The rise of death doulas

0:02Actress, icon Nicole Kidman says she's training to be a death doula. Hot break feels good in a place like this. No, be serious. Death doulas are people who help people transition from life to whatever's next. Some of it is spiritual. Some of it is logistical. The profession is about comfort for the dying, yes, but some of it is also about the living. The director Chloe Zhao, who made Hamnet, told the New York Times that she's trained as a death doula because? Because I have been terrified of death my whole life. I still am so afraid. And because I've been so afraid, I haven't been able to live fully.

0:44Coming up on Today Explained from Vox, death doulas. They stare into the abyss and see something kind of wonderful. Stay tuned for that.

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2:15It's Today Explained. Vox's Anna North recently wrote about the rise of the death doula. And Anna says interest in the profession isn't just coming from celebrities. When I talk to death doulas about this, they really emphasize that the interest from celebrities mirrors interest that we're seeing from just the population as a whole. So there's been a rising interest in death doulas in recent years, especially kind of since the COVID-19 pandemic began when so many people were forced to encounter death kind of at the same time. Grim milestone in the pandemic. More than one million people have now died from COVID-19 in the U.S.

2:54It's a number few thought was possible when the pandemic began. You know, we've all been given a diagnosis to pause and reflect and go inward and maybe get your advanced directives in order and think about what matters. And there's also just been a real explosion of content around sort of being more open around death and dying on social media. Good evening, fellow mortal souls. My name's Tanner and I am dying. I have stage four colon cancer. I'm dying and I'm really okay with it and I really want to talk about it. So the idea of being a death doula or hiring a death doula has just become a lot more visible with people talking about it more.

3:37Hi, I'm Sarah. I am a recently certified baby death doula. We need more death doulas in society. So if you've been thinking about becoming a death doula, I honestly really recommend it. So what do they do exactly? So a death doula can do a number of things. They're not a doctor, so they're not going to be providing direct medical care, but they really are there to support in this complicated transitional period. Something a lot of folks told me is that the American health care system is set up to take care of people when they're sick. And then we have funeral homes and, you know, other types of arrangements when people have actually passed away.

4:20But there's this real gap when people are dying and there's often not a lot of assistance in terms of help, for example, helping family members contact funeral homes, helping people make arrangements to deal with someone's body, helping a person maybe decide what do they want to have happen with their remains or how do they want their life celebrated? after they die, and then really providing companionship and care. So something that Nicole Kidman actually talked about is that she and her sister both have families and careers. Obviously, Nicole Kidman's very famous. They couldn't necessarily be with their mom every second while she was dying.

5:00I love when people say, there's no limit to your grief. You don't have to have a time limit on it. You don't have to be all better by this time. So you're allowed to constantly let it pass through in waves. This is an issue for a lot of people. So a death doula can actually just sit with a dying person and that can provide a lot of comfort to really everyone involved. The sitting is the thing I would have assumed. What surprises me about what you just said is how much of this is logistics. Yeah, I mean, if you think about it, you know, if you have someone close to you that has passed away or you've been with someone trying to support them through that kind of loss, A lot of it is really boring but difficult stuff, right?

5:41There's a lot of, like, phone calls. There's a lot of, like, shutting off people's bills and utilities. There's a lot of, you know, if someone is dying in their home, their home still has to run, their household has to run, the trash has to go out, the dog has to be walked. They absolutely can be the person holding someone's hand. But there's just so much, I think, around death that we kind of don't think about until we're in that situation. and a death doula can take care of a lot of that stuff. I think a lot about birth doulas and there's like the old joke that like, you know, you don't bring a birth doula into the hospital with you because the birth doula is gonna upset the hospital staff.

6:19And this actually makes me wonder, like, if you are dying, there are some odds that you're either in a hospital or you're in a hospice, you're in end of life care. You're someplace where there are people who are trained to be helping you. What does a death doula do in like these more formal medical clinical settings? It's actually very similar to the role of a birth doula. So, you know, for example, we had a doula present for the birth of our first child. And part of her role was to know what did we want and how did we want that birth to go and to kind of help advocate for us with the medical staff in case there was any question around how things were going.

7:01They are not going to step in and try to practice medicine. But the way that one person explained it to me is that in dying, there can be a lot of space for taking some time, for asking questions, for getting options. Not everything always has to go the same way. And so a death doula can kind of be there to advocate for the dying person, to advocate for their family, and just be asking those kinds of questions to medical staff. Again, they're not supposed to be getting in a fight. I found with birth doulas, both in my experience and in my reporting, that now hospitals are a lot more comfortable with them and they're much more integrated into obstetric care.

7:42I wonder if that will happen with death doulas, too. How long have death doulas been a thing? This kind of work has been around forever. There have always been people in communities, in families, in religious traditions who sit with a dying person, right, who prepare them for religious rituals that might happen around death and dying, who come, you know, and weep with the family, right, and grieve with them, who bring food, all these kinds of supports. So it's always been a role that people take. You know, humans have always died, right? We always need that support. I think what is newer is the idea that this could be a profession or something that people might be paid to do or, you know, it might be someone that you hire, you bring in when you didn't know them beforehand.

8:28What you've been describing is something that people in families, people in communities, even friends, once upon a time would do for free, would do because, you know, it's expected. How have you thought about the fact that there is now, however small, there is an industry taking care of things that used to be assumed to be the responsibility of family and community? Absolutely. So this is something that death doulas and death workers talk about also, that people who tend to hire a professional death doula to do this work, they might be people who aren't connected any longer to the kinds of communities that historically have done this.

9:14Right. So one of the many people in America who are not religious, for example, people who live far from their families of origin, people who aren't really embedded in the kind of neighbor or friend community that might step up and offer this kind of support. and you know there is like this bowling alone aspect to it right this sense of like why do we have to pay people for this when at one time this would be something that we would all do for one another I think that is a really valid question to ask at the same time I think two things one I think that there are very specific logistical things around death in America that really might require some specific training, right?

10:05So you might be a very well-versed practitioner in your religious community and someone that is really relied upon. And at the same time, you might not know, like, all the ins and outs of filing the death certificate in the right place and getting the right funeral home. You know, like, that stuff is very complicated legally and medically. and we could talk too about whether it should be the case or whether there should be death doulas that they're paid for by the state. There's a lot of questions there. So that's one bucket, the logistics. And then I think too, with birth doulas, we talk a lot about care work and compensating care work, right?

10:45We know that birth doulas really improve birth outcomes for a lot of people. Doulas have been part of a lot of big strategies to reduce Black maternal mortality in particular. And so doulas became this linchpin of maternity care that we kind of all rely on. And if they're going to be that important, we should pay them, right? We should recognize that this is care labor. And I just wonder, are we going to have these same conversations around death? Do we need to say, like, this care is having a real value and we need to make sure we're supporting the people who are giving it. I think these are all like complicated questions when you get into these life transitional periods.

11:34That was Vox's Anna North. Coming up, a death doula speaks. I always joke like, oh, I'm great at parties because sometimes I'll just say things to people like, oh, God.

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15:14Today Explained, we're back with Jane K. Callahan. Jane's a death doula in Durham, North Carolina. She came to this line of work after losing her mom at the age of 27 and feeling like the whole process had just been wrong. I didn't understand what was happening to my mother's body because I had no knowledge of how the body dies. It was hard to get a direct answer from a doctor. In fact, no one told me until towards the end that she was dying. I was waiting for her to be discharged. And I kind of sat with that for a couple of years, and eventually I got pregnant and I had my son. And when I gave birth to my son, I did not have a birth doula.

15:53I didn't really understand what that was. A lot of things went wrong. And so I started researching birth doulas and realized that would have really helped. And that's how I found out that there's death doulas, which is based on the birth doula model. And I realized those were all the things that were missing in the last two weeks of my mother's life. And so I attended a training and I started volunteering with hospice and I've been doing that for eight years. My dad passed when I was 30 and I have very aggressively refused to think about death ever since. It's interesting to hear that your mom's passing was the thing that made you lean in.

16:30Do you think that you are more comfortable with death than most people? I think I've gotten comfortable with being uncomfortable. which is really the main skill of being a doula. You know, we're not untouched by the work we do. I have moments where losing someone I've worked with is very hard and watching them suffer and die is very hard. But you start to accept the reality of it through learning how to sit with discomfort. Do you think that being in close proximity to death changes the way you think about being alive? Absolutely. So in Bhutanese culture, they're encouraged to think about death five times a day.

17:10Wow. Now, do I think it's mentally healthy to just spend your entire day every day thinking about death? No, that's not healthy. It's also not really possible. But I think being consistently aware of the fact that we're not here for very long and that it can end at any time, today even, makes you appreciate what you have. And since I've started doing this work, I have found myself being a lot more present in my everyday life and appreciating small things. Definitely more gratitude and more awareness. I think that one of the things, one of the many things that freaks us out about death is the finality of it.

17:47The sense that like, oh, I will never see this person again. And I wonder whether, and I've often wondered this about people who deal with death a lot. But I wonder whether you have ideas about where we go after we die, if there's something in there that you find comforting. So, yes, but I will say as a disclaimer, doulas are trained not to answer that question. Really? When a client asks you, do you believe in an afterlife? You should really reflect it back on them and say, why is that important to you? Because when someone is scared and unsure, you know, maybe even desperate, they see doulas as a guide and your answer has an influence.

18:31And doulas are not meant to influence people. Doulas are meant to facilitate what someone wants. And so by sharing my opinion directly with a client about what I believe, there's potential there to influence them and their journey towards the end of life. And so I try to steer the conversation away from my beliefs because really what I'm there for is them and their beliefs and their values and goals. But I will say before I started this work, I was a hardcore atheist. I am not anymore. I'm not going to pretend I have any idea what happens. But I've seen enough in the dying process and in death itself that there's something I just can't put my finger on.

19:11But I just cannot say that there's nothing. what is it that's making you think that? You know, when someone is in what we call active dying, which, by the way, can last up to two weeks. It's not like we close our eyes and die suddenly. Dying can be a long process. The person looks different. It's the same person. Their body is still working to a different degree, obviously, but something looks different. Something feels different. And there's a point where someone loses consciousness and you can just feel, and I know this is not very scientific, but you can just feel like they're halfway somewhere else.

19:52And right before the moment of death, there's almost like a brightening of the person, kind of like this clarity and appearance is the best way I could explain it. I don't want to say glowing, but you know, when you see someone who's in love and they just look different, Kind of like that. And after they die, in those minutes, their face has not changed at all. They've just died. But something looks and feels different. I think there's always going to be a fear if the light switch turns off and there's nothing. But I see that as kind of a win-win situation. Because if there's nothing, then I'm not going to know what I'm missing.

20:35And if there's something, then great. What's it like to get trained as a deaf doula? Do you end up with like a certificate or a degree? There's pros and cons to that. Right now there is no national standard. There are not even state standards for deaf doula work. And there is no formal or formally recognized licensure. That's part of why we're not reimbursed right now. What you're seeing is you have a couple of major player organizations who offer trainings across the country. And then increasingly, you're seeing a lot of death doula schools pop up online. These courses vary in their content and their quality and in how much they cost.

21:14Every curriculum has its own content. There are things some curriculums touch on that others may not. Some people will take the training and immediately market themselves as doulas to their community. But there's no clear pathway to, you know, hands-on mentorship or apprenticeship or anything like that. Can you tell me about someone that you've worked with, someone who sort of stands out in your mind? Oh, sure. Well, I've been doing this for eight years, so a lot of people. I think, you know, there was one family that I learned a lot from, and that's primarily because they engaged me early enough, which is not as common.

21:56It was two adult children, and they reached out to me. Their mother had terminal cancer. She was still being treated with chemo. She had some other health issues, and her teams were not speaking to each other. She was low income, and there was issues with her housing. There was issues with her being able to get transportation to her chemo appointments. Both of her adult children were working full time. One was dipping into the 401k to pay for mom's care. Another one took a second job driving Uber at night to pay for mom's care. And there was tension within the family. And so we come in and as doulas, we can do kind of some of the logistical stuff, right?

22:41Do you have your advanced directives? And then we worked on logistical issues like how let's find ways for you to get transportation to your appointments. Once she enrolled in hospice, and this is a very common misunderstanding with families, most people get home hospice, which means they die in their own homes and the hospice team comes to them. Many people think that that means 24-7 care. It does not. A nurse will come to your house towards the end, one hour a day. The other 23 hours are on the family. Who have no caregiver training. and if they don't have money for that, then there's a problem.

23:21So working through those kinds of challenges and then also creating a sort of what we call a vigil plan or a death plan. I talked to the dying woman about what kind of environment she would want. Well, I love country music, so we made sure we had her favorite country musicians playing, any kind of scents, you know, like a rose candle. She wanted fuzzy socks and a fuzzy blanket because she really liked that feeling for her comfort. You know, we talk about, do you want to be touched? Yes, hold my hand, but don't touch my feet. Some people want all their friends and family coming and going and laughing and telling stories and looking at photos, whereas other people, you know, like this woman who said, I want my dignity, and when I start dying, going into active dying, I really just want these couple of people around me.

24:09I don't want anyone else coming in and out. And so it's really about giving what control is left in these situations to the dying person. And it's also about avoiding panic and chaos by thinking ahead and talking these things through. And, you know, if I'm having a conversation with you, then you've never died before. So you may not know what to think about and what to ask, right? You don't know what you don't know. And doulas who have that kind of experience know how to help you think about planning for the most peaceful death possible. It's so cool how much you learn about people. Like I was thinking about what you said.

24:51Some people want everybody coming in and out and like talking and laughing and other people are, I imagine, find that exhausting. I don't know. It's just, it must, people are very different in life. And it is just so cool to hear you talk about how different people are in death as well, you know? Yeah, I have my whole death plan. Like, I want lots of plants around me because I like plants. And then, you know, have you ever been really sick with, like, the flu or cold and you wake up in the middle of the night and, like, there's no sense of time and it's just horrible? Yep. Well, I want to have Christmas lights so that, because those, I associate those with comfort and coziness.