End-of-life doulas and the art of dying well
You’ve probably heard of a birth doula – someone whose job it is to coach mothers through childbirth. Our next story is about a different kind of doula – an end of life doula. Their role is to provide emotional support to dying people and their families.
Death Doula Zoe Francesca discusses what it means to live — and die — well during a meeting with her client Mimi Burrows and Mimi’s son, Peter.
ZOE: Throughout human history we've always sat at the bedside of people who are dying. And when there isn't family or family is not able to do it the community has always stepped in. I’m Zoe Francesca, and I’m an end of life doula. Today I’m going to visit my client Mimi, who I love, and I’ve been working with for over two years now. And I’ve seen her change over time, and it’s been such an honor.
MIMI: I have a pretty happy memory of life.
ZOE: You know some people are like that, and I think you’re fortunate.
MIMI: You think I’m fortunate?
ZOE: I do.
MIMI: Oh, I hope so.
ZOE: An end of life doula supplements the work of hospice. We come in you know hopefully months before the person is actively dying. Get to know them a little bit. Find out what are their fears, what are their obstacles. What are they concerned about worried about. And we try to address those one by one over time and then when the person is actively dying we should already have a pretty good sense of who they are, what they need, what they want, and we become their advocate and we become their companion during that time, and we don't leave.
MIMI: Where is he? Did Mike die?
PETER: He’s up there or down here, I’m not sure. (laughs)
MIMI: I don’t know.
PETER: He died.
MIMI: He did die?
PETER: He died five years ago.
MIMI: Are you making this up?
PETER: No, I’m not making it up.
MIMI: How did you know he died five years ago?
PETER: Because he’s my dad.
MIMI: He was your dad?
MIMI: Mike Burrows was your dad?
PETER: (warmly) Mhm. Yup.
MIMI: You know, this is dangerous. It is dangerous. Because I’m being – I don’t know whether he’s pulling a fast one on me, or I’m really being fed facts.
ZOE: No, it’s true. It’s just hard to keep – you know, when you get to a certain point in life, I think it’s hard to keep all the facts straight. And maybe it’s not that important anymore.
PETER: Yeah. Right.
ZOE: You know?
MIMI: Well, I guess it’s not that important anymore.
ZOE: You remember the essential things that make you you. They’re never going to go away.
ZOE: When she had more memory and more functionality, she would tell me long stories. And it was my job to listen and to respond and to help her figure out why these particular stories had stayed with her for over 85 years.
MIMI: But you know but memory is such a funny thing. When you have nothing to rely on in situations but memory, it can become so confused and so clotted. So. (Pause) Let’s drop it. (laughter) No more.
ZOE: It's been such an honor and such a pleasure to work with her; I've learned so much from her as they do from each of my clients. She was in theater for decades. She then became a speech therapist and helped people overcome their fears of speaking and their difficulties with speaking you know is always important to her about voice and story and presentation and performance. And so that's that's what she's carried into this final stage of her life.
MIMI: My life was not a tragedy. I have no regrets about the theatre because I loved it, and I think it made me a better person. I don’t have any regrets about my life, and that’s some kind of good feeling. I don’t have any regrets about Mike, and that’s sort of a good feeling. And maybe memory or the loss of it or the lack of it is the kindest gift God gives us. Because it just becomes a little blurred.
ZOE: It softens the edges.
ZOE (louder): It softens the edges.
ZOE I work with people who have dementia and memory loss who can't who can't rationally know that they're dying or can't talk about it rationally. So we talk on a symbolic level and we use music poetry art and that's my specialty.
ZOE: Here’s a beautiful song we play sometimes. It’s called “It Might as Well Be Spring.” Let’s see if we can get it to play. Here it is.
ZOE: One thing I love about my time with you is how many songs you teach me and how many plays you taught me that I never knew before.
ZOE: does it sound familiar yet? This is just the intro.
MIMI: Oh I like this song.
ZOE: It's easy to go through the day thinking of everything that's wrong and everything that's bad and all the things that are coming up that are gonna be hard or scary or difficult and working with people who are dying has given me a complete opposite view of everyday life where I just feel so appreciative. So aware so grateful. Sounds corny but it's really true.
ZOE: I didn’t know about State Fair until we met and you introduced me to it – you’ve introduced me to so many different plays
MIMI: Yeah well I discovered them but I just wanted to share them. And I just loved it.
ZOE: Yeah. There’s a lot to love there.