A Sweet Conversation About Dying with Death Doula Alua Arthur

0:00What is the most interesting secret or story you've ever heard somebody tell you on their deathbed? I've heard so many secrets. Oh, tell one. What's your favorite? Come on, come on. About the kids. About mistresses. Other families. Other families. There's so many other families. So many other families. And I think the 23andMe and Ancestry.com and all those places, we're about to find a whole lot of families. That's right. It's all coming up. Yeah. Nobody's dying with secrets anymore. Let's talk about death. Dying. Being dead. Those words are so jarring, literally just hearing them make many of us squirm.

0:40It's such a morbid conversation, who wants to have it? Or maybe we're thinking about it the wrong way. That's where A. Lua Arthur comes in. She's flipping the script. She's a New York Times bestselling author and one of the leading death doulas. Like a doula helps some people prepare for birth, death doulas help other people navigate life's final chapter with clarity and grace. But for those of us who aren't currently in the process of dying and aren't navigating grief, thinking about death may actually be the best hack to focus on life. This is a bit of optimism.

1:24so I'm always fascinated by people's career paths right doctors and lawyers tend to know pretty young that they're going to be a doctrinal lawyer because you have to make a decision you know pretty young to start going through that amount of schooling etc and I have to believe that being a death doula wasn't like your childhood dreams you weren't helping your teddy bear take their final breaths. I'm so curious how someone finds themselves doing this. It was a sharp right turn. I was a lawyer. I started out on the path of lawyer. So I did all the schooling and took the bar and started practicing and was not having a good time.

2:00It was not working for me. It wasn't a fit. And I also just felt frustrated and still do that. We ask young people to choose their profession so early in their lives, you know, and like commit to something, something with the big financial responsibility of law I'll school up with that as a side. But I was a lawyer, and then life came and worked its magic on me, and grief worked its magic on me, and here we are practicing death work instead. So did you start in grief work and find yourself to death work, or do you talk about them as that one thing? To me, they're inexorably linked. You know, they belong together.

2:31They can be separate, though, because grief doesn't exist only with death, but, you know, it's like an open marriage where death is married to grief and monogamous with grief, but grief is super polyamorous and goes wherever it wants to. So when talking about death, I can't help but talk about grief, but I'm mostly talking about it. But the way you got in, what was the chicken, what was the egg? I guess that doesn't help resolve the problem because that's actually a debate. But in the actual way and thick way things worked out, what happened? What happened that you're doing what you're doing now?

3:03I didn't even know death doula was a thing. It's super a thing. so I was practicing law at legal aid I got really burnt out absolutely depressed and like a clinical depression and I took a leave of absence where I went to Cuba and I met a young fellow fellow traveler on the bus we started talking a lot about her life and we started talking about death she was traveling because she wanted to see the top six places in the world before she died because she had uterine cancer and so that initial spark was like oh wait hold on a minute people die and I've been privileged enough in my life not to have known anybody who died all my grandparents were dead by the time I was of age.

3:38So nobody close to me had died. I hadn't had that experience yet. And I was really fascinated that she was looking at the end of her life, or at least contemplating it. So we talked a lot about her relationship to her death. I asked her a lot about her life and what meaning it had and what she'd made of it thus far. And it helped me look at my own life through some lens that I hadn't previously considered. And that lens helped me see that I did not like the life that I was living. Like it wasn't what I wanted out of my life, you know? So I on the bus was like, well, shoot, if we can talk about this and it can create purpose for people like it did for me during that very brief exchange that we had about our mortality.

4:17Well, it was 14 hours. It wasn't brief. But in that one moment of time, then it held so much. It held so much weight for me. And so I started really leaning into that for myself. When I came back from Cuba, my brother in law became sick. my older sister's husband. His name was Peter St. John. And I got to journey with him through the last two months of his life really, really closely. And I saw how isolating it is to be dying to be in the system and not have the support there that we needed. You know, there were plenty of doctors, there were plenty of medical folks, but there wasn't somebody just to hold our hearts and to, you know, remind us that it was hard and to offer resources and a kind word and a listening heart.

5:00There was nobody like that. And so I really decided that I wanted to do that for other people. So grief came first in the way that I was grieving deeply. I was grieving my brother-in-law, but I was also grieving a system that I didn't feel cared for the people within it. And so grief pushed me into death work ultimately. So the job that you described, or the role that you played, I should say, you know, with your brother-in-law, I mean, you were the sister-in-law. So you were family sitting by his side as the doctors and everybody came in and through. And I think perhaps the reason that the concept of a death doula is not on the tip of everyone's tongue is because I guess there's an expectation that that's what the family does.

5:39Yeah, it's kind of what the family does, but we're also so deeply emotionally entrenched in what's happening that it's hard to pull back. It's hard to take my feelings out of it and be able to show up for the dying person the way that they need to. The death doula is somebody who sits on the outside of the circle of support. Sometimes it's family, but not everybody has a family around. So it could just be, you know, folks that love the person or their chosen families that are around. And so the doula is kind of the person that sits on the outer rung, kind of holding everybody else up and holding the whole thing together.

6:10There are, there's a number of things that death doulas do that family members, I think, don't know how to do or wouldn't even know where to begin. And that's where I found myself with Peter often. Like, how do we do this thing? Is this the thing we should be considering? I wish that there was so much more we'd known at the time. His death would have looked a little different. For example, so what was missing when Peter died that you wished you knew or had been there? I wish somebody had said very clearly to us that he was dying. That didn't happen. It was more that they couldn't treat him anymore.

6:40That's what I would say. May I ask, what was it that ultimately caused his death? Burkitt's lymphoma. Okay. So nobody said he's going to die. They said this is no longer treatable. They said we can't treat him anymore. They spoke in euphemisms to avoid the D word. Everybody danced around it. The palliative care team came in. They would like nod and smile slowly when it was clear that something was happening when he was not responding anymore. A plus B equals C. You know, he has an incurable illness. They cannot treat him anymore. He's going to die. But I did that. You know, I did that in my own brain, in my own body.

7:15And it was really, really difficult to take in because it was also the unimaginable. And I think anybody who's been in this situation understands when it's somebody close to you and they're getting close to the end, it's like this can't be it. Like this cannot possibly be it. And so aside from just somebody saying very clearly, hey, it looks like he's dying, they could have helped us find ways to engage my four-year-old niece at the time into his death. You know, we didn't have support for that properly. Nobody explained what the death rally was, which is something that I noticed in Peter and I've seen many times before and many times since in my work.

7:50Nobody explained how we could find certain hospital gowns that closed in the front because he had all these sores on his back or getting him up to change the gowns was difficult. Getting his will in order, trying to figure out what he wanted to do with his cremains. Like there were so many items that I wish that we'd known beforehand. What's a death rally? A death rally is often a surge of energy nearing the end of life that often looks like the miracle that people have been waiting for. But in fact, it's a sign that life will soon reach its end. I think it may be the body shedding off the last little bit of life force energy, but the person often starts behaving like they did before.

8:29Maybe they're making jokes or asking for food or asking to see certain people. they look a little bit more robust than they have and typically happens right before the person begins to actively die. Do the doctors and the palliative care specialists, are they avoiding the D word because there's some weird stigma? Is the word death or die, is it too aggressive? Because we do, we do, at least in the West, you know, we speak, we speak around it, right? Like, I'm sorry, I'm sorry for your, for your father's passing, you know, what happened to your, your, you know, your brother-in-law, he's no longer with us.

9:06We don't like the D word. We don't say, oh yeah, he died a bunch of years ago. Or yeah, he's dead. You know, it is a very sudden, even the D, it's a hard consonant, right? It's an aggressive word. Totally. So I, you know, why is it that even medical professionals are so afraid of using that word? Is it because they've triggered families before and they've just learned over time not to use the word? I think there's a lot of different reasons for it. That may be part of it. Because you don't call yourself an end-of-life doula. No, I don't. It's a death doula. Yeah, I don't. There are many that call themselves end-of-life doulas or end-of-life specialists or practitioners.

9:41Right, right, right. But I'm kind of a straight shooter. What you see is what you get, and people die. It is a big word, one syllable that lands like an anvil. But it holds a lot of truths that many of us seek to avoid. And I think doctors and medical professionals are also human. You know, I think that on some level there isn't enough training in hospitals or training in medical school about dealing with people nearing the end of life. I think that oftentimes folks want to have saved the person. They want the medicine to work and maybe it feels like a failure of some sort. I think as long as we think of death as the opposite of health or we think of death as a failure in some way, the folks that are meant to cure folks will always have a hard time with it.

10:23But then also societally, we shy away from it, like you were saying. We speak in euphemism about it. Passed away. Somebody lost somebody. One of the times recently somebody said that to me, not in the context of work, so I did not have my death doula hat on, but she said she lost someone, and I thought she couldn't find her. I didn't realize she meant she died. It's tricky. I wish that we would be a lot more straight about it. I wonder if we're all overly sensitive because we don't want to offend the people we're talking to or is that we're offended by the word I think we're offended by the word are we tiptoeing around a sensitive subject and being overly cautious it's like a weird end of life political correctness we're all tiptoeing around for fear of offending somebody so we go the most sort of euphemistic way when in reality if you just say what it is everybody's actually okay with it And much better with it, in fact, if you just say what it is.

11:18Now, I've noticed that sometimes it takes family members or the people close to the person that died a while to come around to it because it is so final. It sounds so final. And yet we, I think, do everybody a favor when we just call it plainly for what it is. You know, when we speak in euphemisms, we also run the risk of continuing to pass on our death avoidance and our death phobia in culture, particularly when talking to children. There was a guy I talked to not that long ago who told me that when his grandmother died, they told him that grandma had gone to sleep. He was terrified to sleep for years.

11:50He was seven when she died, terrified to go to sleep because he thought he wouldn't come back either. Thereby reinforcing the idea that it's something that we don't talk about, something that we don't address, something that we put over there. We don't say somebody died. We say they went to heaven or they went away for a long time. You won't be seeing her anymore. We cause more confusion and we reiterate death phobia in our culture. It's so interesting, especially when it comes to children, right? You're so right because we don't upset the child and yet you can watch cartoons from the 50s like Bambi.

12:24It's wild. And there's death all over these cartoons. Everywhere. These are for little children and none of them, you know, I don't think anybody would say that a Walt Disney film caused some sort of lifelong trauma. Yeah, but like I cried big grown-up tears at Moana very recently when the grandmother died. Spoiler alert. But children are watching these films and they have their own relationship with death and grief and loss, either through the films or in their own lives or their grandparents die or their parents die or their siblings. Like they know the experience. And yet adults, we try to shield them from it.

13:01I'm using air quotes, but they know it. And when we don't address it, it creates a strange cognitive dissonance. It also sends forward the message that it's not okay. Whereas it's just a part of the cycle of life. You know, we all are part of the cycle. We all will meet our end at some point. Are you afraid of death? I wouldn't say afraid. I'm curious about it. I'm very curious about it. Like if you're on a plane and there's really bad turbulence. you know do you have fear of death like fear of dying you know or you're totally relaxed and you're like well this is my time this is my time i feel more like if it's my time it's my time but i've also spent a lot of time thinking about my death and preparing for my mortality you know but there are things that still make me a little uncomfortable about it i am so deeply in love right now and it would i would really really really like to see elderhood with this man and i think about him dying and it makes me want to cry.

13:54So sometimes I fear death lives in somebody else. I'm maybe not afraid of my own mortality that way. I would love to see elderhood with him, but also I don't want him to die either. That's the fear of death that's showing its head. Who hires you? Does the family hire you or does the person dying hire you? Does the hospital hire you? It depends. Never a hospital or at least not yet, but often the family members or the circle of support or the person themselves because sometimes we're not there for the person that's dying. Sometimes we're there for the circle of support. Like they need an additional hand or they need some information or some comprehensive end of life planning.

14:32I also want to be clear that death doulas work with anybody who has some recognition of their mortality, which means that when somebody is still healthy, we can help them complete comprehensive end of life plans. So we can help folks think through their end of life plans, think through their fears of death, think through their death avoidance when they're still healthy and they're not yet looking at the end of their life. It's such a good point, right? Because I think we all know that we're supposed to, whether we do or not, you've got to have your will, you've got to have your living will, you know, you have to make your estate in order, make sure somebody knows where all the paperwork is, where the bank account numbers are, insurance policies.

15:06You're good. Like it's, I mean, no, I know the stuff. As you get older and you sort of reach a middle age, you're like, I got to do this, you know and somebody will say to you like i just finished my living will did you simon did you do yours i'm like i gotta do it damn it you know and like you know because we don't think of about our mortality when we're younger of course it's basically mostly financial it is helping our loved ones be prepared or be you know there's insurance policies for example to make sure that they're taken care of etc but none of us think about the emotional care we think of the financial care like you know people have insurance policies so that their spouses will be taken care of after am I dying?

15:45My kids, you pay the mortgage. But none of us think about they're going to go through freaking hell, emotional awfulness when this happens. I'm going to also have a plan for them, maybe for myself, but at least for them. It's so interesting that death is a financial thought. Yeah. And we've completely neglect the emotional components to help our family grieve our loss. Yeah. That's an absolute mirror about the capitalistic society that we live in. It shows us where our values lie. What society does it well? Many of them do. I think a lot of societies don't really focus on the financials, but they focus on the community event of it.

16:26You know, dying is a it's a social event. It's not a medical one. It's not a financial one. It does trigger a lot of financial responsibilities and conversations, but it's a social event. It's a community event. And there are a lot of places that treat it as such, which is part of the reason why a death do in today's day and age. in this society, a Western society, seems interesting or strange. But it's a role that has been inhabited since time immemorial because since humans have been alive, humans have been dying. And other humans have been supporting them through it. Literally. Literally. And other humans have been there for them.

16:59It just seems strange now maybe because we live in these individual pods where the nuclear family is the center and I am the center of the universe and my life matters and I, I, I, I, I. such that I forget about all those around me whose lives will continue after I die, who I would like to take care of in my dying as well, who are going to be taking care of me. One of the things that I find also fascinating about the concept of death, and I studied anthropology in college, and a universal is ceremonial burial. That every culture in the entire world, everywhere, big or small, there's ceremonial burial.

17:36And when anthropologists go back and look at sort of early bones of early Homo sapiens, like they're amazed that they find ceremonial burial like it's a thing and i wonder if that you called dying a community event that the concept of the ceremonial burial is sort of the community death doula-ing if you will and to your point which is the decline in sort of ceremonial anything you know we we ship ourselves off to the cities and leave our families far behind that i wonder if the need for a death doula is is a very modern construction because we aren't so community-less in this modern day and age.

18:13I absolutely agree with you that that role used to be inhabited by a member of the community. There was somebody that the people knew that when the dying is happening, you call them over and they come and support. There are still some cultures and some religions that hold on to those. There's a Shevra Kadisha within Judaism. They're the folks that you call when the dying has occurred and they prepare the body. And there's ritual written into the religion about how to grieve afterward, but it's written into it. So everybody knows that's what you do. But in the absence of culture that dictates that, then what do we do?

18:45You know, what we do is that we ship it off to hospitals. People are dying in very sterile environments, not in the way that they want, not in the way that their whole humanity is being cared for. And then we pass on their money and we don't, we give them three days off for bereavement leave for their grief. And we don't give them any time to be with this massive offense that is. I mean, I know I really want to talk about living in just a second, but I'm really just so fascinated by this, which is, if you think about it, when a couple gets pregnant, right, when someone gets pregnant, there is thought put to how I want to have my baby.

19:16Yeah. Do you want to do natural childbirth? Do you want an epidural? Do you want to be in a tub of water? Like, where do you want to be? Do you want to be in a home? Do you want to be in your hospital? Like, do you want a C-section? Like, what are the medical considerations? Like, there's lots of thought in how to bring a child into this world, and so little thought about how I would like to leave this world. I've never thought about it. I've never thought about it. Here we are. Now's the time to think about it. Now's the time to think about it. Okay, let's talk about living. How did you change how you live your life as a result of this experience?

19:45And take me on the journey, which is, what changes did you make right after that bus ride in Cuba? So in the very short term, before you decided to go do the work, how did you start living your life differently? Well, I also took that invitation to start living like I was dying, essentially. I was still, I was under a leave of absence at work, but when I came back, I extended that leave of absence a little bit longer because I thought that I need a little bit more time to decide what direction I want to take my life in, and I'm glad I did. I applied immediately for a graduate degree program in death and spirituality because I thought maybe I want to be a therapist and sit and talk to people that were dying, so I started making the changes.

20:24I downsized my apartment because I knew I wouldn't be able to afford it anymore given that I wasn't collecting my salary at the rate that I was. I made changes in my own life. But since then, so much has changed. Not only did I not go back to the practice of law in any capacity, and I built a business and a career around supporting people when they're dying, I also think I speak a little bit more clearly about how I feel. I brush up against my vulnerability a lot more often. The idea of individualism seems to be fading in me that I'm more comfortable being needed and needing people in my life because I see how communal our lives are and can be and I want that for myself but you know this idea of individualism has us say that we can do everything on our own.

21:10I also I eat more delicious foods I'm not as concerned with my weight if we're going to be silly about it like I eat whatever I want because this life is short and I want to use my taste buds as long as I've got them. And I love french fries and cake, so I'm trying to get them all I can. Yes, and. But if you eat too many french fries and too much cake, that day comes a little sooner. Yeah. Theoretically. Theoretically. Because I don't know. Tomorrow could be it. And if it is, I really hope I had a french fry. And also, as I'm going about eating my cake and my french fries, at some point I also want some kale and spinach, all right?

21:45Like, I don't just want that. When I eat a little bit of it, I satisfy. Then I want to eat something else. I want to nourish my body. Because you don't want to have diabetes along the way either. That's not funny either. And I also really like squats. Like I like squatting. I like muscles. I like exercise. And so I do that plenty as well. What do you think about the obsession right now of longevity? I live in California, so everybody's in some sort of supplement, something or other. And you ask them the reason why you're doing this, and longevity is the answer they give you. I'm curious your thoughts.

22:13Is it fear of death? Is it a good thing? I think it's death denial at its core. I think we live in a highly death avoidant death phobic culture. And that tells you that if you pop enough supplements and you drink enough baby's blood, you'll live till 117. But why do you want to live till 117 anyway? You know, what is it that we're trying to avoid by wanting to live for forever? And what are you doing with that extra time that you wouldn't do now with the finite time that you have? That's such a great point, which is I'm taking all these vitamins and doing all these things and spending hours a day to prolong longevity.

22:48For what? For what? You know what's the equivalent of? It's the same mentality of I'm going to make a lot of money so that I can give to charity later. Same mentality. Why not just give to charity now and give to charity later also? With what you got. Yeah, start with what you got. And none of us know how much time we have. You know what I mean? I could live to 104 anyway, but I could also, tomorrow could be it. And if that's the case, then why not live my life right now with the fullness that I can while I'm still here. What's the youngest person you've helped die? Well, I supported a family when their newborn died.

23:26Okay. And what's the oldest? She took like three breaths. Probably about 95. 95. So what have you learned from the people who, and a newborn doesn't help me with my argument here, but like somebody who's in their 40s or 50s, right? So we would say they've died young, right? Yeah. Relative to the national averages versus somebody who lives way beyond the national averages, 80s, 90s, right? Have you noticed any patterns in how the older ones have lived their lives? What is their attitude to life? How have they lived their life that you can perceive that they have lived longer than everybody else?

24:10Can I tell you a story? Yeah. A client of mine, one of my absolute favorites, although they're all my favorites, so don't tell anybody I said this. One of my favorite clients, Miss Bobby, she was about 95 when she died. And in the time that I sat with her, she told me all these stories of her life, you know, about how she was the first black woman to integrate multiple neighborhoods in Los Angeles. She was a traveling nurse that traveled abroad and saw the French roles in France. And so she swears she was the one to bring it to America. she chased off lovers with guns a cheating husband with a gun she threw newspapers at nosy neighbors she did a big life while she was here okay nearing the end of her life I asked her if looking back on any of it made any sense or anything like that and she responded to me in a super husky gravelly voice because she's also smoked like packs a day and drank a bunch of whiskey while she was living I think it was cognac actually she drank a lot of cognac and she said first of all none of it made any sense but it was one hell of a ride to me the the indication of the like how people approach their dying is based on how they view their lives themselves you know if i'm spending my whole life resisting my death it's not gonna be one hell of a ride but if i can just sink into it for what it is utter miracle it is the joy the benefit of being able to eat food and travel places and meet people and and like be here for the times that i'm here then I think they reached the end feeling like okay that was all right and I noticed that same attitude in the younger folks there was a woman I supported who was about 26 27 who also was like so so joyful she did not want to die young air quotes she didn't want to die young but there she was and she embraced it with um with a wisdom that a lot of older people didn't have that I certainly didn't have it even at the time that I got to support her she had she had enjoyed her life for the time that she was present in it and I think that's what we can all take away from it is to be here it's like it never it never made sense to me why you know people would save their money to go on you know like you see the retirees who go on these incredible world tours that they've been saving up for for 30 40 50 years yeah and I always think why not just take a small trip every year, you know, as opposed to the grand tour near the end.