Wednesday, October 19, 2022

How Doulas Help Hospices Meet Their Mission

By Beth A. Eck, PhD

In June of 2019, I began my quest to become a hospice death doula volunteer. For those who may not be familiar, an end-of-life doula guides individuals transitioning to death and their loved ones through the dying process. After a heady turn of events, I recently completed my first year as the Director of End-of-Life Doula Services for Hospice of the Piedmont in Charlottesville, Virginia. I am a practicing doula for hospice and palliative patients, but in my unanticipated “encore career,” I also train and supervise new hospice doulas, communicate with the interdisciplinary team (IDT), and run consultation groups. My job is a full-time, salaried position; I’ll share a little about that journey below, but more importantly, offer practical steps for hospice agencies to incorporate the end-of-life doula role.

After I returned from my first end-of-life (EOL) doula training in May of 2019, I knocked on the door of my non-profit hospice where I had been volunteering for the previous six months. I asked the volunteer department for supervisory hours (required for the training organization’s certification process) and was told they would need to know more about doulas and what I was requesting. I wrote up a five-page single-spaced proposal replete with footnotes—the occupational hazard of an academic. I covered the support a doula offers; I stated why the work did not require a particular degree or professional background; I offered how doulas offer complementary supports and not duplicative ones (i.e., they did not take the place of social workers or volunteers), and I argued that exploring the proposition was mutually beneficial—I would find out if I was suited to doula work, and they could find out if it was the kind of discipline they wanted to invest in. Because the number of doula training organizations seemed to be proliferating, I knew doulas were becoming more mainstream, and I argued that our hospice could be a leader in working with doulas rather than dismissing their potential impact. I knew I would not be the last to knock on the door.

 Bureaucracy is bureaucracy and so the process was not as straightforward as I assumed, but after many internal discussions, my proposal made it up the chain of command for approval. Even so, there was an overriding concern about structure. To have a doula, even a volunteer one, seemed to require some rethinking of the organizational chart as well as a clear delineation between existing volunteers and doula volunteers.

 If doulas are volunteers, will all patients have equal access to their services? If we have many doulas, who will supervise them? What if we train them and they decide not to volunteer for us and are privately hired by families instead? What if patients don’t want ‘just’ a volunteer anymore and only want doulas? These are legitimate concerns, and the answer for your organization may be different than it was for mine. Instituting an in-house doula program, or incorporating trained doulas into your fold, is not without its hiccups, but my organization and I would argue that it is well worth the effort.

 If you are not ready to hire a Director of End-of-Life Doula Services or have an in-house training program, I want to share what I have learned about how a doula can gain legitimacy within hospice teams and bring value to the organization. Some of these suggestions assume the doulas have a flexible schedule. If they do not, it will require some creative substitutes.

1.     Embed your doulas within an interdisciplinary team. During the orientation period, they can introduce themselves and learn faces, names, and roles without a patient assignment, and can comment on cases where a doula would be helpful.

2.     Arrange for the doulas to shadow team members. This is something a typical volunteer does not do. Shadowing a social worker and chaplain is likely enough, and these disciplines are good choices because doulas will work closely with them while supporting the patient.  The “ride-along” will provide an opportunity to dispel concerns about overlapping roles and help to build bridges.

3.     Discuss and decide on patients for the doulas to serve. Generally, patients who make a good fit are those who are interested in doing life review or legacy work, practical planning, or storytelling. They are patients who wish to plan their own active dying period and/or would like more presence at their bedside. They are also patients whose families welcome this kind of support.

Another barrier hospices may face when first integrating doulas into their programs is that doulas generally work with only one to two patients at a time to ensure those patients and their loved ones have the best experience possible. Doula work is intimate; they can spend hours with patients at any given visit, prohibiting a large caseload. From an administrative viewpoint, this may not sound good. Why is it worth having doulas if they cannot see very many patients?

·       Medicare regulations can make it difficult for dedicated clinical care team members to spend the amount of time they would like with patients; doulas can fill in that space, deepening relationships.

·       Because of this relationship, doulas help hospices achieve the desired continuity of care. We are with patients through each transition in their death journey.

·       Hospices are evaluated on their ability to provide a good patient care experience. Doulas are a bridge to comprehensive team communication as they fill in gaps about patients and their families. Their ability to spend long periods of time with patients means they can provide an intensive layer of emotional support.

·       An in-house doula program need not cost much. Thus far, our program is staffed by volunteers, and we offer the training for free. All costs associated with the doula program are covered by philanthropic dollars. There is some cost to market the program, but death doulas may present a very attractive donor opportunity. If you bring on board doulas trained outside your organization, they need only be trained as volunteers by your hospice to participate.

Having doulas work with your hospice is a win-win, though the road to victory is not necessarily easy. You cannot anticipate every question, scenario, or challenge, and it will take patience to make it work. Hospices were the first iteration of the “death positive movement.” Doulas are the newest. Let’s work together to make sure everyone has their good death.

Beth A. Eck, PhD, is a practicing death doula and the Director of End-of-Life Doula Services at Hospice of the Piedmont (HOP) in Charlottesville, Virginia. Beth started at HOP on August 1, 2021, where she was hired to develop an in-house death doula training program. Beth did her own training with the International End-of-Life Doula Association and Going with Grace. She is National End-of-Life Doula Alliance (NEDA) proficient and a member of the NHPCO’s End-of-Life Doula Council. She earned her PhD in 1996 from the University of Virginia and is an Emeritus Professor of Sociology at James Madison University where she taught for 25 years, most recently in the area of death and dying.

NHPCO’s End-of-Life Doula Council promotes awareness and understanding of the end-of-life doula role. The council is currently seeking feedback on the role of end-of-life doulas in hospice; share your perspective now. To learn more about end-of-life doulas, register for the 2022 Virtual Interdisciplinary Conference to access the on-demand content library through December 31, 2022 and view the session: “Workforce Shortage is REAL…Doulas Offer Real Options.”