What is a death doula is a question our arrangers are frequently asked. A death doula a.k.a. end-of-life doula is a non-medical, holistic professional who cares for people before (and sometimes after) a patient’s death, while also caring for the patient’s loved ones. The Greek word doula means a non-medical person who supports another person physically, emotionally and spiritually.
Death doulas cannot give medication and cannot give medical advice. And doulas do not provide hospice care. Instead, a doula compliments hospice and other care patients receive as they approach death. Doulas fill some of the gaps in care with one-on-one support for patients during their end-of-life journey.
“I think the priority of a doula is to honor your patient and the choices that they would like for the end of their life,” said Pamela Stohrer, an end-of-life doula in New Hampshire.
She found inspiration when she went to Maine about 12 years ago, when her father was dying in an assisted care facility.
“Hospice wasn’t what it is today,” she said. “I didn’t know anything about end-of-life care at that time. In my research, I found a program that was tuition free, funded by the Cabot Family.”
Pamela took an eight-week course with the University of Virginia.
“I [previously] trained as a therapeutic musician who played for end-of-life patients [at hospitals], and I could see pretty clearly that I had a good skill set to bring to people who were alone at such a sensitive time,” she said.
Pamela said the first meeting with a potential client involves a lot of questions and answers from everyone, including family members.
“It’s also about finding out whether you and the patient and the family are going to be a good match,” she added. “You just know it when it’s there.”
What services do death doulas provide?
Every patient’s wishes are different, but education is a top need for many as they approach their final days, Pamela said.
“Your clients are going to be looking for so many things, so you want to have information about advance directives, living wills, organ donation, legacy documents, funeral homes, cremation, green burial, home funeral – I could go on. If you don’t know off the top of your head, you need to know where to find the answers,” she said.
Pamela added that people don’t know exactly what they’re going to need until they need it. So a doula needs to be prepared for a plethora of services.
“Someone may need to sell their house and everything in it or sell their car,” she said, “People don’t know that a doula is available to assist with that.”
Or it could be helping someone document their life to share with children and grandchildren. Doulas help patients make photo collages, write letters to loved ones or chart a storyline about the history of their life.
“People don’t often think there is the opportunity for someone who does have a little bit of time to be able to create the memory books, the photo collages, the biographies, because, we’d all love to write down the highlights of our life. How many of us really do that? I didn’t do it until I took this course, and I’m only 68,” Pamela said.
Doulas also provide spiritual care and support, and help difficult conversations happen. A patient may want to forgive someone or ask for forgiveness and a doula can guide them through that.
“I did assist a woman at the end of her life who had troubled relationships with her children. In the course of talking with me, talking about the history, we wrote some incredibly emotional letters to her kids,” Pamela said.
Pamela said each situation dictates how many patients she can have at a time, and what the patient’s needs are. If someone has six months or more to live and only asks for a weekly visit, she could obviously take on multiple patients at a time, but if someone were in the last week or two of life, she wants to be available 24 hours a day for the patient or the family.
What happens when a death doula’s patient dies?
Lee Webster, the Executive Director of New Hampshire Funeral Resources, Education & Advocacy and a founding member of the National End-of-Life Doula Alliance and the National Hospice and Palliative Care Organization’s End-of-Life Doula Council, said it’s important to note that once a patient dies, a doula must change hats. While some doulas charge for their services while a patient is alive, once someone dies, doulas must become a volunteer and cannot charge for services to continue supporting the family.
“At the point where the person actually dies, the law takes over, and everything in that arena either becomes the responsibility of the next of kin, or they can defer and hire a funeral director,” Lee said.
One of Lee’s focuses is home funerals, and she said if the family approves, a doula can stay on and assist with a home funeral, again, in an unpaid role. Home funeral guides must understand the law requirements related to someone’s death, which differ by state, and know what role the family can play and what documentation is needed. Assistance from a certified funeral director may be required.
How does one become a death doula?
There are several organizations that offer death doula training programs. It’s best to do your research when determining which is right for you (see the resources below), as doula training is not regulated on a state or federal level (anyone can offer doula training). The University of Vermont’s program is popular with five sessions offered per year (with a current waiting list).
Many programs are online learning modules (which makes sense during pandemic times), though there are some interactive components with small groups of students, and there’s often homework and weekly tests.
Janice McDermott got her doula certification from the University of Vermont three years ago. (Janice just retired as Director of Hospice & Palliative Care from the Home Care, Hospice & Palliative Care Alliance of NH. See the article below.) Janice, who started one of New Hampshire’s first hospice volunteer training programs in New Hampshire, said much of the doula training was reminiscent of caregiver volunteer education. Hospice training is regulated by Medicare.
Death doulas are not regulated by the state
The lack of regulation makes legitimizing what they do a challenge. For example, don’t expect to see doulas listed on many professional caregiving websites as resources.
“We don’t want to say that we’re vetting them or affiliated with them or recommending them when we don’t know them or about their training,” Janice said. “If I were setting up a business, I would get my own criminal background check to show people… I think someone’s success is going to be based on word of mouth.”
Janice doesn’t plan to offer professional doula services now that she’s retired, but the training has personal value, she said.
“I believe that the doula training and hospice volunteer training are all valuable. I think everyone should do it because we’re all going to be faced with taking care of somebody sometime before we’re faced with our own illness,” she said. “It helps you understand or be more comfortable with death and dying. If my spouse gets sick or before I get sick, I want to tell someone what I would want. I think it’s good information we should be teaching kids in high school. Then, they would bring it up with their parents and it would become less scary. Anything people can do to get that conversation going is great.”
This post answers the following questions:
What is a death doula?
How to become a death doula?
What does a death doula do?
What is a death doula?
A death doula a.k.a. end-of-life doula is a non-medical, holistic professional who cares for people before (and sometimes after) a patient’s death, while also caring for the patient’s loved ones.
How to become a death doula?
There are several organizations that offer death doula training programs. It’s best to do your research when determining which is right for you (see the resources below), as doula training is not regulated on a state or federal level (anyone can offer doula training). The University of Vermont’s program is popular with five sessions offered per year (with a current waiting list).
Many programs are online learning modules (which makes sense during pandemic times), though there are some interactive components with small groups of students, and there’s often homework and weekly tests.
What does a death doula do?
Education is a top need. Doulas share information about have information about advance directives, living wills, organ donation, legacy documents, funeral homes, cremation, green burial, home funerals and more. Doulas provide spiritual care and support, and help difficult conversations happen. A patient may want to forgive someone or ask for forgiveness and a doula can guide them through that.
Preplanning your final arrangements ensures that your family understands your final wishes and alleviates a great deal of stress.
This is a great article that explains our role as death doulas. I am also a University of Vermont doula and long-time hospice volunteer. I currently work as a hospital chaplain and as a hospice chaplain in Exeter, NH.