Introduction to Death Doulas
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.
The Role of a Death Doula
“Dying is a process. It isn’t just a thing that happens,” said Tiffany Johnson, a “death care concierge” who provides non-medical support to help terminally ill patients transition to the end of life.
Victor Hilitski/For the Sun-Times
Advocacy for Right-to-Die Legislation
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 Importance of End-of-Life Choices
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.
Personal Experience and Certification
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. 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.
Supporting Clients
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. 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.
Victor Hilitski/For the Sun-Times
The Growing Need for Death Doulas
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.”
<img class="Image" alt="Death Doula Provides Comfort as Illinois Law Shifts End-of-Life Care." srcset="https://cst.brightspotcdn.com/dims4/default/d589274/2147483647/strip/true/crop/6048×4032+0+0/resize/840×560!/quality/90/?url=https%3A%2F%2Fchorus-production-cst-web.s3.us-east-1.amazonaws.com%2Fbrightspot%2F35%2F68%2F4483b31b428f8f28ddffcaec597b%2Fdeathdoula-12xx25-37-1.jpg 1x,https://cst.brightspotcdn.com/dims4/default/44b769a/2147483647/strip/true/crop/6048×4032+0+0/resize/1680×1120!/quality/90/?url=https%3A%2F%2Fchorus-production-cst-web.s3.us-east-1.amazonaws.com%2Fbrightspot%2
