We’ve all heard the saying there are only two certainties in life. Well, today we’re not going to be discussing taxes. The medical profession spends its efforts delaying physical decline and death. On this episode, we will speak with a death doula who helps patients prepare for death. What might seem like an uncomfortable and morbid conversation is not. Learn what death doulas do and how they interact with physicians for the benefit of patients.
This transcript of their discussion has been edited for clarity and length.
Mike Sacopulos: My guest today is Francesca Arnoldy. Francesca is the author of several books, including The Death Doula’s Guide to Living Fully and Dying Prepared. Francesca Arnoldy, welcome to SoundPractice.
Francesca Arnoldy: Thank you for having me.
Sacopulos: Oh, thank you for being with us. I’m interested in this topic, but you have to tell me, what’s a death doula?
Arnoldy: I’ve been working as a doula for 14 years now. I started at the other end of life, in the birth world. I began as a postpartum doula supporting families as they would bring home a new baby. Then I taught childbirth classes, and then worked as a labor and birth doula for many years before our family experienced a number of personal losses right in a row. Those included two of my grandfathers, my father-in-law, and our pet dog within about two years.
What I noticed was that during those times, I would naturally shift into what I consider to be my doula presence and it was just happening very naturally. This opened my heart and my mind to wanting to explore providing emotional support to people at the end of life. So I became a hospice volunteer, and I still do some of that work. Then the fates allowed me to be invited to create an end-of-life doula training program at a university.
I did that, and that involved really thinking about what it is to me to be a doula and how to translate my beginning-of-life support skills to end of life. There are many similarities in the sense that at both thresholds, it’s very mysterious, and brings up a lot of emotion for people, some expected and some totally surprising.
What we need by our sides at these times generally is a presence that is calm, non-anxious, trusting, supportive, and encouraging and continuously available to us. In short, a doula is a person who provides emotional support to somebody else during a major life transition. I could definitely go into some details about what exactly I offer as an end-of-life doula. We do have a role and scope, but there is some variation from doula to doula.
Sacopulos: Well, maybe give me a few specifics to contextualize our conversation.
Arnoldy: For me, I like to think of my approach as including planning, preparing, and processing both beginning of life and end of life—really reflecting back on the life somebody has lived. Some people want to do this to varying degrees, so it could be very informal reminiscing. Then from there, I might invite them to consider creating a legacy gift or a remembrance project for those who will be left behind, so we could formalize that life review or create other customized versions of a project and a gift that really help to honor the life and the impact that a person has made.
That’s some of the work that I really love. It’s also practical work. It’s thinking about, do you have your affairs in order? I don’t provide medical advice or care, and I don’t provide legal advice, but I can bridge people to the resources that they do need to feel like they have unburdened themselves and checked off everything on their to-do list, and then that frees them up to spend the time that they do have in the most meaningful ways. Some doulas offer respite care as well, so they could be a bedside presence. They could give the other caregivers a break, which can be really helpful, because the process can be very trying and exhausting, as we all know who have companioned our loved ones through the end. Doulas really work alongside hospice and palliative care.
Sacopulos: Let’s talk about that. Because as you know, this is the podcast of the American Association for Physician Leadership, so we have a number of physician executives in our audience today. How do you collaborate with hospice and palliative care?
Arnoldy: I have the good fortune of working with a number of amazing physicians and other clinicians in my local area. I’m also a part-time researcher at the Vermont Conversation Lab, which is run by the head of palliative care in our network. He and I have collaborated in a number of ways. He wrote the forward in my doula guidebook that I wrote in 2018, and we’ve been working on research together, mainly focusing on story listening for grief. We ran a project through the pandemic, and now we’re publishing papers about that.
I’ve also, in my private practice doula work, been able to make connections with physicians. They end up sometimes referring people to me when they see that there could be benefit from adding in another layer of support on top of the palliative or hospice care that the person is receiving. I’m also, for example, currently working with a client who is not quite qualifying for hospice. I am supporting her in the meantime, and we’re developing some of her end-of-life care wishes together, and I’m in communication with her adult children, but I’m also in close communication with her palliative care doctor. I’m able to give that doctor more frequent updates because I’m sort of like the eyes and ears of what’s happening so that we are well-connected in between visits from the palliative care doctor.
Sacopulos: Now, we’ve been speaking about this strictly in terms of terminal illness, but do you work with people who are not terminally ill as well?
Arnoldy: I do, yes. So this current client—she has an incurable condition, which will be terminal, and she’s trying to access different options for her end-of-life care in advance. I also really appreciate working with people who maybe are not experiencing any sort of health crisis or condition, and they are aging and they’re in a healthy place currently in their life, but they’re really willing at this point where they have adequate energy, ample energy, to start to think about planning for the end of life and to start exploring their mortality.
For me, I’m in my 40s. I have teenage children. I’m in good health at this moment as far as I know, but I still find it to be an incredible practice in terms of adding meaning to my own life day by day to consider my mortality and to work with that and to grapple with it and to sometimes be angry about that and to sometimes relish the sense that that gives me the motivation to really embrace the time that I do have.
I do like to run workshops. Then, to reach even more people, writing and publishing this new book makes it so that even in their own homes or in their book clubs or with a friend or a loved one, people can go through a lot of the prompts and exercises that I offer one-on-one with my clients or groups.
Sacopulos: Well, let’s talk about your new book. Tell me all about it and who’s the intended audience.
Arnoldy: Thank you. My intended audience is really mortals, people who are willing to think about that. They might not be fully accepting of it, and I totally understand that. I’m not always fully accepting of it. In the book I cite quite a bit of research. There’s research that actually says that psychologically, in our own minds, even though logically we know that we will die someday, we tend to protect ourselves from that reality. We think about it in terms of that’s something that happens to other people or that’s something that will happen to me, but not for a long, long time.
And that’s a protective feature that we need to respect. It’s not forceful. It’s very invitational. Right from the beginning, I encourage people to peruse and choose and to try and modify, and that’s what I do as a doula. It’s very customized care. I’m hoping to reach people upstream. I’m hoping to reach people who are maybe thinking about in their adulthood what they want their life to mean, and they’re willing to think about if I were at the end of my days and I were looking back, how would I feel about the way I spent my time and what would feel unfinished?
Then they can use that to inform the way that they will live. Also, I feel like when you have made some of these preparations in advance, then it doesn’t feel like it’s looming. It doesn’t feel as stressful. All of these actions can turn into gifts, whether they’re tangible or not, to the people who will potentially be making choices for us on our behalf and who will be grieving our loss.
Sacopulos: Tell me the title of your new book and how people find it.
Arnoldy: It’s The Death Doula’s Guide to Living Fully and Dying Prepared, published by New Harbinger. It’s just out and it’s available widely, so any local bookstore can order it for a reader or any online store is carrying it right now. People can go to my website to find easy links—my name, francescalynnarnoldy.com, or the same site, contemplativedoula.com.
Sacopulos: You used a couple of terms in the new book that I was unfamiliar with, death wellness and death positivity. Can you define and differentiate the terms?
Arnoldy: Sure. I think that death positivity has been gaining traction for a number of years within the death care community and a little bit beyond. I love the spirit of that movement. I think it’s really important. It’s similar to sex positivity in the sense that this is part of normal life for humans and that we can talk about it and really fold it into our day-to-day and into conversations. At the same time, I feel like the term “positive” might make people hesitant to embrace it.
In the book, I talk about death wellness much more often than death positivity, because that to me seems like a healthy relationship with our mortality, but not necessarily that we have to feel positive about being mortal and about facing the end, which is exactly what death positivity is trying to establish. But I feel like the term positive might turn some people off, and so I’ve shifted it to wellness, because we don’t have to be happy about losing our loved ones. We don’t have to be happy about having a terminal diagnosis.
That is not required to have a healthy relationship with death and our mortality. It’s really more about being very honest with the emotions and the reactions that are arising within us, being able to express them and receive adequate support to work through them.
Sacopulos: Good. So maybe let’s talk a little bit about the process of contemplative planning of end of life. Can you give us some details on how that process plays out?
Arnoldy: Again, I looked at my birth work to inspire end-of-life care planning. As a birth worker, I would meet with people during pregnancy a number of times to start to establish their birth wishes. And a lot of it was conversation. I would have a number of prompts in a file, and then we would have conversations. These would allow us to build rapport to get to know each other so that they would build a level of trust in me and the kind of support that I would be available to offer.
Then from there, we would pull out the highlights and then place them into an actual document that was their birth wishes. The same really goes for end-of-life care and these contemplative prompts that I have created. I like to use the who, what, why, where, when, how questions as the organization and as the structure for them. They’re featured in the new book, and I have so many prompts within each category, except for the “when.”
I don’t really go into the “when” in much detail because there is so much mystery, and even with—as you know, you’re a physician—with prognostication, it’s a best guess. Often we’re talking about years to months or months to weeks or weeks to days, days to hours, or that death is very imminent. But all along the way it’s based on an individual’s body and their condition, their age potentially, and then so many other factors that we can sort of guess at, but we can’t know for sure.
So I try to avoid hyper-focusing on the when. I know that as a society we really do like to have control and we do like to have our schedule and our agenda, and we like to feel like we have agency over what’s happening. In so many ways, death really does strip away that sense of control that we have. Looking at the factors that we actually can control, that we can find our voice, we can find that sense of confidence to be able to establish in advance, here’s what would help me feel comfortable and safe and heard and validated.
Then, from there, thinking about, with a lot of flexibility, how we could create contingency plans, because we don’t want people to be clinging to an ideal. We want people to be very realistic going in and knowing there are going to be twists and turns just like with birth.
And we have set up in advance a clarification of who you are and what you value and what you’re hoping for so that we can really strive for that as a team and then get creative when things go sideways. We talk about how we could still continue to pull in some of those features from your wishes so that all the way through you feel like you’re being really well cared for.
Sacopulos: This seems like a labor-intensive process. How many individuals can you be a death doula for at one time?
Arnoldy: I mean, that does vary from doula to doula and how much time they’re putting toward this work. For me, because I juggle writing, because I juggle the research position, and I do conferences, speaking engagements, I do some hospice volunteering, I like variety in my life, I tend to work with one person at a time. For other doulas, they might be working with a couple of people at a time. Much more than that and it gets sort of tricky if they are making themselves available for on-call, for vigil for the very end-of-life.
But many doulas work in partnerships so that they can cover each other. And then other doulas work in collaboratives or collectives. They’re all adding in their unique skills and gifts. Then their clients can pick and choose what interests them, and they have plenty of coverage for the calendar. They might be covering 5 to 10 people at a time. There definitely are some thriving practices, especially in different pockets of the country. In other places, it’s still largely unknown.
To be a private practice doula, we really need to do a lot of community education so that people understand that we are coming in and we’re outside of the healthcare system, but we’re really working alongside people in those positions in hospice and palliative care. We work very complimentarily, very harmoniously with those people who are providing end-of-life care.
Sacopulos: Is there a national association for death doulas?
Arnoldy: There’s no governing body. There’s no licensure. There’s no one national organization or international. There are some. There’s NEDA, the National End-of-Life Doula Alliance. They offer education. They have a directory, and they have an exam that people can take sort of as a stamp of approval. That’s the closest organization that I can think of. Otherwise, it’s really individual training programs. That’s the spirit of birth work as well, even though that has become established.
Back in the ‘90s, the first major national training body was established in birth doula training. And still there’s no licensure, there’s no overseeing body there. There are a variety of opinions within these communities. Some people feel that we need to professionalize, we need to establish our role, we need to be woven into the healthcare system.
Then on the other end, there are many people that say, “No. We need to stay outside of the healthcare system so that we can determine how much time we’re able to spend with people. And we’re not so limited or so taxed by the amount of clients that we have to take on so that we’re able to operate in the ways that work well with our lives and for our client’s needs, and then anything in between.” So I’m not sure where it will go, whether eventually it will be more professionalized or not.
Sacopulos: What, in your experience, is the average cost for someone engaging a death doula?
Arnoldy: It depends on the doula’s area, where she lives or he lives or they live. I usually encourage doulas to look at their own community and see what birth doulas are charging for their services, and then to gauge fees for the end-of-life care based off of that, because it’s probably going to be similar. That seems to work well for people. A lot of us do offer our services at a sliding scale. For my own practice, I offer most of my services on an hourly basis.
Sometimes it’s more of a package price. If it’s vigil wishes, contemplative end-of-life care, or a legacy project, and I know in advance it’s going to be two to three visits for this certain number of hours, I can offer a package price. But when I’m offering my services hourly, then I offer a sliding scale range, and the client determines based on their own financial means what they’re going to pay me per hour.
Sacopulos: What’s a memento mori and how do you practice it?
Arnoldy: Memento mori is Latin for “remember death,” or, put more starkly, remember you will die or remember you must die. This has been around since ancient times, or it’s been known to be around probably even longer before that term is even used, as a reminder that time is fleeting. Our lifetimes are temporary. And with that knowledge, we can fully relish the here and now in these moments while not forgetting that it will end someday.
It’s a really powerful practice to gently sprinkle in reminders during our days, during our lives, so that we don’t end up living while sleeping or being zombies just one foot in front of the other and we’re not fully embodied in our own lives and not fully present and not really thinking about with some intention and thoughtfulness. Is this how I want to spend my life?
This is not to say that we have to be busy and moving all the time or accomplishing things relentlessly. It also means that we can rest and rest deeply and take breaks and take good care of ourselves and know that that’s all part of a balanced, healthy existence. I’m sitting here in my home office and I’m looking at my major memento mori, which is full of individual memento mori symbols. It’s my bookshelf, which is a beautiful, very simple wooden casket made by Fiddlehead Caskets in Canada. Right now it’s a bookshelf and eventually it will be put to use for when it’s my time to die. In it, on its shelves, I have many other memento mori items. And so they grab my eye. They remind me to live fully. They remind me that I am mortal. For me, that’s a really meaningful practice to put into parts of my days.
Sacopulos: I know you said that this goes back in history, and it certainly does, but it seems to me that perhaps the intentionality and thoughtfulness that this practice brings forward has been harmed by such great improvements in medicine, right? I mean, we are able to put off infirmities and/or deal with them in ways that we’ve never been able to in the past. Do you find that with some of the individuals that you work with, that quality of medicine over their lifetime has put off things till the end that you’re now dealing with?
Arnoldy: Yes, that absolutely happens. I think that in those more extreme situations, probably those people wouldn’t hire a death doula necessarily. They wouldn’t be as open to it. But even as a hospice volunteer, I see that and I bring my heart of compassion wherever I go, in any of type of death care work. I think that we have to start questioning more as a society. We have options, we have interventions to consider, but at what cost, at what additional level of suffering? We need to really weigh that more honestly than we tend to right now.
Sacopulos: Do you think that the medical profession does a good job with end of life?
Arnoldy: In some ways, yes. I think that there’s always room for improvement. I find myself feeling incredibly fortunate in my area. We have very skilled clinicians and practitioners who really want what’s best for people. And I love that. I think though physicians are also humans, also mortals, and also are people who may or may not feel like they have a willingness to create a relationship with death themselves personally.
If you’re bringing all of that fear and anxiety into your work, it’s going to be much more difficult to have honest conversations with people who are more imminently facing their own end-of-life. Creating these conversations, rippling them out into the physician networks as well, is incredibly important. I know that for me, when we were running our story listening project during the thick of the pandemic, we were inviting clinicians, as well as friends and family members who had lost people during the pandemic.
I was able to catch stories from a number of physicians. It was really profound and very powerful to hear their accounts of these compounded losses—patients, so much suffering, so much isolation, so much loneliness—and how that was mirrored even in their own lives and what they were taking on, what they were asked to take on, the really heavy emotional burdens and the exhaustion on top of that. And then having to just swallow all that down and try to stifle it to continue on.
It was incredibly heavy. To hear some of them being able to finally lower their defenses enough to release some of these stories and say them out loud in a safe, confidential place, and to be able to witness them pulling together the bits and pieces of that experience and what they had gone through when they hadn’t allowed themselves the pause to even acknowledge everything, it was remarkable and it felt very healing. It felt like a very healing space.
We really do need to give physicians more invitations to have honest conversations where they can explore their own thoughts, their own reactions, their own fears, their own wishes about end of life. Then from there, from that place of healing and clarity, they will be able to have more cathartic, compassionate conversations, I believe, with those that they’re caring for. But we all have to do that work personally first to be able to create that openness with others.
Sacopulos: Well said. As our time together draws to an end, I’m hoping you can give me some ideas on how people can become more organized for end-of-life.
Arnoldy: In the book, I provide scaffolding, so it’s not jumping right into thinking about your own moment of death. The majority really is about life and how you have lived and who you are and your voice and your stories and your connections. But then toward the end, we do really think about some of the practical steps that we can take to prepare ourselves for the end of life and those preparations we can make in advance. It acts as a precursor to the legal forms that people might then either update or start to create for themselves.
Even thinking about your space, what you own, your belongings, your things—death decluttering is a part of it, thinking about what you might want to keep and hang onto for now or release in advance, thinking about eventually what you might want to give to other people and how to bestow that to them. It’s thinking about your services, ceremonies, rituals, how you want your life to be remembered, and then to be celebrated eventually, or while you’re still alive. As doulas, we definitely work with people who want to do a celebration of life while they’re actually still living and breathing and gather up their people.
I take people through so many different options of how they could think about that in advance. There’s also creating your own obituary and some different approaches to that. There’s your life story, thinking about what it has been. I’ve led some in-person workshops lately on death journaling, which is what I call this whole practice.
It’s been amazing to hear people say, “I’ve never taken the time to sort of think back on an era in my life and reflect on, who was important? What was I doing? How was it meaningful?” And you see them just lighting up and smiling and remembering and then capturing that in a written form to be able to then eventually pass on to other people. As a doula, I see this happening, where the mourners who are left behind after a loss, they’re still clinging to that relationship and they’re still yearning for that continued connection with their person.
Creating these gifts, like my own death journal that I’ve been creating for many years for my loved ones, will give them that chance to still find me, visit with me, hear my voice, hear my messages that I have created, especially for them during their time of grief and mourning, and how much that can facilitate healthy grieving. So it’s thinking about what you can do here and now, and then what can be left behind that will continue to support those that you have loved in your life.
Sacopulos: The book is The Death Doula’s Guide to Living Fully and Dying Prepared. Francesca Arnoldy, thank you so much for being on SoundPractice.
Arnoldy: Thank you for having me. This was lovely.