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A Guide to Dying

— We Talked to 3 Death Doulas

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

By Penny Min

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

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

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

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

What does a death doula do?

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

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

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

Interview questions have been edited for length.

Alysha Suryah, Baltimore

Photo by Elizabeth Kopylova

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

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

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

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

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

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

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

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

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

Catherine Durkin Robinson, Chicago

Photo courtesy of Catherine Durkin Robinson

Q: What led you to become a death doula?

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

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

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

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

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

Laura Lyster-Mensh, Washington D.C.

Photo by Isabella Carr

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

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

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

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

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

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

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

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

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

Complete Article ↪HERE↩!

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As a death doula and professor who teaches about dying, I see a need for more conversations about death


Students in a death and dying class have the opportunity to become a ‘death ambassador,’ in recognition of their new level of awareness that could help foster healthy conversations about death and dying.

By

A growing number of folks may have heard of the death-positive movement, death cafés or death-friendly communities — each of which are animated by the understanding that welcoming our own mortality could improve the quality of our lives.

There is truth to these claims. Both as a person who has taught courses on death, dying, and spirituality for more than 20 years, and as a death doula, thinking about dying and working closely with the dying has fostered in me a deep appreciation for what it means to live well and meaningfully.

However, my university students have often told a different story. Both informally in class discussions, and also in a public presentation about why death education matters, for the online Lifting The Lid International Festival of Death and Dying, many have expressed how their learning with me signals their first times talking about death.

When I hear this, I am aware of how our society needs to do a better job at nurturing more conversations about death, and building communities that support people navigating questions surrounding death and dying.

Denying death

The easiest way to exile death from our conversations is to label it “morbid,” ensuring we never need speak of it.

My first lecture in every death class begins with a discussion of the pervasiveness of death denial in dominant modern western culture.

I ask my students: “How do people react when you tell them you’re taking a course on death?” Invariably they have heard things like:

“That’s so morbid!”

“How depressing/dark/strange/weird!”

“Why would you want to study that!?”

My courses are designed to introduce students to the study of death through history, culture, religion and spirituality, ritual, literature, ethics and social justice

We explore social and cultural barriers affecting how services are structured and the implications for end-of-life care. For example, racism and inequities in health care and other institutions contributes to dangerous disparities in treatment and life outcomes, influencing Black, Indigenous and racialized communities’ collective trauma surrounding dying and death.

Students read and learn about how humans have understood and interpreted death, as well as some of the pressing social issues that we face in contemporary death care and practices.

Inspired by the work of Dr. Naheed Dosani, palliative care physician and health justice activist, I now include a class on palliative care for people experiencing homelessness and dying in the streets.

Anishinaabe death doula Chrystal Toop, a Member of Pikwàkanagàn First Nation, also visits my class to speak about compounded trauma of death and collective grief experienced by Indigenous Peoples, and why she created her own Indigenous death doula training to reclaim cultural teachings.

I also bring what I have learned as an end-of-life companion from hours sitting with and listening to people who are facing their own death or the death of those they love.

The gentle skills learned there are discernment, attention and compassion. As students reflect on what they will take with them from the course, they perceive the value in this kind of experience I bring to the classroom as much as in an article on palliative care and its history.

Negative consequences of denying death

My courses on dying and death have always drawn students from other humanities programs like English, fine arts and history. But over the years, more students from the professional programs, such as nursing, criminal justice and social work are enrolling.

While students’ professional programs — for example, in nursing or social work — seek to address various topics surrounding aging, trauma, death or end-of-life care in varying ways, students also need opportunities to think about their own mortality and, to cultivate some self-awareness in order to be present for others experiencing death and dying.

Some of my nursing students raise questions like: How do they talk to the loved ones of patients who are dying? What should they say?

These questions are hard enough when death is expected. They are exceptionally difficult when it isn’t, when the death is of a young person, a child or a baby.

New level of awareness

Students also express their disappointment and confusion because what they face in the aftermath of death and loss is often isolation and solitude.

While research about how to support children and young people navigating death amplifies the need for open and sensitive discussion, some students, especially white, middle-class students, speak of experiences of having been shielded from death by those who thought shielding them was the best way to protect them from fear and anxiety.

Simply providing the safe space to begin to have these conversations goes a very long way towards assuaging their fear and grief.

In part this is because supporting the passage of life to death, and supporting grief, is (or should be) a collective experience.

Community death care is everyone’s business, and while awareness of our own mortality is an important part of that, awareness and activism around racism, violence and injustice in end-of-life care is essential.

Image showing cards with a crow that say 'death ambassadors.'
Some of my students have also created their own death-awareness social media accounts as part of being a ‘death ambassador.’

Death ambassadors

Figures like Dosani are making social media outreach part of their teaching and care practices. In recognition of the importance of creating death supportive communities, I also started an Instagram account, @death.ambassadors, to chronicle my death teaching.

At the end of each death course, I offer students the opportunity to be a “death ambassador,” in recognition of their new level of death awareness that could help to foster healthy conversations about death and dying in our culture.

Some of my students have also created their own death-awareness social media accounts, and found themselves supported by a death-positive community of educators, end-of-life companions, funeral directors and death doulas.

It is a universal truth that one day we are all going to die and that means we all have a serious stake in death education.

When it’s your turn, or the turn of someone you love, don’t we all need people who have considered how to support us in navigating dying and death? Let’s do the work to make that a reality for everyone.

Complete Article ↪HERE↩!

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Young workers finding their place in end-of-life care

— ‘I realized death can be positive.’


Mary Phelps, a grief massage therapist and Shiatsu bodyworker, gives a client a massage on Aug. 28, 2023, in Chicago. Phelps’ work focuses on getting the nervous system to calm down. Phelps is a member of the Chicago Death Doula Collective.

By JENNA SMITH

At age 19, Mary Phelps stood at her grandmother’s bedside. In mere minutes, she would watch the woman with whom she had shared a home and a life take her final breaths.

She held her grandmother’s legs, lightly massaging them as the seconds ticked by. “I just remembered her becoming so young in the face and relaxed,” Phelps said. “That’s when it came to me. Death can be calm and peaceful.”

Phelps’ perspective toward death and dying would forever be changed.

“It was just a really beautiful moment,” Phelps said of her grandmother’s passing. “So to see that, I realized death can be positive.”

Now, six years after that transformative moment, Phelps is one of Chicago’s youngest death doulas at age 25.

The role of a death doula is to educate clients on what to expect at the end of life. The little-known field is centered around easing an individual’s dying process, such as by informing the person of their burial options, serving as a point-of-contact between the person and their loved ones, and assisting in caregiving. And Chicago’s young and diverse end-of-life care workers are striving to provide comfort and representation during an inevitable period of life.

Young doulas say they aim to change the perception that death is laden with gloom.

Phelps, for example, opened the door to her North Center office sporting a messy bun atop her head and a welcoming smile. She pressed her hands together in a namaste symbol and offered a small bow.

With an elephant tattoo on her arm and beads in her hand (a gift for completing her doula training), she sat down, folded her legs in a rolling office chair and began to share her story. When the beads broke between her fingers as she spoke, she smiled and said, “must be the energy clearing.”

Phelps describes herself as “death positive.” While the expression may raise eyebrows, she uses it as a way of calling attention to the impact of her work.

“I think some people hear the word ‘death’ and they’re like, ‘What witchcraft is going on here?’ But it’s not like that,” she said. “It’s just helping us to give better care to those that are dying, because they get neglected a lot.”

Phelps channels better care through touch. She offers massages to hospice patients, fulfilling a need that she feels is underappreciated in the elderly community.

“A lot of times, they may not even be getting hugs or even gentle pats on the back,” she said. “So the way I see it … touch can help them feel more comforted and safe. It brings a calming presence. Yes, this is a scary time, but this can be a safe space.”

The fear surrounding death is something that Phelps has encountered throughout her career. However, she and her partners at the Chicago Death Doula Collective work to help communities unlearn that fear.

Phelps may be one of the youngest death doulas providing care in Chicago communities, but she is not the only one.

Sam Kopas, 34, is new to the death doula scene. While on a thrifting excursion, she spotted a flyer advertising support for elder care, with one of the options listed as “death doula.”

“I thought that’s the craziest thing I’ve ever heard,” Kopas said.

The flyer made her think about her travels through Europe with her husband. She recalled seeing the Prague Astronomical Clock that tolls every hour, reminding her that regardless of your age, death comes for us all.

“I thought that was really metal,” she said with a chuckle. With those memories coming to mind, she said she suddenly became acutely aware of the infrequency of open conversations surrounding death in America.

With her interest peaked, Kopas began to research Chicagoland death doulas to learn more about the practice. Soon, she found herself under the tutelage of Catherine Durkin Robinson, the owner of Anitya Doula Services and a death doula and educator.

Kopas became one of Robinson’s youngest students.

“I love seeing younger people. We need as many people as possible to get into this because so many different kinds of folks feel comfortable with so many different kinds of folks,” Robinson said. “I want to see more people who are trans, who are part of the LGBTQ community, getting trained to do this work.

“I think she brings a really bright perspective to the work,” Robinson said of Kopas. “Because sometimes when we’re dying, we want to be around people that have familiar language, that use similar words, sometimes that look the same and are in tune with what we’re going through.”

Robinson said that although younger workers are needed in the field, youth does not come without its challenges. She said some patients prefer an older practitioner. “Being in end-of-life work as an older woman, I’m thrilled with this process of getting wiser. That’s actually needed in this work,” Robinson said. “It’s comforting; we know a thing or two and we’ve been around the block.”

Kopas echoed these concerns, saying, “I definitely think there’s some challenge with clients because when there’s an age gap that’s so significant, where someone’s in their 70s or 80s talking to someone who’s a good deal younger than them, there’s probably even more of that intensity of, ‘What would you know that I don’t at this point?’”

Kopas navigates that resistance by acknowledging the challenge as it arises. She said that holding the client in unconditional positive regard and addressing their discomfort directly is the key.

“Just saying, ‘I hear you, this is rough,’” Kopas said. “I’m certainly not here to fix the disease or cure it, but to give you the most comfortable space in the end.”

When envisioning end-of-life care, Kopas said, a “standard kind of patient” comes to mind, someone elderly and bound to a hospital bed. But not everyone seeking end-of-life care is elderly. For young patients, doulas can adjust the care and comfort priorities.

Community health care worker Kandis Draw was forced to grapple with such adjustments as she cared for her sister battling liver failure at age 22. While burdened with grief, she discovered the distinct differences of navigating the dying process with someone in their 20s.

“When you deal with people who are in their 60s and up, some of them have the attitude, ‘Well, I’ve lived my life. I don’t have any regrets,’” she said.

She recalled one senior saying, “When you get old, stuff happens to you. There’s no way around that.”

This peaceful acceptance can starkly differ for those who are dying at a young age. According to Draw, 41, young patients can be burdened with a different sentiment. “‘This is not fair. I deserve another chance. I wasn’t parented right. I wasn’t cared for right. I didn’t have the resources. People just threw me out there,’” Draw said, recounting some of the comments she’s heard over the years.

Despite their grief, Draw said she was able to connect with these patients. “I think that you can communicate better when it’s someone that’s close to your age. You can have more of an open conversation,” she said.

Like Draw, Maureen Burns, who is 38 and a fellow collaborator with the Illinois-based HAP Foundation for hospice and palliative care, considers her work to be heavily influenced by her personal experience with grief and loss.


Mary Phelps gives a massage on Aug. 28, 2023, in Chicago.

Hospice is comfort care without curative intent; the patient no longer has curative options or has chosen not to pursue treatment. Palliative care is comfort care for people with a serious illness with or without curative intent.

Burns reflected on the death of her father in 2021. Despite working in health care, it took her a “surprisingly long time” to realize that her father was a candidate for hospice care. He struggled with chronic obstructive pulmonary disease, or COPD. While his decline in health made daily living and traveling to doctors’ appointments challenging, she did not consider that those challenges could be addressed by hospice care. “I think that informs my work now,” Draw said. “If it was that hard for me, imagine someone who hasn’t heard the word hospice. Imagine what they could be missing out on.”

For Kopas, becoming a doula was a way to bypass structures that imagine a standard patient. “I know lots of families that don’t think that hospice would be a good fit for them because they don’t fit the standard kind of patient or family that would go through it,” she said.

Kopas focuses on ensuring that everyone has the information they need. “Did you know that green burial is an option? Did you know that palliative care can start early? Did you know that you can opt into hospice and then opt out if you want?” she asked. “All of this is just stuff that I felt like, if I could be a messenger for that kind of information to people who didn’t know it, then that would be a significant improvement right there.”

For many of Chicago’s end-of-life-care workers, having conversations about a patient’s legacy and final moments have affected how they plan to move forward in their own lives.

Kopas found death doula work to be her method of leaving a lasting legacy in the world. She recently concluded that “parenting might not be for me.” This decision led her to ponder “what could I still do and bring to the world that would be valuable and helpful, and offer a perspective and nuance and ease someone’s time here.”

The answer was to be there for people when they are at their most vulnerable.

Phelps’ open and positive approach toward death isn’t limited to her work. She has begun planning for her own death and encourages other young people to consider what a good death would look like for them.

For her, a good death would take place in her home, after which she would have a water cremation and have her ashes turned into a diamond. Although many young people don’t like to discuss death, the 25-year-old said firmly that, “Dying does not have to be a scary process.”

The work of the city’s death doulas also reminds the public that advanced care planning can be pursued at any age.

“Death work isn’t an exclusively older generation (issue),” Kopas said. “It can be a regular conversation. Having these chats before anything tragic, terminal or diagnosis-related happens is a large benefit that a lot of people don’t think about.”

Chicago’s young end-of-life specialists provide varied forms of care. Draw hosts conversations with her Englewood neighbors who are navigating existential dread. Phelps massages the shoulders of an Uptown resident who has spent years bearing the burden of grief. Burns sits with Far North Side neighbors planning for a nearly unspeakable reality where they leave their children behind. Kopas spends hours studying the logistics of hospice care options so her client has the information needed for a death with dignity.

Regardless of the day-to-day appearance of their work, one message stays consistent: All of Chicago’s communities need end-of-life support.

“We need younger workers, older workers, Black workers, Hispanic — we need everybody because everybody is gonna need this type of care. It’s not just one group that dies or gets sick,” Burns said. “Everybody needs it.”

Complete Article ↪HERE↩!

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She helps people cope with death.

— The Indiana Attorney General’s Office made her stop.

By Johnny Magdaleno

As one of Lauren Richwine’s clients lay in bed, his stepdaughter wrote a note and slid it into the shirt pocket over his motionless chest. Friends from the local music scene cried at his side as they prepared to carry the former bassist out of his home, permanently.

Cancer killed the young father. Instead of being rushed away to prepare for burial, his family kept him at home for a day. He rested in a sunroom, Richwine said, where the people in his life grieved and his children climbed in and out of bed with his body.

Richwine runs Death Done Differently — a Fort Wayne company specializing in “community-led death care.” She does end-of-life planning and informs people about alternatives to conventional funerals.

“Some people (say), ‘Isn’t it going to be traumatizing to the children, or couldn’t it be traumatic to see or be with someone after they’ve died?’” Richwine told IndyStar. “And I think, in my experience, it’s the opposite. It’s traumatic when we remove them too fast because we haven’t had time for this to really sink in.”

But as of this week, her work is on hold. On Wednesday she launched a new lawsuit against Indiana after the state shut her business down.

Attorney general’s office says she needs funeral director license

Death Done Differently caught the attention of the Indiana Attorney General’s Office in 2021. Someone filed a complaint against Richwine with the office. The complaint didn’t allege she harmed or deceived anyone, according to a copy reviewed by IndyStar, but said she “may require a license from the state to provide funeral services.” It doesn’t say who complained.

After giving Richwine the chance to reply, the office asked the State Board of Funeral and Cemetery Service for a cease-and-desist order.

Death Done Differently “offers several services that constitute the practice of funeral service,” the office said. It points to services like discussing body disposition, helping with legal paperwork and “readings, music, conversation, healing touch, or general companionship with the dying individual.”

State law says the practice of funeral service includes “the counseling of individuals concerning methods and alternatives for the final disposition of human remains.”

The board agreed. It issued a cease-and-desist order against Richwine on Aug. 21.

Richwine says her work is protected by the First Amendment

Her lawsuit claims Indiana is restricting her free speech because her work is speaking with and educating clients. Richwine’s attorneys want a judge in federal Northern District of Indiana court to issue an injunction that would stop the state from denying her “ability to speak with adults regarding death care.”

“There are a lot of people who currently talk about funeral options, funeral care that are not funeral directors,” Richwine said.

She gave the example of pastors. Some have “healthy relationships” with funeral homes and can be a link between congregants and funeral providers.

“Are they going to now be not allowed? Where does this end if they don’t want you talking about any of the laws and any of the funeral code at all?”

IndyStar has asked the attorney general’s office for its response to the lawsuit.

Former client: ‘She was just there to facilitate’

Andrea Schwartz’s family called Richwine hours after her daughter, Nova, was stillborn. It happened five years ago.

She told IndyStar Richwine played a different role than the funeral home her family worked with.

“Our experience was she was just there to facilitate, give us information, show us what our choices were, support us through it,” Schwartz said. “But then as far as the actual funeral, all the procedures and everything were done through a funeral home with their own funeral director.”

Richwine gave “warm support and comfort.” It was like night and day compared with Schwartz’s past experiences with elderly deaths in the family.

“It was never a positive experience” working with corporate funeral homes, she said. It was cold and impersonal, “like you’re just a number to them.”

“Kind of feeling like you were at a car sales lot the whole time,” Schwartz said.

Lawsuit says traditional funerals ‘medicalize’ death

Richwine’s lawsuit says she advises people about options other than the “historically recent innovation” of “embalming the body, holding a ceremony in a funeral parlor, and cremation or burying in an expensive casket.”

That process “medicalizes death,” the suit claims. It points to home funerals as one alternative, adding that bodies don’t present health risks to those in their vicinity for at least three days “in ordinary circumstances.”

“There’s a weird dynamic at work, where we have been normalized to relate to someone when they die as … not really belonging to us anymore,” Richwine said. “That’s part of what my work comes out of, this very strong belief that they still belong to those loved ones and the relational ties that were created, those deserve to be honored and respected.”

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The Positive Death Movement Brings Comfort to the Dying and Their Families

— Most people associate the word doula with the beginning of life, not the end of it. But end-of-life doulas have become trusted sources of support.

Ed Nolley on his favorite bench, honoring veterans, at Gilchrist hospice.

By Christianna McCausland

When Ed Nolley arrived at the bedside of the 95-year-old woman, she was actively dying. Given her advanced age, she had no friends and few family members left to lean on. Her daughter, who lived on the West Coast, was rushing back to Baltimore to be with her, but time was short. In the meantime, the nursing home reached out to a social worker at Gilchrist, one of the largest providers of palliative care in the region. They sent Nolley, a volunteer end-of-life (EOL) doula, to keep vigil with the woman in the daughter’s absence.

“As soon as I arrived at her bedside, the nurse called the daughter, who was stranded in Chicago, and let her know that ‘a young man was sitting with her mom and would stay with her until she arrived,’” says Nolley, who, at 77, laughs at the description. “The mother did not make it before her daughter arrived, but I stayed at the facility until she did. The appreciation was such that I will never forget.”

When Nolley tells friends at parties that he’s taken up hospice work in retirement, “people just scatter,” he says, wryly. While it may not make him popular socially, Nolley says working with people at the end of their lives is extremely rewarding.

“Hospice is not a dirty word,” he says. “Hospice helps patients and family members go through the dying process in the way that that person and the family want them to go. To go in the way you want to go is a beautiful thing.”

Most people associate the word doula with the beginning of life, not the end of it. If you have any familiarity with the term doula at all, it is likely a birth doula, a person who provides support before, during, and shortly after delivery. This nonmedical care may involve assisting with breathing and massage or acting as an intermediary between the person delivering and medical providers.

But in the past few decades, the doula world has exploded. There are now postpartum doulas, transition doulas (to assist during gender-affirming transition), abortion doulas, and fertility doulas. Doulas can be paid or, like Nolley, work as volunteers. EOL doulas, who emerged in their modern form in the 1990s, “are non-medical companions to the dying and their families,” according to the End-of-Life Doula Council.

In the first half of the last century, the vast majority of Americans died at home. Fast-forward to the 1990s and that trend reversed, with most people dying in some sort of facility. That’s created a society so distanced from death that we no longer understand how to offer support to the person experiencing it and their loved ones.

“We have generations of individuals who haven’t seen a loved one die at home,” says Douglas Simpson, executive director of the International End-of-Life Doula Association (INELDA). “That creates a culture where we do not talk about death. So how do we normalize dying? With more knowledge, individuals can have complete control over how they die.”

Nolley was drawn to eldercare after leaving a career in banking—he was senior vice president at Wells Fargo—and the U.S. military. Growing up, he worked during the summer as a nurse’s orderly at Keswick, a senior care facility. It was there he first encountered a death doula and was taken by the work. In retirement, Nolley became one of the approximately 60 volunteer EOL doulas at Gilchrist.

“A doula is a person who has a ministry of presence,” Nolley explains. “Presence in terms of the patient, presence in terms of the family before and after. We do not administer medicine; we provide peace of mind and assurance to the patient and family that there is someone there.”

How does that play out practically? Typically, a doula is requested to provide company to a dying person so that person is not left alone if, for any reason, the family isn’t present. Perhaps their family is worn out from keeping vigil and wants to feel comfortable knowing their loved one has someone with them while they get something to eat, catch a quick shower, or go home to get some sleep; perhaps the family does not live locally or is estranged; some people simply have no family left. Whatever the reason, “I do not believe anyone should die or experience dying alone,” says Nolley.

“WE HAVE GENERATIONS OF INDIVIDUALS WHO HAVEN’T SEEN A LOVED ONE DIE AT HOME.”

Depending on their training and the person’s wants, some doulas may do a project to draw a patient and family together around happy memories, like organizing photo albums. Others might offer guided meditation, information on funeral needs or, if the dying person wants a specific ritual at death—perhaps something as simple as a piece of music playing in the room—the doula may organize it. But being present is fundamental to anything else a doula can do.

Wendy Kobb is a clinical social worker who has worked at Gilchrist for 17 years and does facility care at regional nursing homes and assisted living centers. Kobb explains that when clinicians determine a person has a week or less to live, an impending death protocol is put in place, which includes visits from staff—nurses, clergy, social workers—every day, and can include a volunteer doula.

“Particularly in the facilities where I work, they aren’t living with family, so the peace of mind having a doula there provides is a great comfort,” she says. “Sometimes it’s more about the family than the patient.”

If it’s an inpatient visit, Nolley first goes to the nursing station, where he’s briefed on the patient’s medical condition and any specifics about them. Is the person a veteran? A musician? A sports fan? Does the family say the person appreciates touch and therefore may want their hand held? Would they enjoy being read to? Are they religious?

“Then I go into the room and introduce myself and explain that ‘I’m going to be sitting with you,’ even if the person isn’t awake,” says Nolley. “The sense of hearing is the last sense to go, so I always believe they can hear me and are listening.”

Ironically, Nolley says he “tries to keep it light,” maybe talking to the person about where they went to high school or their military service. (A veteran himself, Nolley takes a personal interest in ensuring veterans’ wishes at end-of-life are honored.) If it’s late at night or in the pre-dawn hours, he’ll dim the lights, turn off the television if a family member left it on earlier in the day, and just stay in the stillness.

“When you are sitting with a person, you are totally engaged with them,” he says. “You aren’t watching TV; you aren’t scrolling your phone. It overcomes your brain and your heart.”

Most of the people Nolley sits with are elderly, though he has done a few visits with pediatric patients. He admits it’s harder when a patient is young, but his intention is the same. “The mindset is always, ‘I’m going to sit with this person to help them make this transition in a positive way.’

“It’s an amazing experience, done right, to sit with a person who is dying,” he says.

There are organizations that help people get comfortable with that experience and the doula role. INELDA is a member-based nonprofit that offers EOL doula training and advocates for the calling. Simpson explains that there’s no magic to what a doula does.

“This work has been happening for eons, but then we industrialized birth and death and took it out of the home,” says Simpson. “Now we’re bringing it back.”

It’s not incidental that Simpson references birth and death in the same breath: EOL doulas emerged from the birth doula movement. In the 1960s there was a backlash against the highly medical interventionist approach to birth, which led to the growth of midwives and more natural birthing practices. The hospice movement also gained steam in that era when a nurse, Cicely Saunders, opened the first hospice in 1967. While the origin story of EOL doulas is more a complex web than a linear timeline, a birth doula named Phyllis Farley is credited with conceiving of the first volunteer death doula program at a NYC hospital in 2001. Elisabeth Kübler-Ross, author of the groundbreaking 1969 book On Death and Dying, and former hospice nurse Deanna Cochran, were also influential in the death doula movement.

Birth and death are the two most important and inevitable events in a human life and have much in common. And just as a birth doula has information and experience to share, part of what EOL doulas bring to the bedside is knowledge about death and dying that can be comforting. While it may be easy to think an EOL doula is depressing or macabre, no one would ever recommend someone give birth alone, ill-informed, and without support—why should death be any different?

“IT WAS LIKE THE QUIET JUST BEFORE A SNOWFALL.”

Simpson learned about EOL doulas from a midwife who assisted at the birth of his son. That, combined with being present at his own father’s death, lit the spark that informed his engagement with INELDA.

“I remember the quiet peacefulness,” Simpson recalls of his father’s death. “It was like the quiet just before a snowfall.”

Like Nolley, he struggles to put the experience of being with a dying person into words. “By being present you are honoring that person,” he says. “It’s an honor and it is powerful. I can’t wrap words around the value of it.”

To excel as an EOL doula, Nolley says a person needs to be comfortable with being in the presence of active death, but they also need to be comfortable with family dynamics. Relatives bring plenty of baggage to the deathbed and it’s up to the doula not to judge or interfere, only to keep the peace so the person passing has the calm they deserve.

Compassion. Presence. Calm. Intuiting needs. They’re hard skills to teach, but many are trying. INELDA offers a basic-training program that lasts 40 hours. Simpson says they’ve trained over 5,600 people since INELDA formed in 2015, 155 in Maryland. At Gilchrist, training occurs over two weekends and it is preferred that doulas have documented time doing home visits with hospice patients prior to the course. It’s impossible to know how many active EOL doulas exist, as there is no official, universal accrediting body (though the National End-of-Life Doula Alliance has created best practices and proficiency assessments).

Simpson says if someone is looking for an EOL doula, make sure the person can document they’ve been doing the work for several years and that they have some form of training. The doula also needs to be a good fit for the personalities of the dying person and the family.

Kobb says that most of the staff and volunteers at Gilchrist are people who have experienced a death—maybe a peaceful one, maybe one less so—and were inspired by that to get into this work to ensure that others have the best experience of dying possible. With a doula, the vigil of dying can have some peace, dignity, even humor. Kobb says the doula facilitates whatever will make the person or the family comfortable in that moment, whether it’s talking about their career or family, listening to music, reading from the Bible, or reading from the latest bestseller.

“Hospice is very interdisciplinary, we all have our roles and we’re all connected; the nurses have the clinical piece, the social workers have the emotional piece, the chaplains have the spiritual piece,” says Kobb. “What I’ve found is that doulas get to focus on the joy.”

Nolley is a pretty joyful person, jovial and chatty. What he’s learned from being present with so many people at the end of life is not surprising but still a good reminder. “I have come to realize the value and importance of each day we have,” he says.

What might surprise people, however, is his lesson that dying should be—and can be—a positive experience and the fitting ending to a life well-lived.

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When a Dying Friend Chooses to Keep Her Distance

— A death doula explains how to respect and accept different end-of-life choices

By Lee Woodruff

I was on the other side of the world when I got the text. “Did you know Karla is dying?” my friend wrote. “They called in hospice and she only has a few days to live.”

My enjoyment of a long-planned vacation with my husband suddenly came to a screeching halt in my brain. How could this be? I’d spoken to Karla * a few months ago and we’d celebrated the news that she was pronounced cancer-free. We’d gabbed away for almost an hour, catching up on kids, her future plans and the challenges with chemo, all with her signature optimism and honesty.

I was never someone Karla would have counted in her inner circle. We were in different places in life, my youngest kids still home at a time when she was enjoying dinners out and weekends away. I’d met her more than 20 years ago as part of a group of moms who sat on the sidelines at their kids’ games and drove one another’s children to playdates and sleepovers. Life had moved us to different cities, and a year or more would easily go by without seeing one another. Any time we spoke, we’d always pick right up where we’d left off. She was that kind of friend.

Listening to the relief in Karla’s voice on that last, long-ago phone call, I recalled that we’d talked about a getaway weekend with girlfriends at the beach and rebooting that group dinner we’d canceled when her doctor unexpectedly discovered a small, pesky tumor. The last of it, she’d said.

When communication stops

For the past two years, Karla had been throwing everything she had at the disease, using a combination of the finest cancer care, physicians and hospitals, with holistic medicines, organic foods and juicing. Nothing that contained any chemical or synthetics was allowed on or in her body. Karla, or so we thought, had won.

How had this rosy picture gone into a death spiral so quietly? It wasn’t so much the shock that the cancer was back. Live long enough and you understand that cancer is a sneaky thief. Anyone who has experienced a brush with cancer never fully lets their breath out. But still…. Days to live? How had someone who had brought us along so fully on the journey, who had grabbed life by the throat and been honest and transparent about her illness gone so quiet? How could we, her friends, not have known?

Next came the wash of guilt. Each person responds to illness or injury so differently. There is no one playbook or template. My style has always been to take the cues from others and to give everyone space to do what was comfortable. But now, knowing I wouldn’t make it back in time to see her, I regretted showing up at her door.

When my journalist husband was injured by a roadside bomb in Iraq 18 years ago, my instincts were to immediately pull the shades down from the outside world. The prognosis was so devastating, I wanted all my energy to tend to him and help our kids process what was happening. I drew my circle tight, initially letting in mostly family and a few trusted friends who helped with critical roles to move life forward. I understood shock and trauma, but it was hard not to personalize it, even though I knew that was ridiculous.

Loss is a part of life

At a certain stage of life, loss becomes a theme. And there is no question that when something strikes out of the blue, a sudden diagnosis, a death, accident, or a spouse who leaves, we cannot help but think of ourselves. How would we handle it? How will we handle it when it’s our time to die? I’d seen people around me die in many different ways, from flinging open the doors and having a party to closing the curtains and going quietly, as Karla had done.

My in-laws never wanted to talk about dying or even do much in the way of preparation. My mother talked about it frequently and matter-of-factly, especially toward the end. She had every detail prepared and outlined, but she lost so many opportunities to live in the moment. There is only so much we can control. What would I choose when it was my time? It was impossible to know.

End-of-life choices

Alex Rosen, 42, from Armonk, New York, is a death doula. Her job is to support, guide and provide companionship and comfort for those at the end of their life. Ideally, Rosen works with people from diagnosis through the transition to the end of their life, from their emotional state to the physical setting, whether it be in a home or hospital.

“How we choose to be and exist at the end of life is our choice and our personal journey,” she says.“When possible, it should look and feel how a person wants it to, within the confines of the medical system.”

Part of the work Rosen does as a doula is helping the person and their family accept death and make it feel as comfortable and safe as possible.

“In our society and culture, talking about death is so taboo. So many things are said privately and behind closed doors,” she says. “Part of being alive is understanding that all of us are going to die. The more we can talk about it, the more we can begin to accept it.”

One of the insights I gleaned from talking with Rosen was the potentially harmful language we use around “battling” disease as a society. While comments about “waging war” against cancer can rally a patient to summon energy and desire to combat a disease, if the disease “wins,” there can be a sense of letdown.

“There’s a societal mentality around losing,” Rosen says. “And people who thought they’d ‘beaten’ the cancer or had the potential to, can experience a feeling that they didn’t fight hard enough, weren’t strong enough, that their body failed them. That mentality can bring a feeling of shame and failure rather than a sense of calm and peace at the end of a physical life.”

Karla was a competitor; I could imagine her devastation as she received the grim news from her doctor after a scan that revealed the cancer was back. The story didn’t sound right. From completely cancer-free to riddled throughout her body? But then again, this wasn’t information I had any right to know. This was Karla’s story to tell and to handle any way she chose. She had already been through so much.

The aftermath

I’m still processing Karla’s loss and the way in which we all learned about her dying. I’m still shocked on some level. The news feels like a rug that got pulled out from under me and others who knew her. And of course, there is still so much guilt and remorse over what I would have done differently, had I known. But guilt is a useless emotion, especially when it comes to death.

Karla wouldn’t have liked all this hand-wringing from her friends, and that thought comforts me. I am also consoled by the knowledge that she chose this. I know that this was the way she wanted it to go down because there were many opportunities to do it differently.

You take the good with the bad, I can imagine Karla saying. And I’ve had a pretty wonderful life.

My hope for Karla is that she got to experience death on her terms. By all accounts, she did.

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End of life care: medical, emotional and spiritual support

— End of life care can be varied, holistic, and filled with love. We look at two end of life services – hospices and end of life doulas – that show how medical, emotional, and spiritual needs can be looked after in different settings.

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What is end of life care and what is palliative care?

There’s a lot of confusion around palliative and end of life care. For starters, although related these two terms do not describe the same thing – they are distinct.

Receiving palliative care doesn’t neccesarily mean you’re dying – rather that this kind of care is for people with incurable diseases, many of whom could or will live for many more years or decades. It’s about making life as manageable and as good as it can be.

End of life care is a form of palliative care you are given when you’re approaching end of life – it offers support and is wide-ranging and holistic.

When does end of life care start?

From a healthcare perspective, end of life care may be recommended if you are likely to die within the next 12 months, although this can sometimes be hard for doctors to accurately predict. End of life care may last a few hours, days, weeks, months, or sometimes more than a year – the only rule is that it begins when you need it.

Who provides end of life care?

End of life care doesn’t just take place in a hospital or hospice with doctors and nurses. Depending on your needs and care plan, you could receive various forms of this care at home, over the phone, or at specialist day centres. A whole host of specialists and non-specialists can deliver end of life care.

Specialists include palliative care physicians and nurses – such as Marie Curie and Macmillan nurses – but also counsellors, social workers, bereavement therapists, speech therapists, religious or spiritual carers, and many others.

Non-specialists are made up of people in your community who have different roles to play in your care. These include district and practice nurses, GPs, and pharmacists.

This should give an idea of how varied and personalised end of life care services can be.

What services are available for end of life care?

Here we take a look at two important forms of care that showcase the range of services available.

  • Hospices – hospices are specialised healthcare spaces for palliative and end of life support. Yet, hospice care extends beyond hospice beds and medical treatment.
  • End of life doulas – outside of your medical needs, doulas offer emotional and spiritual care, and they can do this inside or outside of the hospice setting.

Spotlight on: hospice care

In hospices, specialist palliative and end of life care is delivered by a multi-disciplinary team, made up of people who have different roles in a person’s care. This includes doctors, nurses, physiotherapists, occupational therapists, complementary therapists, counsellors and chaplains.

Jodie Morris is deputy director of nursing and care at Myton Hospice. She explains how hospices offer so much more than medical treatment:

“Hospices are happy places full of love and laughter where families can create special memories and spend quality time with their loved ones. This isn’t just about medicine – it’s about whatever is important to the patient and their family and friends. We take a holistic approach and see the person – not their illness.

“At Myton, we provide support right from the moment a person is told that their illness cannot be cured until the very end of life. We provide this free service in our three hospices, in the community via our Myton at home service, and as an outpatient service:

  • Our outpatient services – help people to live well for longer with their terminal illness. This may include advance care planning, counselling, lymphoedema therapy, complementary therapy such as massage for relaxation, physiotherapy, and occupational therapy.
  • Our hospice inpatient services – provide symptom control and end of life care.
  • Our hospice at home services – provide care and support for people in their own homes in the last weeks and days of life.
  • Our bereavement support – looks after the wellbeing of family and friends after their loved one has passed.

Going the extra mile

Jodie goes on to describe how the staff and volunteers at Myton go the extra mile to look after the wellbeing of their patients, welcoming beloved pets and arranging birthday celebrations, weddings and christenings at their hospices, often at very short notice.

Kerry and David’s Myton Wedding

David Black was admitted to Coventry Myton Hospice on Friday 13th May 2022 and less than 24 hours later he and his wife Kerry had their wedding at the hospice. On hearing the couple’s plans to marry, Myton staff and volunteers pulled out all the stops to arrange decorations, food, and refreshments to ensure they had the best possible day making precious memories. They were surrounded by close family members and their two sons, Fergus now aged 10 and Alfie, 7. David sadly died aged just 41, one week after being admitted to Myton.

Kerry said: “Alfie and Fergus were so excited to see us get married and I’m so pleased that they have such happy memories of the hospice. Their faces say it all and for that I will be forever thankful to Myton.”

Kerry and David's wedding
Kerry and David’s wedding

Spotlight on: an end of life doula

An end of life doula, sometimes called a death doula or death midwife, is a non-medical specialist trained to provide emotional and spiritual support to terminally ill people. According to the International End of Life Doula Association, a doula “holds the space for the kind of dying experience that honours who the person is and has been in their life.”1

Alessandra Olanow is a trained end of life doula and author of Hello Grief: I’ll be Right with You. She explains how a doula can be a comforting and positive presence:

“Doulas are there to allow the dying person to be who they are, and to allow them to be more than old or sick. A doula listens deeply to the concerns, fears, hopes, and life stories of the dying person and their loved ones to bring them peace at the end of life.”

There are many things a doula can do, including:

  • Being a companion and source of comfort.
  • Offering emotional support to the care recipient and their loved ones.
  • Have conversations that help death seem less scary and lonely.
  • Providing practical support – for example, walking the dog, providing care, preparing meals, and running errands.
  • Being a point of contact for the other care teams.
  • Enabling family carers to take a break.
  • Advocating for the care recipient’s wishes – for example, making sure the desired religious or cultural rituals are followed during end of life or after death.

Doulas can visit people at home, or in a facility such as a hospice or nursing home. Alessandra volunteers on the palliative care floor of a New York hospital. She adds that training as an end of life doula has helped her appreciate living: “I used to avoid thinking about death and dying; it was just this fearful thing. Now, I choose to live my life with an understanding that every single day is a gift.”

Alessandra’s advice for coping with loss

If your loved one is approaching death, an end of life doula needn’t disappear the moment they have passed on. They can also support you through your grief, offering guidance and comfort.

Alessandra shares this advice from her experience helping with grief: “Allow yourself the time and space you need without expectation. There is a misconception that grief has a timeline and that there is a certain way to grieve. But there isn’t. Everyone grieves at their own pace and that is ok.

“It can be helpful to have a creative outlet to express overwhelming feelings of loss. When I first lost my mother, I began to draw my feelings – these drawings became my book, Hello Grief. I hope it helps others to process their own grief.”

Further reading

  1. International End of Life Doula Association: What is an end of life doula?

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