Interview with Annetta Mallon (death doula)
The word “doula” has become synonymous with people who assist women through pregnancy and childbirth, helping to bring new life into the world. But what support is there at the other end of the spectrum, for people who are coming to the end of their lives? When I first started this blog I didn’t know “death doulas” existed. I was stunned, then instantly fascinated – I had so many questions! But who could I ask? Did an atheist death doula even exist? I may have had to search clear across the globe to find her, but yes! Annetta Mallon is an atheist death doula (end of life consultant) living and working in Australia, and I was thrilled when she agreed to sit down with me and talk about her work.
Can you describe what a death doula is?
A death doula is a non-medical support role available to people at the end of their lives. Our role usually begins from the moment of a terminal or life-limiting diagnosis through to the time of death. It’s important to emphasize that this is a non-medical role. We don’t talk about procedures or administer drugs, that’s the place of pharmacy, palliative care, hospice, etc. What we do offer is support, silence and witnessing, comforting presence, deep listening, whatever is needed. One of the most important things we do is simply holding space so people can feel and say what they need to.
While “death doula” is the commonly recognized term, I prefer end of life consultant because the support we provide is so much more than just at the time of death, and I consider it a great success if a family and client feel informed and empowered enough not to need me at the time of death. “Doula” is also inherently feminine and excludes or invisibilizes male and non-binary persons in this space. Uniformity doesn’t serve our clients – not everyone wants to talk to a woman! Choosing an end of life consultant is a lot like choosing a hairstylist, it has to be a good fit.
What is challenging and rewarding about being an atheist death doula?
What’s challenging is the people who work in this space who say ‘this is my cookie cutter shape and I want you to fit inside of it,’ not even recognizing that they demand this space for themselves and won’t allow for space that is different. After mentioning I was atheist I once had another end of life consultant insist “you need to offer people something more!” I don’t give these people oxygen or air space, they can work out their discomfort on their own time. Listen, what’s comforting for you isn’t comforting for everyone else. The most rewarding part is creating space where people feel safe enough that they can articulate their wishes and needs. When clients feel they can do things without me needing to be there, when they feel empowered, I know I’ve done my job right.
In working with atheists/non-believers at the end of their lives, have you noticed anything distinct about their experiences or perspectives?
In terms of active dying, no there isn’t anything distinct. The body shuts down in very predictable ways. I may be the wrong person to ask because I come at this from a rationalist perspective, so others may answer this question differently. When someone is dying I ask myself what are the signs of active dying, do I need to call anyone, are all the family/friends who need to be here actually here? I struggle with the idea that anything revelatory happens on the deathbed, and I’ve never experienced that.
The greater distinction usually comes just after the terminal or life-limiting diagnosis. I do think atheists and theists reflect on their lives differently. Regrets tend to run deeper in people with very strong religious frameworks and convictions, often because they recall times their dogma told them to do something that ran contrary to their own moral framework – covering up non-consensual cheating, violence, crime, abuse. Which is not to say that atheists and agnostics don’t have regrets, but the tenor and tone of reflection are different. Regrets are on our own terms rather than how we might try to negotiate and filter them through the lens of religious structure.
Could you talk a little about your views on secular spirituality and whether you think there is an important role that secular spirituality can play during end of life care?
I do find myself resisting when the word “spirituality” comes up because it’s so often tinged with religiosity. But it seems there may be value here for people who have said yes I don’t believe in god, and I don’t need that, but there’s still part of me that thinks there may be a greater meaning that I can’t see from here. If people find that kind of structure helpful, if that’s their doorway into wonder, awe, and joy and the way that they commune and navigate life, I don’t think it’s a bad one. I would certainly never say that life can’t be wonderfully full of beauty, magnificence, or curiosity. That said, people don’t necessarily need to focus on the intangibles at end of life. Not to say that ideas aren’t important, but what’s usually more important is the here and now – your pets, plants, relationships, books! If you can check the “big meaning” box before end of life, then that frees you to focus on the tangibles.
As an atheist, does accompanying someone during their dying fill you with a sense of wonder/mystery/awe, as it does for many religious people?
I like the way Lizzie Neville (an end of life doula in the UK) put it. She described it this way: “we breathe in, we breathe out, we breathe in… we’re alive. We breathe in, we breathe out… we’re dead.” I take issue with the way some religious people fetishize dying. I wouldn’t say that it’s the ultimate privilege or the ultimate profundity, because there’s something obscene in this shifting of the focus from the dying individual to you and your own feelings. Let’s get away from this idea that death should be this certain way, coming to it with an expectation of what I should feel internally instead of showing up for the reality. Removing that person from their unique dying and adding your own feelings to that experience is problematic. I’ll also add that not all death is peaceful. Imagine someone who hasn’t received adequate pain management, or doesn’t respond to it, and dies in agony. What’s profound about that?
When making end-of-life preparations, what activities or discussions have you found are most helpful and comforting for clients and their families?
Anywhere that I can bring in a laugh, because that changes the energy. Also any place where people can be creative. Bringing creativity to a memorial or legacy project, injecting your own personality into it, is something people enjoy. When people realize their planning doesn’t have to be a rushed, impersonal thing, when we introduce the idea of time, everyone can relax. I’ll also say that clients near the end of life like the idea that they can make or offer something, like writing a letter to loved ones, or creating a video. With the dying person it’s often about legacy, with the family it’s often about memorials.
Do you experience any anxiety when contemplating your own death? How has your relationship with death changed since you started your work?
I don’t have any anxiety about my own death, but I have lots of anxiety about dying. I don’t want to be in pain, and I’m far more anxious about being neglected than needing help or being infirm. The circumstances of a violent or unexpected death also concern me more than declining because of old age. Being an atheist I’m not worried about going to limbo or hell (thank you, Catholic upbringing!), it’s the lead up to death that bothers me.
As to how my relationship with death has changed, I know now that I’d want palliative care as early in the process as possible. I’m more respectful of the spectrum of time that “end of life” can encompass, and I know the value of bringing in care and pain management early on. I’m also much more open to where I die. People push this narrative that a “good death” means dying at home, but I’m far more flexible. I reject the idea of a “good death,” but I think perhaps a better death is one that’s on your own terms.
What lessons has dying taught you about living?
None of us have as much time as we like to think we do. That’s the great lie of our time, that we say “when I retire and if I die.” No no no, it’s “if I retire and when I die.” This is very sobering for people. Babies die, teenagers die, young adults die. We fear death, treat it as a taboo, so we push this idea that you’ll live a long time and then die peacefully in your sleep. And that’s the really damaging “good death” narrative. Not all of us get old. So drink the good wine. Eat the ice cream. Tell people you love them now, regularly and often. None of us know how much time we have left.
What books, podcasts, movies, etc. would you recommend?
It’s terribly USA-centric and slightly weird, but there’s a Netflix film called Poms and it’s a wonderful celebration of friendship, love, support, and just being fiercely alive until you’re dead. And I like that idea, being fiercely alive until you’re dead. I recommend books by Carl Sagan and I like the Infinite Monkey Cage podcast, which pairs popular science with comedy. They cover a fascinating range of topics and it’s very rooted in science and living. Anything on Youtube with Christopher Hitchens and Stephen Fry, of course! I’d also highly recommend anything by Terry Pratchett, who was a wonderful social commentator and social satirist. I especially loved his book “Reaper Man.”
Tell me about when your book is coming out and what topics it will cover!
The book will be based on my personal experience. It’s going to be about resistance to genuine atheism and absence of belief in non-medical end of life work. Some of the topics we touched on here, like religious filters, and the outcomes of allowing people to die on their own terms, free from other people’s expectations and frameworks. I’m also hoping to include a chapter on the dominance of whiteness and white practice in the end of life and death care industries. That chapter will be based on some collaborative work I’m doing with my colleagues at Western Sydney University who are exploring the topic of critical whiteness. I’m hoping to have the book out by the end of this year (2021). The name is still under wraps!
For more information about Annetta and her services, visit her website here: https://www.gdep.com.au/