Legacy therapy helps dying patients tell their stories
[M]aureen Cleveland inhaled deeply as she recalled the scent of the fresh tomatoes that her father brought home each summer from the cannery where he worked. The thin 60-year-old woman, who’s battling late-stage breast cancer, talked for an hour in her Carmichael home, smiling almost constantly as she described picnic days with her family of seven and other scenes from her Bay Area childhood.
Visiting hospice chaplain Connie Johnstone listened intently from the foot of the bed, egging Cleveland on with questions and scribbling down the occasional quote.
Johnstone, who works for Kaiser Permanente in Sacramento, has studied the art of conversing with the dying. She calls it life review; others in her field call it legacy therapy or dignity therapy. The point is coaxing out a patient’s most intimate memories and threading them into one last story, often to be recorded for family and friends. For aging baby boomers and others struggling with terminal illnesses, the therapy offers a new way to ease the pain of facing death.
“It’s a real important thing to have a witness to one’s life toward the end,” Johnstone said in her slow, Southwestern drawl. “It’s to have it confirmed to us. If we say it, and we get to look at it again, it gives it substance, space, importance.”
Dignity therapy has gained traction in recent years as hospitals, hospice organizations and palliative care centers look for drug-free ways to pacify patients. It involves multiple 30- to 60-minute question-and-answer sessions, usually conducted by a psychologist, social worker or trained chaplain.
Dr. Nathan Fairman, a UC Davis palliative care psychiatrist who has written about interventions for the dying, said life review stands out from other types of talk therapy because it produces a concrete document that helps the patient reflect and find closure.
“The therapist draws out the parts of their story that have to do with meaning and purpose and relationships so that they can leave the legacy they want,” he said. “You’re looking for the themes that will focus the patient’s attention on the sources of meaning in their life.”
Surrounded by books and photographs in her house, Cleveland spends her remaining days reading, taking in sun from the backyard, watching her young nieces play and telling stories to whoever will listen, she said.
“I’m pretty social, so anyone who walks in here gets stuck talking to me,” Cleveland said during a recent visit. “You need to share what you know, or it’ll disappear.”
Johnstone chooses her questions wisely, often revisiting themes from previous sessions. She remembers little details about her patients’ lives — where they were born, how many children they have, their mothers’ names and occupations. The small talk helps her segue into more difficult topics, such as estranged family members or traumatic experiences.
While it’s usually too late for righting wrongs or seizing missed opportunities, speaking to a stranger can help patients accept the past and feel a sense of calm near the end, Johnstone said.
“Everybody carries some kind of regrets,” she said. “You can’t put the genie back in the bottle. Once you’ve brought something out, it can’t keep recycling in the same way.”
Many patients feel isolated toward the end of life, and are reluctant to lean on loved ones for help, Fairman said. Between 15 and 20 percent of terminally ill patients are diagnosed with major depression, according to the American Psychological Association.
In a clinical trial of 100 terminally ill patients who received dignity therapy, 68 said they felt an increased sense of purpose after the treatment and 47 said it increased their will to live. Eighty-one patients said the intervention was helpful to their families.
“They feel if they share too much with loved ones it will burden them, so they withhold sharing things,” Fairman said. “In a situation like that, it can be really helpful to have someone who is trained in really good listening skills, who can tolerate the suffering people experience when they get close to the end of life.”
Cleveland, who does not have children, hasn’t worked out exactly how she wants to be remembered yet, but with Johnstone’s help she’s piecing it together. During a recent session she brought up a story she hadn’t told in years — one that took place at a school lunch table, some time in the late 1960s.
“There was this family in the neighborhood and they were poor, and they had nothing to eat but ketchup soup,” she said. “I couldn’t believe it. So I shared some of my lunch with them. It was how we were raised. If someone needed something, that was it. You didn’t say no.”
Many years later, Cleveland became a representative for a produce packing company, regularly visiting Central Valley orchards to take inventory and question the farmers about workers’ living conditions.
“They were living in the worst slums you’ve ever seen,” Cleveland said. “I always got in trouble for asking about that, but I kept asking anyway.”
Johnstone kept scribbling. Cleveland explained how her career was interrupted by a Hodgkin’s lymphoma diagnosis in her 20s, and how she spent years as a caregiver for a sick sister, mother and aunt.
During the next session, the pair will paint a cover for Cleveland’s written story. The title word, they’ve decided, is “Survivor.”
“I’m seeing a connection here,” Johnstone said. “I think this is a source of a lot of your resilience.”
Technology has helped spread storytelling as a form of healing. StoryCorps, a nonprofit podcast network, launched its legacy initiative in 2010 to focus on people with serious illnesses. They visit hospitals and clinics throughout the U.S. to train providers on how to capture end-of-life conversations on cell phones. In California, the legacy project partners with Hinds Hospice in Fresno and the Zen Hospice Project at the University of California, San Francisco.
Perri Chinalai, director of community training for StoryCorps, said she believes storytelling helps build a bridge between patients and physicians that can ultimately improve care.
“This is an opportunity for people to talk about themselves outside of their diagnosis,” she said. “It allows for a more holistic understanding of who people are. … It could create a culture of storytelling that enhances the services.”
At Hinds Hospice, storytelling sessions are offered to all visitors, said community outreach liaison Jill McCarthy. Staff can conduct the interview sessions and use the StoryCorps app to archive stories in the Library of Congress’s American Folk Life Center.
Over the years, McCarthy and her staff have heard incredible stories, she said. She remembers an elderly pilot who described one of his first flights over Alaska, as well as an indigenous California man who wanted to record himself speaking in his native Mono language. But mostly, she works with families who just want to get to know a loved one better.
“If the person dies before they get to share their story, those stories go with them,” McCarthy said. “It’s a chance for families to talk about things they’ve never talked about before, to express what they mean to one another. They don’t have to be these grandiose things. It’s the little things that for generations have been handed down.”
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