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Thursday, June 30, 2005
WHOSE RIGHT TO KNOW?
Changing values pose problems for terminal care in Japan
By ROWAN HOOPER
Several years ago, I read cancer surgeon Fumio Yamazaki's unforgettable book titled "Dying in a Japanese Hospital." Through case studies of his patients, he describes the final moments in the lives of terminal cancer sufferers. Invariably, just as a patient is slipping away, doctors battle to resuscitate him or her, shooing family members away while they perform various aggressive procedures, only for the patient to die soon after, away from loved ones, without dignity.
The resuscitation battle, says Yamazaki, is a kind of fake concern, a way that the doctors can demonstrate their dedication.
Moreover, as in Akira Kurosawa's 1952 film "Ikiru (To Live)," terminally ill patients in Japan are usually not even told they are dying.
Perhaps surprisingly, the book is a great read and, like "Ikiru," both moving and inspiring.
But why is this the way the dying are cared for in Japan? Is it because the concept of the self and the group are different in Japan compared to the West, where the rights of the individual are strongly favored over those of the group?
Writing in a study of terminal care published in a bioethics journal in 2003, Nagano College of Nursing professors Emiko Konishi and Anne Davis say: "One could argue that traditional social norms and values of group behavior and harmony, mutual dependency, and protecting others from harm create a social environment [in Japan] that does not always accommodate the Western definition of the person as a self-regulating individual with rights."
In their study, Konishi and Davis surveyed 124 nurses and found that nearly 60 percent said they don't usually tell patients about a hospice as an alternative to dying in the hospital; 95 percent said that most adults stay in hospital to die; and 88 percent said they think that patients usually know they are dying even when they are not informed.
More evidence (if any were needed) that the group has more power than the individual in Japan now comes from the findings of a survey of physicians in the United States and Japan, to be published in July in the journal Academic Medicine.
Bob Gabbay and colleagues at the University of California at Los Angeles, and medics at the University of Tokyo, questioned doctors in hospitals in both countries. What they found was that doctors in Japan are more likely to involve patients' families in end-of-life decision-making, and that they favor informing family members over the patients themselves. U.S. doctors, they found, prefer to deal directly with the patients.
However, Japanese medics are more conflicted about their approach compared with their U.S. colleagues, suggesting that cultural values in Japan are changing.
Ninety-five percent of Japanese medics said they would inform both a patient and their family about a metastatic cancer diagnosis [one in which cancer has spread from one part of the body to another part unrelated to it], with 99 percent of that group saying they would notify the family first.
In contrast, 53 percent of U.S. medics said they would speak only with the patient, and just 2 percent said they would inform the family first.
"Traditionally, the family in Japan usually decides what to tell the patient," Gabbay said. "It's different than in the United States, where the individual autonomy to make decisions is perceived as relatively more important."
But Japanese physicians have their doubts. Only 12 percent said they were "completely certain" that their approach was the best. In the U.S., 49 percent said they were completely certain.
The doubtfulness of Japanese doctors surely reflects a change in cultural values in Japan. In 1990, there were only three specialized wards for palliative care in Japan, but by 2002 there were 89 such wards. Perhaps since Yamazaki's best-selling book, published in English in 1996, things have been changing.
"The bedrock principle is that of respecting the patient's perspective," said Karl Lorenz, assistant professor at the David Geffen School of Medicine at UCLA. "We must have better medical education to equip young physicians to sensitively approach these conflicts of perspective and help them negotiate the ethical principles that are involved, and especially the deep emotions that are engendered."
In Kurosawa's "Ikiru," the hero Watanabe (Takashi Shimura) is diagnosed with terminal stomach cancer. This is one of the most common cancers in Japan, and one with a high mortality rate. Many physicians therefore feel that patients will get a bit depressed if they know they're going to die, so they don't tell them.
But isn't it better to be depressed -- but at least to know the truth?
Kurosawa seemed to think so. When Watanabe inadvertently finds out he's dying, he discovers an amazing lust for life.
"Traditionally, doctors in Japan are more paternalistic and authoritative about information disclosure and decision-making, but that situation is rapidly changing," said Shinji Matsumura, of the Matsumura Family Clinic in Tokyo, an author of the paper.
"As our findings suggested, young doctors in training in Japan are in the midst of changing norms of tradition. Sometimes they have to behave traditionally, and withhold information from patients against their will, and other times they have to follow the Western norm and tell the patient honestly against their family's will."
A terminal cancer ward in a hospital is perhaps an unlikely place for an example of how Japanese society is changing, but with the graying population it's one that ever more people will experience.
"Since no one escapes from death, we must all accept the fact that at some point we will no longer be able to keep on living," wrote Yamazaki. "What are the best conditions, then, under which to accept the fact that life is coming to an end?"
A book of Natural Selections columns translated into Japanese, "Nou to sekkusu no seibutsugaku (Evolution, Sex and the Brain)," is published by Shinchosha. Rowan Hooper is a biologist at Trinity College, Dublin. He welcomes readers' comments and questions firstname.lastname@example.org