USA TODAY International Edition
Coming full circle, doulas now cradle the dying
Care can make last days of life easier for patients, families
As Ellen Gutenstein lay in her bed at home, dying from lung cancer that had metastasized in her brain, a heart- wrenching Mother’s Day card arrived from her granddaughter. Neither Ellen’s daughter nor her husband felt they could read it to her without breaking down.
Fortunately, a volunteer from the local hospice’s doula program was on hand to help the then- 77year- old resident of Ridgewood, N. J., comfortably die at home. She picked up the letter and read it with compassion.
“I’m not sure I could have done that,” said Lisa Silvershein, the daughter who helped arrange a more comfortable end- of- life experience for her mom in 2014. “The doula not only made my mom’s life easier, she made our lives easier, too.”
Doulas, an ancient Greek term that loosely means a woman helping another woman, have long comforted women during birthing. But doula programs — which use male and female volunteers and paid certified staff — are increasingly helping elderly patients fulfill wishes to die at home rather than in hospitals or nursing homes.
End- of- life doula specialists are now in at least a half- dozen states, said Henry Fersko- Weiss, executive director of the International End of Life Doula Association, which he co- founded in 2015.
In 2003, he set up what he says was the nation’s first end- of- life doula company to train people to care for the dying. He helped create the program at Valley Home Care in Paramus, N. J., that assisted the Gutensteins.
The doula association trains and certifies professional end- oflife doulas. Certification requires 22 hours of classes that cost about $ 600 for those who hope to make a career of it. Volunteer doulas complete 18 hours of training, with costs typically paid by a hospital or hospice.
The end- of- life doula movement is supported by the National Hospice and Palliative Care Organization.
While most hospice workers focus on the physical needs of the dying, doulas offer emotional and spiritual support. They help the dying reflect on life’s meaning. They conduct comforting rituals, including light touch and holding hands. They will read to patients or play favorite music. Doulas also explain signs and symptoms of dying to the family and help them know what’s coming next.
Shortly after Gutenstein, a Valley Hospice volunteer, was diagnosed with incurable cancer, the hospice connected her with Fersko- Weiss. It turned out to be just what the family needed. In her final days, approximately eight different doula volunteers assisted Gutenstein and her family, with one always by her side.
“They ended up making our lives easier — and hers,” said Gutenstein’s husband, Bob. “All along, the doulas helped us to know what to expect next — which is something most of us didn’t know.”
This included planning for Gutenstein’s final days, which the doula association refers to as “the vigil.” The doulas helped create a “vigil plan,” which detailed who should be in the room at her death and the sounds and smells she wanted around her.
Early on, Gutenstein’s volunteer doulas recommended that the family assemble a memory book. “My mom loved the idea,” recalled Silvershein. The book featured photos, letters, writings and illustrations.
There are things end- of- life doulas can’t do — at least in most hospital or hospice settings. Because they aren’t nurses, they aren’t typically permitted to care physically for patients. But in private homes, doulas and families agree on acceptable tasks, said Fersko- Weiss.
Perhaps the most important thing doulas did for the Gutensteins was constantly make everyone in the room — particularly Ellen — more comfortable. “It was the doula who kept her positive,” said Bob Gutenstein.
The best way to find a volunteer end- of- life doula is via a patient’s local hospital or hospice, said Fersko- Weiss.
Trained and certified nonvolunteer doulas cost $ 40 to $ 100 per hour, Fersko- Weiss said. Medical insurance does not cover paid doula services. But just as some insurance companies are starting to offer partial reimbursements for birth doulas, he predicts that families may eventually receive some reimbursements for end- of- life doulas.
The doulas recognized and alerted the family that Ellen’s death was imminent.
It gave Bob — who had been dozing at Ellen’s bedside — his final moments with his wife. After the doula alerted him to Ellen’s last breaths, “I reached over, and she gave me a squeeze,” said Bob, “and then, she was gone.”
“All along, the doulas helped us to know what to expect next — which is something most of us didn’t know.” Bob Gutenstein, whose wife, Ellen, died in 2014