Ep 15: Transcript
15. Caring for Those At The End Of Life with Amy Levine, Executive Director of The Doula Program
Brooke James: Hi everyone, welcome to The Grief Coach. If it is your first time listening, we're so glad to have you, and if you've listened before, welcome back. You can find us online at thegriefcoach.co, and on social at @The_GriefCoach. I'm very excited, today we have with us Amy Levine, who is a founding member of The Doula Program and currently the Executive Director and Director of Education & Training. Welcome, Amy, thanks for being here.
Amy Levine: Thanks for having me.
Brooke: So, if you could introduce yourself to the audience, so they get a sense of your background, what you're doing, what The Doula Program is, please.
Amy: Yeah, sure. It's kind of a long, long background, and actually the full name of our organization is quite long, but I'm just going to say it once, and then we're going to refer to it as The Doula Program.
Brooke: Okay.
Amy: It’s actually The Doula Program to Accompany & Comfort, and I think that's very central to what it's all about. And I'll be talking more about that, but I think just to be thinking about people who are facing the end of life alone, and we know that that end stage can be a couple of years, so if we just think of the simplicity of accompaniment and comfort. So I'm a social worker, this is my second career, actually. My first career was in film production, which is a long story, and I kind of moved into social work- getting a sandwich and passing somebody who appeared to be homeless and distressed, and actually that person appeared to be a child. And then I learned, in fact, it was a diminutive woman who was posing as a child, and what I just realized is, I want to help this person-
Brooke: Yeah.
Amy: Something's going on. So, I ended up in social work and ultimately in the field of hospice and geriatric psychiatry. And there, what I learned a lot is that so much was precipitated by loss, and also illness, and kind of facing all of this. I got involved with The Doula Program during the time that I was working in geriatric psychiatry and in hospice as a result of a colleague of mine being part of the pilot a kazillion years ago, 2001. And what I said to her was, “This is the most decent work I have ever heard of.” So simple, but just what we all need, and none of us want to be alone. So I asked if I could join the training, and my role just- I think it's just because I couldn't let go. And by this time, I was actually living outside the city. I mean, several, several hours outside the city.
Brooke: Oh my goodness.
Amy: And I was coming in, and first I was kind of a consultant to represent the organization outside, then I was part of the training, and it's just grown since. And, in 2012, we actually separated from a very large social service agency, and I established it as a nonprofit, so we really get to expand our work. And, it's just a joy, I feel like I have the best job in the world.
Brooke: Yeah. And I think one of the things that is so amazing about this organization is it focuses on people who are alone and- listeners, the way that Amy and I got connected is my cousin Gus volunteers with the organization- and one thing that really struck me after my father passed, was how lucky we were that we had a community around his death. So it was full time, me and my mom, and my parents had divorced years before, but she came back for this, my dad's brother, his sister lived five minutes away. And so, for all of us to be together, and I think it would be a very different experience if you had to do it alone, but then to think about like, you know, you're dying and you're in hospice and you're by yourself. I can't. It would be a very different experience, and I think that it's so lovely what you guys are doing, and so important.
Amy: Thank you, thank you.
Brooke: But when you were founding it and starting it, was there a reason- or, what made you guys decide to focus on that?
Amy: Yeah, I mean, I'm going to go back to actually the person who thought of this idea, a woman named Phyllis Farley, who just actually has recently died. And I would say, you know, surrounded by her family, at 96, and she was somebody who was very, very big in the baby doula movement, and she had gone to some lecture- and this is how the story goes, or how she used to describe it- which really talked about those folks who are just so isolated as a result of, at the time, we called it terminal illness, and then so many people in the city who were literally dying alone. And so I think that that concept in itself, at first it was very focused on people who had no one. And then, I think, we all, I, began to really, really believe and understand through my work in hospice, that you can have people around, but in terms of being heard, seen, and known-
Brooke: Yeah.
Amy: Sometimes that's not possible. And in the same sort of way, sometimes people or families are around, but people are also grieving, and so there's a kind of isolation that happens also for somebody, not all the time, but who have friends or family. So, there's a sort of syndrome that I saw of people backing away. A lot of it is, I think, our own vulnerability of “I don't know what to say, so I don't want to bother that person,” but I think the other thing is we're not just our diagnosis. We're not just a disease. We're not just our age. And, who are we? And I was beginning to meet people, and like myself in a way, I may not be playing tennis every week, but I'm still a tennis player. So who's, you know, so at a time when somebody is seen in their last couple of years, let's say, or sooner than that, who really are, they're isolated, they're home, they mostly are interacting with healthcare and maybe social services who are attending to their needs. That's one part of who they are. So, I think that what became really profound for me, and really the driving force, is this sense of personhood. Who am I? And particularly when I would come into a room, particularly in nursing homes where there had been family and they would put pictures over this person's bed of when they were interacting fully in the world, and all their roles, and it kind of screamed out like, “This is who I am.”
Brooke: Yeah.
Amy: And we are the culmination of our experiences. So something about what we do, which is to partner with these social service and health care organizations who are doing what they're doing, they will identify somebody who really could benefit from this special relationship. And someone like Gus, who’s continuing to visit somebody, will visit weekly until the person dies. And I think this idea that you were talking about, which is that you were there with your father, you were sharing this stage of his life.
Brooke: Right.
Amy: And that doesn't happen, all that. And so I think it's this commitment to understanding that this is an end stage of life is part of life.
Brooke: Right.
Amy: And so in terms of having a relationship, however one is able to interact. So let's say the person who's seriously ill may not have words all the time, and that's okay. So they may meet, the volunteer may meet, at a time when there is interaction, and then as illness progresses, the interaction changes.
Brooke: Yeah.
Amy: But what is happening in the organization is a) there has been intense training, but the other piece of it is, I think what drives it, is there's no us and them. So, you have the basic kind of training, but then we're coming together in doula group meetings, we are coming together also in joy in many different ways, in picnics in central park and onward. But I think the other thing is, all of us who are engaged in this stage of life become isolated too, because no one wants to talk about it.
Brooke: Yup, that’s true.
Amy: And so then there we are in this special place again, like the person who is in that special place because they have an illness that's ending their life, so we do it to each other. You know, there's something that happens. I just did a workshop actually for a social service organization on end of life conversations. Mostly what I worked on, and talked about, and we all talked about is the isolation.
Brooke: Okay.
Amy: We don't get practice, do we?
Brooke: No.
Amy: Yeah.
Brooke: No, and I think even if you're verbal and you have people around you, most people aren't comfortable with- like, even I remember, I would just be really upset or like, “I can't believe this is happening, this is so terrible,” when he could still talk. And that would be terrible to hear your kid say that, I assume. But how isolating it would be and, I don't know the physicality, I have no medical training, but when you are retreating and becoming more nonverbal. I remember him being like, “I don't know how to say what I want to say,” and that would be an isolating and difficult experience.
Amy: I just, if you don't mind, I want to come in about what you were just saying, which is it's a terrible experience. I would say it's a real experience.
Brooke: Yeah, I think that’s true.
Amy: And I think that's the thing, which is there is no right or wrong, and the sense of, all this out there that gives people checklists, you know, we're all human beings. And the fact is, is yeah, you were feeling sad and there's every reason, okay, and it's a sad time. And so to not express it, is kind of, in a way, a little odd, I would say, because yeah, this is what's going on.
Brooke: Right.
Amy: And that's why it's difficult for all of us, which is to kind of head into some of the pain, but in that pain there's also all sorts of other things going on, isn't there? There's the hanging out, and there's the everything else. And so, I think that if we give more space to it, and realize, “You know what, I've never known anybody who doesn't stop crying.”
Brooke: Yeah.
Amy: Okay, so I've cried, you've cried, and actually when we're allowed to cry, and feel that, there was an ending. What I find, is if we don't really, the anger builds- whatever it is- but if we don't express what really is happening, we actually don't get to the other side. And you know, I don't know where I'm going with this, but I think that, I think the sense of when somebody is not speaking, or have fewer words, it's this sense of, “Can we be patient with that?” Can we say to somebody, though it may be upsetting for us, “You know, I have time.”
Brooke: Yeah.
Amy: “You know, I have time.” Sometimes I've given people, actually, a piece of paper and a pencil, if they can, and sometimes somebody has drawn pictures from me.
Brooke: Oh.
Amy: Sometimes I describe it as sort of a sense of, you're moving in with somebody where they are. You may not feel as if you get everything, but I think that what I would want, and I think it's the willingness to say, “I may not speak your language right now, but I'm willing to take the time to understand.” And sometimes there's just a sense you get. You know, you may not get the same words that you would normally, but the way it's being expressed, or you know this person, you kind of pick it up. I don't know, did you have that experience at all?
Brooke: A little bit. We, I mean, we have a very big family and were lucky enough to have a lot of us there. And I think as part of my own processing went to the more checklist portion, and I remember thinking, because my aunt said to me like, “Don't you want to be up there and sitting with him?” and I definitely did that every day, but I was like, “That's not my dad that I know.” And so it's interesting to hear you talking about the end of life stage, and that you're meeting someone where they are, and it is a different language, but I very vividly remember being like, “Well, that's not my dad anymore,” and it was much easier for me at the time, too. I was power of attorney, I was managing hospice care, and I was doing all of this stuff that was like, “Okay, if I just focus on my checklist,” that is- like a task was easier for me than the emotional, and obviously I cried several times a day every day while all of this was happening, and would go and sit with him, and I was the one giving him his medication, but it's interesting that you say it like that.
Amy: Yeah, and again I really want to emphasize that there's no right or wrong.
Brooke: No, I know.
Amy: And I think that's important. I had someone who I was working with, just during hospice, and it was a mother and a daughter, and they were now, the daughter was taking care of the mother, but they hadn't actually been close, so the daughter had moved back. And I remember, you know, different kind of conversations, but they ultimately wanted to have a conversation. And the day that I was going to be there with them, everybody said, “Well, you know, don't come, she's quote unquote out of it.” And I said, “Well, you know what, I'm coming,” because I really don't believe that. I may not, you know, there may be a communication that's different or whatever. So we all sat on the bed, and I told the woman who was dying that I was there and so was her daughter, and her daughter told her that she loved her, and her mother told her that she loved her daughter, and they held hands. I would say her mother didn't say another word after that, and hadn't spoken for two days. After her mother had died, her daughter called me up and said, you know, “Was that real?” And I said, “Yeah, it was real. It was real,” And she said, “But I didn't tell her it was okay to let go.” I think it's important- I really want to get across- that she felt a little tortured, that somehow she didn't do it right. I think that we really, really need to put all that aside, because there is no right or wrong. It's what happened. They exchanged this loving exchange, and people die. So I think that some of these checklists really came from this real sense of wanting to reassure somebody that they're going to be okay. So, if a daughter, you know, says to her mother, “It's okay to let go,” in so many ways, it’s kind of saying, “I'll be okay.” But I think that some of this, without really interpretation, these checklists really came from something more than the right thing to say. We all know, you know, okay, there's nothing- that's your relationship with that person, and you can trust your gut, and I think that's kind of important. I think the sense of venturing in is where we all want to be.
Brooke: Right, but that’s scary.
Amy: It's scary.
Brooke: And I think that's probably where the checklists come from. I know, for me, part of the reason I started the podcast was because I felt like I was learning so much as it was happening, and all of this, the practical end of life stuff that no one ever talks about, I was like, “Okay, well, other people need to know this,” because the fact that I was having this devastating experience and also having to figure all of this stuff out. Because most of my friends haven't done this, or if they did, their parents were married, and so their spouse was doing it, or whatever it was. Or like my parents' friends were the ones who were like, “Don't forget about the AmEx points”-
Amy: And the passwords.
Brooke: Right, and all the passwords and all, and which, like I knew my dad's passwords so that was easy, but I don't, I think- what you're saying of there's no right or wrong way, and it's interesting, even like within my own family, everyone is dealing with it differently, and the way everyone's doing it is okay for them, and you need to do what's right for you at the time. Both if it's an expected death and you know it's coming, and then also afterwards. And you get there, as I'm sure you've seen, at different times, like he had four kids, and everyone is doing, grieving on their own, what they need.
Amy: Yeah, but you know, I think you're talking about two things, two separate things as well, which is, and I may have misinterpreted, but the practical stuff that nobody talks about, which is planning, because people have a tendency to not plan until there's a crisis, which is totally the worst time to plan.
Brooke: Because you're so emotional.
Amy: That’s right. So if we all had healthcare proxies and advanced directives with somebody, okay, smart thing at that stage-
Brooke: Because I hounded him about it like a crazy person.
Amy: That's right, that's right. And I hounded my own father. I was going to say, I don't have a family that's any different, okay. Until he wouldn't do something like that, until he was 90. So, I mean, I think that it feels as if, you know, we may have certain superstitions, or certain kind of cultures, or different backgrounds, or whatever it may be, or experiences that feel like that's sort of bad luck. Who knows what we all have. But certainly, what would happen if it was integrated in our lives? I have a healthcare proxy. I have an advanced, you know, I have a power of attorney. I have a couple of different people in case the people that- but it's generally precipitated by something, and my will and whatever- I had a serious operation out of the blue, and I'm fine, but that precipitated a will.
Brooke: Yeah.
Amy: Okay, so, but what is it about, you know, integrating this, so simple things we probably could do all the way along the line. But then you're talking about the emotional makeup of all of us, and the psychological, and the spiritual, and how unique we all are, so it's not just, you know, so we've got all of us on this continuum, and some of us are way ahead of each other, but we're all sort of headed in the same place, I'm afraid, unless you know something otherwise. But I think this other, that the person who is now facing their end of life and stage of life becomes the other, and what would we, what would it be like to just be honest with somebody and you say, ”You know, I want to spend time with you, I'm just struggling that I might say the wrong thing.” What happens if we start talking to each other directly?
Brooke: Yeah.
Amy: You know, “I can't hear you all that well, and I don't want to push you, but I so want to hear what you have to say,” and “I have the time, but I am very sad right now.” What would happen if we spoke to each other the way, kind of directly as adults, you know, if we can in other stages of life.
Brooke: Yeah.
Amy: And, but I do think that language escapes us because we just don't share our knowledge. And so I think that this podcast and what you're, you know, you're engaging every time, and that can't always be easy in terms of drumming up one’s own sadness.
Brooke: No. Well, and it's getting close to a year, and I had therapy this morning and we were talking about that. So, that's why I'm a little more emotional than normal. Or maybe just, I don't know. But I think sometimes it's really easy and it's no problem, and sometimes it is sad, but I also, I'm very much at the point where I'm like, “Well, this is sad,” so I'm crying. Like, I'm never going to not miss him. I don't get embarrassed about it, but as far as the logistics, I guess, around doing the podcast, it really depends. Sometimes it's fine and sometimes it's not, but I think that this is important-
Amy: Yeah, it is.
Brooke: -which is why I am doing it, and I wish that- like I want to build what I wish I could have had access to, because I didn't find resources. I found a couple, a couple books, a couple TED Talks, whatever, but that's why I'm doing this.
Amy: It's wonderful, thank you for doing this.
Brooke: Yeah, thank you for doing what you're doing. One thing that I really love that you just said about some things to say and speaking directly to those who are dying, which was great. Just, also- since you were in geriatric psychology- I've noticed both within my own family, and you see it in movies, and represented in media, whatever, that when someone gets older, people start to kind of treat them a little bit differently, and I think it would just be useful for listeners, if you had any other advice for people who are getting older. It's harder for them to move, it's harder for them to hear, and I don't know if you've ever noticed this happen, but were sometimes you start treating an older person like a smaller child.
Amy: Yeah.
Brooke: Yeah, and I know we didn't talk about that before, but if you had thoughts off the top of your head, that would be useful for people to hear.
Amy: I have a strong- at my age, I have strong- you know, I mean, I'm starting to be called “honey.”
Brooke: I got called “ma'am” today and I was like, “what’s going on?” I was like “uh oh, excuse you.”
Amy: Yeah, so I mean, I think that, to just keep in mind that person isn't the other, you know, and imagine yourself beginning to have some, I don't know, things that are interrupting some of your abilities to be as independent as you once were, to interact. And what you might want somebody to relate, you know, let's just imagine that the person isn’t 80, but it's a person who's 25 and broke their leg.
Brooke: Right.
Amy: You know, what would be your response then? I think there's also something that people assume, which is that people's cognition is automatically impaired-
Brooke: When they're physical.
Amy: When they're physical, and if they're of a certain certain age. So I think there's a combo thing that goes on. I think there's this- so what would happen in the same way, which is if you have somebody in your family who may be struggling with control. We all, as adults, I mean, I like control.
Brooke: Yeah, I love it. Yeah, with you.
Amy: Right, okay. Yeah, so we generally have lots of control. So now, as one’s needing more help with all sorts of things, you know, it feels like your world is out of control. So I think that you're looking at common goals, if there is a family member or somebody close to you who's now struggling with that, and one's instinct is to take over, okay, that person could get hurt, all that kind of protective sense, which is totally understandable. What happens if you engage in a real honest conversation, you know, which is, “This is what I'm noticing. I want to help, but, at the same time, I don't want you to feel insulted,” or whatever it is that’s a real conversation. And, “I'm wondering what would make your life easier?” or, “What would enable you to do the things that you love to do?” And so I think that's where you start, which is, yeah, there's a wonderful quote, and it's not mine, right now I can't, unfortunately, come up with who, but I think it's Dr. Remen, Rachel Naomi Remen, who looked at fixing, you know, helping or serving, and something like “fixing is looking at life as broken,” and that “serving, we're on the same level.” And so, I think our fear is what gets in the way of lots of things, and our own vulnerability. So, I think the sense of things are out of control, we want to get it under control, and so I think that's a very natural place to go sometimes with jumping to maybe undermine and we don't really mean to.
Brooke: Yeah.
Amy: I'm not sure if I really got to that.
Brooke: You did, you did. No, well, just because I noticed similarities in when my dad was going into hospice, and kind of what you see in older people who have their faculties, and I thought based on your background that you would have some good insight, and you did. We talked about how you talk to people who are sick, but just general acknowledgement of end of life, we spoke about a little bit, but I think it's a really important thing, and I think our culture as a whole is moving towards being a little bit more comfortable talking about it. And since you've been in the field for awhile, like if you've seen any changes in more acceptability around it, or people are more open to talking about it, or if you've just noticed changes, and people's willingness to engage on this subject.
Amy: Interesting. Sometimes it's hard for me to know because my world-
Brooke: Because you talk about it all the time.
Amy: I talk about it all the time, but, however, I have to say that, and this may be a disappointment, I don't know if we've come very far. And what I mean by that is it's still in special places. Meaning, you know, people are saying that they're an expert, okay, on, you know, and I think it's great that there are people available to other people, when we were talking about resources, but I guess my interest would be- is how can we integrate this stage of life so that we actually, honestly, at a dinner, you know, at dinner, say, “You know, I just went and visited my friend so and so, and this is the conversation I had, and it was really difficult,” and other people at the dinner-
Brooke: Don't freak out?
Amy: -don't freak out, and share their experiences. What happens for me is quite the opposite. I come home, and we go out to dinner, and if I really talked about what my day was like, most people say, you know, “Do you think we could change the subject? This is awfully depressing.” Okay, at a party if people ask what I do, I now actually say, sort of, “end of life stuff.” And so the people who really want to talk to me like a normal person do, and what I mean by that is if I really tell people honestly what my background is, and what I do on a daily basis, most people feel very frightened. And so the first thing is they tell meI'm an angel, or something like that, but you don't want to talk to an angel. And then they go off and get a drink, and I'm pretty isolated. I really, I just wonder what it would be- and so, I think you're right, you know, there are more columns about it, there's more discussion, and I think that's good.
Brooke: Yeah.
Amy: You know, because we, in all honesty, you do see there are more resources, there's more to pick from, and you know there's help out there, but I guess my goal still would be that we share this stage of life, like we've shared all other stages of life.
Brooke: Right.
Amy: You know, and we learn the language because we can ask each other, “I've never been to a wedding, what do you do?” “I've never been to a this, I've never been to a that, I've never gone through this, what do you do and what do you say?”
Brooke: Yeah.
Amy: But actually, I don't know that we really share. We share the last moments, but we don't share the- when somebody got diagnosed and I didn't know how to talk to him because I was afraid that I was going to upset everybody, and I didn't know what the right thing to do. And I think that's the thing that we can learn from each other about how that really was, and what we said, and because I think those are the moments that are hard.
Brooke: Yeah, they are. And like, people would be like, “I don't know what to say to you,” which I loved. And, I'd be like, “That's good.” And they'd be like, “What?” I’d be like, “That means you haven't gone through this, so, like, it's okay that you don't know what to say.” And you could see people, like the sigh of relief, but I think what you were saying earlier about there's this fear, and having people realize that it's okay that they don't know, and, just, you're there for people you love, and you help if you see someone needs help. I thought, one thing, and I'm sure you've seen this in both your personal and professional life, people are like “Well, what can I do to help?” I'm like, “Just be helpful.” Like, if you can think of something helpful, just do it. And I don't know what part of my personality that I'm just so open with all of these people saying all of these things, because I think often people have the thought of like, “I don't know what you can do to help.” And you’re like, “Just like, it's fine, nothing,” and I would be like, “No, anything you can think of.”
Amy: Yeah.
Brooke: Because I don't know what you're comfortable doing.
Amy: And maybe you don't even know what you need help with.
Brooke: Right, and then I have to think like, “Well, what do I need help with? I don't know.”
Amy: Yes, yeah.
Brooke: And so, I think, exposing people to different experiences around loss, and just scary things like a diagnosis, accident, whatever it is, and people being a little bit more open and comfortable talking about these things. If people who haven't experienced those yet can then listen to those experiences and take it, and be like, “Oh, wow,” and everyone can be just a little more empathetic if we're more open and vulnerable with each other, which is scary, of course, but that that's okay to do, I think will help people get there.
Amy: Yeah.
Brooke: I don't know long that will happen.
Amy: Well, I think we're all doing it. You're doing it. This is what this is about. You know, you're sharing your experiences and you're bringing other people in to talk about their experiences. And I think that's what goes on, which is- in our doula group meetings, I mean, we have, I don't know if I mentioned, but everybody who's a doula have other professions.
Brooke: Right.
Amy: So, and they're all ages, I mean, 20s to- actually, most people are working, there are very few people who are retired. So, there you are, you're all together and you're talking about everybody's experiences with these remarkable people, because every human being is remarkable, and sharing our- just comforts, and joys, and whatever- and there we all are in a room, and it's about everybody feeling perfectly fine to talk about it.
Brooke: Yeah.
Amy: And so, I think the more conversations we have, and I think it's great, which is- somebody felt comfortable enough to say, “I don't know what to say,” versus, you know, “I'll leave her alone.”
Brooke: Right.
Amy: And that's what we, you know, so it's natural, I don't know really what to say. I mean, honestly, I mean every single person's in, you know, and so totally unique. So I think it's really this openness to be able to say, “Hey, I know you're going through this,” like, I'm not going to ignore this. And you're who you are, so you say, if you see something, you know, help however you see it. I have said, just please, please be around. Please be around, you know. I’ve said that also in thinking about my end of life, which is I want people who want to be there.
Brooke: Right. And that they're not too scared to be there. Or if they are, they work through it to be there for someone.
Amy: Or they may actually, we may actually be all sitting around feeling pretty scared, and that's okay too.
Brooke: Yeah.
Amy: I think that there's this kind of acknowledgement that there's a lot of discomfort, but our willingness to experience that.
Brooke: Yeah. And where could someone find you online if they were looking fo you?
Amy: www.doulaprogram.org, and that's D-O-U-L-A program.org, or probably Googling, you know, “Amy Levine Doula Program.” And feel free to reach out to us.
Brooke: Okay, amazing. And then this has been really wonderful. I'm so glad that you got to come on, and it's great conversation. And if there's anything else that you think that came to mind that we didn't cover. I feel like we covered a lot.
Amy: Thank you. I just want to thank you for bringing me on and having this conversation.
Brooke: Yeah, thank you for being here. Alright, everyone, thanks for listening. Hope you enjoyed today's episode. You can find us online at thegriefcoach.co, and on social at @The_GriefCoach. If you want to get in touch, you have feedback, you have ideas for future episodes, things you want to hear about, you can reach out to me at hello@thegriefcoach.co. Thanks everyone for listening.