Doulas are helpers. The word “doula” comes from the Greek, where it means, roughly, “female helper” or “woman who serves.” In 1973, the word was first used to refer to someone who helps and supports women through and after childbirth. But now the concept of the doula has been expanded. Instead of having doulas only to help with the beginning of life, we have doulas to assist at the end, too. End-of-life doulas, sometimes called doulas for the dying or death midwives, help dying people and their families transition from life into death. Their goal is a “good death” for their patients.
Many end-of-life doulas are trained professionals, although some are volunteers who work with hospice organizations. End-of-life doula organizations, such as the International End of Life Doula Association (INELDA) and Lifespan Doula Organization (LDA) administer training and certifications for end-of-life doulas. The University of Vermont issues an online End-of-Life Doula Professional Certificate, and students put in 80 to 100 hours of work to certify. Baylor University Medical Center includes a volunteer doula program as a part of their Supportive and Palliative Care Service.
End-of-life doulas are not medical professionals; they don’t replace medical care. But they do work alongside hospice, palliative care doctors and nurses, and other medical professionals to make death a smoother transition. As death doula Alua Arthur noted, even hospice doesn’t provide all of the emotional support dying patients and their families need. She wrote for AARP, “There’s a lot of medical support in dying, and there’s some emotional support as well, but I find that death doulas do a great job of tying it all together.”
Help with End-of-Life Planning
An end-of-life doula’s duties can start with helping the dying person plan their final days. Henry Fersko-Weiss, founder of the Lifespan Doula Organization and author of Caring for the Dying: The Doula Approach to a Meaningful Death describes the first stage as encouraging the dying person, as they start “reflecting on their life and planning for how they envision the last days of life to unfold.”
Be an Advocate for the Dying
End-of-life doulas stress that the dying person must have a voice in their final days and in their death. Some patients record important memories for their families. Others plan their own funerals. End-of-life doulas also have more professional experience with death, so they can answer questions patients and families have that doctors may not have time to answer. In addition, dying patients too often become “invisible” to doctors, family, and friends, according to Kelly Sanders, R.N., an end-of-life doula from Michigan. End-of-life doulas are able to empower the dying person, and give the patient a voice, even as their life ends.
Provide Comfort, Before and After Death
Doulas help families of the dying, too. They work with families to determine what kind of help they can provide. They can give the family time to sleep or do daily activities, while the family spends time with the dying person. Deanna Cochran, end-of-life doula and RN, said she will even cook or run errands for the family so they can spend time with their dying family member. She noted that it’s easier for her to provide these services as a doula, because “the boundaries are different” than they would be for a hospice nurse or other medical professional. End-of-life doulas know the importance of being present, staying there at the bedside with the dying person. End-of-life doulas help people die at home, instead of in a medical facility.
Once the patient has died, doulas provide comfort and reassurance for the grieving family, too, as they help the family through the first stages of grief. Even though it’s a natural, inevitable part of life, many of us are shielded from death and can have difficulty processing it. But end-of-life doulas are expert, willing guides to help us through the transition.