Doctor's cancer dilemma:
To tell or not to tell
Hiroshi Wagatsuma's final thoughts
on Japanese culture and psychology
By William Wetherall
A version of this article appeared in
The Japan Times, 13 November 1985, page 12
See also Cancer question
The Lies Begin
Are Doctors Weak?
The Whole Truth
Right Not to Know
A Life Fulfilled
Hiroshi Wagatsuma, psychological anthropologist, citizen of the world, passed away on July 25th. Born in 1927, he was two years short of celebrating his sixtieth year, which would probably have occasioned a memorial publication by his many students and colleagues in Japan and abroad.
We now have only to grieve the early departure of an animated scholar who had years of bloom left in his infectious curiosity about the normal abnormalities of human behavior; to share the anguish that he felt when he discovered that his doctors wouldn't tell him that he had cancer until they were convinced that he was "alien" enough to bear the truth; and to carry his dying torch of hope that more Japanese medics will recognize a patient's "right to know" if one has cancer or another possibly terminal illness.
Hiroshi Wagatsuma was known to every student of Japanese cultural psychology. He was the author or co-author of many memorable books and articles in English and Japanese on Japan's social, ethnic, and national minorities, especially outcastes, mixedbloods, and Koreans. His monograph on "The Social Perceptions of Skin color in Japan" (Daedalus, Spring 1967) is already widely regarded as the classic introduction to the subject.
Heritage of Endurance: Family Patterns and Delinquency Formation in Urban Japan (University of California Press, l984), researched and written with his longtime mentor, collaborator, and colleague George De Vos of the University of California at Berkeley, may also gain stature as the seminal psychocultural study of how relationships in some Japanese families can spawn deviant social attitudes in youth.
Returning to Japan after nearly two decades in the United States, Wagatsuma prolifically wrote in Japanese on changing sexual mores and failing families, especially in America. "Sex," he told me in 1978 shortly after his homecoming, "is the last frontier of anthropology."
But he did his final research and writing, while dying from cancer, on the cultural psychology of why Japanese doctors don't -- but should -- tell their patients the truth.
Many of us who knew him did not learn of his death until reading his article "Gan wa kinku ka?" (Is cancer a taboo word?") in the October issue of Bungei shunju, or until getting a phone call from someone who had.
Following Wagatsuma's posthumous essay is a commentary by his friend and mentor psychiatrist Takeo Doi, entitled "Wagatsuma-kun no toi ni kotaeru" (In answer to Wagatsuma's question).
The Lies Begin
Wagatsuma wrote the essay after losing his voice in an operation that failed to stay what he himself had thought could be esophageal cancer. The specialist who had diagnosed his condition after examining his chest with an endoscope, told him "There's a fairly large ulcer in your esophagus." His surgeon, a digestive tract authority who is sometimes asked to operate in other countries, also denied that it was cancer.
Wagatsuma's scheduled surgery was postponed for a month while he received radiotherapy. He and his wife were told that the treatment was necessary "to suppress some bronchial inflammation." Even his brother, a gynecologist, was told only that "Radiotherapy is widely used for the treatment of problems other than cancer."
One result of the operation, performed on July 11th, was that Wagatsuma lost the use of his voice box, which had to be closed. He also had to breathe, and feed, through tubes.
To keep his mind off the physical pain, and the nagging suspicion that he had cancer, Wagatsuma sat up in bed and continued to read and write. He figured that if it were cancer, there'd be new clues to tell him so, and eventually he'd be able "to see beyond the solid stone wall that the doctors had erected in their concerted answers to my questions."
The "clue" came shortly after his discharge. Told by his surgeon to come to the hospital three times a week for radiotherapy and once a week for vaccinations, he asked "Is treatment for inflammation still necessary after an operation for ulcers?"
But to himself he said "Just as I thought!"
"If it's cancer, I want to be told it's cancer," he said to his brother on the phone that night. The surgeon also called his brother, and it was arranged that Wagatsuma go to the hospital the next day to be told all the details.
He spent a sleepless night worrying if his surgery had been a success or was too late -- and how long he had to live if the latter. He could not stop trembling, and "a resentment toward all doctors raged in my chest."
He had heard from Takeo Doi about a book of posthumously published poems by a Japanese pathologist who himself had not been told the truth by his principal physician but as a doctor knew the nature of his own illness.
A stanza of a long poem entitled "Byosha: Patients must be patient" reads in part: "Should a doctor pronounce that a patient has an incurable disease, how in the days that follow is the doctor to confront and exchange conversation with the patient? Can a patient expect a doctor to muster so much human strength?"
Are Doctors Weak?
Doi told Wagatsuma that the pathologist, who died of cancer in his forties, thought that "a doctor's inability to tell a patient the truth stems from the doctor's own human weakness."
Doi added that in his opinion "A doctor who withholds the truth from a patient subjectively thinks that he does so out of compassion, not realizing that it is due to his own weakness."
But Wagatsuma felt that his own interpretation as a cultural anthropologist differed from that of Doi, who is both a psychoanalyst and a Catholic.
Wagatsuma attributed the unwillingness of Japanese doctors to tell their patients the truth to "the behavior patterns that regulate Japanese culture." In other words, "it is generally accepted that one does not tell a patient the truth."
Japanese culture thus "protects doctors from facing death (facing their patients), and so doctors are not behaviorally trained to tell their patients the truth (indirectly face death)."
Wagatsuma cited evidence to support his contention. A Japanese otolaryngologist who bouted lung cancer wrote in a novel called Tangansha: Kyansaa kyariaa (Petitioneer: Cancer carrier) that doctors evade specific questions and mince their words, and otherwise make themselves unavailable for explanations, not because they are really busy or heartless, but because "they don't know the techniques of how to cope with patients; they are not taught that conversational exchange with a patient is an important therapeutic measure, and few doctors try to learn such techniques."
The Whole Truth
Wagatsuma went to the hospital to have his suspicions confirmed. The disclosure that he had esophageal cancer was prefaced by the remark that "You're an exception among exceptions (to be told that you have cancer)."
As the surgeon had admitted to Wagatsuma's brother the night before, it's impossible (mo muri da) to keep hiding the truth from someone who strongly believes that he has the right to know whether he's dying and of what.
Wagatsuma learned that cancer cells had broken through the wall of his esophagus and had spread to his recurrent laryngeal nerves. Some of the nerves had to be surgically removed, and the others were left paralyzed, with the result that he completely lost his voice. It was also clear that the surgery had been too late.
Wagatsuma gathered from what his surgeon told him that ordinary patients do not ask many questions, but simply accept treatment as directed by their physician. But Wagatsuma perceived something more.
"Even if the doctor says nothing, the patient knows that one has cancer; and though nothing is said, the doctor knows that the patient knows. And without so much as uttering even the "can" of cancer, ten years after an operation without metastatis or relapse, the doctor can still say 'Yokatta desu ne' (It looks like everything's turned out okay), and the patient can reply 'Arigato gozaimasu' (Thank you). For there really does seem to exist a mutual relationship in which conversations based on such tacit communications (ishin denshin no kaiwa) can occur."
For Wagatsuma, such relationships were the "essence" of Japanese culture. And it was not difficult for him to imagine that,"for a doctor who likely regards this kind of relationship as ideal, a patient like me is considered an unmanageable 'alien' (ihojin)."
Wagatsuma claimed that "Along with the fear of death which I was to taste for the first time in my life, I experienced culture shock." His assumed identity as an adjusted bicultural person seems to have been completely shattered by his death-bed realization that he couldn't tolerate being treated as just another Japanese patient.
Wagatsuma had become thoroughly accustomed to being perceived as an exception by his Japanese colleagues whenever the American half of his personality refused to accommodate the Japanese half. Being a college professor provided him a certain amount of sheltering by peers who were able to understand and tolerate his "alienisms" as the result of having lived too many years in America.
Wagatsuma fancied himself as a "cultural relativist" who, though perhaps more at home with American values, respected the "shudanshugi" (groupism) of Japanese people, and accepted cultural conventions like "amae" (interdependency), and "tatemae" (apparent feelings) and "honne" (true feelings).
When in Japan, he tried as far as possible to behave in accordance with Japanese behavioral standards. But when overcome by "rejection reactions" from within himself, he'd indulge in the willingness of others to overlook his deviations from Japanese norms.
He considered himself a fairly skillful user of tatemae and honne. But he admitted to realizations of having shocked someone by "spewing out my true feelings at times when they shouldn't have been spewed out."
Wagatsuma was, first and last, a human being. But he carried a Japanese passport. And in many ways that he himself may have found difficult to acknowledge, he was also an American.
After World War II, his father, the late legal scholar Sakae Wagatsuma, helped "democratize" Japan's civil code, especially laws concerning marriage and the family. The young Wagatsuma was instilled with the ideals of free speech and social equality, and in his own words he was raised to regard America as the "model" of western-style individualism.
Wagatsuma lived in the United States for nearly twenty years, first as a graduate student at Harvard University, The University of Michigan, and University of California at Berkeley, and then as an assistant professor at Berkeley, an associate professor at Univeristy of Hawaii, and a full professor at University of Pittsburg and Univeristy of California at Los Angeles.
He was an unusually mobile scholar even after "returning" to Japan in the late 1970s, holding first a post at University of Tsukuba and later a position at Tokyo Institute of Technology. His withdrawal from America was gradual, however, for during his first year at Tsukuba he continued his affiliation with UCLA.
His experiences abroad undoubtedly contributed to his appreciation of such "non-Japanese" medical credos as "To cure at times, to relieve often, and to comfort always." He was also impressed by the words of the Canadian physician and medical writer Sir William Osler (1849-1919 ), who said that we must consider not what disease a person has, but what person has the disease.
When novelist Sawano Hisao asked his doctor why Japanese physicians do not tell their cancer patients that they have cancer, he was told "If they knew that they had cancer, they'd give in psychologically, and those who would have recovered might not recover."
Wagatsuma questioned the scientific basis of the argument that knowledge of one's condition could result in psychological surrender or otherwise affect one's recovery. He claimed to have heard of no research comparing the recovery rates of patients who were told they had cancer and those of patients who were not told.
It was two or three weeks after surgery before Sawano succeeded in getting his doctor to tell him that he had had lung cancer. But Sawano wrote "I didn't become psychologically composed until I was told I had cancer."
Right Not To Know
Wagatsuma similarly claimed that his own will to fight did not emerge until he had been told all the facts. But he cited the words of a colleague who told him that there are not a few patients who "don't want to know that it's cancer even if it's clear that they will be cured."
Wagatsuma thus recognized that alongside one patient's "right to know" is another patient's "right not to know". And he therefore concluded that the disclosure of cancer should be on a case-by-case basis, and that Japanese physicians should be trained to judge when it is appropriate to disclose the truth.
Wagatsuma would probably have wanted to read the August 1985 issue of Psychology Today (which was actually published before his death). A feature article summarized the results of various reseach into the relationship between how psychological stress and personality factors affect a patient's immune system and hence recovery. Vulnerability to infectious diseases, and even cancer, may also be affected by how much one believes that the outcome of negative events like illness can be controlled.
Such insights from the field of behavioral immunology tend to support Wagatsuma's case-by-case argument. But it is not simply a question of a doctor asking whether a patient wants to know the truth. The doctor must also be able to ascertain the patient's psychiatric (as opposed to merely psychological) capacity to cope with the truth.
Such a case-by-case approach would require that even American doctors learn to lie when lying is therapeutically indicated. But the transition might not be that difficult, for the American medic's commitment to truth may not be as deep as is commonly thought.
As Doi points out in his partly adversary, but mainly empathetic reply to Wagatsuma's appeal (which he wrote after Wagatsuma had died): "We must realize that, while Japanese doctors may tell lies, American doctors do not necessarily tell the truth because they love the truth."
American medics may like to say that they disclose details about a patient's illness out of respect for the patient's "right to know", but their real motives may include a desire to protect themselves from malpractice suits.
Doi thinks that Wagatsuma may have been mentally regressing toward Japan. Wagatsuma's most recent writing dwells on the more negative aspects of sexual and family life in America, with the implication that he found Japan better off in both respects. This itself says nothing, of course, about his own cultural preferences.
Doi recognizes that because Wagatsuma wrote his essay while aware that he was dying, not all of his death-bed traumas can be explained in terms of culture shock. Yet Doi gives due credit to the weight that Wagatsuma himself places on his identity crisis.
I myself find it incredible that a bilingual and bicultural comparative social scientist, who appeared to understand and accept cultural differences, could suffer culture shock in the manner that Wagatsuma claimed. If the shock he described was not contrived, then his vulnerability must have lay in an unwarranted confidence in his ability to return to Japan, and to reenter the Japanese fold with impunity -- if ever he had truly been within it (for one always wonders why anyone leaves "home" unless in some sense they have to).
Wagatsuma was an expert observer (and competent practitioneer) of the Japanese art of manipulating the truth for social and psycholgocial purposes. In his essay he even admitted having written an article in 1980 entitled "Shiru kenri" (The right to know), in which he explored the reasons why -- unlike their American counterparts -- Japanese step parents and foster or adoptive parents go out of their way to hide lineal facts from their children.
With due respect for a man I admired (partly because he always welcomed a spirited debate, and would surely like to be in the middle of this one), it is my feeling that Wagatsuma's "culture shock" was more an anxiety reaction to the uncertainties about his life, than a intellectual reaction to the discovery that he was being treated like a Japanese patient rather than as a repatriot who had assimilated an alien's need to be told what needn't be said to a true Son of Nippon.
A Life Fulfilled
Doi graciously stops short of a fuller analysis of Wagatsuma the person. He rightly suggests that to venture further into the realities of Wagatsuma's mental being would require the revelation of personal, familial, and professional secrets that no one has the right to make public, not even if doing so would contribute to a greater understanding of multicultural adaptation and adjustment.
Having questioned the occurrence of culture shock, I can only with reservations accept Doi's conclusion that, "In retrospect, it was a good thing that Wagatsuma experienced culture shock at the very end (and not earlier), for in doing so he fulfilled his life."
But to Doi's closing words -- "I pray that Wagatsuma's soul, in heaven, shall repose in peace" -- I add with full heart, on behalf of all who knew or would have known him, Amen.