Death Doulas Working in Hospices as Volunteers: and why I find that problematic

In an article published by HospiceNews.com on April 30, 2024, I read about the growing collaboration between hospices and death doulas, and I was genuinely excited. For a (small) moment, it felt like recognition, like the system was beginning to see what so many of us in this field already know: that death workers can deeply enhance the quality of end-of-life care.

The article quoted Diane Sancilio, Director of Counseling and Support at Gilchrist Cares, saying, “Having doulas at the bedside during the last days of life has positively affected hospice quality outcomes, including those among underserved populations.” I couldn’t agree more. Death workers (often called Death Doulas) bring presence, education, and emotional steadiness (and many other wonderful modalities) to moments that medical systems often struggle to hold because of time constraint, short staffing, and Medicare regulations.

But then, a few lines later, I was stopped in my tracks when I read: “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. And there it was, the word I find problematic: volunteers.

When hospitals and hospice groups lead with “death doulas as volunteers,” it might sound like excellent community care. It might sound compassionate, accessible, even “progressive.” But what that framing actually communicates to the public is that this work isn’t real work, that it’s kind and helpful, but not skilled enough to be compensated. It suggests that emotional, spiritual, and relational care are “extra” - a nice add on, but not essential to the quality of dying or the health of a family. And it implies that those who do this work don’t need support. Because how can anyone advocate for pay, rest, or structure when the system has already labeled their work as free?

Here’s what most people don’t realize: hospices are actually mandated by law to provide at least 5% of their total care through volunteers. That requirement comes from the U.S. Centers for Medicare & Medicaid Services (CMS), under Federal Regulation 42 CFR §418.78, a rule established in 1982 to ensure “community involvement” in hospice care. I read that as, free labor.

On paper, that “community involvement” goal sounds good. In practice, it’s outdated, and it keeps relational care confined to the “unpaid” category, no matter how skilled or transformative it is. It raises a bigger question: Is healthcare in America truly care, or is it business? We all know the answer to that.

I don’t want to “work” for hospice. I don’t work for free, and I don’t want Medicare telling me what I can and cannot do. I want to work alongside hospice, as an equal partner in the ecosystem of end-of-life care. If hospice organizations aren’t ready to see death workers as essential contributors, then my compass, and the compass of the death workers I train, points toward the general public. That’s where the true relationships are built, and that’s where the real work of culture change happens.

Hospice groups that genuinely care about community care, holistic end-of-life care, their staff and their patients - would meet with their local death doulas and refer their services out to their families. But, that’s not good for business.

Hospice systems, like most institutions, want everything to be boxed in. But death doesn’t work like that. Death doesn’t care about our credentials. Presence can’t be standardized. You can regulate paperwork, but not thresholds. You can measure hours, but not sacred moments. Death work as I know it moves at the pace of love, not policy.

This is exactly why I apprentice death workers to build sustainable, creative businesses outside of institutional structures. I teach them to root their income and impact beyond the narrow box of “end-of-life care.” When your financial resources come from other streams like art, teaching, writing, coaching, community offerings, your presence with dying people (and the ones who love them) stays fluid.

And for those who want to volunteer? Do it, but do it on your own terms. Volunteer with your community, not the system. Put out a call to your neighbors. Contact local churches. Post on social media. Hang flyers in cafés and libraries. Keep holding circles. Keep teaching classes. Keep hosting Death Cafés. There are countless ways to stay with the people.

If you are a death worker and you are in need of deep help finding sustainable ways to do your work, outside of bedside care, please check out my many mentorship offerings.