End-of-Life Doulas’ Growing Value Proposition in Hospice

Hospices and other health care providers are increasingly recognizing the value proposition of end-of-life doulas. Organizations are taking varied routes to leverage doula’s skills to improve quality.

End-of-life doulas support patients and their families in a number of broad and diverse ways, according to Erin Collins, program director of The Peaceful Presence Project. Collins is also a certified hospice and palliative care nurse and end-of-life doula. She serves as vice-chair of the National Hospice and Palliative Care Organization’s (NHPCO) End-of-Life Doula Advisory Council.

Doulas can provide families with education about end-of-life care options and also serve as an added layer of interdisciplinary resources for hospice patients — particularly when it comes to addressing their emotional, spiritual and nonmedical needs, Collins said during NHPCO’s Virtual Interdisciplinary Conference.

“End-of-life doulas may have some tasks that they perform that really do overlap with other end-of-life service professionals, but the exception is truly that the doula never usurps or overlaps with any sort of medical care,” Collins said. “[They] can provide so much support from advance care planning to vigil assistance, and out in the community they can do early grief and bereavement support and can provide household support [and] respite caregiving.”

Interest in doula collaborations and partnerships is growing among home health and hospice providers alike, Collins indicated. Roughly 6% of hospice providers cited plans to diversify their services to include end-of-life doulas this year, according to the Hospice News 2024 Outlook Survey.

Other health care providers, upstream of hospice, are also engaging doula services as well, such as assisted living and skilled nursing facilities, she said.

A large driver of this interest is doula’s ability to help patients access and understand their health care options as their illnesses progress, Collins said.

Integrating doula sources can foster collaborative , goal-concordant care as well as improve quality, according to Jessica Curd, PhD candidate with the Indiana University’s School of Social Work and assistant professor at Ball State University. Curd is also a licensed clinical social worker, and serves as a therapist at Red Wheelbarrow Counseling LLC and BetterHelp.

Doulas often come from a variety of professional backgrounds and have diverse cultural and spiritual backgrounds, which can strengthen their ability to communicate with patients on their goals of care at the end of life, Curd said.

“The doula is a key part of that [interdisciplinary team (IDT)] and having communications with the members of the team as they’re helping a patient and family meet goals,” Curd said at the NHPCO conference. “I’ve collaborated with doulas, some of whom are nurses, physicians and social workers and some don’t have a medical background in their professional training. There’s a huge variety even within the scope of what makes a doula who they are. There might be a variety of training [and] educational backgrounds, but one of the big differences is they can work more intensively with folks they’re serving.”

Doulas can be an additional bedside presence to dig deeper into the challenges patients and caregivers are facing, Curd stated. End-of-life doulas are able to spend more hours each week than the average hospice interdisciplinary staff bound to a specified number of visits, she explained.

Curd also serves on NHPCO’s End-of-Life Doula Advisory Council, along with Qwynn Galloway-Salazar, CEO and founder of In Their Honor LLC, which provides care, education and awareness to caregivers supporting veterans through the end of life. Galloway-Salazar is also an end-of-life doula.

Doulas can play a critical role in improving end-of-life experiences among some of the most vulnerable populations such as terminally ill veterans, Galloway-Salazar said. Doulas play an “enormous role” in creating spaces for veterans to share their wishes at the end of their lives, she said.

These professionals can help hospices better understand veterans’ barriers to end-of-life care and the range of their unique and complex emotional and psychosocial needs, including a trauma-informed care approach, Galloway-Salazar stated.

“As this field of doula work continues to grow, we’re starting to realize that there are sub populations — especially of veterans, caregivers and their loved ones — and end-of-life doulas can play a crucial role in honoring and supporting veterans through the end of life,” Galloway-Salazar said. “As we’re working with our veterans, we know that trauma and post-traumatic stress play a big role in some of our veterans’ experiences. We want to ensure that as we navigate that end of life alongside our veterans, we’re also providing a level of care to acknowledge emotions and memories that may resurface or be activated.”