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Matters of life and death
Crossing Over: Narratives of Palliative Care, a person's way of dying is every bit as unique as their life.Death is the ultimate common denominator. However, as is made abundantly clear in
PHOTO: Owen Egan
More than just a clinical collection of faceless "case studies," the book is an ambitious attempt to explore the personal experiences so often lost in the long shadows of symptoms. Each of the 20 narratives is constructed from interviews conducted not just with the patient, but with family members, friends, and caregivers. The breadth of interviews (including post-mortem follow-ups with family members) makes for multidimensional portraits of the mercuric relationships interwoven around a terminal illness.
Crossing Over's origins lie in a 1994 meeting between Dr Anna Towers, director of palliative care at the McGill University Health Centre and associate professor in the Departments of Medicine, Oncology, and Family Medicine, and David Barnard (at the time visiting Montreal from Penn State College, now a professor at the University of Pittsburgh).
They discovered a common interest in the experiences of patients and families, beyond the nuts and bolts of diagnosis and treatment.
"Medical humanities is not something that's ever been strongly encouraged at McGill," explains Towers, "so to meet someone from the outside who shared this interest was a great inspiration to me."
Towers and Barnard, along with Patricia Boston and Yanna Lambrinidou, spent three years immersed in the "qualitative research" that became Crossing Over. Towers explains that they didn't enter into the project with a stack of hypotheses. "We didn't set out to show anything," she says, "just to try to get closer to the experience of these particular patients and families."
The patients who participated in the project each brought very different challenges to their caregivers. "It Was Not A Peaceful Death," one of six contributions by Patricia Boston (assistant professor of oncology, education and psychiatry at McGill), presents a family very much at odds with the palliative care team.
When a 58-year-old man's "heartburn" is discovered to be incurable cancer of the stomach, his family tries to bolster its own denial by sparing him his true diagnosis. The physicians do not comply, and the family grows angry with the palliative care team for what they perceive to be a betrayal of trust.
The caregivers, in turn, feel their effectiveness is hindered by the family's lack of honesty. The narrative's ending is summed up by its title, a quote from the patient's widow.
"A Study in Faith," one of seven narratives researched and written by Towers, tells the story of how a dying woman's "unshakable faith in God" keeps her tranquil in the face of lymphoma. Her caregivers' reactions are mixed; some marvel at her serenity, while sceptics wonder if it masks darker emotions. These reactions in turn raise questions about the role a health professional's personal faith (or lack thereof) plays in patient care.
In another of Boston's narratives, "A Question of Denial," the family of an 80-year-old woman asks her physician to avoid using the word "cancer ... because it [is] too frightening a word."
Although the doctor strongly feels it is "always best to tell the patient the truth," he makes the compromise. Despite issues of denial, the family and palliative caregivers establish a working relationship.
Towers believes such examples are indicative of the absolute necessity of "individualized, holistic care." This emphasis on the individual's experience should permeate every aspect of palliative care. "I became sensitive to the language that health professionals use," she explains. "Language that denies the lived experiences of the individual they're caring for.
"For example, there is a young man in the book, Martin Roy, who was an unusually enlightened 37-year-old man. He had travelled the world and had a lot of spiritual experiences, and he was happy even though he had advanced disease and only a few months to live. I followed him at home, and then when he came into the hospital [where] the healthcare team was suddenly faced with this young man who was happy.
"Suddenly, this individual who, as far as I'm concerned, is just a very rich individual, is given a psychiatric label: 'euphoric.' That's one example of labelling when we see someone outside the context of their whole lives."
Towers hopes the book will spark classroom discussions in medical schools and believes Crossing Over will benefit patients and families facing terminal illness.
She also hopes the book will serve another function, one born of the recent climate of rampant budget slashing.
"These narratives document what things were like four, five years ago," she explains, "before the last round of major cuts in the healthcare system. Since that time, we have lost a lot of ground.
"With these narratives, I'm hoping to say: 'This is how it should work. This is what good palliative care can be.'"