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

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.