End-of-life doulas can help hospices’ efforts to improve health equity in hard to reach settings while also improving quality in the last days of life.

The quantity and quality of patient visits during the last days of life is an important quality measure for hospice providers. Having doulas at the bedside during the last days of life has positively affected hospice quality outcomes, including those among underserved populations, according to Diane Sancilio, director of counseling and support at Gilchrist Cares.

The home health and hospice nonprofit provider began offering end-of-life doula services in 2010 and currently has 75 of these trained volunteers, Sancilio said. Doulas can help improve hospice’s ability to support patients and families during their most vulnerable final moments, she stated.

“We have round-the-clock doulas that can be available when our clinical staff are not,” Sancilio said. “They can come sit with a person for hours when a family member or caregiver can’t be there so their loved one does not die alone. There is absolutely an impact. We do see the impact of having end-of-life doulas and the care that families experience in those last couple of days.”

The role of doulas in hospice care

Patients and their families often need greater support in the final days of life, Sancilio said. Doulas can help hospices to reach these patients further upstream in a variety of ways, including increased touch points with families at the bedside, she added.

Hospices have various models of end-of-life doula support including volunteer-based services, contract-based services and some include these professionals as part of their interdisciplinary team.

End-of-doulas often do not face the same time constraints as hospice providers and can stay with the patient longer, according to Tracie Taylor, nurse and certified end-of-life doula partnering with Heart to Heart Hospice. During that time doulas help address their nonmedical and psychosocial needs, including anxiety, guilt and fear of death, Taylor stated. 

“End-of-life doulas can sit with patients and families for as long as needed, staying continuous hours,” Taylor said. “By educating people and helping them confront their own mortality in a healthy, safe environment we can eliminate some of that regret at death.”

Heart to Heart has been growing its base of end-of-life doula providers in recent years, including hiring more of these professionals in its Houston and Indiana service regions.

Among the factors fueling these services is their impact on quality, according to Shana Sullivan, chaplain and end-of-life doula at Heart to Heart Hospice. Doulas are trained in a variety of areas in the dying process that can help support terminally ill patients and their families during the last days of life, Sullivan said. 

In addition to assisting families in funeral and memorial service planning, vigils, legacy work and providing anticipatory grief counseling, doulas are trained in communicating on sensitive topics, she explained. They can also have skill sets in music and aromatherapies, reiki, yoga and meditation, that can aid in symptom burden among patients, Sullivan added.

“Doulas have a lot of various skill sets they can bring to the table,” Sullivan told Hospice News. “What makes doulas a needed asset to a hospice team is [that] they bring a modality of support [and] provide lots of quality time for the family member that another care team member might not be able to do. That’s invaluable to a family.”

Doulas can also help hospices improve a hospices’ ability to deliver goal concordant care among rural and culturally diverse patient populations, according to Taylor.

“Rural and diverse areas can be a challenge for other providers,” Taylor said. “Respecting our patients for their beliefs, roots in their communities and diversity of their area are all part of how Heart to Heart honors those we serve. Public outreach and community education is key in rural areas, [and] knowledge is part of life planning and dignity.”

Doulas closing disparity gaps in the last days of life

Some of the most underserved groups with health care disparities include people of color; incarcerated, seriously ill seniors; rural populations and the LBGTQ+ community, among others.

Doulas can help hospices to better understand the broad range of unmet needs and barriers to support during the final stages of life among underserved populations, according to Eric Flotow, a certified end-of-life doula. Flotow has firsthand experience of providing hospice care to incarcerated individuals.

“I’ve seen many things that occurred in the Department of Corrections that still haunt me today within the hospice setting and the way that people were treated,” Flotow told Hospice News. “That brought about this recognition of this major injustice that is just continuing to go unaddressed and challenges from a humanitarian perspective. Death doulas can help create safe spaces, provide counsel and help people heal and die well. We bridge the gap between death and hospice care at the end of their life journey.”

Misunderstandings, fear and mistrust of the health system also represent main barriers to care among underserved groups, according to Lauren Carroll, founder of The DeathWives. The Colorado-based organization provides death doula certification and training, along with doula referral assistance.

End-of-life doulas can break down common barriers among underserved populations, as they often have deep roots in various community groups and a unique understanding of different cultures, beliefs and death processes among diverse populations, Carroll said.

The end-of-life doula workforce is becoming increasingly diverse, according to Carroll. A growing mix of men, women, transgender and cisgender individuals have become interested in death doula work, along with people from diverse cultural and ethnic backgrounds, she added.

Having a doula’s insight and ability to forge community relationships is invaluable to reducing hospice disparities among underserved populations, she stated.

“A lot of underserved people don’t have representation in a funeral home or hospice setting,” Carroll said. “The greatest thing about a death doula is that we can help bridge that gap of understanding. A lot of our work is advocating rights and wishes that people have and providing education. People feel more comfortable working with people in their own community, which doulas often are. It’s easier to have a communication relationship with them during a very vulnerable time versus health workers they might not see themselves in.”