The term doula comes from the ancient Greek for “slave,” or in some translations, “woman who serves.” In the 1970s, the term was appropriated for use to refer to women who specialized in supporting laboring mothers, because once women started delivering their babies in hospitals — instead of at home surrounded by female family members and midwives — doulas became necessary to fill the gap left by modern medicine. Doulas support the mother in all of the in-between times, when nurses and doctors aren’t in the room. They provide guidance and support in whatever ways a mother might need them.
A similar progression can be seen at the other end of life’s spectrum. Today, instead of dying at home surrounded by loved ones, it is far more common to experience one’s last moments in a hospital room. Much can be said about modern medicine, but we can all agree that there are significant deficiencies when it comes to the emotional and spiritual support of a patient and their family. As a response to this need, death doulas have risen to fill those gaps much as birth doulas began doing in the ’70s.
The Role of a Death Doula
Receiving a terminal diagnosis can be difficult to process. In addition to navigating your emotions surrounding the news, you realize that there will probably be logistical matters to deal with as well. This can feel overwhelming for anybody. The role of a death doula is to hold your hand through all of these hurdles and to provide guidance and support.
Death doulas are typically hired by patients or family members when a terminal diagnosis is given, and stay with that person — and their family, if desired — through their death and beyond. They can offer emotional and physical support, education about the dying process, preparation for what’s to come, and guidance while you’re grieving. This can mean logistical planning for the time before, during, and after death; conducting rituals or comforting practices; helping the dying person reflect on their life and values (Dignity Therapy); and explaining the bodily functions of dying to caregivers.
What to Look for in a Doula
There is no federally mandated certification to become an end-of-life doula, but many private organizations offer education or certification programs. In terms of qualifications, at minimum look for someone who has taken end-of-life training classes and has volunteer experience in a hospice environment. You can also look for certification from organizations called NEDA, or the National End of Life Alliance, or INELDA (International End-Of-Life Doula Association), which offer training and exams that cover communications and interpersonal skills, professionalism, technical knowledge, and values and ethics. Before hiring a death doula, interview every candidate at length. Just like finding a good therapist, it is important that you are able to establish good rapport and can trust in whomever you hire.
Why Should I Use A Death Doula?
Hiring a death doula is entirely optional, but if you are approaching the end of someone’s life with trepidation or fear, a death doula can be invaluable. Although hospice care has come a long way since its inception, there are still many ways in which their interventions are limited.
For example, hospice care is regulated by Medicare rules, which limits the time staff is allowed to spend with patients and families. They also limit the degree to which medical providers can offer advice. A death doula can not only provide 24/7 care working in conjunction with hospice workers, but they can also offer education and guidance related to things like do-not-resuscitate orders and healthcare power of attorneys without conflict of interest.
There is also great value in having an interdisciplinary team to care for a dying person. While hospice can provide medical and palliative assistance, a doula would bring different types of expertise to the table.
Where to Start
If you think a death doula could be helpful, there are a few places you might want to inquire first. If you or your loved one are already enrolled in hospice care, that facility might have doulas as part of their team, and could give you a proper referral from experience. Alternatively, you could find a doula through NEDA here, or through the International End-Of-Life Doula Association (INELDA) here. A religious organization might be able to offer guidance as well.
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