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 77-year-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 the definition has broadened, and doula programs — a combination of 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, including New York, Colorado and Texas, said Henry Fersko-Weiss, executive director of the International End of Life Doula Association, which he co-founded in 2015. A social worker with hospice experience, he first came across the idea 15 years ago, when a birth doula told him that she was also offering comfort to the dying.
“I thought to myself: ‘Oh my god, this is exactly what we should be doing at end of life,” said Fersko-Weiss, who has since authored a book, “Caring for the Dying: The Doula Approach to a Meaningful Death.”
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. Fersko-Weiss helped create the doula program at Valley Home Care in Paramus, N.J., which assisted the Gutenstein family.
“Nobody should die alone,” said Ellen Rand, a longtime hospice volunteer, blogger and health journalist.
While most hospice workers focus on the physical needs of the dying, doulas offer emotional and spiritual support. They often help the dying reflect on life’s meaning.
To find paid doulas, Fersko-Weiss’ association one day intends to post a list on its website, inelda.org, with contact information for member doulas across the country.
Trained and certified nonvolunteer doulas cost $40 to $100 per hour, Fersko-Weiss said. At the moment, medical insurance does not cover paid doula services, he said. 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.
Knowing what they know now, Bob Gutenstein said they would have happily paid for the services if volunteers were not available. It was, after all, the doulas who recognized and alerted both Lisa and Bob that Ellen’s death was imminent.
“We wouldn’t have had this confirmation without them,” Silvershein said.
It gave Bob — who had been dozing at his wife’s bedside — his final moments with his wife, which he might have otherwise missed. After the doula alerted him to Ellen’s last breaths, “I reached over, and she gave me a squeeze,” he said, “and, then, she was gone.”
Tribune News Service