In ancient Greece a “doula” was a female servant who supported women through childbirth. In the U.S., the modern birth doula movement took hold in the 1970’s to de-medicalize labor and delivery and support the option of a natural birth back in the home. Phyllis Farley, a supporter of birth doulas, attended an end-of-life conference and began to conceptualize the role of a doula to focus on the other end of the life cycle. She established the Doula Program to Accompany and Comfort in 2001 in conjunction with the New York University Medical Center. It trained volunteers to support seriously ill patients who were dying, and continues to this day. Farley’s idea contributed to the formation of the end-of-life (EOL) doula movement.

Simultaneously, there was an increasing awareness of the overall need to improve the care of dying patients and this contributed to the evolution of the specialty of palliative care. A slow cultural shift was beginning to grow around death and dying. Death Cafes to encourage conversation, The National Home Funeral Alliance, The Green Burial Council, and the legalization of Medical Aid in Dying are just some examples of this changing landscape. Over the past 20 years or so, the doula movement has expanded. There are national and international organizations for End of Life (EOL) doulas that have formed along with several certification programs.

The Role of Companioning

Although the terminology may vary (death doula, death coach, death midwife or care doula), in general, the role of a doula is to provide a layer of non-medical or nonclinical support to the dying and their circle of caregivers. This emerging role can offer social, emotional and spiritual support, practical advice, and assistance in finding resources. In our complex and sometimes fragmented healthcare system, this can help to fill gaps in care.

Information and guidance around advance care planning might be an important benefit for some. Projects to support a life review and to leave a legacy of one’s life or lessons learned can help to infuse meaning and purpose into final days. Discussing funeral and burial preferences are additional ways that a doula could help a person plan and prepare. A Kaiser Family Foundation survey found that most Americans (71%) state that their preference is to die in their home and having a doula’s services could contribute to that effort.
If hospice is involved, the doula can work alongside and collaborate with the team. Education about what to expect, comforting rituals, and music may help create a sacred space when death is near. Keeping vigil at the bedside along with loved ones could be comforting and offer them time to rest if needed. Following a death, some doulas assist family caregivers to process their loss and grief.

Thinking ahead about preferences for care can begin at any time; waiting until the health crisis to learn about health care proxies, living wills, doulas, palliative care or hospice can be almost too much to ask. Having conversations early and often about one’s thoughts and wishes regarding future end-of-life care is not always easy and could be facilitated by an EOL doula as well.

The Doula Model

Currently, there is no state licensing required or certification mandated, and doula training programs vary. This role is still relatively new and continues to be further refined. When choosing an EOL doula, it would be important to do a bit of homework to make sure that their skills match your specific needs.

A doula is not trained to provide nursing or medical tasks, such as personal care or medication administration. Each doula has their unique experience and training to provide care that is directed by the needs of the seriously ill person and/or their family. There are different practice models and some doulas volunteer, some have paid positions, and others may start their own business. Services could include a one-time consultation, intermittent visits and phone calls, or an ongoing relationship.

The impact of having a companion along the journey to educate, comfort and support cannot be overstated. A study done that surveyed death doulas on their role, concluded that “death doulas have emerged not only as a response to the overwhelming demands on families and carers, but also the demands placed on health care professionals (including palliative care) at the end of life.” [Health Soc Care Community 28:(1)]. This phase of life meeting death is new territory for many, and it can “take a village” to do it well.

Dan’s Story

After hearing the news that his cancer treatment was no longer effective, Dan was overwhelmed about the next steps. His wish was to be able to die in his home, but he worried about the potential burden this could place on his wife.

Following the recommendation of a friend, he reached out to a local doula to help him and his family. They discussed what hospice was and what it could provide along with the additional resources they would need for a safe and successful plan. They had no family close by and his wife needed some help in the home, especially at night. Dan’s advance care documents were all updated, but his wife was not comfortable talking about funeral arrangements. With the doula’s support, they documented his wishes and reached out to a funeral home to finalize plans.

After addressing much of his end-of-life planning, Dan indicated that he would also like to leave some type of legacy for his 3 grandchildren. The doula offered ideas, and he decided to write a letter to each child and include a personal memento. The doula met with Dan and his wife throughout his last few months on hospice and visited his wife following his death.

The series Let’s Talk About: Aging and Caregiving Matters has a presentation on Nov. 19 at 3 p.m. at Rogers Free Library, “Our own death cafe.” For more information, go to: rogersfreelibrary.org/featured-programs.

Bonnie Evans, RN, MS, GNP-BC, lives in Bristol and is a geriatric nurse practitioner and End of Life Doula. She can be reached at bonnie@bonnieevansdoula.com.