Death doulas and the death positive movement | The Excerpt

On a special episode (first released on September 4, 2024) of The Excerpt podcast: If you’re the type of person who might enjoy five daily reminders about the certainty of death sent to your phone, you might like to know there’s an app for that. It may sound ghoulish, but the goal is to find happiness by living truthfully with the inevitability of dying. Death is, after all, our shared and unavoidable final chapter in life. Organizations like The Conversation Project encourage meaningful conversations with loved ones and caregivers about personal wishes regarding end-of-life care. What is the path to acceptance and easing into the reality of dying and death? Best-selling author Alua Arthur, a death doula, attorney, and founder of Going with Grace, joins The Excerpt to discuss the death positive movement. 

Hit play on the player below to hear the podcast and follow along with the transcript beneath it. This transcript was automatically generated, and then edited for clarity in its current form. There may be some differences between the audio and the text.

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Dana Taylor:

Hello and welcome to The Excerpt. I'm Dana Taylor. Today is Wednesday, September 4th, 2024, and this is a special episode of The Excerpt.

If you're the type of person who might enjoy five daily reminders about death sent to your phone, you might like to know there's an app for that. It may sound ghoulish, but the goal is to find happiness by living truthfully with the inevitability of dying. Death is after all, our shared and unavoidable final chapter in life. Organizations like The Conversation Project encourage meaningful conversations with loved ones and caregivers about personal wishes regarding end-of-life care.

What's the path to acceptance and easing into the reality of dying and death? Our guest is bestselling author, Alua Arthur, a death doula, attorney and founder of Going With Grace. She now joins us to discuss the death positive movement. Thanks for being on The Excerpt, Alua.

Alua Arthur:

It's my absolute pleasure and honor.

Dana Taylor:

First, what is a death doula and what led to your decision to become one?

Alua Arthur:

A death doula is somebody who does all of the non-medical and holistic care and support of the dying person and their circle of support through the entire process. And when I say dying person, I mean anybody who has come into recognition of their mortality, which means that even when people are healthy, we can support them in completing comprehensive end-of-life plans. After death has occurred, we can help the loved ones and the dying person wrap up affairs. And when the person knows what they're going to be dying of, which is typically when we think of a death doula as helpful, we can help the person have the most ideal death for themselves under the circumstances. So it's really any emotional, logistical, practical support for dying.

Dana Taylor:

And for you personally, what led to your decision to become one?

Alua Arthur:

After practicing law at Legal Aid for about a decade, I grew quite depressed and took a leave of absence where I went to Cuba and I met a fellow traveler on the bus who had uterine cancer, and we talked a lot about her death, the potential for it. And it really got me thinking about how rarely I was able to engage in a conversation like that with somebody, a very real and honest conversation about our lives and what they meant and what we thought about death and our fear.

And six months after I came back from Cuba, my brother-in-Law, Peter St. John became ill and I got to support him through the last two months of his life. And that's when the reality of what we're talking about when we're talking about death really set in and I decided I wanted to support other people through it. So I started my company, Going with Grace to do that.

Dana Taylor:

How does someone become a death doula and how do they differ from traditional hospice care workers?

Alua Arthur:

Some people are born as death doulas, realistically. There are many people, I think, in a lot of different parts of the world where their grandma or the person in their family is just the one that is called when there's dying occurring in the community. And so that's how they learn how to do the work. Some other people go to training, Going with Grace has a training program where we train death doulas, we train other people to do this work, and some people learn how to do it by virtue of sitting volunteer at hospice and starting to volunteer in their community to support other people that are dying.

The role differs from traditional hospice in that hospice is medical in nature. The work is really focused on the body. Now, death doulas, while we are a good supportive person to hospice, our work is focused very holistically, trying to make sure that we connect people to all the services that they may need. And often, we can catch people much further upstream because we're not just available when somebody knows that they're going to be dying in six months, but we could be available for all stages of the life cycle.

Dana Taylor:

I was going to ask, what does it mean to take a holistic approach to death? Are there specific rituals or practices involved that someone should expect if they work with a death doula?

Alua Arthur:

Well, I think the person can expect that their particular wishes and desires are going to be honored as thoroughly as possible and not a carte blanche, this is how you die, approach. Part of the benefit of working with a doula is that we spend time talking to you very thoroughly about all the most ideal death for yourself under those circumstances. Because let's face it, people aren't looking at death like, oh, this is going to be great for me, or this is ideal for me, most of the time.

But yet, when we find ourselves in those circumstances, it's important to pause and say, "Well, what do I actually want? What music might I like? Who do I want to be there? Who do I not want to be there? What do I want done with my body, my services? Where do I want to be? Do I want to be in my home? Do I want my blankets? Do I want to be looking at pictures of people who have died? What do I want in my dying?" And we try as best as we can to create it.

Dana Taylor:

For someone diagnosed with a terminal illness as you've described or perhaps trapped in a deadly war zone, there is likely an immediacy to the feeling of impending death. However, most of us don't know when death is coming for us. How do death doulas assist or approach both of those scenarios?

Alua Arthur:

It's a little trickier when we're talking about people that are living in war zones or people who don't have a sense of bodily safety and autonomy. And I want to be clear that often, when I'm talking about the work of the death doula, I'm talking about it from a very privileged place, somebody who has some awareness that dying is occurring, somebody who can afford a death doula to come and serve them. And so I want to make that absolutely clear. It's an utter privilege to be able to think about mortality from some distance.

I think one place where we can, death doulas can also be supportive is we are really adept at identifying grief and helping people find strategies to cope with grief. Additionally, it's also useful to have some planning before the dying occurs, so that regardless of when that death might be, we are all prepared, no matter how we meet our end. But it is wildly important that we also pay attention to the fact that many people don't have the right to think about their death or don't have the capacity to just sit and muse on it because there are bombs being dropped on them consistently.

Dana Taylor:

The end of one's life may bring up intense emotions. Is it the role of a death doula to help people navigate that final chapter or are you on the journey with them? Is it an emotional experience for you as well?

Alua Arthur:

Absolutely, we're on the ride with them. By virtue of doing this work doesn't mean necessarily that we become immune to the challenges of being with dying. It's still very sad. It's still very complex. I often find myself grieving with my clients and sometimes grieving for them because I've gained a relationship with them. But one of the benefits of doing this work as often as we do and as deeply as we do, is that we can become really adept at grieving. Sharpening that skill consistently and understanding how it moves through our bodies and being able to name it and acknowledge the experience for other people as well.

Dana Taylor:

What are the ethical and legal considerations for death doulas when confronting end of life decisions like assisted dying? Have you been trained to have those conversations?

Alua Arthur:

It's part of a larger conversation. It fits into folks trying to imagine their most ideal dying. And for some, that means choosing in. I, as a key tenent of my work, I'm a big proponent of people having agency in their dying. You get to die on your terms as you will. And if somebody has decided that the disease that they have is going to lead to an end that they do not want, then I find it to be firmly within my role to support them in that decision making and to support them in carrying it out if that's what they choose.

And also, just to be clear, it's a high bar for clearing for being able to access that medication anyway. So by the time somebody has made the decision, they've spent some time with it, they've become really clear that that's the role that they want to take.

Dana Taylor:

And then also, what about a patient's decision to refuse end of life care? How might a death doula assist there?

Alua Arthur:

Same. We sit, we listen, we offer feedback, suggestions, resources. I think through it all, a big part of my job is to hear what people are telling me about what their desires are and do my best to make sure that they get it. And so if the desire is not to seek any treatment at all, I can support that. I'm not there necessarily to judge, but rather to make sure that people have what they need, what they want.

Dana Taylor:

Conversations about death and dying aren't easy for anyone, the patients or their families. How might a death doula facilitate these, help patients have those conversations not only with you, but with their families?

Alua Arthur:

Well, by the time somebody calls the death doula, they're ready to start talking about their dying. And I have to be honest that most of the time, I won't work with somebody unless they themselves have some acknowledgement that one day they'll die from that disease or something else. Because it's challenging working with a client who is determined to live when they are reaching the end. [inaudible 00:08:50] come in and I seem like the angel of death or something come to tell them that perhaps that's not the case and I don't want to take that role.

So being as we're coming in where everybody has some clarity that dying will soon be happening, we can start very simply with, "What can I do to support you? What are your needs in this moment?" And go from there because the needs often grow as the person gets sicker or as they begin to see the amount of information, the amount of things that need to get done as they prepare for death.

Dana Taylor:

I mentioned The Conversation Project. They offer guidance for sharing wishes with loved ones. What might those conversations involve?

Alua Arthur:

There are a number of things to consider when dying is approaching, and these are similar conversations that I actually have with my healthy clients who want to do some end of life planning. It's important that we would've already discussed items like who they want to make their decisions for them in the event that they can no longer, and desires for how they want to be cared for, and treating near the dying. As we talked about earlier, making sure that we can create an ideal deathbed situation for them.

We want to talk about their body and their services, what kind of services they'd like to honor their life or none at all. It's important that we discuss their possessions and see what they want done with their possessions when they can't use them anymore, considering things like their dependents or pets who will be left to care for them.

And then gathering important biographical information and data. Where are my birth certificates? Where are death certificates of people that have already died? My passports? Where are my bank accounts? What are my passwords across the board to all of my online stuff? These are conversations that we can and should be having, but that's on the practical side.

Now, it's also important that we spend some time thinking about the emotional, which dying also includes. Which is to think about things like, what values have made a life worth living to me, and what am I proud of? What do I regret? Who do I still need to say, "I love you" to? Who do I still need to forgive? Items of that nature are supportive as well.

Dana Taylor:

I'm just thinking about cliché now that on your deathbed you don't think about how many hours you worked or the awards that you've received. I just wonder how some of those conversations have gone and the life lessons that you've taken away from that?

Alua Arthur:

It's absolutely true. I have yet to sit with a client who was [inaudible 00:11:06] over a mistake that they made at work on their deathbed. Often people are really concerned with their relationships and who they loved, how they loved and were they loved? So people are often thinking more about who they were as a person as opposed to what they did necessarily. And that's a key component of our legacies that people often overlook until they're dying.

The client impact on me has been profound. I wrote about it all in my book, Briefly Perfectly Human, where I talk about the lessons that I learned while moving through my client's lives, but also while journeying through my own life. It's impossible not to be touched in a profound way by this work. All of our stories matter. All of our lives matter. All of our deaths will one day too.

Dana Taylor:

You touched on this, and I want to circle back. With death doulas assisting with the grieving process for family and friends of the deceased, is it that the family reaches out to you? Is it at the request of the person who has died that you stay and help the family with that process? How does that work?

Alua Arthur:

It's really very individual. It depends on the family. Some people have called, the family has called, or their circle of support has called because their person is dying and they want some support through the process. And so sometimes, I'm not there for the dying person, but rather for the people that are caring for the person. Sometimes it's the person themselves who wants somebody to talk to somebody to journey with or needs some things done and need some guidance on how to do it.

Sometimes it's after the death and the family members are trying to figure out funeral arrangements or need some support in the bureaucratic cyclone that exists after a death. So it really depends on the circumstances of the person's life, their level of awareness and comfort with their mortality and the circumstances of the death.

Dana Taylor:

And then finally, if there was just one takeaway about dealing with our own mortality and that of our loved ones, what would you want it to be?

Alua Arthur:

I think I would just say deal with it. It's time for us to start having the conversation that just by virtue of talking about death, doesn't mean it's going to happen immediately. It's going to happen anyway. Rather, talking about death can create new avenues for connection and vulnerability, for love, and for ultimately, renewed engagement with life itself.

Dana Taylor:

Thanks for joining me on The Excerpt, Alua.

Alua Arthur:

Thank you for having me.

Dana Taylor:

Thanks for our senior producer, Shannon Rae Greene for production assistance. Our executive producer is Laura Beatty. Let us know what you think of this episode by sending a note to [email protected]. Thanks for listening. I'm Dana Taylor. Taylor Wilson will be back tomorrow morning with another episode of The Excerpt.