January 30, 2023

End-of-life doulas are like birth doulas –- except rather than helping someone with a birth, they guide people through the process of dying. The profession has been growing since the pandemic.



AILSA CHANG, HOST:

Talking about dying can be uncomfortable or awkward and often heartbreaking. But a growing number of people called end-of-life doulas are working to make conversations about the inevitability of death easier for patients and their families. Sara Wittmeyer from member station WFIU reports.

SARA WITTMEYER, BYLINE: Kelli McLaughlin makes her way to the couch in her Carmel, Ind., living room, using her cane so she doesn’t lose her balance. Her husband, Ryan, is nearby. The strain she is under is written all over their faces.

KELLI MCLAUGHLIN: It’s been a grueling couple of weeks; not just with the information and decisions we’ve had to make, but just that turn of the corner of, yes, I’m going to die from this.

WITTMEYER: Kelli found out in 2021 she has brain cancer. It’s glioblastoma, stage 4, the same kind of cancer that Joe Biden’s son Beau and U.S. Senator John McCain died from. After surgery a year ago, Kelli’s cancer is already back.

MCLAUGHLIN: It’s resistant to treatment. It’s like shooting BBs at a grizzly bear and thinking you’re going to do something.

WITTMEYER: End-of-life doula Angela Hershey is here today to listen, provide support and hopefully just help Kelli relax.

ANGELA HERSHEY: As long as we’ve been living, we’ve been dying. And so death doulas are really an ancient role.

WITTMEYER: Angela’s been on Kelli’s care team since August, helping the family and talking with them about the practical and emotional details of dying. Angela begins lighting incense and laying out an assortment of healing stones and flowers on a small table. Anyone can call themselves a death doula. No license is required, and no accreditation agency oversees them. However, Alvin Harmon, the head of the National End-of-Life Doula Alliance, says the practice has been steadily growing since the pandemic.

ALVIN HARMON: How people died – that was what became important; having that safe space, that whole space, people dying in a manner that felt safe to them and was important to them.

WITTMEYER: Insurance doesn’t cover doulas, so they often work on a sliding scale based on what the client can pay. Although training isn’t required, it’s helpful, and Harmon says the alliance does offer classes.

HARMON: They’re trained in just how to recognize decline, being able to say there’s some other phone calls that we can make, help people making funeral arrangements, you know, all of these things. They really, really support.

WITTMEYER: Kelli says it’s a difficult time. The youngest of her four kids, a kindergartner, doesn’t know yet that her mom is sick. Angela will help the family prepare. There’s a chart on Kelli’s bedroom wall that lists her top three priorities for the time she has left – family, friends and raising awareness about glioblastoma.

(SOUNDBITE OF SINGING BOWL THRUMMING)

WITTMEYER: Angela plays a singing bowl in the room. As the sound rises, she steps forward and rubs some perfume over Kelli’s heart.

(SOUNDBITE OF HANDS RUBBING TOGETHER)

HERSHEY: Aromatherapy.

WITTMEYER: As Kelli’s condition worsens, Angela will come more often. Kelli hopes the way she’s dying will be a final gift to her children.

MCLAUGHLIN: This alternative way of approaching it as a very spiritual and sacred crowning of your life, I think it could be very healing for you and those you love.

WITTMEYER: After Kelli dies, Angela will begin helping the family and supporting them as they deal with the grief of losing a wife and a mother. For NPR News, I’m Sara Wittmeyer in Bloomington, Ind.

Copyright © 2023 NPR. All rights reserved. Visit our website terms of use and permissions pages at www.npr.org for further information.

NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.

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