Working with a death doula can help provide the emotional, physical, and spiritual support you and your loved ones need.
U.S. society is a death-denying culture, notes Pulitzer Prize-winning author Ernest Becker. Less than 25 percent of Americans have written down their end-of-life wishes, according to a 2023 report from NORC at the University of Chicago.
As Dr. Sok K. Lee put it in The Permanente Journal: “Modern Americans die hard. We live longer thanks to new advances in modern medicine, but we die with less equanimity than our grandparents did. We meet our own death with fear and despair.”
Until we, as a culture, learn to become more comfortable with death throughout our lives, many of us will only contemplate it when we or our loved ones are reckoning with a terminal illness. But planning for death is not something to go at alone.
That’s why a small but growing number of families are turning to death doulas (also referred to as end-of-life doulas) to help support them and their loved ones through the dying process. According to the International End-of-Life Doula Association (INELDA), which provides training and education for end-of-life doulas, the nonprofit organization has trained more than 5,600 death doulas globally since its founding in 2015.
We spoke with two death doulas about how they provide support for families through the dying and grieving process, and how to find one if you are in need.
What Is a Death Doula?
Death is largely unpredictable. Most people don’t know when or how they’re going to die. But if special circumstances allow you to plan your death — for example, you are facing a terminal illness or have decided to go into hospice care — working with a death doula can help provide the emotional, physical, and spiritual support you and your loved ones need.
A death doula is a “a companion or guide who helps the person [with a terminal diagnosis] and their loved ones navigate their journey through this difficult time,” says Janie Rakow, end-of-life educator and co-founder of FareWell Doula.
Although death doulas aren’t healthcare providers, they have specialized training in managing grief, reprocessing the dying journey, and recognizing the signs and symptoms of dying. Death doulas also work closely with palliative care nurses and doctors to ensure that their client’s needs and wishes are being met, even if they don’t have a will.
End-of-life doulas can be assets in helping patients and their loved ones make the most informed decisions by providing them with all of the available information.
“A lot of doctors are uneasy suggesting palliative care or hospice,” says Holly Strelzik, founder of Healing Heart to Heart, a private death doula and grief specialist practice. “We can ask questions to further understand realistic options from doctors. Again, no one knows when a person will die, but according to what the individual needs and wants, we can help ensure that they are getting as much information to make wise decisions.”
A large part of a death doula’s job is to also provide both the patient and their loved ones with information that helps them better understand the nature of the dying process. For example, the dying process can look very different for different people, and can last minutes for one person and several weeks for another.
“There is so much that we don’t address when it comes to death and dying,” Strelzik says. “The body and soul knows how to die. It’s uncomfortable most of the time, just as with birth.”
Interested in learning more? Check out Changing Perspective on Death.
Why You Should Consider Working With a Death Doula
Research shows that there is a big gap in end-of-life care for those with serious illnesses.
One 2020 review in the Journal of Aging Research found that the hospices and other end-of-life systems in North America do not adequately address the needs of those with chronic illnesses, and are instead focused on acute care. This can mean a lack of mental and emotional health support and bereavement services for patients and their caregivers.
Strelzik explains that in the U.S., what’s happened is “we have all of this great technology and these great doctors, and there are all these ways of saving lives,” and therefore “even the doctors are very uncomfortable talking about palliative care and hospice.”
She adds that the social workers are usually working with heavy caseloads and are stretched thin, so they don’t have the bandwidth to cater to every patient as they would like to. Oftentimes no one is really available to have those ongoing conversations around the needs and wishes of the dying person — unless there’s a death doula around.
Here are other ways that working with a death doula can help you get the care you need.
1. They Help You Create a Comfort Care Plan
Strelzik likes to develop what she calls a “comfort care plan” for the dying person, which could look like: “I want soft music and I want to be bathed every day, but don’t put on the TV and NO Uncle Joey.” Strelzik and Rakow work with people to put together what they want their end to look like logistically, while educating about the dying process, which can alleviate fear for everybody.
The National Institutes of Health noted that two studies in 2016 found that patients who had palliative care after two weeks in the hospital reported fewer symptoms, a smaller drop in quality of life, and less depression and anxiety than those who had standard care. Patients who received palliative care also reported a higher quality of life after three months.
“Most importantly, we are an advocate for the patient,” says Rakow, “making sure their wishes are both voiced and implemented.”
Doulas can work with a patient from diagnosis until death — and even beyond, to help the loved ones with the grieving process.
Then it’s time to focus on the family, explains Strelzik, and whoever is around. “Is it the husband, children, a distant lover no one knew about?” She works with the group to make sure everyone is heard and taken into account.
“Some doulas make sure your financial affairs are in order: You have a will, a durable power of attorney, and funeral arrangements. We coordinate with their care team, whether it is hospice or palliative care,” Strelzik says.
“We have all of this great technology and these great doctors, and there are all these ways of saving lives, so even the doctors are very uncomfortable talking about palliative care and hospice.”
2. They Can Help You Make Informed Decisions About Your Medical Care
A death doula is an advocate who stays in line with the client’s wishes. “We report back to the family and generally know how to probe for further clarification from medical staff,” explains Strelzik.
She adds, “We hear [patients], validate them, and let them speak. We are the grounded, objective voice that can sit and hold space, and call in someone if a professional is needed, like a psychologist, clergy, or elder lawyer.” Sometimes, it’s as simple as the patient saying, “Don’t put those stupid purple socks on my feet!” and the death doula makes sure they’re heard.
While death doulas work in many unique ways, Strelzik offers mixed modalities of healing to patients, including jin shin, reiki, and reflexology, which she says lessens pain and helps the body to relax. Rakow has made medical aid in dying (MAID) a part of her practice, while Strelzik has not. MAID is a protocol to provide terminally ill patients with medications they might use to end their lives at the time of their choosing.
3. They Provide Mental Health and Spiritual Support Throughout the Dying Process
Death doulas are there to hold space, observe, and listen to the dying person and their loved ones. They also support the spiritual practices of everyone involved. For example, INELDA offers workshops for doulas on personal rituals and how to create rituals for self-care, as well as those that celebrate and honor a dying person’s life. These rituals not only help patients peacefully transition, but provide comfort for their loved ones, too.
A testimonial from the INELDA website highlights one person’s experience with having a death doula by their side: “During the vigil, the doulas stayed with us continuously, and used my mom’s guided visualization and music to help her stay calm and let go more easily. They supported me emotionally, eased my anxiety, and guided me through the entire process. When I look back now, I think of the doulas as angels who transformed my mom’s dying into an experience of deep meaning that I will carry through my grief and for the rest of my life.”
4. They Help Your Family Prepare for “After-Death”
After a person dies, their family is typically devastated (Strelzik calls it “grief brain”), so the doula is there to take care of things for the family as well. This can look like cooking dinner, grocery shopping, helping arrange funeral details, or returning medical devices.
Death also stirs up a whole host of unresolved issues for the surviving family members, such as job loss, body image issues, and moving loss, Strelizik says. Death doulas are there to be a mediator and advocate in those situations.
How to Find a Death Doula and What Questions to Ask When Interviewing One
It’s pretty brave and empowering to think about and discuss what a “good death” might look like for you and your loved ones. You can always have a conversion with your best friend, sibling, partner, or adult child and say, “Hey, I was thinking about what might happen if I get ill. Personally, I think I’d like x and y to happen.”
According to Strelzik, most of the initial calls and requests she receives sound like, “Oh my God, I don’t know what to do. I’m overwhelmed. I need help. There’s a storm.” But you can reach out to a death doula proactively and have a conversation with them before you and your family are in crisis mode.
You can search for a death doula near you by looking at directories listed by state, such as INELDA.org and the National End-of-Life Doula Alliance.
In terms of questions, Rakow says she would ask the following:
- Have you had formal training with a doula organization?
- How long have you been doing this work?
- Do you have a list of references?
- How do you charge?
- Are you insured?
- Do you offer insurance coverage?
Ultimately, you want to find a doula with whom you and your family are most comfortable and can help fulfill your needs, so make sure to tailor your questions. If you’re particularly anxious about creating a will, for instance, finding a doula who is well-versed in this process can be beneficial for you. Or if religious rituals are especially important to you, you can find a doula who is familiar with different cultural traditions and customs you’d like to incorporate.
Paying for a Death Doula
Costs for working with an end-of-life doula vary, but Rakow explains that many professionals in the field will adjust their fees on a sliding scale so their services are affordable to everyone. “Cost should not prohibit someone from working with a doula. In my practice, I will also work with someone at no cost if needed,” she says.
Strelzik echoed Rakow in the sentiment that everyone deserves compassion and care. If you’re in a tough spot financially, she suggests reaching out to the doulas in your community and asking for support — but make sure you’re working with someone who is professional and who has insurance.
“A doula has to be very grounded. You are emotionally attached to the family, but keeping that objective voice and not bringing your own grief into this is key,” Strelzik explains.
Rakow and Strelzik believe that every stage of life needs to be celebrated, and death is one of them. The more our culture aligns ourselves with that mentality, and stops ignoring death and making it taboo, the less we will suffer as individuals and as a society.
