This book asks how the final days might be different for Japanese patients and for those in the United States. Both Japanese and Americans state that they want to die peacefully at home surrounded by loved ones. Yet, in both countries, most people die in hospitals surrounded by medical equipment and the staff that run it.
In both Japan and the U.S., people speak of wanting to die with dignity, but there seems to be no single way to make this occur. One of the reasons is that we all want an individual death, one that recognizes that our life had a meaning. At the same time, defining such a self is inherently a social process, one quite beyond the individual.
In this very interesting book, the author, a professional anthropologist with an interest in the care of the elderly and in comparative medical systems, shows through both analysis and anecdotal example how people can have choices without denying this social embedment.
This seems particularly true in Japan where choice concerns consciously creating a personhood that is constrained and enacted within a social context. In a majority of situations, choices about dying and caring for the seriously ill are made by others.
Overwhelmingly, these others are family. So it is everywhere else as well, but not often with the persistence to be observed in Japan. Though the weakening of the family-system is to be noted, Confucian notions of the individual as first a member of a family, a community, and a nation are still in varying degrees encouraged.
The family is therefore important in any consideration of a person's being allowed or being assisted to die. Indeed, often the patient is informed, or is not informed, of the nature of his or her illness according to the disposition of the family. If it comes to any such decision as unplugging a dying patient, this also is the province of the relatives. As one doctor phrased it: "The patient becomes a sacrifice for the family."
This is also true in many other countries -- there was the famous Terri Schiavo case of family death-bed squabbles in the United States -- but perhaps not to the same extent as in Japan. Death is still very much a family affair here, though most do not actually die at home.
Just after World War II, more than three-fourths of all deaths occurred at home, but as of 2002, three-fourth of all deaths occurred in hospital. Nonetheless doctors remain reluctant to take on the responsibility of choosing to inform patients of terminal illness.
They have their reasons. They do not wish to be held responsible if the patient goes into relapse after hearing the diagnosis. At the same time, however, without informed consent based on full disclosure of a patient's diagnosis and prognosis, isn't medical practice illegal and unethical?
As for "helping" a patient in extreme terminal pain, this is dangerous for the doctor if not for the patient. Once a life-sustaining treatment has begun, removing or discontinuing it would result in certain and predictable death, and this would be committing murder.
A result is the widespread impression that Japanese doctors are paternalistic and refuse to allow patients to die with dignity. And indeed most doctors do favor aggressive treatment because they are rarely trained to do otherwise. At the same time, however, they share conflicting ideals with the patient and family. Is disconnecting a life-sustaining device an act of murder or an act of compassion? As one doctor is quoted as saying: "Euthanasia is illegal in Japan, so I cannot stop any life-sustaining interventions once they are begun."
A result, it is said, is that the prepared "living will," signed by the patient in better days, is disregarded. "Protecting" the patient may be thought more important than promoting his or her autonomy. Pleas for termination are sometimes taken to mean that the patient is "depressed," and when the family gathers he or she is admonished to "gambare"-- to do his or her level best.
All of this evidence, statistical and anecdotal, is skillfully and indeed entertainingly sifted by the author, who examines her material from all angles, from the ideal to the practical.
Facing death is a universal demand and it is something we must all undergo, but our various cultures makes different the ways in which we do so. This is nothing to be moralistic about, since the result can only be measured by the dying.
It is this deeply sympathetic view that Susan Long takes in her well-considered book -- an anthropologist looking at the ineffable.
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