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Take Note: Oceana Sawyer on Advocating for the Dying as an End-of-Life Doula

As an End-of-Life Doula, Oceana Sawyer helps people die in a context of love, grace, and beauty. She draws upon her training in expressive arts, meditation practices, and integral counseling psychology, among other things, to help her clients create a conscious—even pleasurable—death experience. Oceana talked with us about what it means to be an End-of-Life doula, her own experiences with death and grief that led her to this vocation, and how we can learn to die as consciously as we live.

For a free guided meditationthat can be played during a remote vigil for someone who is dying, click here.  

Here’s that interview:

Lindsey Whissel Fenton: Welcome to Take Note. For WPSU, from my home studio, I'm Lindsey Whissel Fenton. As an end-of-life doula, Oceana Sawyer helps people die in a context of love, grace and beauty. Oceana draws upon her training and expressive arts, meditation practices and integral counseling psychology, among other things, to help her clients create a conscious—even pleasurable death experience. She specializes in vigils, end of life vision maps, and facilitating living funeral ceremonies. She also teaches courses on sensuality. Oceana, welcome to Take Note,

Oceana Sawyer: Hi.

Fenton: You are an end-of-life doula, which isn't something most of us typically learn about, let's say our high school or college career fairs. So, let's start with some background on just what is an end-of-life doula?

Sawyer: Well, basically the way I like to describe it, and I'm not sure I'm the first person who came up with this term, but it's, it's like a concierge for the end of your life. The end-of-life doula, specifically, is the person associated with the person dying. So, they're paying attention to what their wishes are, what they're in terms of comfort, and how they want to die, where they want to die, who they want to have with them. They're not the same as hospice. And they're not the same as the medical professionals or even the chaplain, it’s really a role that's very much focused on the actual person, and what it is that they want and how it is that they want to die. So, we end-of-life doulas work, as a member of the team. So, we do partner with hospice, the doctors, the family, the religious figure, whoever that is. So, we see ourselves as part of a team.

Fenton: How did you come to this work, or this vocation?

Sawyer: Really, it was my father. He and I—back in 2007—decided that we were going to explore how life ends together. And I say it like that, it wasn't like this, like, “Hey, let's figure out how to die conversation at all. It was more like… he had had several mini strokes over 10 years. And he was very much disabled. And he was pretty much done. So, when he got this diagnosis about his kidneys failing and needing renal dialysis, he's like, “Forget it, I'm out. I'm done.” So, he did consciously choose to die at that point. And his position was, “I'm just going to party on out. I've had a good life.” And hearing that I thought, yeah, “I'm gonna come and hang with you, and see how this is done.” I was already pursuing some spiritual training. And so, his openness to his own death allowed me to come along, at that point as a spiritual apprentice to see how that space is. And what I discovered was, “Oh, my God, this incredible, this gorgeous liminal space that's every bit mysterious.” Yes, we know people like to talk about the mystery of death. But it's, it's so much more than that. It's like, going through a forest that goes up and down, and it has it twists and turns. And it's very quiet, the whole thing is very quiet. There's this stillness in that process. That is, I've never actually talked about it like this. It's fairly indescribable. And you just feel the whole time, like you're watching this movie. And you never know what's going to happen next, and you're just in awe, at every change at every step along the way. And I was able to stay open and attuned to him so that I could figure out what it was that he needed as he went along. And that was, I think the piece that really got me hooked around being a doula, because if you're paying exquisite attention to the person who's dying, you can feel what it is that they need less light, more blankets, even if they're unconscious, you can just feel that and to just be attuned to what it takes to actually leave your body is just it's a high, it's a high dharmic space, put it that way.

Fenton: Was that your first time sort of going through a death experience with someone?

Sawyer: Yes, it was. And I think the other thing that really got me about that was that When he did actually die, I changed, I turned the television off, he was a lot of people from his generation, just watch TV 24 hours a day. And I had it all I know, I see this a lot. When older people are in that dying process, there's television happening all over the place. And then at some point, you just turn that off. So that this, the spirit can just sort of depart. And I turned it off is intuitively and I started playing music. And as soon as I did that, you could feel this thing in the room change. It was like it filled up. It was an empty space, very empty. My brother had gone to the mall, he needed a break. That happens, by the way, a lot. People don't decide to leave their body until the family is not there. And then they can just get out quietly. So, my brother had left. I was there, I put the music on. And all of the sudden, the room filled with this energy. Now, I'm already a spiritual person. But I'm also a rational person. And some part of me that, “Oh, no, this isn't happening. No, not.” And I tried to like—no. But it was so tangible. I could feel it on my skin that the room filling and then I just sort of let go into it. And it was like the ancestors, their energy was there. And he was there to take him across him over. And when he did leave his body, he raised one arm, his eyes opened, his mouth opened, it was like he was seeing God. That expression on his face. I'm getting chills just talking about it. That expression on his face was just like, “Ah, wow, okay, this happened.” And then there was this, like, shock of more energy, and then dissipated, whole thing was like that that amount of energy was gone, like within a half an hour. But still, you could feel this, like, “Yeah, he's kinda, it's still happening.” It's a gradual process. So, the exploration of that is what really got me I don't even know if I answered your question.

Fenton: No, I just yeah, following this journey with you. And, what kind of work had you been doing prior to tapping into this, this vocational calling to end of life work?

Sawyer: Well, let's see, at that point. I was just basically semi-retired. I had been an organizational development consultant, human resource manager, and I was kind of doing that part time. And then I was also exploring the spiritual path. So, that's what I was doing at that moment in time. And it was, it's funny because I, I didn't have any aspirations around death or dying, or taking care of people who are ill, you know, my mother was a nurse, I had a very pragmatic view of all of that and nothing sentimental about it at all, very scientific actually. So, when I stumbled into this liminal space of dying with my father, it was just like, Wow, it felt like it is when you come across that thing you're supposed to do now with your life and you're I don't know about you, but I was never that person who thought that, “I have found my niche.” I am, you know, I went to college. I have so many degrees ridiculous. I, you know, worked for corporate America. I taught English. I did all kinds of things. And not always… I kept thinking, “Well, this is not quite my natural call—this, isn't it.” When that happened? I thought, “This is it. This is exactly my niche.” But then, you know, it wasn't like, you know, back in 2007. In Northern California, it wasn't like there were doula schools all over the place, like there are now. Don't get me started talking about that. But yes, so there wasn't that. And I toyed with the idea of joining the threshold choir, which is this group of people who sings at bedside when someone is actively dying. It's gorgeous [inaudible] the threshold choir, you can find one in your area. I highly recommend that for a vigil to add to your vigil experience at bedside when someone's dying. So, I toyed with that for a while. And then I got into other things, actually training to be an educator in the realm of sensuality. But then people around me started dying, and I was there. So, it was only a couple of years ago that I decided to make that a formal, professional thing that I do.

Fenton: So, you mentioned that there aren't, there are now sort of these end-of-life doula schools, but at the time you embarked on this, there wasn't so much. So, what kind of training prepares one for this kind of work? Or, how did you… how did you shape your background to do what you do now?

Sawyer: I always say that you do not need any training to be an end-of-life doula. You just don't. There's no state or national certification. Anyway, so it's not necessary, and a lot of doulas that I know, have simply picked up some traditions from their family, their ethnic family of origin, or their spiritual tradition. And all of that is part of what it is to be a doula. And honestly, I was gonna bottom line for you; all you have to do is know how to hold space and pay attention to the person who's dying, that's all. Now, of course, in the in the different trainings, you learn some practical stuff, that's good to know, you know, some legal stuff and some practical things from people who have had a lot of experience doing it. And that's fair. And you should, like I'm always educating myself, I'm always reading I'm always talking to people. I'm always going in different workshops and webinars and things. So, I think that that is a good thing to do as a doula, but in terms of training, I got like I said, I can think of at least six off the top of my head right now, training programs for end-of-life doulas when I tell you this—I don't know if you're going to put this in your program—but that is about the best way that I can see to make a living at being an end of life doula is to have a training program. Because right now there are way more end-of-life doulas out in the marketplace than there is demand.

Fenton: I would imagine just people don't…not that many people might know that that service is even available. Yeah. If you're just joining us, this is Take Noteon WPSU. I'm Lindsey Whissel Fenton and our guest is Oceana Sawyer, an end-of-life doula who helps people create a conscious death experience. On your website, you write that you partner with people to “create a conscious dying roadmap that will allow them to die pleasurably.” And that's an interesting term. And, I would imagine, it means something different for each person. How do you help people define what that means for them?

Sawyer: Yeah, people get very suspicious when you start using words like pleasure and sensuality and, really, break those words down. Pleasure is simply what feels good to you. That's all. That nothing, no more mystery to it than that. But I like to use that word pleasure. Because I think it conjures an even higher order of consideration about, “Okay, I'm just, I'm what feels good in terms of not merely being comfortable. But what would actually take this experience up to a level where this really feels good, or this is really what I want to be happening now?” And this blows my mind. So how you would do that in the void space is, a lot of this is best done before a person gets to the active stage of dying. And ideally, before they even get a diagnosis. You'll see on my website that I have this service called the Best Three Months. And that is basically a process where you create—I call it a vision map—for how you want the last three months of your life to go. So that they turn out to be perhaps the best three months of your life. So, if you thought about it right now, what would feel really good, what would be pleasurable for me to have in my dying process? Well, then you have to cover in my mind things like all of your senses, and that's where the sensuality piece comes in. It's this is not sensuality, in terms of sex, it's a sensuality in terms of what feels good to you in terms of all five or six of your senses, actually. So, I hate to do the thing about the candlelight and the music and all of that because it's just so cliche. But, really, what I've seen happen is people planning their end of life, including things that are kind of very particular to them, and sometimes a kind of a surprise. Like, I did a vision map for someone who wanted to make sure that all the windows were open the entire time because why, what was important to them was fresh air for as long as they could sense it. So, okay, that's what's that's on her plan. And if I were her doula, I would look at her plan I was, I would say, “You know, you got to get these windows open, even if the family member was like, ‘it's kind of cold out there,’ I don't think so. I think, ‘Put a sweater on.’” We're hoping, you know, because that's the job of a doula is to be the advocate for the person who's dying when they can't speak for themselves.

Fenton: And, you've touched on the fact that you're, this idea of sensuality, and that you are a sensualist and that you do trainings in that area. What does that mean? What is a sensualist? And how do you get people more in touch with those experiences?

Sawyer: You know, that's almost like a whole other conversation. But basically, a sensualist is someone who is approaching life from the viewpoint of using all six of their senses, to have their life experience, in any given moment, be even better. That's all. That is what sensualist is. So, like, right now, for this conversation, I made sure that I had my favorite cup of chai made with my exactly right milk. And it's in a cup that I love, is one of my favorite cups. And I would have had candle burning. But I decided not to do the candle because really what I want it was to smell the air coming in before the snow. So, it's really about creating your own kind of ambience for your life. You know, so if your life can have more, more richness, by paying attention to your senses, then you could take that same approach to your end of life.

Fenton: I love that an “ambience for your life.” One of the many dimensions of your work is creating ritual. Why is that important, especially in the space of death?

Sawyer: Hmm, I read this thing that it was something along the lines of ritual is simply that which you have put your full attention into making special. So, a ritual could be anything by that definition. And frankly, for me, that's what it is, is simply doing whatever it is you're doing with intention and reverence. So, whether it's a smoothing out the blanket that's covering the person, and humming a tune while you're doing it, and maybe you do it slowly, and each stroke very deliberately, that is a ritual. And as you're getting into that liminal space of dying, is everything. As I said before, it's sort of like slows down and gets very quiet. So, it almost is a space that requires ritual. It's funny, because when you say that someone is dying, it does get quiet. Everyone goes, first of all, hardly anybody knows what to say. And so, in that shock of” I don't know what to do or say, then people start speaking in hushed tones. So it takes on this sort of very ritual listed kind of, on beyond things get done very deliberately at that point.

Fenton:And that quiet, I would imagine, is helpful in that holding of space. And on that context of being present and conscious. You wrote something that I love, you said that “The sensation of being with difficult emotions truly is the body at its holiest.” In that case, why do we spend so much time avoiding those harder feelings or those harder sensations?

Sawyer: Well, that's just conditioning. I mean, you know, you're a person born and raised in this society. I don't know if this is particularly true of the US, but it certainly would be true of any society that is larger Christian, I think, you know, we're very much into pain. We're so fixated on pain, that we would do almost anything to avoid pain. And avoiding pain is very different than going for something that actually feels good. Those are literally two different mechanisms. So, we're very good at avoiding pain. And we have almost no idea about how to pursue pleasure. But it turns out that, if you are willing to be with pain, someone said this in my death cafe a couple of months ago, and I thought it was just exactly the right thing, the extent to which you can be with your pain and suffering is the extent to which you can't be with joy. In other words, the joy you get to on the other side of pain of going through something hard, that joy you get to on the other side of that is so much deeper and richer than that joy you pursue, as an antidote to your pain. So, I like to say, the joy you get when you're trying, the joy your… that you think you're having while you're avoiding pain, “Oh, I’m just going to watch the, you know, the sitcom now, so I don't think about my dying mother.” That's like consuming many chips. If you actually spent time with the feeling in your body, located, “What is that feeling of my mother's dying? Where is that in my body? What does it feel like? What does it sound like? What does it taste like? What am I hearing? What is the noise I want to make in my body to move that energy?” On the other side of that is this exquisite sort of contentment. Like, “Oh, yeah, I see. This pain is my love, our shared love for each other.” And that's a rich, deep wine kind of joy.

Fenton:You mentioned, I think, just as a, as an example, the example of losing your mother, but you did lose your mother, and you have shared that you've experienced anticipatory grief with her death and knowing she was going to die and then grieving before that death actually occurred. How did that anticipatory grief show up for you and your body, which I think is something a lot of people might experience but not even have the language for the fact that that they're going through that anticipation?

Sawyer: Oh, I'm so glad you're asking this question. Because I think that's really true. What you just said, a lot of people have no idea, “Why am I confused? Why am I having trouble concentrating? Why do I just want to lay down and sleep for several hours? Why am I eating all of these all these potato chips? You know, in [inaudible] all this chocolate? Why am I eating? Or why am I not hungry?” You know, it shows up differently for different people. But the thing is, is that because the person hasn't passed, you don't have anything to hang your symptoms on. So, if the person had just died, you say, “Oh, I'm grieving.” But they haven't died yet. And yet, you are still having this complete experience of fatigue, confusion, anger, certain fragility, and so that that whole process of anticipatory grief is real, it can show up in the body in terms of aches and pains. For me, it was definitely, I could barely concentrate. I was confused. Most of the time, I didn't have much energy to do anything besides attend to my mother, my mother's health, what's going to happen after she's gone. And even that I was just kind of barely, you know, able to process. So, yeah, anticipatory grief is real. And once you acknowledge it, though, that's big, because just acknowledging, “Oh, this is grief,” then you can start taking care of yourself. First of all, you can cut yourself some slack. There's no way you're going to be able to do everything you were able to do before because that is that's just a real, psycho-emotional, bodily process. So, once you know that, then you can start taking care of yourself.

Fenton:Before we wrap up, I just want to go back to what we discussed a little earlier about this, this idea of a conscious death experience. When should people start thinking about their end of life and what their death experience will look like?

Sawyer: Now. I mean, really, it's not too soon. I don't care if you're 22 years old, it's not too soon. Because you know, for one thing, who even knows when they're going to die? You know, you have no idea. So, it's good to have even a bare minimum plan, preferably on paper, but at least communicated to someone who could execute them. [Inadubile] into how many times I've heard people say, “I don't know, do they want to be cremated or embalmed? I actually don't know we never had a conversation.” That's, to me, that's just a base. You know, talking about your death is just good. I think it's a good manners. It's just, it's just actually a friendly thing to do for your family. Because what you don't want to have is your family trying to figure it out or remember what it is they think you want, at the very moment in time, when they are not able to do that. So, here they are in shock. They're grieving. And they are asked to make these kinds of decisions that they really have no idea about. Whereas if you if you had a plan, “Oh, Lindsey, let's do the plan. That's right. It's in the top drawer of her dresser. Oh, great. Get the plan. Thank you. Okay, she wants to be she wants to be cremated good. And her ashes? She wants them to spread in the on the mountains. Super we can do that.” That's just a bare minimum.

Fenton: What are some, some basic questions or prompts to help each of us at least start to consciously plan our end?

Sawyer: Basically, how, when, where, what it is that you want to have in your end-of-life process? So, do you want to die at home? Do you want to be on life support? And there are a variety of circumstances in which you could be on life support. And you should know what those are? And be willing to say, “Yes, no, maybe” to some of those. And then in terms of a more prolonged illness, if you want to die at home, which room do you want to die in? Who do you want to be there? What clothes do you want to be wearing when you actually die? How long do you want to be at home? Do you want an in-home funeral? Or do you want to church or some other kind of funeral? What music do you want to have playing? What relationships do you want to have be straight? Oh, this is a really good one, because this is the one that almost everybody gets to the end of their life and they wish they had done this sooner and that is fix that relationship with Uncle Bob. And when you're dying, you don't have a lot of energy, you don't have a lot of time. So, it would be better to fix your relationship or get straight with Uncle Bob now. So, you want to start thinking about when, what legacy are you leaving? And what are the kinds of relationships you want to have going into your final months of life. And looking at the end of your life can have impact on your live life is actually going to make it richer, better, more fun, more life. You know, you can figure out how is it that you want to be living all the way up until you're not. And then you can do more of it once you've figured out what that is.

Fenton: Oceana, thank you so much for talking with us.

Sawyer: Thank you. I really had such a great time.

Fenton: Oceana Sawyer is an end-of-life doula. She helps people create a conscious death experience in a context of love, grace and beauty. For more on Oceana's work and for a free guided meditation that can be played during a remote vigil for someone who's dying, visit wpsu-dot-org-slash-take-note. From my home studio, I'm Lindsey Whissel Fenton, WPSU.

Lindsey Whissel Fenton, MEd, (she/her) is an Emmy award-winning filmmaker, international speaker, and grief educator. In her current role as a senior producer and director at PBS/NPR affiliate WPSU, Lindsey focuses on projects related to grief, trauma, and mental health. She is the creator of Speaking Grief and its sister-initiative, Learning Grief and serves on the board of directors for the National Alliance for Children’s Grief (NACG). A sought-after speaker on grief literacy and educational outreach strategy, Lindsey delivered a keynote at the 44th Association for Death Education and Counseling (ADEC) Conference and has presented to a variety of organizations, including NACG, American Public Television (APT), Johnson & Johnson, the PBS Annual Meeting, and Comic-Con San Diego, among others. Lindsey earned her bachelor’s degree in Cinema and Digital Arts from Point Park University and her master’s degree in Learning, Design, and Technology from Penn State. She is a dog-mom, an avid reader, and rock climber.
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