Alive's annual Memorial Butterfly Release
Heidi O’Neil was called into Nashville’s Alive Hospice to sit with a homeless man — a man she didn’t know — in his final moments. He was unconscious, lying in bed. He resembled Charlton Heston, according to O’Neil. Suddenly he opened his eyes, a translucent green color.
“And then he took a breath, and he died,” says O’Neil. “And I cried for two days. I spent 20 minutes with him.”
O’Neil has been an end-of-life doula, also known as a death doula, for four years. She volunteers at Alive, and her workdays vary. She’ll meet with a concerned family one day and accompany a dying stranger in their final moments on another. Sometimes she’ll talk to someone and learn their life story. She grows attached to Alive’s patients quickly, she says, and she’s both sad and honored to witness them passing away — it’s a deeply intimate moment for her. She felt drawn to work with the aging and dying long before taking on the role of an end-of-life doula.
Much as birthing doulas help new life enter the world, end-of-life doulas help people depart. There are organizations that certify doulas, though hospices like Alive often still require a volunteer-screening process.
“For many it comes naturally to them,” says Renee Wisby, director of volunteer services at Alive. “They have this comfort level of being with somebody who is within 24, 48 hours of death.”
Doulas and other volunteers keep patients company during the “active dying” process — that is, the final minutes of someone’s life — looking out for the physical signs of dying, like changes in breathing, talkativeness or discoloration of hands and feet. They may run errands for patients or assist families in housekeeping, or pay visits to grieving relatives. They may speak with patients about their life stories, recording their conversations on CDs or flash drives for surviving family members. While some hospice volunteers don’t work directly with the dying — instead helping on the administrative side, stuffing envelopes and making phone calls — end-of-life doulas may work with patients over longer periods of time or have a broader scope of responsibilities. Some are even learning to turn their services into a paying career.
Founded in 1975, Alive was the third hospice established in the country. Alive cares for the majority of its patients in their own homes, but it also operates residences with hospice services. The nonprofit also hosts special events like an annual memorial butterfly release, art therapy sessions and visits from musicians and therapy animals (including a mini horse). They also offer counseling services to anyone who has lost a loved one. Alive’s founders, Dr. David Barton and the late Dr. John Flexner, were inducted into the Tennessee Health Care Hall of Fame this month.
Medicare began funding hospice care in the 1980s. When doctors tell someone they have six months to live, they’re eligible for hospice as long as they don’t seek any curative treatment. In hospice, they still receive treatment from a multidisciplinary team — which can include a physician and a chaplain — to reduce pain and manage symptoms. But studies over the past decade have suggested that hospice and palliative care — which helps the seriously ill deal with pain and discomfort — remain underused despite improvements in access. Geography and race can also contribute to hospice accessibility. Northern hospitals are more likely to have palliative care services than Southern ones, and white Americans are more likely than African Americans to take advantage of hospice.
“We educate all the time and try very hard to help people understand what hospice is and when they’re eligible for it,” says Wisby. “It’s not us … providing some sort of hastening of death. It’s more of a companionship along the road.”
“[Death] should be not a problem or scary thing to talk about,” says Janie Rakow, co-founder of International End of Life Doula Association, an organization that trains and certifies doulas. “The more ... people incorporate it into their everyday life and not steer away from it, the more it just becomes commonplace and not a big deal and easy to talk about.”
Rakow, who began her work as an end-of-life doula 10 years ago, says there seems to be a growing movement to understand and accept death. She points to the emergence of events like Death Cafes, which encourage discussions about the end of life. There’s been a growing so-called “good death” movement over the past few years, pushing back on Western culture’s aversion to death. The large, aging baby boomer population — which some have referred to as a “gray tsunami” — is another big factor, with more people seeking to control the quality of their death. The International End of Life Doula Association’s training courses have also grown, with events across the country attracting more than 60 people at a time.
Alive also hosts an annual symposium about end-of-life issues and its role in health care, family matters and spirituality. November is National Hospice and Palliative Care Month, and this year’s symposium will be held Nov. 7.
Of course, not everyone waits until they learn they’re dying to consider a good death. That’s why some doulas prefer the term “end-of-life.”
“So much can happen in the planning part, not only when the person’s dying,” says Rakow. “There’s so much beautiful work that can be done all along the way.”
A previous version of this story stated Alive offers palliative services at their residencies. However, they actually offer hospice care services. We regret the error.
