Death, a topic avoided by most Americans, became a glaring threat during the Covid-19 pandemic. Many Americans turned to the support and guidance of end-of-life doulas, causing their numbers to rise quickly. With the baby boomer generation aging, this trend continues, making many wonder what an end-of-life doula is and what they do.
In 2020 when the outbreak hit, death confronted the young and old alike, something not universally faced since wartime. Many felt unprepared and scared. End-of-life doula numbers swelled. The National End-of-Life Alliance (NEDA), an organization supporting death doulas, reported a 650% rise in its doula membership since 2019, increasing from 200 to 1300 members.
The population of people 80 years old and over is expected to triple worldwide by 2050. The demand for death doulas is certain to continue growing.
What is an end-of-life doula?
Deriving from a Greek word for “female servant,” the word doula today refers to a practitioner who supports and helps someone through a difficult event like pregnancy and birth.
Different from hospice caregivers, end-of-life doulas are non-medical, independent caregivers who walk people through their death journey, helping them find meaning and order.
Sometimes called death doulas, death midwives, and end-of-life planners, this role is as old as humankind. But the practice is rare these days. Most people born in the West avoid death until they’re forced to face it, which increases stress and chaos at the end of their life.
End-of-life doulas view death as a life event common to all humans, like birth and marriage. They treat it with sacred value and encourage people to prepare for it.
“Death is a part of life. It's not the opposite of life,” says death doula Delta Waters of Delta Waters LifeCare. Having served approximately 1000 dying patients during her 20 years as a registered nurse, she calls her end-of-life patients “death journeyers.”
Like Waters, many former nurses and caregivers are becoming death doulas because they believe the healthcare industry delays and even avoids end-of-life discussions with dying patients.
“Death doulas are here to normalize and make death sacred as a part of life, striving to bring the dominant culture from avoidance to awareness,” she explains.
What does an end-of-life doula do?
Death doulas mentor the dying and their families through the emotional, practical, legal, and spiritual issues of dying.
They also serve anyone over 18 years old to prepare for death, even if it’s years away. A 2021 survey by Caring.com found 18-34 year-olds are now more likely to create a will than 35-54 year-olds.
State or federal rules do not regulate death doulas. This freedom allows them to meet the unique requests of the dying and their loved ones, often offering more time and creativity than medical professionals who are restricted by regulations.
“I give the gift of time,” says Waters, who is familiar with constraints nurses face.
End-of-life doulas offer a range of support and may focus on different aspects of the death journey.
Here are some examples of the work they do:
- Bedside care during a patient’s last days
- Support for practical needs like physical comfort, light housekeeping, and meal preparation
- Care coordination with other healthcare providers
- Planning for memorial and burial services
- Grief counseling and spiritual guidance
- Legacy project planning to create something that will exist beyond the client’s death
- Advanced directives and living wills
- Health proxy selection
How do you find an end-of-life doula?
To find an end-of-life doula, Waters recommends using the online directory created by the National End-of-Life Doula Alliance (NEDA), founded in 2017 to support death doulas and the families they serve. Setting national standards and guidance for death doulas to follow, NEDA also offers tips for choosing a doula.
Not all death doulas are listed in the directory, however. A simple online search or a phone call to a nearby hospice may also locate a trustworthy doula.
How do you pay for an end-of-life doula?
Most death doulas charge their clients directly because insurance does not cover their services. As a result, some doulas use a sliding scale based on their client’s ability to pay. Others do not charge for their services but care for clients as volunteers.
Does hospice provide end-of-life doulas?
Because hospice and palliative care is highly regulated, few offer death doulas as part of their end-of-life services. Instead, doulas are private practitioners who widen the types of service patients and families receive by collaborating with hospice care.
As experts in hospice care, doulas help relieve loved ones from the daunting task of understanding the process and resources involved. They know when to call hospice personnel, like nurses, for improved pain control or other medical comfort measures.
Waters explains, “I might get called at 2 a.m., and just like the hospice nurse, I visit the patient. The nurse fixes the medical problem and returns home. I can stay there at the bedside and provide non-medical comfort, so why not have both?”
When should you hire an end-of-life doula?
Death doulas help people at every stage of the end-of-life process.
Waters encourages anyone older than 18 to contact an end-of-life planner. People of all ages can create advanced directives and organize their physical and online assets, easing the task for loved ones later. They can also choose a health proxy, the individual who will make medical decisions when the injured or sick lose their decision-making ability. This is especially important for those isolated from family.
For those diagnosed with a terminal illness, an end-of-life doula can help transform a traumatic situation into a meaningful one for everyone involved. Doulas walk with the dying and their loved ones through their journey for as long as they need.
Due to the Covid-19 pandemic and the aging baby boomer generation, end-of-life doulas are on the rise.
Different from hospice workers, death doulas are non-medical, independent caregivers who help people with the dying process to find meaning and peace.
Whatever the task, death doulas lead people to discover deeper meaning by pondering their life and preparing for their death, no matter how difficult and uncomfortable.
They also help adults over age 18 to prepare for a possible unexpected death, making the situation easier for loved ones.
Death doulas offer a wide variety of end-of-life services to meet individual and family needs while working within different cultures and religions.
End Well. Why I Became A Death Doula, Alua Arthur