'Integrity versus despair': Hospice program trains end-of-life doulas



Susan Mercer was there to help “soften” the process of death.

For the last few months, Mercer had been getting to know her client and their family through Hospice of San Luis Obispo County’s in-home respite care program, which provides volunteer-based support to people and their families and a few hours of relief to the primary care provider.

As death got closer for her client, Mercer’s role gradually shifted from in-home support to that of an end-of-life doula, one of Hospice of SLO County’s newest offerings. As she changed hats, Mercer helped make the process gentler by taking care of several details. She moved her client out into a larger room in the house, changed them out of hospital garb into their own clothes and blankets, and put on soft music.

As guests came by, she prepared them for the interaction, encouraging them to be present and to leave any ongoing concerns or stresses from the outside world at the door.

The details were already planned out. Like a birthing doula—who works with the mother or parents to set up a plan for the birth—an end-of-life doula works with their client and the family to set up a plan for the death. She’s trained to mind certain details so others don’t have to, and to help guide the experience so it becomes more beautiful, graceful, or special.

“It can be very peaceful and easy—if there can be ease in this kind of situation,” Mercer said. “Death doesn’t have to be horrible and struggle and pain and sterile at all. It could be really quite a beautiful experience.”

As an end-of-life doula, Mercer helps clients plan ways that nurture a sense of dignity in a way that also eases the process for those around them. She’ll sit with them during their last breaths and help the family through the process; she might continue the work for six weeks to six months after a client passes.

“That’s part of the doula process, too; just because someone’s passed doesn’t mean that we disappear,” Mercer said. “It covers the whole spectrum I feel like, from the beginning to after the end.”

Locally, Mercer, who also volunteers for the in-home respite care program, is among the first of about 20 newly trained end-of-life doulas. Tracy Sturgell, director of volunteers at Hospice of SLO County, said that since that training, volunteers have helped about six people through that process. The program began with volunteers taking four-hour shifts to hold vigil for people who were in the last 48 to 72 hours of their lives but didn’t have any family close by, like homeless individuals or victims of car crashes.

On Jan. 29 through 31, Hospice will offer another training course for people interested in volunteering as end-of-life doulas. Volunteers also must take the six-week in-home respite care training course.

While the local program is young, Sturgell said they’re already seeing increased demand, including interest from large hospitals like Twin Cities Community Hospital and French Hospital Medical Center.

The end-of-life program is a relatively new concept. The program’s creator, Henry Fersko-Weiss, started it in New York City in 2003 after he saw a need while working as a field social worker. 

“I was seeing that there were many deaths occurring in a way that I thought were unfortunate or didn’t really honor the person that was dying,” Fersko-Weiss, president of the International End of Life Doula Association, told New Times. He said he saw a gap in the services that hospice provides, namely between the non-medical, volunteer driven in-home respite care, and the medical, palliative care that, locally, is contracted out to care providers.

Fersko-Weiss said that this doula program softens the dying process and works with the client and their families to create a lasting legacy through a planning process that might include creating a scrapbook, a photo album, or interviews.

He said that he was greatly influenced by both the birthing doula practice, which he became trained in, and by Erik Erikson’s approach to psychosocial stages of development—the last stage of which, called ego integrity versus despair, becomes a bridge that all those dying, young or old, must cross.

“I think that what we see in the dying process is that people avoid really talking openly about dying or what it means because they’re afraid—or the people around them are afraid—that they will be depressed or it will lead to despair,” said Fersko-Weiss, who will be leading the January training in San Luis Obispo.

This program intends to steer that process toward integrity. 

“Those legacies, in my experience, become incredible treasures for a family to help them be able to reconnect in a really deep way to that person that is now gone.”

While assisting a person and their family through this process might sound rather intense, depressing, or intimidating, Mercer, who is now working on a book about dying, said that it wasn’t the case. Instead, she said that the process, which requires that the volunteer remove their ego and provide a service for others, is quite humbling.

“It’s more humbling than I would have thought,” she said. 

Contact Staff Writer Jono Kinkade at

-- Melody DeMeritt - former city council member, Morro Bay

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