their last hours, giving hand massages, making snacks. Or it could be months or even years earlier, after someone receives a terminal diagnosis, keeping them company, listening to their life stories or helping them craft autobiographies, planning funerals. Prices range from $25 an hour on up, although many, like Ms. O’Hara, do it voluntarily. And like Ms. O’Hara, many have signed on to help give new meaning to their own grief while helping others in the process.
More than 1,400 people have graduated from the UVM program since its inception in 2017. Coursework, which costs $800 for eight weeks, includes writing farewell letters to loved ones, crafting their own obituaries, completing legacy work or a “Life Story Project” with a trained volunteer, and starting or updating their own advance care planning files. The program also recently started a “StoryListening” research project in which mourners across the country are invited to share their stories of loss during the pandemic with a trained doula. At the end of the hourlong session, participants are given a recording of their own conversation.
Much of the growing interest in these programs has come from artists, actors, young people and restaurant workers who found themselves unemployed during the pandemic and recognized that they could still be of service.
“People were reaching out from a variety of different ages, younger than we would normally see, because they realized that people were dying in their age category, which doesn’t usually happen,” said Diane Button, 62, of San Francisco, a doula facilitator at UVM and a member of the Bay Area End-of-Life Doula Alliance, a collective of death workers. “It made them more aware of their own mortality and really made them want to plan and get their documents and advance directives in order.”
Rebecca Ryskalczyk, 32, a singer in Vergennes, Vt., had always felt “kind of comfortable” with death. She lost two cousins in a plane crash when she was 12 and a friend to suicide four years later. When Covid put her performing schedule on pause, she enrolled at UVM. Her goal is to let people know that they don’t have to be afraid of death; nor do they have to do it alone. “Being able to help advocate for someone and to spend the last moments of their life with them and help them stick to their plan when they may not be able to express that is an honor,” she said.
Before the pandemic, Kate Primeau, 35, also worked in the music industry. Last June, after her grandfather died of Covid-19, she began researching how to host a Zoom memorial and came across the concept of a death doula. “I felt a huge gap between the amount of grief everyone was feeling and the resources available,” she said. She got certified as an end-of-life doula through Alua Arthur’s company, Going with Grace, and also volunteers in a hospice program. “I can’t believe how much I’m geeking out over all this death education.”
During the pandemic, of course, doulas had to shift the way they worked. That was one of the main challenges: They couldn’t interact in person. So like the rest of the world, they resorted to Zoom calls and FaceTime. Families often reached out for their own healing.
“A lot are coming to me for ritual and ceremony when they can’t be with their loved one physically and they’re alone in the hospital room,” said Ash Canty, 34, of Eugene, Ore., who refers to himself as a “death walker.” “There’s a curiosity that wasn’t there prior to Covid. They’re wanting to know, ‘How do I make sense of this spiritually? How do I be with this? Because I’m really struggling.’”
As for Ms. O’Hara, who is also a novelist, she is primarily helping people write their life stories. Her training at UVM was “humbling.” “I went into it thinking ‘I’ve been a volunteer with people who are dying, I’ve lost my daughter, I’m an expert in grief,’” she said. But the longer she studied, the more she realized that she was only an expert in her grief.
“You really can’t tell anyone else how to grieve,” she said. “You can offer advice, but there’s no timeline for grief. As soon as people get a diagnosis, they’re grieving. Their way of life is over. Everyone has suffered some kind of grief with the pandemic, even if they haven’t lost a person.”
She believes that grief and joy can coexist. “My grief is never going to go away,” she said. “I wouldn’t want it to. Grief and joy and love — it’s all part of the same spectrum. I’m grieving because I loved someone so much.”
Recently, Riley Keough — granddaughter of Elvis and Priscilla Presley — announced on Instagram that she recently completed The Art of Death Midwifery training by Sacred Crossings and is on her way to becoming a certified death doula. In the post, she said, “I think it’s so important to be educated on conscious dying and death the way we educate ourselves on birth and conscious birthing. We prepare ourselves so rigorously for the entrance and have no preparation for our exit.” Riley’s decision to become a death doula comes almost a year after her brother, Benjamin, died by suicide in July 2020 at the age of 27.
Many other women have decided to take on this noble role of helping people in their final days. There are various courses that will certify you as a death doula, including the International End of Life Doula Association (INELDA). This association trains doulas to a high standard of professionalism, where they learn how to listen deeply, work with difficult and complex emotions, explore meaning and legacy, utilize guided imagery and rituals, assist with basic physical care, explain signs and symptoms of last days, guide families through the early days of grieving, and more. We talked to a few death doulas to find out more about this unique profession.
Dana Humphrey, a New York-based life coach and death doula who is certified through INELDA, told POPSUGAR, “Death doulas help the active dying transition with ease. We help them have difficult conversations with their loved ones, so they may say goodbye with grace. We help them figure out their legacy project and help them complete it. We add presence to the dying during a busy hospice environment. We also provide support to the family if they are having a hard time with the transition.”
Death doulas are the people that hold the hand of a dying person, ask them about their wishes and try to make them happen, and advocate for them every single day, according to Humphrey. Some of the things she might do include asking the dying person what mood they would like to see and feel when the family comes to visit and then setting that tone, like by having guests take a minute to sit down and move to a place of gratitude before visiting their loved one. Or she might have visitors meet in a “fun station” to put on funny hats or bedazzle themselves in glitter to add lightness in the room.
How Is This Different From Hospice Care?
Suzanne O’Brien, RN, is the founder of the International Doulagivers Institute, who’s mission is to provide awareness, education, support, and programs to communities, patients, and their loved ones worldwide to ensure the most positive elder years and end-of-life process. She told POPSUGAR that a death doula is “a nonmedical person trained to care for someone holistically (physically, emotionally, and spiritually) at the end of life.” This job “recognizes death as a natural, accepted, and honored part of life.”
After years of working as a hospice and oncology nurse, O’Brien felt unfulfilled working hospice, where nurses manage the dying patient’s care but teaches the family how to do the actual 24/7 care. She said she typically didn’t have enough time with patients on hospice as she was only allowed about one hour, once a week with the patient, and she encountered many families afraid of death. This helped her realize that death is “a holistic human experience and not a medical one,” and she wanted to become a death doula instead.
“Every day brings different needs, but it will always center around support,” O’Brien explained. “I will get called by a family whose loved one was just given a terminal diagnosis and they do not know what to do next, or a family whose loved one is actively transitioning and needs more help in the home. [I also get] many calls from families and community members looking for education and resources to help facilitate the most peaceful passing possible.”
How Do Death Doulas Help Marginalized Communities?
Donna Janda, Thanadoula practitioner (another term for death doula) and registered social worker, and Ananda Xela, Thanadoula practitioner and life coach with over 20 years’ experience in social work who has trained with INELDA, both founded Embracing Daisies to empower clients to “see the cycle of life and death not as something to simply rise above but as something to move through with soul and awareness, creating a living and lasting legacy.” They chose this profession to deal with their own feelings about death, as it helped them let death inform the fullness of their own existence, as well as to become part of this burgeoning field in which they didn’t see themselves or other BIPOC well-represented.
“There can be different ways of seeing and dealing with death, and when we talked to both clients within our Black communities and other doulas outside of our communities, we noticed the differences in approach and practice,” Janda and Xela told POPSUGAR. “A lot of the work that takes place in our own communities involves more emphasis on creating comfort around the idea of just talking about death in an honest and open manner before reaching the point of being able to plan for it. It can be a challenge for people who are already in vulnerable positions, historically and personally, to find the desire to face death and accept the idea that it can create more joyful living and offer more control over one’s own narrative — something that is often denied to marginalized peoples.”
Janda and Xela said, “To us, a death doula is someone who can hold space and offer support to both an individual and their loved ones in various areas all along the path between living and dying — from the parts where death seems unimaginable to the parts where it seems inevitable.”
As Thanadoula practitioners, these women hope to aid their clients in seeing that “life and death are connected and give meaning to each other.” They believe that deaths can matter as much as lives, and their job as death doulas is to help patients “discover, create, articulate, and manifest your heart’s wishes.” They also give families space to grieve by taking care of some of the more practical aspects that come from someone nearing the end of life.
What Else Does Someone Need to Know Before Becoming a Death Doula?
If you are thinking about becoming a death doula, you should have a passion for other people, an open-mindedness about death, and the courage to help people through difficult times. O’Brien said, “People often ask, ‘How can you do that work? It must be so depressing.’ I have to say that it is the exact opposite. Working as a death doula has been the hardest thing I have ever done, but the most fulfilling and rewarding. It is an honor and privilege to work with families at this sacred time. What you learn from those at the end of life is wisdom that teaches us about life. It is the best decision I have ever made.”
Only Karen Hendrickson and Jo-Anne Haun, co-founders of Death Doula Network of BC (DDNBC), can approach the topic of death with the perfect balance of positivity, passion, and of course, dark humour.
“Back in the 1980s, Dr. Ruth talked about sex,” Haun said in a Zoom interview from B.C. “She brought education and humour to it and now our children are learning about it in schools. That’s what we would like to do with death.”
Commonly associated with births, doulas offer physical and emotional support. They often handle administration and act as a go-between for patients and medical staff to minimize stress for patients and their families.
But doulas also play a role in end of life. “Death doulas” not only fill the gaps between patients and the health-care system, but also bridge the gap between the health-care and funeral industry. Their work has become particularly important during the COVID-19 pandemic, which has isolated dying patients, interrupted death rituals and placed extra stress on families.
Hendrickson and Haun, who have been friends for 20 years, became death doulas together back in 2018. They founded the virtual group to start a discussion around death and dying for anyone interested in the death-positive movement.
DDNBC has grown quickly and continuously since their first virtual meeting in April 2020. The network now has close to 140 members throughout Canada and around the world.
Gaps in the health-care system
Hendrickson and Haun have been part of the fight to include doulas within the health-care system to help fill some of the gaps between the system as its patients.
“You have likely heard of the rock metaphor before. Basically, The big rocks are the diagnoses. The medium rocks are your support people. The small rocks are your treatments. The sand in between the rocks is the doula,” Hendrickson said.
Things like confusing paperwork, new medical teams, and unfamiliar systems have a devastating emotional impact on patients and their families.
Hendrickson described an instance where a young patient with terminal cancer kept having to renew his burial permit but the medical staff continued to insist that it wasn’t important. That form is required by funeral services to take the person’s body from their home. Without an up-to-date form, the funeral service would refuse to take the body and the family would have to call the police.
“They would arrive with their sirens on and everything, and be forced to treat it like a crime scene because that’s their mandate,” Hendrickson said. “Imagine grieving families having to witness that.”
Ingrid Ollquist, based in Los Angeles, started as a birth doula in 2017, mainly supporting people through abortions and miscarriages. She decided to become a pre-planning and post-death doula after receiving emotional support from a doula mentorship program herself.
After a 10-year battle, Ollquist lost her mother to multiple sclerosis (MS). During this process, she was in and out of hospitals dealing with lots of administration with little support. As a death doula, she hopes to prevent others from experiencing this stress and isolation.
“It brought distance between my mom and I,” Ollquist said. “It was so frustrating to just live in logistical spaces with a person that you love that you can see dying in front of you.”
Ollquist is now the founder of the free grief support group Nurture Ing after being mentored by Jill Schock, the founder of Death Doula LA (DDLA).
COVID-19 has changed how we die
COVID-19 has made the gaps between health-care and funeral industries larger. Government regulations restrict patients from having more than one support person when in a hospital.
For death doulas, these restrictions mean patients die without their loved ones by their side. Doulas and family members must connect with the dying patient virtually.
“A COVID death is horrific. It’s the worst. You are losing more than just life, but all end-of-life rituals,” Ollquist said.
Many memorial and funeral events have been cancelled, and burial and cremation services have been substantially delayed.
Olliquist hasn’t personally dealt with more clients but she has played a larger role in supporting other doulas. She says that many doulas are now experiencing death anxiety after witnessing numerous horrific deaths all over the world. People of all different ages are dying without family and without rituals.
DDNBC and Ollquist suspect that more people are going to be thinking about (and planning for) their deaths after the pandemic.
“The pandemic has waved death in our face. Mortality is now at the forefront,” Haun said.
Ashley Scott wants people to feel safe, comfortable
By Kara Mason
Ashley Scott describes the emotional side of her job as a death doula like a fountain in the middle of a lake.
Her job is to help shepherd a dying person through an experience that is so intimate, common and yet mostly taboo in American culture. Scott wants people to feel comfortable, safe and cared for in their last moments.
“You’re pouring out this energy and love and compassion and space for them to consume it all,” she said. “I really didn’t realize the amount of energy it took until my last client.”
The client, a woman who had outlived her husband and daughter, was standing up and alert when Scott first arrived at her home.
“I know who you are,” Scott remembers her saying. “I’ve been waiting for you.”
It gave Scott, who has worked in hospice care for over a decade, chills. She’d taken care of many dementia and Alzheimer’s patients and somehow, even as agitation and bursts of energy can be common close to death, this was different. The statement seemed “very cognitive,” she said.
The woman’s room was disheveled, stuffy and a daytime court television show was blaring, so Scott said she put her in bed, turned on some instrumental music, rearranged the furniture a bit, opened a window and dimmed the lights. She rubbed the woman’s arms and her face to make her comfortable.
“In that five hours we were able to hold that space for her and help her go into an active dying transition,” she said.
The woman had been in hospice care for more than a year before that day.
Scott officially started her journey as a death doula a year ago, but caring for people at the end of their life has been her passion since starting as a certified nursing assistant at a nursing home.
“It was just so beautiful, like to help and be there and basically just prepare and honor the shell that this person had,” she said of the first death she experienced as a hospice nurse. “After that, it was kind of just like if anybody was on the brink, I had this inkling of magnetism to them. I want to make sure they’re cared for and comfortable and loved and appreciated in their last days because it’s their most vulnerable point in life.”
Throughout her career at nursing homes, Scott said she knew there was something missing in caring for the dying. There wasn’t anybody to “hold the space” – a phrase that many people involved in end-of-life care use frequently in reference to death doulas’ work.
It wasn’t until a friend had sent her a link to a Zoom seminar about death doulas last May that it all came together for Scott, who is 32 and lives in Aurora with her fiance. She’s part of a growing number of workers dedicated to making death a more comfortable experience.
Doulas, by loose definition, tend to all the duties of dying that medical personnel do not. In a lot of ways they’re equivalent to a wedding planner, but for your final living moments.
They can help arrange funeral services, help complete legacy projects, make sure the aesthetic of a death place is exactly what a client wants and help family members cope after the passing of their loved one.
“We treat dying like a fast food experience,” Scott said. “And it should be treated like a five-course meal.”
For people who work in hospice care, the arrival and growing popularity of the death doula is welcomed, and it’s changing the approach and culture around an experience everybody will have.
Katelyn Van Valkenburg, the volunteer coordinator at Denver-based Namaste Hospice, jokes that she’s a little protective of Scott, who first started volunteering her doula services in November.
Van Valkenburg said she doesn’t want Scott to become overworked or burnt out because it’s become obvious how necessary doulas are to hospice care. Before Scott, the organization consisted of nurses, social workers and volunteers, but after working with Scott they’ve welcomed five more volunteer doulas.
“Some of us in hospice have grown accustomed to the routine death,” Van Valkenburg said. “They force us back into thinking about making this unique.”
Scott arrived at Namaste after two waves of the COVID-19 pandemic, but it felt “kind of like a new beginning,” Van Valkenburg said. For months, hospice nurses had been scrambling to care for patients, some inside nursing or retirement homes. Early on in the pandemic, sometimes Namaste’s workers weren’t even allowed inside facilities and had to find ways to comfort their dying patients from bedroom windows or over the telephone or a computer.
“It shook us to our core,” she said.
Nurses and social workers had to become creative, Van Valkenburg said. They arranged the donation of more than 150 radios for their patients, and they put aromatherapy diffusers in patient rooms when they could to make the atmosphere as comfortable as possible.
This winter, adding doulas to their care model helped hold the caretakers to “being fully present,” she said.
Even though neither private insurance nor Medicaid covers the cost of doulas, like it does for end-of-life medical care through a hospice organization, Namaste wants to eventually be able to pay its doulas. For now, they volunteer their services, mostly to meet requirements through certification programs.
Scott started her own private doula practice, called Benevolent Care, where planning services can range from $70 for one hour of Death Day planning to an extensive package where Scott is available around the clock. She said she usually works those costs out on an individual basis.
“Everybody is so different, and I don’t want to deny them,” she said.
While doulas don’t administer medical care, Nancy English, an assistant professor who teaches palliative care at the University of Colorado Anschutz Medical Campus, says there’s definitely a role for them in hospice settings.
“We need to look at death as important as birth, it’s a transition from one state to another. We know it’s a major transition, even if we don’t know what’s next,” she said. “The death doula helps us make it more sacred.”
English said she recently took a course for death doulas, and while she doesn’t plan on practicing as one, she wanted to see how it could help her prepare students for providing more holistic care.
“A doula can take the time to actually address some of the things that have been fragmented in care,” English said. “I think nurses are so creative and so caring as a group, and they want to do it, but you have one patient that’s dying in this bed and the next patient is coding. It’s just a difficult role.”
English, who was a hospice nurse herself for many years before becoming a professor, said the workload just doesn’t lend itself to the kind of one-on-one attention and comfort a doula can provide.
Scott said she believes her background as a hospice nurse has helped her in becoming a doula because she understands the medical jargon and also the struggle in not being able to comfort each patient as much as they might need.
It’s also good for the families of people in hospice care.
“Imagine having someone on your side, someone who is really right there with you walking alongside you in this process,” she said. “Someone that you could call who was there with you that saw certain things that maybe you missed, and you can call them and just be validated.”
“You’re drawn to it because either you have a curiosity or an experience,” she said.
The moment Scott learned that death doulas existed, she said she knew it was for her. That tends to be the case with most people who work in end-of-life care, said Cindy Kaufman, president of the Colorado End of Life Collaborative.
“You’re drawn to it because either you have a curiosity or an experience,” she said.
Kaufman and a small group of other doulas organized the collaborative because they saw a need for a common place for people working in the field. Somewhere they could connect services if they needed or just have a support system. The community has been steadily growing over the years, but Kaufman said she really saw an uptick about three years ago.
That’s in part because of a growing “death positive” movement, she said, which is largely credited to Los Angeles-based writer, activist and mortician Caitlin Doughty. In 2011, Doughty started a collective called The Order of the Good Death, which became a foundation for much of the crusade to see death in a brighter light.
Since then, death doulas have grown in popularity, according to Kaufman. There isn’t a sure way to tell just how many doulas there are in Colorado because they tend to work in their own private practices or through volunteering like at Namaste.
The movement has also birthed “death cafes” – groups where people can gather to talk about all aspects of dying – all over the country. English started a Denver-based death cafe in 2014, which typically met Sundays at the Tattered Cover bookstore before the pandemic. For the last year, she’s been hosting a small group on Zoom.
“They’ve been wonderful,” the professor said, echoing Kauffman that Westerners are beginning to view death in a different way.
Kaufman, English and Scott each say they see the shift, and maybe the pandemic – a collective experience of sudden death – may push forward even further.
“A life lost is a life lost and we need to honor that, and during COVID we didn’t get to,” Scott said. “We didn’t get to honor the dying process. It literally just happened, and I guess that’s what really drew me into being a doula. We get to honor the process.”
In a field that is quickly growing but evolving due to the coronavirus pandemic, death doulas are providing comfort for the terminally ill and helping their family members grieve.
Similar to how a birth doula supports an expectant mother through the process of bringing a life into the world, an end-of-life doula – a trained, non-medical professional – guides a person through the final stages of life.
Mariah Riess, a certified end-of-life doula, often receives calls from new clients following terminal diagnoses.
Riess helps them navigate all aspects of death, from making legal, financial and funeral arrangements to deciding where and how they want to die.
“Death, in some ways, it’s the biggest event in our lives, and for many it’s the most disappointing to think about or have to experience,” Riess said from her Dover home. “There’s maybe a way to bring grace to this process and also information and understanding to this process of dying.”
Riess’s goal is to eliminate the stress and fear of one’s own mortality, providing comfort before and during their death and supporting their grieving loved ones after. Her work with each client can span days, months or years.
Riess believes the isolation many are experiencing during the pandemic has led clients to services like hers.
“I’ve seen quite an uptick in my practice, because I’m not sure there are places where people can talk about what’s going on with them when they’re facing the death of another or their own imminent demise, decline, diagnosis,” Riess said.
Terry and Melinda Sortwell began working with Riess last June. The Maine couple had been referred to Riess, who also provides nutrition and wellness services, as Terry struggled with digestive issues and gaining weight.
Terry, now 71, had been diagnosed with bile duct cancer in 2018 and had undergone extensive surgery and six months of chemotherapy before another cancer scare.
While further testing showed the cancer had not returned, his wife, Melinda, 66, experienced her own cancer scare. She, too, would receive good news, but considering their own mortality had been eye-opening.
“The fact is, we’re all going to die,” Terry said by Zoom. “We all think as human beings, ‘Oh, no. It’s not going to happen to me now. It’s not going to happen to me.’ Everything’s fine until it isn’t, and everything comes to a screeching stop. So you might as well plan for it.”
When the couple, married for 45 years this September, discovered Riess provided end-of-life services, they began working with her regularly, meeting virtually.
“It’s wonderful to think you can do it all yourself. But emotionally, there’s so much going on when you think you’re leaving your body, or you’re letting people down,” Melinda said. “The last thing you need to think about – or all the things you haven’t thought about – paperwork-wise and what are your desires and wants at the end of your life.”
Between Riess’s appointments, she asks her clients to complete assignments. For Terry, she instructed him to visit a hospice center so he can make his own plan for how he wants to spend his final days.
“[Riess’s] field and what she does, it takes all the worry away – a lot of the worry away,” Melinda said. “This is an important step and important support system for us and our family.”
Interest in end-of-life services has been increasing, even as doula work evolves due to the COVID-19 pandemic, according to Henry Fersko-Weiss, co-founder and executive director of the International End of Life Doula Association (INELDA), a non-profit that trains and certifies death doulas as private practitioners.
“I see people much more open to talking about death and dying,” Fersko-Weiss said by phone Wednesday. “The pandemic has made us all more conscious, aware and engaged with facing dying. That’s something that’s happening universally.”
Some death doulas have temporarily stopped providing services during the pandemic, while others, like Riess, have converted in-person meetings to online or telephone appointments.
While she already serves clients across the country remotely, Riess will soon resume appointments at her home with local clients, as she has now been fully vaccinated.
“Dying is a very intimate experience. So, I know it’s much richer and better if a doula can be physically present,” Fersko-Weiss said. “But it’s better to have a doula virtually than not to have a doula at all.”
While Terry undergoes scans and bloodwork every few months, he and his wife are stable and feeling well. Still, the couple feels their sessions with Riess are important, to prepare for their final days, whenever that may be.
“The point is to have these conversations when you’re feeling good,” Terry said, “so that you’re able to make decisions and talk to our children and think about things rather than try and solve these problems or make these decisions when you’re in a crisis mode.”
For Riess, her job is more of a calling – the most fulfilling role she could imagine.
“It’s such a privilege for me to be in the lives of the people that I’m in the lives of and to see the courage and the love,” Riess said. “And the opportunity for me to be involved with these families at the most personal, really profound time of life – I look forward to going to the end of my own life doing this.”
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.