‘Death doula’ provides comfort and support to the terminally ill on their final journey

When people first meet Tiffany Johnson, say at a party, one of two things tends to happen after she explains her line of work: They look for an excuse to leave or they share some of their most personal life details.

Johnson is a death doula. Death concierge is another way to describe what she does.

Her job is to help the dying (and their loved ones) navigate their final months and weeks of life. She also helps healthy people who wish to prepare for the inevitable. Not with medicine, but with almost everything else — from putting together a videotaped message for those left behind to deciding who should be in the room at the very end.

And yes, “death” is the actual word Johnson uses, depending on her audience.

“Sometimes [the word death] shuts people down, and that’s the last thing I want to do,” said Johnson, a former professional roller derby player who looks a decade younger than her 49 years.

Johnson has taken on a more public role of late, advocating for the so-called right-to-die legislation, which Gov. JB Pritzker signed into law Dec. 12. The law allows someone 18 or older to request a fatal medication; to be eligible, the person must have been diagnosed (by two physicians) with an illness expected to lead to death within six months.

Among other things, physicians are required to confirm that a person requesting the medicine is “of sound mind.” And the physicians must also tell the patient about other end-of-life options. Patients must administer the life-ending drug themselves.

The law is controversial, opposed by many religious leaders and disability rights activists, who see it as legalized physician-assisted suicide.

“This is why I get so frustrated,” Johnson said. “People say, ‘assisted suicide.’ It’s not suicide. … Folks already understand that their lives are shorter than they want them to be. These are not individuals who want to die. Their health has changed to the degree that they no longer have a prolonged future ahead. And they want to have some sense of autonomy about how those last days look.”

End-of-life choices are important, Johnson said, because most of us won’t die in an instant.

“Dying is a process. It isn’t just a thing that happens,” she said.

And that’s where Johnson comes in. She charges $80 an hour for her services, but also says she has never turned someone away who can’t afford to pay.

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Johnson, who lives in Oak Park, grew up in Wisconsin on the shores of Lake Superior. She was in sixth grade when her father had a “massive” stroke.

“I watched my dad … slowly dying for seven years,” she said.

The experience didn’t push her to hide from death; it helped her to embrace it.

“So this has been a lifelong dream for me to do this work,” she said.

After spending many years as a massage therapist, Johnson got certified as a death doula in 2018. There’s no national standard for the profession, and the industry is largely unregulated. The National End-of-Life Doula Alliance, the largest professional membership organization representing death doulas in the United States, had approximately 1,850 members as of late 2023.

Certification typically includes learning how to spot the signs and symptoms of dying to understanding the applicable laws if, say, your client would like a green burial or a home funeral. "It’s not medical training or licensure,” Johnson explained. “Death doula certification is non-clinical: learning what the dying process can look like so I can support individuals and their loved ones to honor their process, culture, even faith … and communicate well with hospice/medical teams.”

Johnson also has a fledgling side business weaving willow caskets in a greenhouse in her backyard (she charges $3,500 per casket). Until needed, the casket “fits at the end of the bed and you can put linens in it,” she said.

* * *

One blustery day in early December, Johnson worked with Gina Orlando, 73, a Forest Park woman living with stage-four breast cancer. They sat opposite each other in armchairs in Johnson’s home, originally a mail-order Sears kit house in the Dutch Colonial style.

A lifelong yoga practitioner, Johnson sat crosslegged, gently taking Orlando’s hand before the start of the session.

The lights were dimmed, but the house doesn’t feel funereal. It is filled with objects from Johnson’s overseas travels, including to her mother’s native South Africa. The two dozen or so handmade urns in Johnson’s sunroom look more like art.

Johnson invited Orlando to share what’s on her mind. Orlando said she is struggling to de-clutter so her possessions don’t become a burden to her husband after she dies.

“We all have stuff. The humbling thing at the end of life is you can’t hold on to anything. What do you give away?” said Orlando, who has taught holistic health courses at DePaul University.

“You can’t take it with you,” Johnson said softly.

“This is precious stuff to me, but it’s on its way to the recycling.”

“Your legacy lives through the work you’ve shared already. It doesn’t live in the papers only.”

The conversation shifted to the meaningful objects Orlando might want in her home when she’s near the end. Johnson asked if her husband, Marty, knows who will need to be called at that time?

He’s very stressed, Orlando said.

“Marty — is he interested in having a conversation with me … so that when times are hard, he has maybe a comfort with me being present?”

“That’s a beautiful idea,” Orlando said.

Would Orlando consider aid-in-dying medication if the pain became too awful? I asked.

“I’m putting my focus on learning natural ways of letting go,” she replied.

Johnson stepped in.

“Gina is with us here now, and we don’t even know if Gina will be around to choose that option,” Johnson said, noting that the law doesn’t go into effect until Sept. 2026.

* * *

Doulas aren’t new; the term comes from the Ancient Greek word for “woman’s servant.” But the specialization of professional doulas for the dying has only been around for the past 20 years or so, said Patty Brennan, a Michigan-based doula trainer and author of “The Doula Business Guide Workbook.”

“It’s the aging of the Baby Boomer group,” Brennan said. “There’s maybe more of a tendency in that generation to look for an alternative way of doing things. … Also realizing there are gaps in the system, where the family is left on their own with a lot of that care.”

Johnson said families are often shocked at how little guidance is typically offered after a loved-one receives a doctor’s terminal diagnosis.

“Those conversations aren’t necessarily taught in medical schools as much as they should be,” she said.

And so Johnson has those conversations — with prospective clients, strangers she meets on airplanes, college students preparing to become social workers, community groups that want to learn more about Illinois’ new right-to-die law.

But doesn’t all this talk about death, day after day, weigh on her?

No, she said.

“Yes, it’s big and hard and grief-filled and we’re losing something. But also, doesn’t that make the life we have more precious? For me, I have greater gratitude,” Johnson said. Most of the time, she’s not in the room when a client dies. But she said she would not shy away from the opportunity.

“It’s such a privilege and humbling because, just like if you were lucky to be there for the birth of your children, it’s that same idea of a big shift in the world,” she said. “The coming into or the departure — it’s just kind of magical. Once you experience it, you just feel a little bit more connected to all life and it all kind of, in a still moment, makes sense.”