As if it were a time of war—and sometimes it feels like it—the last year and a half has carried with it the shadow of death. We watch numbers on the death toll tick up, sometimes fast, then slow, then fast again, and if you’re anything like me, you tend not to think about the individual assigned to each number, you just cross your fingers that the next one isn’t a loved one… or you.
Maybe we’ve had a long-overdue reckoning with death in this country. Or maybe it’s still ongoing. People still think COVID is no worse than the flu, and not a virus about which we are certain of relatively little, save for the fact that it has killed almost 4.5 million people worldwide.
Or, maybe not. Maybe the division that mask mandates, shutdowns and vaccinations have caused in American society are a symptom that we fear death or that we misunderstand it. Maybe the don’t-tread-over-my-dead-unvaccinated-body crowd is so fearful of death that they lash out at others and laugh in their (and death’s) faces. Maybe the folks who haven’t left their house or missed an Anderson Cooper COVID scarefest since last February are doing so because they can’t bring themselves to think of their own mortality.
Eh. The truth—with its politics, personalities and experiences—likely isn’t so easily organized. The least I can say with a modicum of confidence is that if we haven’t reached a full reckoning with death in the last 18 months, we’ve at least started to think about it. So I was curious to hear what a person who lives in death could share about the end.
“When I was a lot younger, like in my 20s and stuff, I universally thought it was a horrible thing,” says Elisabeth Almerini, an end-of-life doula in New Jersey. “It was just sad and horrible and, ‘Oh my gosh how can this happen to people?’. But gradually it did just start to seem like another part to a life. If you think about it, you can’t live forever. It’s gonna happen to everybody. It’s a normal thing and it’s still sad because they’re leaving loved ones behind but it’s not that horrible. It doesn’t have that sense of it’s a tragedy.”
Almerini has been a registered nurse and hospice care worker for 30 years. As an end-of-life doula, she helps dying people and their families through the process, to put it simply. She’s one of a handful (but growing number) of professionals in the field in New Jersey.
I chatted with Almerini recently about what it takes to become an end-of-life doula, what challenges come with the job, what dying people talk and think about, and what happens when we die (spoiler alert: the answer is not in this story).
This interview has been edited for clarity and length.
NJ INDY: So what is an end-of-life doula, how does one get certified, and how does that differ from a hospice care worker?
Elisabeth Almerini: Basically an end-of-life doula, they don’t have to be medically trained, so it’s non-medical support for a dying person and their families. There are several of us around who are also nurses but you don’t have to be. It’s an unregulated industry, much like birth doulas, so there’s no one body that has standards for what you have to do. You get certified through a couple of really good programs … basically you take a class with one of these or other groups and you are certified by them. Now since the end-of-life doula world has become the thing-du-jour there are any number of schools and things popping up including those that want to do three or four hours on a weekend and say you’re a certified end-of-life doula. It’s a little bit of a free-for-all.
NJI: And so what do you learn in one of these certification programs?
EA: Generally in an end-of-life program you talk about what happens at the end of life, like what a dying person looks like since so many of us haven’t ever been exposed to that. Death usually happens in the hospital or nursing home, so people don’t know. There’s a lot of things to learn about that process, and then also you talk about death and society and what it means, how to help people who are grieving. The loss or potential loss of loved ones and how to support caregivers. … Hospice is great, but we kind of expect family members to do a lot of the care, and that is a lot to handle for anybody. And again, hospice is great but they’re not able to be there 24 hours a day. Being an end-of-life doula, that’s an extra layer of support for people.
Also in a good doula education program, there’s a lot of talk about self-care and spirituality, whatever that means to you. But it’s really kind of hard to be present and centered in the midst of what can be chaos if you are not really well-grounded and well-connected with your own sort of spirituality, whatever that means.
NJI: Maybe this is tough to answer, but are you there more for the family or for the person passing away?
EA: I would say that of course it’s both. What I end up doing a lot of the time is working with the family and helping them know what’s normal, explaining how death works and what the various stages look like, and how to comfort their loved one. And I think that by doing that, you automatically are also helping the dying person. Mostly I’ve been engaged by families but sometimes a person who is themselves dying will call you, and I’ve had a few of those, and then you work with that person. At the very end, it really is all about supporting the family and helping them in turn to support their loved one.
NJI: You mentioned the end-of-life doula world is the ‘thing-du-jour’ at the moment. What do you mean by that, and why do you think that is?
EA: One part of me would say it’s because we’re all coming to the realization of how important a gentle passage from life is and how much it means to people, and we’re bringing that experience back home, much like people did around childbirth. They wanted to personalize the experience, so part of me says that’s what this is all about.
Another part of me says because it’s the thing-du-jour—[actress Riley Keough] became an end-of-life doula recently—there’s more press about it and more information and so people are seeing that and saying, ‘Oh wow, that’s for me.’ And some of those people, it really is for them, and some of them it’s not. They have a really romanticized view of what it’s all about.
NJI: Well, yeah, I’m thinking it could ugly between families, it may not be a peaceful passing… What are some of those things that someone might not expect that you have to deal with?
EA: The family dynamics is a huge one. A huge one. … Listen, people die the same way that they lived, and if they have lived all their lives in a family that’s a little dysfunctional and does not know how to relate to each other, you better believe that’s going to be immensely worse in the midst of a crisis.
The other thing, as much as we want to talk about death as a normal experience and the body knows what it’s doing and all of that, sometimes it can be really ugly and really messy. Now as a doula you don’t have to give physical care to people, but if you’re with a family and the dying person has kind of an unexpected bowel movement or they’re vomiting or something, obviously the family will tend to that or they won’t depending on how they are. Are you just gonna sit there and say, ‘I’m not gonna handle it’? You have to be prepared.
NJI: Families are all different, as you mentioned, and individual family members are different from each other, so I’m curious about how you might navigate different beliefs and traditions around death in a family.
EA: Generally when I’m talking to a family before I start to work with them I’ll ask them what religion they are and what their beliefs and traditions are around death and dying. And sometimes it comes up organically. I think a thing that can be really challenging is people who say they have no tradition or no particular spiritual idea of death, that are very disengaged from all of that. As far as I am concerned, whatever religion or traditions you practice, fine, I’m there to support you with that, so that has never been a problem.
NJI: You’ve been a nurse for a while, how’d you end up gravitating toward end-of-life care in the first place?
EA: Well, before I went to nursing school I worked as a nurse’s aide and the first thing I had to do, the very first thing, was they told me, ‘This lady’s dying, just go sit in a room with her.’ So I was like 19 years old, and OK here I am sitting in a room with the door closed with this dying lady and every so often a nurse would poke her head in there. But basically it was me and her. What do you do? I had no idea. I held her hand. I talked to her. I hate this term but it really works, I was just present there with her. Those things are still a lot of what I do today and kind of the core of it. To me, that was the most fulfilling thing ever, so when I finished nurse’s school I went right away to work with people with cancer, and also AIDS was just becoming a thing then. It just is one of those things that I was meant to do.
NJI: Maybe not because you’ve gotten used to it, but does it ever take a toll on you… being around death all the time?
EA: Yes, and sometimes it is very, very hard. When you have a child that you’re working with or people your own age, that is always very disconcerting. And when it is too much for me because I still work as a hospice nurse but per diem, when I get filled up and can’t take anymore, I just won’t work for a while. I’ll just go home and be with my dog and my cat and my kids and regular life for a couple weeks.
NJI: Maybe this is a sensational question, but are there things you regularly hear from people who are passing away that we, who aren’t around it, might not expect?
EA: Honestly, what I think people would find surprising is so much is just so normal. It’s the same kind of conversations that you have with people who aren’t dying maybe laced with what you would expect. Like, ‘Oh I should’ve done this,’ or, ‘Oh, I’m sorry about that.’ We call it life review when people talk about, ‘Maybe I should’ve dated that girl in eighth grade,’ those kinds of things. The theme is generally I wish I had spent more time with my loved ones. But again what’s really surprising is just how very normal of a conversation it is. I haven’t yet had somebody say to me, ‘Oh I talked to god last night and he’s standing right there.’ I’ve never had anything like that.
NJI: That life review thing, is that a sign that death is approaching?
EA: OK. The life review thing, it’s not exclusive to dying people. Any kind of huge event will kind of trigger that. People having a baby or getting married, those kinds of things, you kind of tend to look back and vow to do something different maybe. But what starts to happen as people start to die is they become much more inward focused. So a person who is a real chatty cathy and talked a lot and always had an opinion, you will notice they will be much more quiet, and they’ll tend to spend more time asleep or seeming as though they’re asleep. That’s a good sign that people are kind of working through things emotionally and spiritually.
NJI: And what’s going on in a dying person’s head when they’re doing that?
EA: I don’t really know. What I imagine is—Oh, you know what, this is another thing people will often say and you know it’s coming close: They’ll start talking about, ‘I need to catch the train,’ or, ‘The plane is leaving,’ or ‘Take me home.’ ‘I’m going to visit my mother.’ Those kinds of things, talking about a journey of some sort. ‘Oh my gosh, I lost my suitcase.’ Those things are a good sign things are getting close.
When people start to withdraw it’s like you’re going on a journey. If you’re going on vacation tomorrow, you’re going to be thinking about that. ‘Did I set the lights to go on, is my dog gonna be OK,’ you’re thinking ahead, you’re not thinking about what is happening around you because they start to matter less, because you’re not gonna be here.
NJI: Is that a result of conditioning from our culture, that people hear others say things like that about death and repeat them. Or, and here’s the million-dollar question, is there something real about that? Are they really going on a journey somewhere?
EA: That is a good question. I’m a white person and an American person. I’ve only ever been with people from this culture so I don’t know if other cultures have that, but you know, you can’t escape the fate that you’re going somewhere, wherever it is. Even if it’s going to nothingness or what, you’re not gonna be here anymore.
NJI: I’m wondering if your conversations with families and people passing away have changed since the pandemic. I think we all started to look at death more acutely over the last year and a half.
EA: Mostly I work with people who have cancer. The COVID thing has just kind of been like background noise. So the kind of conversations I’ve had about it are generally, ‘God, can you believe these people?’.
NJI: Anything else about your work you want to add?
EA: You have to have a heart for it. The thing I hate the most when people ask me what I do and I tell them, [they’ll say], ‘Oh my god, you must be an angel. I could never do that.’ You would be surprised at what you can do when you’re confronted with it. This is not a thing for the faint-hearted. You have to be very grounded, especially because you’re holding space for people who are definitely not.
NJI: It’s funny you say that, that you bristle when people call you an angel, because we all will have to deal with death at some point. I don’t want to sound too cynical, but it feels like people are ignoring the fact that they’ll have to face death in the future.
EA: It’s ignoring a whole section of life. It is pretending that there is a whole part of life that’s not even there. Now, I’m pretty sure angels don’t use the vocabulary that I use, so there’s that.
For more on Elisabeth Almerini’s work, visit gentlydying.com.