As the end nears, ‘death doulas’ ease the way

Among midwives and doulas, there’s a belief that no one should feel alone during life’s mystifying, sometimes terrifying, start.

A growing number of people believe death should be no different.

It’s why Dr. Jackie Yaeger, a hospice medical director in Wisconsin, began training to become what is known as a “death doula” last year.

“I’m not sure I’m comfortable with that term yet,” Yaeger said by phone recently from her home in La Crosse. “It’s really about offering wise guidance or transitional guidance, like a midwife. Maybe ‘death midwife’ is better.”

The concept of death doulas is relatively new. There are perhaps hundreds of them today — no one has a firm count — but their ranks are growing.

Just as birth doulas help clients and families understand what to expect from the birth process and offer support throughout, death doulas do the same, helping patients achieve their daily goals when a cure is no longer possible and continuing to provide counsel until death. They also help families carry on.

That may sound familiar to those with hospice experience, since hospice also provides a wide range of support for patients and family members alike. Even so, hospice care can fall short, Yaeger and others said.

Hospice nurses are sometimes thwarted by family members who still hope to cure a loved one, or who refuse to offer pain medication for fear of killing them. In other cases, family members push to medicate patients more aggressively out of their own anxieties about the dying process.

Either way, hospice physicians and nurses have limited time to tend to patients.

As a death doula, Yaeger said she could spend vastly more time with patients — keeping vigil, if needed, as their time grows short.

Tarron Estes, founder of the Conscious Dying Institute, in Boulder, Colo., trains death doulas. She said the death doula philosophy focuses on the idea of a “conscious death,” where “people have the death they really want.”

That means different things to different people, of course. Some cancer patients who are in extreme pain may wish to spend their last days deeply sedated, for instance.

But if a patient prefers less medication, she said, the doula might educate family members about common symptoms like the “death rattle,” a breathing condition common to end-stage patients that family members often find unsettling, and which family members might try to stop with medication.

“We want to make it so families have more time to be in a loving, fear-free experience,” Estes said.

There’s no roadmap for those trying to build death doula practices, given that the public has little understanding of them, and insurance companies don’t reimburse for their services.

Estes said doulas have set up shop in cities with a higher-than-average ratio of, say, new-age bookshops. (Think Boulder, San Francisco, Santa Fe, Austin, and Portland.) But she said her program is attracting former hospice nurses, massage therapists, and others from cities outside the new-age hotbeds.

Like La Crosse, Wis.

Yaeger, who is 54, said her interest in a death doula career started with training at the Metta Institute, which offers programs for end-of-life practitioners.

“I learned how to be more present with patients during this really intimate time, and it reminded me a lot of the joy I felt when I was delivering babies,” she said. “It really correlates with the death process.”

That shift coincided, she said, with her role as primary caretaker for her ex-husband, who has Huntington’s disease, and the knowledge that her three children might also contract the disease, and might need her help as well.

Yaeger said she’ll continue in her hospice position until next year, and in the meantime work out the particulars of establishing an unconventional business in a community that has little exposure to such services.

“Sometimes these horrible life changes fuel us to do things we wouldn’t ordinarily do,” she said. “You focus on what really matters, instead of status and job security and that other stuff, and you come to the point where you sort of live in the moment a little more.”