Nudging death into the open, on the air

For NPR's series on death and dying, correspondent Howard Berkes discusses mortality with John Holden, who raises cattle and horses along the Clark Fork River in Clinton, Mont. (Photo: Sean Collins.)

NPR began its End of Life series Nov. 3, 1997. This article about the project was published in Current four months earlier, on July 7, 1997. By Jacqueline Conciatore Say you're about to experience the most terrifying, most significant event in your life. And when you try to talk about it, because you need to talk about it, people get squirmy. Or freeze up. They change the subject, or dismiss your overture. Death and dying is a subject tracked by its own shadow of unease. Reporters have little difficulty treating policy-centered stories--the debate over physician-assisted suicide, for instance. But personal stories are reported less often. How do people die? What conversations do they have with family beforehand? How do families adjust? To fill the gap, NPR is taking on this most challenging topic in a big way, planning 25 pieces--major documentaries, smaller features, essays--to air on its newsmagazines this year and next. The project is called "The End of Life: Exploring Death in America". One hour-long piece will follow a close-knit family as the 82-year-old mother dies of leukemia. The project will also look at a doctor's effort to change the experience of death in Missoula, Mont. These will air with three others on All Things Considered over a week later this year. To oversee the project, Sean Collins got a much-needed six months off his usual gig as ATC producer. A two-hour, 4 p.m. show demands a lot of its line producer, says Executive Producer Ellen Weiss. "That person, you know, never sees the inside of their office. They never answer their e-mail. They never have time to sit back and think about other things." Eventually, joy and creativity suffer, she says. Weiss had been discussing this project with Collins for years. Devoting him to it was the way to ensure it got done. Since starting the series, "he's been literally untouchable," she says. Collins spent the first two months traveling to conferences, visiting medical school classrooms, meeting with researchers, chaplains, hospice staff, doctors, nurses. Otherwise, he'd plan in his office, with its piles of books and journals titled A Midwife through the Dying Process and such. His colleagues joke that his space became the "death den." After the research, Collins, ATC producers, and NPR's science and cultural desk editors sat down and devised a story list--still fluid--and assignments. As plans stand, the series will begin with a roundtable led by ATC co-host Linda Wertheimer. The next day, the program will air the hour-long doc about the elderly woman. Wednesday, ATC will feature Utah-based reporter Howard Berkes' report on the aforementioned Missoula Demonstration Project. Thursday and Friday will feature literary essays. Other plans call for cultural pieces such as one on death rituals, and lighter stories including one on virtual funerals. (The latter will happen only if someone actually buys a cyber-service, which a firm is offering, says editor Deborah George. To date, no one has.) These days, Collins and Wertheimer frequently visit the Northern Virginia home of an African-American grandmother, formerly a domestic worker, who is dying of cancer. An area hospice made the introductions. The two radio people are quite conscious of the magnitude of NPR's request to the family, and are careful to limit their visits to an hour or so. Despite the fertile ground for tension, Collins believes the family has taken them in. The piece will aim to explore what a family learns about itself from terminal illness. The elderly woman is most definitely a matriarch, and the family's axis, Collins says. "It will be one of the interesting stories to tell about this family. When Helen dies, who will acquire the role of centerpiece? One of the things families have to do is reallocate roles. ... Who will acquire that new role of [holding] that family together?" The immersion of reporters in a family's life inevitably changes the very dynamics reporters are assessing. This will happen, says Collins, if only because reporters ask questions, the very ones many families are good at avoiding. He also wonders whether NPR's presence will change the quality of the grandmother's medical care. Either way, he wants to place her story accurately in the context of Americans' last days. The series will track an emerging trend in medicine, away from curative models--anything to save the patient to the bitter end--to palliative ones. Collins talks about patients dying in intensive-care units, without full access to their families, sometimes strapped down and intubated, potentially suffering from psychosis because they're continually awakened. The medical establishment is now questioning that way of dying, he says. Berkes' piece will look at an alternative way, reporting on a 15-year study of a community's attitudes toward death and dying. Dr. Ira Byock, an emergency room physician and hospice director, is leading the Missoula Demonstration Project. "The intent seems to be to transform the process of dying in the city of Missoula," Berkes says. "They're taking the old notion that there is a way to die well and trying to apply it to an entire community." Byock hopes institutions in the community--doctors, nurses, nursing homes, hospice care, also the people, will come to regard dying as an experience that can actually enhance life. Obviously, it's ambitious, and Berkes intends to look critically, asking questions such as whether the project is not replicable because its momentum rests so heavily on Byock's own charisma and articulateness. In reporting the story, Berkes and Collins visited a 70-year-old rancher, dying of emphysema, who is Byock's patient. "He said a year ago, he was prepared to 'jump the crick' ... either commit suicide or stop treatment and crawl into his bed and die," says Collins. But joining the hospice gave him a new perspective. As Berkes tells it, the rancher wants to make the most of this last chapter. "He's a guy who's lived a good life and a hard life and contributed to his dying by smoking. But he doesn't want to die before getting everything possible out of life. He's resolving issues with friends and family. He's really fighting. Every breath for him is a struggle." To Collins, the rancher's improved family relations are compelling. "A terminal diagnosis can ... give a family an opportunity to talk about things they had never talked about before. And for anyone who's interested in narrative or storytelling, that's an amazing story--that I waited 70 years to talk to my family about some of this stuff, but I have talked to them about it, and I'm glad that I did it." Other stories in the End of Life project will look at: society's changing notion of what is a good death. "There was a time when clinging to life, not going gently into that good night ... was considered an honorable way to die," says cultural desk editor and producer Deb George. Today, mores have shifted, and people think in terms of acceptance and "dying well." This tendency is explained, she thinks, by a parallel shift: people used to have faith in science, technology, medicine; now they're much less optimistic. Independent producer Karen Michel is exploring an underreported story: people who attempt suicide and fail. "[The story is] the connection we have with these people," she says. "They are among us. They may be our mother, our sister, our best friends." She's also planning to do a piece on modern-day reliquaries--containers for relics of the dead. Graceland is one, she thinks. Science desk reporter Joanne Silberner will explore how doctors deal with death, and the cost of dying. Other possible topics: thanomusicologists, or people who play music to the dying; how the military prepares soldiers to die and kill; death and art; Judgment Day and the afterlife. These stories will air on ATC and the other newsmagazines. Collins is creating a related web site, which will be up more than a year. It will have a section on organizations such as the American Cancer Society, a bibliography, a readings section with excerpts from plays, novels and other materials, and a talk-back section. Bereavement counselors say it's vital that people who've experienced someone's death talk about it. "I've learned that the best thing you can ask someone ... after someone [they love] has died, is, not 'How are you doing?,' or 'Are you feeling OK?,' but, 'How did it happen?'," says Collins. "To give them permission to tell that story is an amazing gift." Collins has an obvious and seemingly missionary commitment to this project, but the concept doesn't appeal to everyone. "A lot of people ... feel nobody is going to want to listen to something that depressing," says Silberner. Collins and Weiss say the series will have some humor. Anyone who's spent time at a deathbed knows that laughs aren't out of the question. That's why Collins included in the web site a transcript of the famous Mary Tyler Moore Show episode in which an elephant sits on Chuckles the Clown. The program segments won't be entirely morose, either. "A lot of people Sean and I run into have really thought about this in a different way, and that's what we have to bring forward," says Silberner. "They say, 'Everyone's afraid of this. Everyone thinks it has to be a tragedy. But ... it can be made more comfortable, ... people can prepare for it. It may not be any less sad, but it can be less horrific.' "

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Outside link: NPR's web site for its End of Life series.

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