End-of-life doulas comfort those nearing death 1

Alice Higgins speaks to the Senior Umbrella Network about a new end-of-life doula program she coordinates.

In sports, the follow-through is as important as the swing. You can’t drive a golf ball to a hole-in-one unless you complete the full motion.

In matters of mortality, as well, finishing strong can make a big difference. A new type of healthcare professional, the death doula, has emerged to help people complete their lives in as much a manner of their own choosing as possible.

“Everyone wants a good life. What’s a good death?” said Alice Higgins, doula program coordinator at the Parker Jewish Institute for Health Care and the Nerken Center for Research and Grants.

A doula’s answer to that question: making a plan and, to the extent possible, implementing that plan. Does the patient wish to create a scrapbook of their life? Spend time looking back, preparing projects and keepsakes for when they’re gone, or perhaps simply continuing to enjoy favorite pleasures and routines? What physical and spiritual comforts do they hope for when the very end arrives?

Higgins made her remarks in late April at Castle Senior Living in Forest Hills. The event was sponsored at the monthly meeting of the Senior Umbrella Network, an organization of professionals from NYC and Long Island who serve older adults and the disabled.

Parker Jewish’s free program, staffed with heavily vetted and trained volunteers, and funded by a grant from The Fan Fox and Leslie R. Samuels Foundation, is available through its hospice program and assisted living facilities. Higgins is on a mission to get more families and institutions to participate.

The origination of death doulas, which help individuals and their families to take control of the process of death, to the extent possible, is credited to Henry Fersko-Weiss, a licensed clinical social worker who used the model of birthing doulas to create the first end-of-life doula program in 2003. As in birth, end-of-life doulas provide emotional, educational and sometimes spiritual support.

The movement is part of a broad shift in how modern society approaches death, including acknowledging when the end is approaching and ceasing possibly futile treatments and instead, surrounding oneself with family and loved ones and not dying, perhaps isolated, in a hospital. The death of former first lady Barbara Bush in April is an example, as the family announced several days before her passing that Mrs. Bush had ended treatments and was accepting only palliative, or “comfort” care.

Doulas differ from other healthcare professionals in that they are a compassionate presence, Higgins said, not hands-on helpers. Doulas don’t give massages or therapy, but they might help arrange for a masseuse or counselor. They work with those in hospice or palliative care, which focuses on preventing and relieving suffering as opposed to cure-seeking.

Higgins gave the examples of a doula who correctly guessed than an older African-American woman who was no longer able to communicate might enjoy hearing Gospel music, and another, a Muslim doula, who used a search engine to find Catholic prayers in Tagalog as a Philippine Catholic patient lay dying.

Much of the work is helping patients and their loved ones start conversations.

“This whole third act of life, we don’t like to talk about it,” Higgins said. “We all end up in the same boat. You would think we would do it well.”

Higgins told the story of a grandfather who wanted to see his grandchildren as he was dying. But the other adults in his family felt that they needed to protect the children from exposure to their grandfather’s death. With the help of the doula, the family held planned, structured visits of children in pairs, an older child with a younger one, to give the grandfather his wish.

“Now those children came out the other end of this experience totally whole, knowing they had an impact,” Higgins said.