Preparing for Advocacy

“It’s been exciting to see growth in deathcare in general, from body handling options to new ways of providing support,” Loren says. “But this is all still at a foundational level.” That’s because the end-of-life doula space, like any sector, has some challenges. More death doula schools are emerging, which is a double-edged sword. Without the benchmark of universal accreditation standards, schools will inevitably vary in quality and content, producing doulas who are at different levels of preparedness for the work. Additionally, not every end-of-life doula wants to become part of the formal health care model—a pivot back to the original idea of existing outside the system. 

Now, INELDA is strengthening that foundation so that it can most effectively advocate for policy changes. In recent years, it has moved to a board-led model, continued to build out its robust scholarship program, adjusted its code of ethics, and reassessed and refined the curriculum. “We involved all of our educators in that effort, which incorporated a wide range of different, lived experiences—that of palliative care, nurses, and so on,” Loren says. “And that lays the groundwork for moving into the policy space.”

Policy is built into INELDA’s 2025 strategic plan, starting with identifying the pillars that are essential to moving forward in policy research and education. “We are in the information-gathering stage and looking at how to create momentum internally for members to have that platform,” Loren says. “At this moment, we are not ready to advocate for Medicaid coverage on the Hill—first we need to pinpoint what outcomes we are hoping for in the near future. What do we want to put forth, as a community that has gone through many different training organizations? These are important questions if we want to make sure that the support we offer is legitimized in different spaces.”

INELDA is tapping into its strength of being a collaboratively led organization that listens to and directly addresses the needs of its members, such as determining which policy initiatives are most important to its diverse member base. It is also looking at existing research that supports doulas, as well as identifying what research is missing. “Solid research is essential to enacting good policy,” Loren says, noting a recent project with a doctoral student at the University of Utah. Loren says part of this policy-driven research should also look at defining the doula role and what qualifies someone as an end-of-life doula, such as hours worked serving the dying and course completions. “This is why I am excited about our new certification program. We redesigned it to be a yearlong cohort process, in which participants are really held by the educators,” Loren says. 

Collaboration is Key

“Additionally, we are partnering with other organizations to leverage each others’ strengths and mutually support growth,” she says, adding that INELDA is prioritizing organizations that serve in-need populations. INELDA is working with the National Health Care for the Homeless Council’s working mortality group, training volunteers to provide end-of-life doula care to unhoused people. INELDA is hoping to replicate this in other cities, and is currently working toward getting a grant from the McElhattan Foundation to do this in Pittsburgh. In upstate New York, INELDA trained doulas in the regional health department, enabling them to serve dying people in rural communities, which are experiencing a health care crisis nationally. “Training these providers is a powerful way to diminish the end-of-life care gap,” Loren says. 

To get a better idea of what that looks like on a state level, INELDA is engaged with the Goals of Care Coalition of New Jersey to improve palliative care coverage and understand how to apply that to coverage for EOL doulas. On the national level, INELDA has been a member of the Coalition to Transform Advanced Care (C-TAC) for the past three years, attending the recent National Leadership Summit in Washington, D.C., to keep end-of-life doulas in the national conversation. “This kind of community building is so vital to understanding what our policy advocacy will look like moving forward,” Loren says. 

It’s fair to say that 2025 will be an unpredictable year full of sweeping changes. In the meantime, Loren says doulas can supplement volunteerism with other revenue streams, such as workshops, that can bring deathcare to the community while also providing doulas with financial support. Creating a nonprofit that can apply for grants to bring better deathcare to underserved communities is another avenue. 

Are you involved with a city, state, or national organization that might be open to working with INELDA? Contact us!