Doulas for End of Life Care

**Bridget Bergen** (0:10)
It's The Brian Lehrer Show on WNYC. Good morning again, everyone. I'm Brigid Bergen, sitting in for Brian today. Nearly a fifth of Americans are now over 65, and more of us than ever are living long enough to face a slow drawn out decline rather than a sudden death. Most of the dying still happens out of view, in hospitals and nursing homes, managed almost entirely by medical professionals. But that may be starting to change. There's a growing number of non-medical guides who sit with the dying and their families through the last chapter. This corps of end of life doulas has trained more than 10,000 people in the last decade alone. New Yorker staff writer Alexandra Schwartz spent a lot of time with some of them for her new piece, The Doulas Who Help Us Die.
One client she followed, a 100-year-old woman named Eleanor, told her doula near the end, You've added something to this end of life thing, which wasn't there before. Mighty useful.
Joining me now is Alexandra Schwartz and also Virginia Chang, Ph.D., the end of life doula at the center of much of her reporting and author of the new book, Preparing for the End of Life for Dummies. Welcome to you both.

**Alexandra Schwartz** (1:25)
Thanks so much for having me.

**Virginia Chang** (1:27)
Hello, Bridget. Thank you so much for having us here this morning.

**Bridget Bergen** (1:31)
It's so wonderful. And listeners, we want you to be part of this conversation. If you've worked as an end of life doula yourself, we want to hear what drew you to it. If someone you loved worked with a doula while dying or is working with one right now, tell us what that's been like. And for everyone else who's listening, who's just curious, what have you always wanted to ask a death doula? Now is your chance, give us a call, 212-433-WNYC.
That's 212-433-9692.
You can call or text. And Virginia, I want to start with you. Can you tell us what does an end of life doula actually do?

**Virginia Chang** (2:11)
That's a good question. I think that's the question of every single first, that comes out of every person's first mouth when you meet them, is what is an end of life doula? The way I define it is that an end of life doula is someone who guides, supports, companions, and educates about the end of life process to a dying person and their family and caregivers.

**Bridget Bergen** (2:36)
And how did you get drawn to this work?

**Virginia Chang** (2:39)
Oh, well, it's a long story, which Alexandra did write about in her piece. But I actually came to this work out of personal trauma.
There are many doulas who do come to the work out of personal beautiful experiences in the past, having experienced positive deaths as well as being very comfortable in the space. And so they want to share that familiarity and that with others. But I came to the work because of personal trauma. And I said, this doesn't seem right. This isn't what death should be like. And I was seeking a better way for myself. And then realized that there's something wrong in the greater picture of dying in society that we should really be considering on how to do this better.

**Bridget Bergen** (3:38)
Yeah. Alex, you tell us that this field traces back to a hospice social worker who had the idea to borrow the doula model from childbirth and apply it to dying.
What was broken in the end of life care that made him think that a birth support model could fix it? And tell us a little bit more about who that social worker was.

**Alexandra Schwartz** (4:00)
That's absolutely right. The hospice social worker you're referring to is Henry Firsko Weiss. He's someone who Virginia knows well.
And he trained his first group of doulas at the hospice where he was working in New York City in 2003 The reason that he thought that a new model was necessary for helping accompany people at the end of life was that hospice had sought to be that thing. Hospice itself, which now so many of us take for granted, you know, more than half of people on Medicare will use hospice when they die.
Hospice started as a radical alternative movement that came to the United States in the 70s and was meant to help people stop seeking curative care at the end of life and focus much more on quality of life, comfort, both physical and emotional. And hospice expanded very rapidly in this country because it became Medicare approved. And that was a great thing. It meant that people had much more access to it. But it also meant that it became bureaucratized and that it could be hard for hospice to meet the demands of such an enormous clientele.