BY SUSAN M. MATHEWS, PhD, RN, MSBE
Baby boomers want to change the death experience.
An overwhelming 80% of Americans want to die at home but the reality is that 60% die in the hospital and another 20% die in a nursing home. Many times, this shift to institutional care happens because at the end of life the person or family panics and the goal of dying at home is lost. As a result, only 20% accomplish the goal of dying at home, comforted by friends, family, pets, and furnishings.
Such imbalance has prompted a re-thinking of the dying process and the creation of a non-medical personal service from a trained individual, typically a non-family member, who provides physical, emotional and spiritual support during the transition between life and death. Could the paradigm be shifted back to dying well in one’s home if there was someone who was trained to compassionately support that transition during those final days?
Enter the death doula. “Doula,” is derived from the Greek word for a female servant, a woman helping another woman, however, all genders have come to support the dying.
To put it simply, death doulas or end of life doulas or death midwives “figure out with the family where they are at, what do they need, what’s causing them to become overwhelmed, what kind of services are they looking for” according to Merilynne Rush, co-owner of the Lifespan Doula Association.
In the broadest sense, an end of life doula is present for the dying person. “We’re there to hold their hand and companion them as they make empowered decisions to walk their best path and have their dying experience unfold as it’s meant to,” said Francesca Arnoldy, the Program Director for University of Vermont’s End of Life Doula program.
Death doulas do not replace hospice or palliative care professionals. In fact, The National Hospice and Palliative Care Organization has created an end of life doula council, signifying its recognition and support for death doulas.
“Doula,” is derived from the Greek word for a female servant, a woman helping another woman, however, all genders have come to support the dying.
Death doulas are non-medical, are not licensed nor are they regulated by any government agency. However, there are myriad programs for death doula training and certification throughout the country, with high demand to access such training by healthcare professionals who want to increase their skills around the dying, community volunteers with hospice programs, members of the clergy, social workers, the general public, and more. Once trained, these individuals complement the medical professionals and institutions that are working with the dying and surviving family.
The home setting is not the only setting where death doulas can be found. They are present in hospitals, senior care facilities and hospices. Demands on staffing in any of these locations do not allow for hours upon hours of one-on-one presence. Doulas do not have those constraints.
They listen, provide companionship and a much-needed voice for the dying during their end of life. Not only do doulas encourage normalizing the conversation around death but they can also assist in creating a legacy project that leaves behind a story of one’s life. A doula has the opportunity to get to know the patient and family at an intimate level. The simple act of holding one’s hand or reading a poem or book aloud or watching television can relieve the feelings of aloneness so pervasive in the dying.
Not only does the doula offer the gift of presence to the dying but also provides the same emotional support to the family. The details that many families encounter cannot be fully grasped until they are faced with a dying loved one. Doulas most importantly can open communication about the end of life wishes of the dying. They can assist with funeral planning; to include drafting the obituary and eulogy; can provide respite for caregivers; address the myriad and detailed paperwork around insurance and post mortem notification to various government and financial institutions; arrange travel for out of town friends and relatives and more. As noted, doulas are non-medical support so services can be as narrow or as broad as an individual or family wants.
What about cost? Most trained doulas volunteer but, just as birth doula’s are paid for their time and expertise, the same opportunity is emerging for trained death doulas. Doula services, writ large, are not covered by insurance, making all costs out of pocket.
For those that are compensated versus volunteering, doulas set their own fees and charge by the hour, by the day, or quote a flat fee. Families arrange services after interviewing doulas and then collaborate on a written contract that clearly itemizes what is expected by all parties. Such contracts are crucial to maintaining a fluid and respectful relationship during a stressful time.
How does one locate a death doula? Currently, the best approach is to contact various associations, alliances, or training programs found through a Google search. These resources can assist in connecting the dots to identify trained doulas in locales throughout the country.
We are all going to die. Even those who opt for physician assisted suicide, now legal in eight states, may want a death doula to ease the anxieties around that final step.
Hospice and palliative care teams have been working diligently to de-medicalize death. Nevertheless, death is a big tent and there is room for a new team member to not only complement what they do but supplement their efforts.
“People always ask how we can do this work. They think it’s depressing,” said Janie Rakow, president of a nonprofit called the International End of Life Doula Association. “But when you do this work it is the opposite of depressing. It’s profound work.”
Death doulas offer continuity of care in a world where family members are spread far and wide. As natural as death is, dying well should be the goal…and to do so with someone holding a hand can make all the difference in leaving this world.
You can learn more about Susan Mathews here