'We Only Die Once': East Hampton Woman Joins Growing Number of End-of-Life Doulas

When Susan Stout first heard the phrase “end-of-life doula,” it piqued her interest — but she wouldn’t think about it again until three years later.

It was April 2020, and she was dressed from head to toe in personal protective equipment, finally able to stand next to her 95-year-old father, Robert, at his bedside in Cape Cod Hospital as he battled COVID-19.

At that time, this was more access than so many people in her position had, Stout recalled last week from her home in East Hampton — and, still, it wasn’t enough.

“I was just really hit by how we couldn’t be with him,” she said. “We couldn’t do what we wanted to do, like just hold his hand, comb his hair, and tell stories and laugh — all of those things — because we weren’t allowed to be in the hospitals at that point.”

After her father died, Stout found herself thinking about how, pandemic notwithstanding, “we just don’t do death very well in this country,” she said. “We don’t like to talk about it. We don’t like to think about it.”

And so, she decided to be the change she wanted to see.

Two years ago, Stout earned her end-of-life doula certification through Lifespan Doulas and a National End-of-Life Doula Alliance proficiency badge, and has been working with the terminally ill and their families ever since, offering them nonmedical, holistic support and comfort in their final days.

“We only die once,” she said, “so it should be as beautiful as we can make it.”

Death doulas, in broad strokes, help the terminally ill reach a place of peace with dying — tending to any duties that medical personnel do not.

Since the pandemic began, the popularity of death doulas has only grown. At the University of Vermont, more than 600 people enrolled in the end-of-life doula program in 2021 — as compared to fewer than 200 during the program’s inaugural year in 2017 — and the National End-of-Life Doula Alliance’s membership has increased sevenfold, jumping from 200 participants in 2019 to almost 1,450 to date.

“I feel like no one knows the value of an end-of-life doula until they can talk about their end of life, just the way no one thinks about a birth doula until you’re pregnant. It’s like your own personal cheerleader,” Stout said. “There’s so much support around birth and so much celebration around it, and joy and conversation. And then we get to the end of our life, and it’s crickets.”

In a way, Stout said she also considers herself to be a cheerleader. Typically, death doulas step in either very close to end of life or after someone receives a terminal diagnosis. And while loved ones often dive into research on the disease, she holds space for everything else.

“A person with their terminal illness, sometimes, can get forgotten,” she said. “Sometimes, even doctors, because they’re so focused on the physical body, can lose sight of the holistic experience that’s happening when someone is facing their end of life.”

End-of-life doulas, who do not provide any medical care — “I can’t even take somebody’s temperature or their blood pressure,” Stout said — address the mind, body and spirit by offering guidance and education, logistical and practical assistance, and act more as a “calming witness,” she said.

This can include accompaniment to appointments as an advocate, note-taker and hand-holder; companionship, from sitting, walking and reading to singing and dancing; light house cleaning and döstädning, which is Swedish death cleaning; Reiki and healing techniques; advanced care and vigil planning; and bereavement support.

“Being an outside observer, it’s easier for me to be able to think of those things and relieve the family and the dying of having to think about that, because they don’t want to think about that,” Stout said. “They just want someone to help them navigate it.”

Her care extends to the loved ones of the terminally ill, as well, who often have a separate set of needs, she said. She helps organize family and relationship support, and offers respite for caregivers.

“I’m not afraid of holding the hand of someone who is dying,” she said. “I’m not afraid of seeing them after their spirit has left and their body is still there. I’m not afraid to talk to people about the things that they want to talk about when they’re facing their own end of life. I’m not afraid of having these conversations.”

One of Stout’s clients simply wanted to talk about the fact that she was dying — “She needed to make it real, she needed to say those words,” Stout explained — but those around her weren’t ready to hear it.

So, Stout would sit with her. And they would talk, about everything.

“There’s an incredible intimacy that is established. It’s very deep and it’s very profound. It’s like nothing that I’ve ever really experienced — and it’s hard,” she said. “I really fall for these people myself. You’re living until you’re not. So I want to treat everybody as if they’re living until their final breath.”

In their last days, Stout often encourages her clients and their loved ones to tie up any loose ends and to make amends, no matter what that looks like.

“I like to tell people to have the conversations now. Don’t even wait until you have a diagnosis,” she said. “Tell the people in your life how you feel about them, because then you get to say it as many times as you want.”

About a year before her father died, Stout found herself sitting by his bedside at the hospital, this time while he had pneumonia. And, unexpectedly, she began to tell him how much she loved him and how great of a dad he’d been. Any embarrassment and shyness faded away, she said, followed by “the most incredible week of conversations that we’ve ever had.”

“As soon as I started saying the words, and the look on his face hearing that, I know, when he was alone in that hospital room, and he was starting to transition, I know he felt loved and valued, and he knew, 100 percent, his place in our family,” she said. “And that really sticks with me — and I really, really want everybody to have that.”

Over the past two years, Stout’s relationship with life, and death, has changed. This work has activated her curiosity, she said, and in some ways, it has given her a great deal of comfort to imagine what comes next.

“It has made me love every day, even the hard days,” she said. “I live constantly reminded of, this is not forever. And so it’s really been a game changer in the way I wake up in the morning.”

On the East End, Stout has spoken publicly about the work she does — her next talk will be May 24 at 5 p.m. at the East Hampton Library — and she is in the process of starting a “Death Cafe” in conjunction with the Unitarian Universalist Congregation of the South Fork in Bridgehampton.

“I’m super excited about getting that started,” she said. “I’ve done a number of them online, and it’s amazing how many people just want to show up in a space and just be able to talk about it.”

The Death Cafe model, developed by Jon Underwood and Sue Barsky Reid, and based on the ideas of sociologist Bernard Crettaz, has spread quickly across North America, Europe and Australia — with over 15,000 gatherings hosted in 83 countries since September 2011.

People gather not as a bereavement group, but rather a discussion group, Stout explained. They eat cake, drink tea and talk about anything that falls under the umbrella of death — creating a powerful movement in a death-denying culture, she said.

“I think it’s just great to see the word ‘death’ out there,” she said. “As many opportunities as we can have it appear, the less frightening the word becomes. It can just be a word.”