Some people may feel so uncomfortable when thinking or talking about death, that they may just avoid the topic altogether. There are so many unknowns when it comes to dying, there are so many ways to die, and even just imagining leaving behind people who you love and care for can be overwhelming.
However, when you've been diagnosed with a terminal illness, are reaching the end of your life due to age or illness, and are ready to move on from this world there are people who are willing and trained to help. Nurses and doctors are wonderful, but a non-medical end of life or "death doula" is a person who can assist the person dying as well as the bereaved families.
Death doulas are hired by the family of a terminally ill patient or the patient themselves to help assist with the dying process. Much like a birth doula advocates and supports a birthing mother, death doulas provide support for the patient and their family. Emotional, physical, and spiritual support is provided by the death doula, as well as assisting with practical issues and helping with legacy projects.
Death doulas converse with the patient and ask questions to find out their wishes and will follow their directions down to how the space looks, the sounds or music being played, and the readings or rituals that will take place in the patient's last days and moments.
Death doulas often work in cooperation with hospitals, hospice, palliative care, and funeral homes, to help advocate for the patient and ensure families know their rights and responsibilities when it comes to end of life decisions.
Death doulas can assist the dying person with writing wills and advanced directives. They may help the dying person write letters to family members, work on art or quilting projects, and make scrapbooks.
Death doulas assist the dying person with handling their emotions, help them explore the meaning of their lives, and help them imagine the impact they have had in other's lives. Death doulas may also provide respite care for the family.
Death doulas may also help facilitate conversations between family members and the patient. While not medical professionals, can also help the families with physical and practical aspects of end-of-life care. After the person has passed on, the death doula will provide the family with grief support and can help them navigate paperwork, internment, and funeral or memorial arrangements.
While the field is in its early stages and still unregulated, the International End of Life Doula Association (INELDA) was co-founded by Henry Fersko-Weiss in 2015. Fersko-Weiss started the first end-of-life doula program, which adapted the birth doula model, in a New York hospice in 2003.
INELDA, and other programs offer training and certifications for those wishing to become a death doula. Oftentimes death doulas come from related fields, such as social work, nursing, or other human services jobs, but people from any field can take training to become a death doula.
Although certification isn't required to become a death doula, it is recommended. Currently, there are around 30 INEDLA certified death doulas, but there are many more INELDA trained death doulas. INDELA's doula directory can help families find a certified or trained INELDA death doula.
Becoming a death doula is a calling, and the people called to do the work find a fulfilling career. Jill Schock, owner of Death Doula LA, a former chaplain, became a death doula after experiencing a panic attack in her former career. She recommends volunteer work in places like hospice, hospitals, and cancer centers for those starting out. Schock notes, "Becoming a Doula can be accomplished through some simple actions. First, be present in the community. Look at all the various aspects that surround the dying; learn, build relationships, ask how you can be helpful."
Death doulas may have private practices, work for organizations, or work in conjunction with hospice, hospitals, or in the home of the dying patient. Occasionally, birth doulas decide to add training and certifications to their repertoire to become lifespan doulas. These doulas care for birthing mothers and afterward during postpartum. They also assist terminally ill patients. Patty Brennan owner of Lifespan Doulas, an online training and certification program started her career as a midwife, doula, and educator. She also earned the NEDA Proficiency Badge from the National End-of-Life Doula Alliance.
According to Lifespan Doula, "Patty has been supporting families to become their own best advocates and successfully navigate healthcare systems since 1983. She became interested in end-of-life issues after supporting two sets of parents through their final days, witnessing the remarkable similarities between birth and death, and what it means to hold space for these major life transitions."
In any human and health services career, self-care is an integral part of the job. Death doulas deal with the biggest transition of anyone's life, major emotional reactions from patients and family members, and are level-headed when panic may set in. Just as any other profession that deals with life-changing diagnoses, illnesses, and death, learning how to cope with burnout and stress is an important part of the job.
While being a caretaker to others, making sure to care for and tend to their own needs is necessary. Carving out time to meditate, exercise, and talk with loved ones can make all the difference.
Just as hiring a birth doula may not be for everyone, hiring a death doula is an extremely personal and private decision. When thinking of your "ideal" death, you may have many strong emotions and thoughts. Accepting guidance through a major change, learning how to cope with emotions, and leaving behind a legacy for your loved ones are just a few reasons people hire death doulas.