— Woman finds support in end-of-life doula program

By Brian Arola Mankato

Jane Schostag doesn’t shy away from discussions about death, even her own.

The Skyline woman, a longtime English teacher at Mankato West before her retirement, has terminal cancer.

Rather than avoiding the topic of her own mortality, Schostag has been spending what will likely be her final months reflecting on and preparing for what she calls her “farewell journey.”

An end-of-life doula is helping guide her.

“People have doulas when they have babies because having babies is a lot of work, it’s stressful,” she said. “Well, so is dying, so you got a coach on one end and a coach for the other.”

End-of-life doulas serve as nonmedical companions offering support and guidance on death, sometimes complementing medical services provided by hospice care. A doula’s specific duties vary depending on their background and the person’s needs, but one important quality they share is a willingness to acknowledge and talk about death.

Having doula Mary Beth Trembley with her during this stage in life, Schostag said, is like having a “caring, informed friend” willing to tackle the topic head-on.

By putting death on the table, the hope is people live their final days to the fullest instead of awkwardly avoiding any talk of what will inevitably happen.

“We should treat it as a sacred time and support that process,” Trembley said. “People think it’s morbid to talk about death and dying, but we’re all going to die. It’s part of life.”

Trembley is one of several trained end-of-life doulas in the Mankato area — she received her training through the Conscious Dying Institute in Boulder, Colorado. These doulas meet up monthly to support each other and share resources.

The services can be available on a volunteer basis or paid depending on the recipient’s circumstances.

When they find out about someone in need of a doula, they consider which of them would be the right fit. Sometimes a person will meet with multiple doulas, such as when Trembley introduced colleagues to Schostag because she knew they’d get on well.

Their end-of-life doula network in the Mankato area was just getting up and running when the COVID-19 pandemic started, which made connecting with more people difficult.

Now, as the network looks to work with more people, Trembley and Schostag hope sharing their experiences as doula and recipient leads more people to become doulas and more people to seek out the services.

Diagnosis

Schostag found out she had a malignant lesion on her tongue about two years ago at age 76. In her memoir, the tools for which her daughter, Lindsay, gifted to her a couple of Christmases ago, she described the cancer as making her sound like she’s been “hitting the margaritas.”

An oral surgeon removed the cancer, but she next faced a decision about whether to start radiation treatment. She remembers hearing in detail about how the treatment could have debilitating, painful impacts on her head.

Having already enjoyed a full life, she chose to prioritize the quality, rather than quantity, of the rest of her life. It meant forgoing radiation.

“Even if the cancer returns,” she wrote, “I do not think I will choose to do radiation or chemotherapy. At my age, I fear sickness or debilitation more than death.”

If she were younger and still had children to raise, her decision might’ve been different. She feels gratitude for the good run she’s had — from a fulfilling professional career in education to advocating for children in the court system to being a wife to husband David, a mother to Lindsay and a grandmother.

She notes she isn’t saying others should go the route she went, but thinks people who’ve lived abundant years should examine their options before immediately proceeding with unpleasant, possibly debilitating treatments.

To her, doing so risks “outliving our quality of life.”

In July, Schostag learned she had a swollen lymph node near her surgery site. A biopsy on the node misdiagnosed it as negative for cancer, giving it three months to grow before confirmation of the cancer’s return was revealed by another biopsy in October.

By then, the cancer was rapidly spreading. She again elected to forgo treatment.

Kindred spirit

Schostag was already familiar with the doula program through past presentations and had it in mind to seek out when she needed it. If people need the guidance of counselors before going to college and other important steps in life, she said, why not seek out guidance before death?

“Why not a person who’s an expert at making the best of what you have left, which is really what I see doula work as being,” she said.

She and Trembley knew each other through their church, Unitarian Universalist Fellowship of Mankato. The two met, along with David, in October to review what doula services entail and set a plan for regular meet-ups.

Having family involved and on board makes it easier, Schostag said.

“I think it’s good for families to talk about it,” she said. “We’re gonna deal with the preparations that need to be done. We’re gonna talk about what our thoughts are and what we’re scared of.”

Family and friends otherwise might not know what to say to someone facing death, creating an awkwardness of avoidance. Embracing the subject brings it to the forefront, creating space for people to say what needs to be said before it’s too late.

“It’s interesting what your demise does to other people,” Schostag said.

Doulas can help people work through what to say to their family and friends, Trembley said. They try to bridge gaps, whether the gap is a needed conversation with family or establishing a will and advanced directive.

“When you’re with somebody who likes to talk about death and dying, it’s a different conversation,” she said.

Trembley joined Schostag on her medical appointments, offering another set of ears. Although not all doulas have a medical background, Trembley’s career as a psychiatric nurse proves helpful.

The doula’s work doesn’t necessarily end when their companion’s life ends. They can be a source of comfort to the surviving family afterward.

A grieving person sometimes receives an initial outpouring of support from their social circles before people move on with their lives. Trembley sees potential in doulas continuing to offer support for as long as the surviving family needs it.

Trembley and Schostag think of themselves as kindred spirits when it comes to outlooks on life and death, which furthers their bond. Trembley described Schostag as an “amazing person” whose wealth of life experience will educate people about an important resource.

“By talking openly about death and dying and doula work, she’s helping,” she said.

Schostag’s journey took its latest turn this week when she found out her cancer had spread to her hip area. In one sense, she said after finding out, she felt “very lucky that I went as long as I did without pain.”

Her hospice team has been wonderful, she added. So has her family, friends and doula.

Shortly after starting with Trembley, someone asked Schostag about her doula.

“She’s great,” Schostag recalls responding. “She’s really into death.”

In a society so averse to conversations about death, she said, having a doula on her journey makes the end less lonely.

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