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Death doula says life is more meaningful if you 'get real' about the end

As a death doula, Alua Arthur helps people to plan for the end of life and, when the time comes, to let go. She says that while we're conditioned to fear death, thinking and talking about it is instrumental to creating meaningful lives.

"When I'm thinking about my death, I'm thinking about my life very clearly: ... What I value, who I care about, how I'm spending my time," Arthur says. "And all these things allow us to reach the end of our lives gracefully, so that we can die without the fear and the concerns and the worries that many people carry."

Before becoming a death doula, Arthur worked as attorney — a job she hated. Unhappy and depressed, she took a trip to Cuba where she met a fellow traveler who had terminal uterine cancer. Talking to the woman about death, Arthur realized she needed to make a change.

"Up until then, I was just kind of waiting for my life to write itself without taking any action to make it so," she says. "Thinking about my mortality, about my death, really created action."

Arthur went on to found Going with Grace, an organization that supports people as they plan for the end of their lives. She says a big part of her work is helping people deal with regret as they reconcile the lives they lived with the lives they might have wanted.

"When folks are grappling with the choices that they've made, my role is to be there with them," she says. "Sometimes the greatest gift that we can offer is grace. ... Part of the reason why I named the business 'Going with Grace' is because of the grace that needs to be present at the end of life, for people to be able to let go of it."

Arthur's new book is Briefly Perfectly Human: Making an Authentic Life by Getting Real About the End.

Interview highlights

/ Harper Collins
Harper Collins

On the death of her brother in law, Peter, in 2013

It was the first time I was really faced with this reality that the people that we love might not be here for much longer. It felt really isolating. I knew intellectually that there were a lot of other people that were ill and getting close to ... the end of their lives, but it felt like we were the only ones that felt like we were on this little cancer planet by ourselves, where somebody we loved will soon be dying. And there wasn't some one person that I could turn to to say, "Help! Just help. I'm lost here," or "Today's really hard," or "How do we navigate this?" Or "What do we do with all these medications?" "Where can we find smaller sized hospital gowns that will arrive, like in the next days?" (Because he was losing weight so rapidly) We just needed some help and I mean, practically, but also just somebody to be there to listen, to rely upon, somebody that I could lean on as other people were leaning on me. ...

Many people have already served as death doulas for somebody in their family, and most of us will at some point. Which is why I think it's so important that we all have a functional death literacy, because we live in community. We die in community. At some point, a member of that community is going to need the support. So many of us are going to do it and already have. That's how I learned how to do it is through Peter. I took courses afterwards, but that was the initial spark, the initial practical application of the work itself.

On facing grief

The thing about grief is whether or not you want to face it, it's going to find its way through. Either we don't acknowledge it emotionally, and it manifests itself in work, or our relationships, or addiction or some other traumatic event, or it shows up in our bodies as illness. But grief is present. Grief lives in the body and it must be accessed at some point. It will force its way. I think that since we push so many of our sad or difficult emotions away, we don't allow space for grief because it is difficult. But I don't yet know anybody who has died from grieving. It's hard, and yet there is always another day, provided we choose the next day.

On the importance of talking to your medical proxy

The first thing I encourage people to do is to think about the person who will make the decisions for them in the event that they can't. That is a health care proxy or a medical power of attorney, or just somebody whose job it is to make your decisions. Somebody who would make decisions the way that you would. Not the way that they would, not the things that they want for you, but rather what you would want for yourself. And to begin communicating those desires to your health care proxy, because the communication of that desire is going to open up a beautiful, rich conversation about what you want with your life, how you want your life to eventually end, if that is the way that it's going, and then get you started on the path toward planning for it.

On how not talking about death openly leads to fear and anxiety

I think a lot of the old way of thinking is largely responsible for the death phobia that we currently experience in today's culture and society ... where we pretend it's not happening, where bodies are whisked away to funeral homes just moments after the death has occurred. We don't take time with the body. We don't take time to talk about death. We pretend it's not happening until it's too late. That death phobia has caused a real crisis, I think, in this country and in the West overall, where we are living out of relationship with nature and with our mortality, which is ultimately a detriment to us as a culture, but also to us as individuals.

On helping people who are at their worst

People are most human when they are dying. They are at their fullest. That means their best and their worst. I think as people are approaching the end, they are grieving as well. They are grieving their own death. They are grieving all the things that they're going to leave. I think we often forget that when somebody in our lives is dying, we are losing them, but they are losing everything and everyone and leaving the only place that they've known consciously. And so that brings about a lot of emotion, and some of it is anger and frustration. And sometimes disease causes personality changes. Sometimes there is some vitriol and sometimes it's just really not pretty. ... If we can be present for their experience, which often is rooted in fear, then I think it allows us to not take it so personally and to give them some grace for what it is that they are experiencing.

On advice for caregivers

Give yourself plenty of grace. You, I'm sure, are doing amazing because this is really, really hard. ... I wish somebody had said that to me at various points. ... Next, I'd also encourage that people try to take a minute to check in with their bodies and take care of their bodies' needs. Make sure that you're eating to the best that you can ... find pockets of rest where you can. To the extent that you can, speak your needs and let somebody else support you in it. If you have a need, no matter how small it might be, speak it and open the space for somebody to support you in it. And I'd also say reach out for some support if you can, not only to a friend ... but there are plenty of doulas that are willing to support their community members at a free or reduced cost, maybe even a sliding scale. Reach out. There are plenty of resources that are available, but most importantly, if you hear nothing else, please just give yourself some grace for the process. It's tough.

On advice for the moment you sit with a loved one during their death

Do your best to stay present. Do your best to stay in your body. It can be so confronting that the desire, the urge to disassociate or to distract is huge. And yet, if there's somebody that you loved and cared for, if you could hold thoughts of love and care and honor and gratitude for their lives, that's a really beautiful way to be during that time. And also, as always, give yourself plenty of grace for however it is that you're approaching it. If there is somebody in the room that is having a bigger emotional reaction, ask for their consent before touching or interrupting it or being with it in any way. And not everybody who is crying wants the tears to stop, or needs a tissue to plug them up, or wants a hug. Maybe they want to stay present in their bodies without the imposition as well. ... It's utterly profound. Getting to witness the doorway to existence is a gift and a privilege and a huge honor. And so hopefully we can continue to treat it as such.

Sam Briger and Thea Chaloner produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Beth Novey adapted it for the web.

Copyright 2024 Fresh Air

Tonya Mosley is the LA-based co-host of Here & Now, a midday radio show co-produced by NPR and WBUR. She's also the host of the podcast Truth Be Told.
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