The authors of "A Few Months to Live" filled their book with the voices and experiences of people who are dying, and their families. That's who they want the readers to hear.
"Whoever the reader is, we hope they'll read it to get the perspective of people who are dying," Jana Staton said in a recent interview at her Missoula home.
Staton, a marriage and family educator, and Roger Shuy, a linguist who's retired from teaching at Georgetown University, followed nine people in the Missoula area who were terminally ill in the last months of their lives in 1997. The people and their families talked about their medical treatments, their pain, their feelings about illness and death, spirituality, feelings of the caregivers and more. As well, Staton and Shuy looked in on their everyday lives.
"Nobody's ever written about that, the mundane things people do every day," Shuy said. "The simple pleasures of water, or a cup of coffee, or a doughnut. Things that we look right past are big."
They watched, for instance, the joy brought to a dying woman when she watched squirrels and birds outside her window.
"I think we got entranced with their everyday lives - to take a walk by the river, pumpkin ice cream, playing golf," said Staton.
Staton and Shuy, a married couple who have collaborated on research and writing projects before, came upon the project in 1996, shortly after they moved to Missoula from Washington, D.C., partly because of Staton's roots as a Butte native. At their church, they met Linda Torma, a Missoula registered nurse who was then working for the Missoula Demonstration Project.
MDP was started with a small grant in the fall of 1995 by Missoula physician Ira Byock and gerontologist Barbara Spring to study issues of death and dying and to make Missoula a demonstration community to show how Americans could do better. Byock, who's the principal investigator for the project, worked as the third co-author on "A Few Months to Live." The project was looking for ethnographers, social scientists who do descriptive studies of specific populations, to do a study of real people, with color and texture, before the project plunged into its quantitative studies.
Shuy and Staton are ethnographers, they told Torma, and soon the project began.
"Serendipity is an issue always in life," Shuy said, "and you have to grab it."
Finding subjects was a challenge. Missoula has about 600 deaths a year; about 200 are the result of sudden trauma. Because terminal diagnoses are usually given relatively close to death, most of the potential subjects died before the authors could talk to them. In the end, with Torma's help, they found about 15 who were possible.
The nine who agreed to participate in the study had a surprising range of illnesses, situations and attitudes. Among them, they had the three leading causes of death in Montana - cancer; heart disease and stroke; and heart-lung disease. They included an 87-year-old woman with breast cancer, a 46-year-old American Indian woman with ovarian cancer and a 39-year-old golf pro with a rare form of cancer.
Some had large extended families and dedicated caregivers, and one had no relatives at all. Among the differences among them were their openness about death and their attitudes about it. Some were able to use the words "die" and "death" openly, and one never fully acknowledged she was dying.
"We felt some houses were open, more so than others," said Shuy.
One family called everybody when their relative was dying. Those who could came over, and long-distance grandchildren talked to her on the telephone.
"They were so inclusive," Staton said. "They said, 'We're all sharing in it.' "
The 39-year-old man was taken care of by his mother, with whom he was very close.
"I can talk to my family about just about anything," he told the researchers. "Mom can almost read my mind as to what's going on. We always say we're joined at the hip, and we are."
"The inability to talk about it, to be open, meant you were less able to ask for help," Staton said.
The researchers also studied the caregivers, both during the dying process and after the death, amassing almost as much material about them as about the people who were dying. Seven of the nine dying people had care from Missoula's hospice service, most at home, which the researchers found was helpful to them and the caregivers.
"We're trying to find out how, in the long run, to make the last days better," said Shuy. "Certainly hospice was a part of that that goes right."
Byock helped the authors with background data, and he framed the study, suggesting the themes they should investigate - pain, personal meaning, attitudes, relationships to caregivers and the like. Now he's starting to give the book international exposure.
The authors, who will read from the dying people's words on Tuesday at Fact & Fiction bookstore, urge people to plan ahead for their last days to improve their quality.
"We all assume that we're going to be rational and competent and able to make decisions at the end of our lives," Staton said. "But that's not true."
Reporter Ginny Merriam can be reached at 523-5251 or by e-mail at firstname.lastname@example.org.
Authors Jana Staton, Roger Shuy and Ira Byock will read from their new book, "A Few Months to Live: Different Paths to Life's End," just published by Georgetown University Press, on Tuesday, May 22, at 7 p.m. at Fact & Fiction bookstore at 220 N. Higgins Ave.