When You Die
Podcast with Jill Schock
Johanna J. Lunn: With me today is Jill Schock, founder of Death Doula LA, or DDLA for short. She’s a Los Angeles native with over a decade of experience in end-of-life care. As an experienced professional, Jill acts as a navigator and advocate for the dying and their loved ones. DDLA offers a wide range of services from pre-planning to after death care and home viewing celebrations.
Jill received a master’s degree in Ethics and Theology from Vanderbilt University’s Divinity School, and was trained and certified as a Clinical Chaplain, or Spiritual Counselor. She has been featured in Wired, Goop, PureWow, Mind, Body, and Soul, and most recently in my documentary film, In the Realm of Death and Dreaming. Jill can be found at deathdoula.com.
Welcome, Jill. I am so glad you could join me. I’m going to just dive right into it and say, holy cow! We’ve been in a pandemic, and if death hasn’t been front and centre for the past 18, 19 months, I don’t think it ever would be. How do you see the pandemic changing death care and overall awareness, really, of death doulas and preparing for death?
Jill Schock: So, I’ll just walk through how I experienced it as a doula from the start. I’m living in Los Angeles. It started to hit New York first, which made a lot of Angelenos turn their heads and start thinking, “Oh boy, we’d better buckle up. This is definitely coming.”
Even though I am Death Doula LA, I got a lot of calls initially from New York, from people who were getting calls from desperate health care workers who now had a dead person, and they’re looking for the next of kin and somebody to claim the body and make funeral arrangements. When it first hit, it was pure crisis management from anywhere in the country, but New York was really impacted. For whatever reason, I had a flock of New Yorkers come and ask for help. It was difficult because of the backup that the funeral homes were experiencing and the health care workers adjusting to the amount of death and dying that they were encountering at every hour of every day. For the first, I don’t know, two months, maybe, it was just pure crisis.
And then, when things started to calm down, then, I think, the general idea that death on a massive scale would be affecting us for the foreseeable future started to sink in, and then things started to shift toward the attitude of awareness, but also to a willingness to now engage and be prepared. Then I saw a wave of people of all ages looking to at least get their advanced health care directives done or have the conversation of, “What if this happens to me,” with their loved ones.
So, it was a crisis, and then the cracking open to the thoughts around our mortality in general.
JL: Wow. So, you’ve been very busy, it sounds like.
JS: I have. It’s reactionary busy, you know. I didn’t plan to be on Zoom helping people all over the country. My plan was to be able to be a local resource because you think you can do more that way. The shift to the digital support has been interesting and different. I welcome everybody’s engagement with mortality, and I certainly welcome the advanced care planning, because that’s a message that I’ve been pushing all along, that you don’t want to get caught unprepared. That was very helpful.
Now I’m dealing with what I think is a third wave of the pandemic. How it’s been affecting my practice as a death worker, or a doula, is that the hospital completely got it, and is backed up. All the systems that we go to aren’t functioning the same way. Not even at all how they were before. The amount of people coming in needing help is huge.
What we’re seeing is that people didn’t go in for their yearly check-ups, and suddenly it’s turning into cancer. We’re seeing a lot of cancer. Also, a lot of care for healthcare workers. The first COVID generation of health care workers and funeral professionals, are burned out seeing this all day, every day, and there is a tremendous subconscious amassing of the amount of death that they’ve seen. They’ve needed a lot of care, so I’ve been doing support for health care and funeral professionals dealing with this. Also, I’ve taken on a ton more cancer situations.
My practice has been robust because there was a period of time when hospice wasn’t coming as often, so that was a gap that I could fill, providing digital support or dropping off meals. Just things like that to fill in all the gaps that I could wherever I could.
JL: That sounds overwhelming.
JS: Yeah! It’s go time. I’ve been working in the death care space since 2009. I’m a chaplain. This is kind of what I’m built for, managing what happens when life is interrupted by something. COVID has been one of the biggest life interrupters I’ve ever – most of us have ever – seen.
JL: Right, right. So, self-care is incredibly important. What kind of advice do you give the other nurses and health care workers? You know, you’re filling in a lot of gaps here. You’re a chaplain, so you’ve got to be offering advice. What do you say?
JS: I’m just honest with people about how it’s been hard, even for me, to care for myself. Self-care, I really believe, is so personal and so private. What works for me isn’t going to work for you or for my partner or my friends or my fellow death-care workers, right?
Right before the pandemic, I started going into stand-up comedy quite a bit because the laughter connection was really helping me. It was almost like crying, but better. I was still getting to places; I was really connecting with laughter. I did connect with a lot of comedy to do self-care.
My partner and I picked up the practice of surfing which I’d done when I was younger but didn’t treat it like a meditative practice. Being in the ocean, watching the ocean, being a part of the ocean, playing in the ocean. That really grounded me a lot, as well.
My colleagues and I experienced a lot of fatigue. I can definitely say that there were days when I just needed to lie down the whole day and not be able to take on anything. I think that’s hard when you’re a caregiver by nature, and I think that’s where a lot of people don’t know, is it okay to rest? Can I rest? All of this is going on. I have the tools to help, but I also need time to rest. It’s kind of a balance. I don’t have any advice other than it’s been an ever-evolving process. I’ve been surprised with the way that it’s gone. Taking up surfing has been so amazing and so brutal [laughter]. But I didn’t see that coming. I needed something extreme to balance the emotions.
You never know what shape it’s going to take, but I think you just have to be honest with yourself, if you can’t take it anymore. Like, when you hit a wall and you’re thinking, “I can’t look at one more person die or I’m going to completely fall apart.” I would say your body is telling you that, or if it’s knocking you down with fatigue or autoimmune responses. I don’t know. Anything, really. Just listen to your body and try to take an authentic break, whatever that looks like for you.
JL: Good advice. I know that education has been an important part of your mandate as a doula, and I’m wondering, maybe it’s too soon to tell, but I’m wondering, the culture that we’re in is really changed. Do you think that more people are seeking out advance directives, more people reaching out for, “What do I want?” and having those kinds of conversations? Do you think there’s a little more critical mass happening around all of that?
JS: Yeah, I do see a lot more critical mass. Again, that thought everybody’s probably thought by now, what if this happens to me? I hope that people take that a step further and say, okay, well what if it does. Because it’s possible. We’re all human and this is a crazy virus, ever evolving. So, write it down. Tell your significant other, tell your loved ones what you want so that if the crisis does happen, it doesn’t turn into a mega crisis because it just starts to impact everyone. Once the crisis is happening and you don’t know what the human, who can’t now speak for themself, wants, then it just doubles down on everybody else and they don’t know if they’re doing the right thing.
They may have not even encountered a death before in their life, that’s another thing. There are generations where they lost their young parents. Encountering death way before they typically would. The top generation being separated from their kids and not being able to be visited. God, the amount of loneliness! And it’s not just elderly people. We’re all lonely at this point.
Loneliness is a contributor to quality of life. I saw a lot of that. The stress level, generally, in the world is really high. Stress isn’t good for our bodies or our minds, so there’s been a lot of wear and tear, which is why I’m seeing, again, a lot of cancer, a lot of illness that’s been popping up. It’s affecting a younger population, which means even the generation below them, the ones who are maybe the most disconnected because they were born into the world of technology. I’m not sure about the levels of generations and the labels that they’re taking on, but you know what I’m talking about: the ones that are born with an iPad in front of them. They have the perfect excuse to be disconnected from thinking about mortality, and they also didn’t even grow up with any kind of spiritual practices.
This is a conversation I had with the Dean of Religious Life at the University of Southern California, Varun Soni. I’m not taking full credit for this conversation because I was listening to his observations of this younger generation, but now seeing them reconnect and understand mortality because the younger people are dying. It’s not just grandma and grandpa who are expected to die, but parents and, potentially, aunts, uncles, people around them. Overall, I think we are all getting back into the real world and seeing this very real, human-on-human, mortal connection.
JL: I guess, in a strange way, as painful and tender as all of this is, there is something incredibly humanizing about being in a pandemic and seeing so much suffering and experiencing the incredible stress and fear and all of that. At first, I was afraid that we would not want companionship because we would be afraid of other situations. Like going into a grocery store where everybody’s in a mask and you’re not really connecting. You’re trying to get in and out, and not too close to anyone. But I think, and this is an open question, we might have the opposite experience once we’ve passed through this variant stage of the pandemic. Maybe we’ll feel more united. I don’t know. What do you think?
JS: I’m hopeful for that outcome. I really am. And the times that I have been able to step back into society, I have felt way more connected with my fellow human beings. I think everybody realizes that gathering is a privilege. It’s special and it’s precious. I’ve been engaged in soaking up what it means to even be able to gather, and I think a lot of people around me seem to be doing the same thing. We get to go out to dinner. That’s special. We get to go to a comedy show. That’s special. Anything. The beach is interesting because people have been distancing but being in nature anyway. It’s just these normal, human society things.
I haven’t been clothes shopping since the pandemic started [laughter]. I’ve almost completely transformed into jeans and t-shirts and athleisure. So that hasn’t returned because I can’t imagine going into a store and trying on clothes right now. I feel as though it’s a total privilege. I’m not taking anything for granted, and it doesn’t sound like the people around me are either. I love that, because that’s always what I’ve liked about working and life. Just the juice of man, this is really meaningful. We got to experience this. And now it’s as simple as a reservation at a restaurant. I love that. I think that’s healthy for us.
JL: Yeah, I think maybe because we haven’t been going out and socializing and buying clothes and all those things, too. My brother said this to me: “You know, I realize I just don’t need so much stuff.”
JS: Oh yeah. I don’t cruise around at Marshall’s anymore, just picking up stuff. I like that. I think it’s cut way back on consumerism which was a barrier to accessing thoughts around mortality. There’s good and bad, right? Obviously, this is horrible, and the deaths that we’re seeing are bad deaths.
This is not a pleasant death. The whole connection with not being able to breathe and so many ways that we’ve experienced since this all started, that’s very basic to humans. Breath, air, being able to take a deep breath, and when you have that taken away, there’s an automatic fear response that goes off. So, it’s been a particularly scary time. But I think it’s good at the same time, because it’s bringing out all those precious nuggets and giving us meaning in life. Because if we could live forever, what would life mean?
JS: So, I think we’re really front and center with this idea that life is short and we don’t know what’s going to happen. It’s short and it’s unsure, and I’m just going to show up for today and make the best of it.
JL: That’s an excellent point. Making meaning at end-of-life isn’t just for people who are moving into actively dying.
JL: It’s really for all of us. I don’t think there’s much of a conversation that I’ve heard publicly. What is the meaning of this life for you? It doesn’t have to be, I’m an expert, world class parasailer, or anything like that. It could just be as simple as, well, I love being with my friends and I love eating ice cream. That could be okay. That could be 100% wonderful. We could be able to think, oh, these are the things that I feel grateful for and that make me feel good as a human being. And these are the ways in which I can interact with the world.
JS: Yeah, I think that’s important. I think we needed a good dose of that. There was a sense of disconnect that I was feeling a lot before the pandemic. It was a much harder trail to blaze for being an independent death worker because the first part of what you do is all education, education and having these conversations with people. In a way, the pandemic has really done my job for me, because everybody is aware that life is not guaranteed. You don’t know when and you don’t know how you will die, so let’s embrace.
JL: It’s been hard for families, especially. I don’t know how it’s changed there. I think it’s kind of different regionally. But in the early days of the pandemic, you couldn’t even be with a loved one while they were dying in hospital. And even in hospital and intensive care, they were walled in. And even their health care people barely touched them in the most need-to-do way. Those were difficult times. How are things now? How much interaction are families able to have with their loved ones?
JS: It depends on, obviously, what’s going on in that region. It’s been fluctuating, even with assisted living, skilled nursing, senior communities of any kind, and, obviously, the hospitals. We used to just be able to walk into a hospital, and it’s never gone back to that. There’s a lot of checking the temperatures. There are a lot of barriers already. I think a lot of people are seeing how important it is to get out of the hospital if they can, because once you’re in, you might not be able to come back out.
The separation has been awful because no one’s been able to sit down with these dying people and see where they’re at in their process and how they’re thinking. They’ve had to do that completely on their own, in their own head. And who knows if they even had the time to do it. Maybe people were just intubated, and they were put under, and they died in that state. I don’t know what that does to a human being or to a life source when you don’t go through that. I’m unsure. So that’s the biggest disconnect. When people die alone, I just hope that they are somehow able to access a conversation with a higher power or an inner voice that can help guide them through their own dying process.
That’s weighed on me a lot. I haven’t been able to get those conversations going and know that they’re happening and getting people to move toward acceptance. I really hope that these people were able to connect with something to help guide them through, because not even their nurses could be there in that way. The loneliness. It goes back to that theme. So, lonely death concerns me a lot.
As far as the assisted living and senior communities went, they did their best to try to make visiting possible, but the truth is, some of those places, they’re like cruise ships. The illness can really rip through for staff and for residents. It was a really bad situation. A lot of people, because of that, got out of these living situations and either moved in with family, moved into a smaller care type situation, or the new boom is gated communities that are for 65 and over. People have individual homes or trailer homes or apartments. Kind of separated living, so they can be accessed, I guess is the point. These other buildings, they could take away access. People don’t want to lose that.
JL: So, a lot of your work has really been with the families more than with the person who’s dying.
JS: Yeah, at least at first. Right now, I’m working a lot with people who are dying just because of that wave of illnesses, the tangential issues that came out of COVID. Now I’m working with a lot of people face-to-face. I’m getting to do that again. I’m vaccinated, and I test regularly for my clients, so they know. I do the rapid test so I’m not bringing anything into their home.
So, I’m back to doing that, back to working in the home. I’ve only been in the hospital once since COVID started, and I have not been back in an assisted living facility. I’ve been in a skilled nursing facility once. I’ve been in boarding homes, but they have a very limited number of residents and are able to control their environment more. They’re unique, and, also, just set in California.
I’ve been in senior communities, assisted living homes, and hospitals. I really haven’t connected since all this started.
JL: Well, I know some day we will be free of the pandemic, and I wonder what that world is going to look like.
JS: I wonder, too. Before the pandemic, assisted living situations were the jam. It is like living on a cruise ship. You get three meals a day, you have friends, you have activities, you have people who take care of you. It’s a great setup, but I don’t think we’re going back to that because of the way it played out.
I think aging in place is going to be the new goal for people who are terminally ill, or just aging. I think aging in place and being in a place where your family and whoever else can access you is important. Moving away from places that can deny access.
JL: Well, we have a lot of things to figure out moving forward. That’s for sure.
JS: Because the hospitals so often don’t let people come there. I hope people do at least check in. Or if they don’t have a general practitioner, get a general practitioner. Get a check-up. There’s a weird freckle? Get it checked out. If you’re not having regular bowel movements, get it checked out. Don’t stop advocating for your own health care because you’re afraid of COVID, because you might not die of COVID, you might die of colon cancer. Still advocate for your own care. Obviously, be safe, but I don’t want people to step away from what’s important for them and their own bodies out of fear of getting a virus.
JL: What do you think is the most important thing for people to know about how a death doula can be helpful?
JS: I’m playing with the word “doula” more and more. I’m leaning more toward “death worker.” This is a conversation I’ve been having with colleagues. I do see this language shifting in the future because there are doulas and there are also death workers who might not be as doula-y. Doulas often have more personal touches. They’re very personal. It’s a very intimate relationship.
Can you ask that question one more time?
JL: What do you think people need to know about death doulas, or death workers, going forward? What’s the most important message to put out there in the world right now?
JS: These people can help advocate for you. Doulas and death workers can become your own personal advocates and get you access to the healthcare that you need. If you need help finding a hospice, or understanding palliative care, or getting caregivers in the home versus going to a facility, that’s all stuff that we can do while managing the emotional support for the family, too. They can give you options and resources so that you can continue to make your own choices, and then they support you in your choices.
I think now more than ever, auxiliary help is much, much needed. Like I said, I’ve been hearing people use “consultant,” “end-of-life consultant,” “coach,” or “death worker,” and it’s really expanded things. “Senior care specialist” is another. I like that, and I want people to keep reaching out for whatever feels right for them because we’re all working in this similar space, but we’re filling the gaps that healthcare and the funeral industry can’t fill right now because they’re busy and tired and they don’t have to do everything. We’re here to help them, too. So, the best thing a family can do is get more help for everyone.
I take care of everyone I work with, including the hospice team and the funeral directors I work with. Maybe you get a coffee, a lunch, a letter of appreciation, something, because we’re all a team around this one person. It’s great to see families reach out and get that help, because we can do so much. Pretty much anything you want, we can make happen.
JL: That’s a great message. You’re piloting this ship through the waters, and you know the roads, you know the places to stop. You know your way around. I think that’s such a gift, to have someone like you who can help.
JS: Especially if you’ve never been down this road before. I get help with things that I don’t know how to do, and that’s just it. If someone’s got a diagnosis or is aging and needs more assistance, this is the perfect tool to use. You don’t have to know how to do it. We do. You just hire us and it’s like a plug and play-type situation.
JL: That’s great. Well, is there anything else that you would like to share that we haven’t touched on?
JS: I don’t know. Earlier we talked about some people being afraid of companionship, as if other people are the threat. I really hope that it goes the other way of accepting companionship and accepting community. I think the more people divide, the worse things are going to get. I hope that we’re able to see the nuggets of beauty in life and take advantage of those, of those moments, of those people, of those times, of those restaurant reservations, instead of isolating out of fear or anger. Coming together, instead. I’m hoping that’s what the future will evolve into. So, we’ll see.
JL: Do you think that healthcare will change in that way as well? Now that you’ve worked so intensely, maybe the team will change more broadly?
JS: You mean, like a client’s, a patient’s, circle of care type team?
JL: Yeah, like that. And also, an awareness within all levels of hospital care or assisted living that, “Oh hey, maybe a death doula is who we need right now,” or, “We need a death-care navigator,” or whatever you want to call them. Just the idea that there are more resources, there’s more awareness. I think it’s also a way of shouldering the burden.
JS: A lot of my goals have been to build those bridges and just let people know, “Hey, we’re here if you need help with a particularly difficult family or situation, because it’s just more complicated and needs more time.” That’s something we can help with. We can do self-care for staff and lead support groups, anything like that to build bridges and let them know that we’re a part of the whole picture. I think the more press and the more projects, like When You Die, come out, that’s great. I think the idea is becoming more normative. Just like birth workers and birth doulas are, I would say, almost mainstream, completely mainstream normative.
I think we are headed toward a future where we’re a part of the client’s overall picture of care, which will benefit everybody.
JL: It certainly will. Well, Jill, thank you so much for talking to me today. I really appreciate it.
JS: Absolutely. Thank you, Johanna.