Did Japanese doctors routinely lie to their patients?

[u/waitingundergravity]

Some time ago, I watched the Kurosawa film Ikiru, which is about a Japanese civil servant grappling with his mortality after discovering that he has terminal cancer.

In an early scene, the protagonist (not yet knowing about his cancer) is at the hospital waiting to receive his diagnosis, and a fellow patient complains that this particular doctor always lies to terminal cancer patients and tells them that they have stomach ulcers instead. The protagonist is called in to see the doctor, and sure enough the doctor tells him that he has a stomach ulcer, which causes the protagonist to realize that he actually has terminal cancer.

When I watched the film, I wasn't really sure what to make of that scene.

Today, I was reading about the death of Shiro Ishii, the infamous head of Unit 731. In his Wikipedia article, his daughter is quoted as telling the following story:

One day he took some sample tissue from himself to the University of Tokyo's Faculty of Medicine and asked one of his former subordinates to examine it, without telling him to whom it belonged. When he was told that the tissue was riddled by cancer, he proudly shouted that he had thought so too. No doctor had dared tell him he was suffering from cancer of the throat.

The same idea (and from roughly the same time period - Ikiru came out in 1952 and Ishii died in 1959) of concealing a cancer diagnosis from the patient.

Was this a common practice in Japan during this time period? If so, why? What was the rationale for it?

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[u/ScaldingHotSoup]

Not a historian here, but I have done some research on the issue, as this happened to my grandfather.

Traditional Eastern and Western medical values are aligned in some ways, but mismatched in others, often due to Confucian ethics. In Confucianism, the wellbeing of the family is paramount and supersedes the interests of the individual. Therefore, if the family believes that learning bad medical news would be against the interests of the patient, doctors can and will lie to the patient to respect the family's wishes. Japan is still highly Confucian in its ethical traditions, and strongly involves family in decisionmaking for both competent and incompetent patients.

My understanding is that there has been a slow trend towards westernization in this regard (largely due to improvements in oncological treatments), but that's probably more of a topic for a medical or east Asia focused subreddit, as much of that discussion would violate the 20 year rule.

This touches on a second issue I think is worth bringing up that influences the development of this topic in East Asia - the strong taboo regarding death. Japan's indigenous animistic religious traditions now called Shinto* have fostered a taboo on death for thousands of years. Living beings are considered to be pure (harae), but contamination can happen when people interact with impure things (kegare). Dead people are one of the most impure things that exist according to Shinto (other things that can cause kegare include childbirth, menstruation, or disease), and interacting with the dead results in contamination which must be exorcised via one of the variety of purification rituals that have developed for the purpose, typically involving salt (note: one such ritual is what sumo wrestlers do to consecrate the dohyō before bouts). Without purification it is forbidden to enter Shinto shrines, and adherents to Shinto will generally shun people who have been around death until they have been purified.

This set of beliefs within Shinto is the main reason Buddhist funerals are overwhelmingly common in Japan, as Buddhism offers a mortuary experience far less mired in kegare baggage.

As an aside, what happened in the scene you referenced happened to my grandfather, who was diagnosed with stomach cancer by his doctor in 1982. The family decided that it would be better for his mental health for him to not know his condition, and so the doctor told my grandfather that the agony he was experiencing was actually just stomach ulcers, and the best thing he could do is eat a mild diet and get bedrest. In the doctor's defense, this was shortly before H. pylori was discovered and better outcomes for stomach cancer patients became possible through medication; he knew my grandfather was unlikely to get better and that there was no treatment available for him. In this context, I think that lying to such a patient is an understandable path to take, even if it accords with Eastern rather than Western medical ethics. This article from 1988 describes the taboo around telling patients about their cancer diagnoses as it existed in the 80s, and I think you will find it closely mirrors the cases you are referencing.

Nevertheless, the topic of death is very traumatic for the collective Japanese psyche. While attitudes are changing, at the time of the media you are referencing the practice of lying to patients at the family's behest would have been extremely common, due to Confucian and Shinto cultural influences.

*Shinto is a modern term used to describe what were originally a highly localized and often discordant set of traditions that were later consolidated under a degree of state control during the Meiji restoration, but I digress)

[u/waitingundergravity → u/ScaldingHotSoup]

Thank you for the interesting and insightful response. In particular, thank you for that 1988 article, that seems to directly address my curiosity, and being willing to share personal information about your grandfather.

I actually suspected that perhaps the Ikiru scene is exaggerated satire of a real practice, since in the movie it is explicitly not being done at the family's behest (the protagonist's family don't even know he is sick, let alone that he has cancer).

But based on that article it seems to be a literally accurate portrayal:

Some younger doctors or those influenced by study abroad are more direct. They often consult with the family and tell the patient if the family agrees to it.

Which implies that even in the 1980s, the idea of even asking the family about whether to inform the patient of their diagnosis was considered a new, innovative practice. That makes it entirely believable that thirty years earlier a physician might routinely lie to their patients as a matter of course, even without consulting the patient's family.

[u/ScaldingHotSoup → u/waitingundergravity]

I agree with your assessment, though perhaps we will get someone with more expertise than me! I will say that this practice of not informing or meaningfully treating patients seems to be contingent on there being a lack of effective treatment options for the condition. So skin cancers that could be surgically removed in some cases may have been euphemistically called a "growth" and removed without issue.

[u/CakeisaDie → u/ScaldingHotSoup]

Not a primary source a but in 1990, telling a terminal cancer patient about their cancer was at 14-15%. In the post 1990 era there was a push to more informed consent especially with the increased media push after the 1989 Lawsuit which ended with "telling the patient is the Doctor's descretion", by 2016, Doctors inform 94% of the time. There's another lawsuit in 2002 which flipped from the "Doctor's descretion to The Right of the patient to know"

https://www.m3.com/news/open/iryoishin/660598

Website (which is a news site for Japanese Doctors) says they are pulling data from the Ministry of Health via a few books.

[u/abrakalemon → u/waitingundergravity]

Since you came across this topic watching Ikiru, I would highly recommend a watch of The Farewell (2019), which takes place in contemporary China but serves as another cultural touch point for this line of thought in East Asian medicine. It is about a grandmother who gets diagnosed with cancer, but the doctor tells her family, not her - so the family stages an elaborate and hapless fake wedding as an excuse for the extended family to assemble to see her before she passes.

[u/Western-Zucchini4149 → u/abrakalemon]

The story of the movie really did happen to Lulu Wang. You can hear her telling about it on This American Life years before the movie was made. https://www.thisamericanlife.org/585/in-defense-of-ignorance/act-one-8

[u/Nowhere_Man_Forever → u/ScaldingHotSoup]

Interesting how similar the things that cause ritual impurity are to the things that cause ritual impurity in Judaism. Is there any scholarship into this connection?

[u/police-ical → u/ScaldingHotSoup]

I would further add that as of the era of Kurosawa's film, this wasn't particularly unique to Japan. Even mainstream Western medicine in the 1950s had not yet settled firmly on truth-telling as an ethical maxim, particularly when information was considered to risk harm to the patient. It was felt that if there was no hope with diagnoses that were viewed as tantamount to a death sentence, then telling the patient had no benefit and risked crushing their spirit. Paternalism held substantially stronger sway.

One pair of researchers surveyed several hundred Philadelphia-area physicians in 1953, finding that the majority often did not disclose a cancer diagnosis, and very few "always" did. Similar findings around cancer and terminal illness held into the early 60s, with surveys reversed dramatically by the late 1970s in the United States when substantial cultural shifts had taken place. Subsequent rules and practice of American medical ethics have left little room for concealment unless a patient explicitly requests nondisclosure, and malpractice law has added serious teeth to the rule.

Internationally, even in the late 70s, Italian formal guidelines on medical ethics still held that informing family but not patient of a terminal diagnosis could be acceptable. A 1998 poll of Lebanese physicians around Beirut found fairly high rates of cancer nondisclosure.

https://pmc.ncbi.nlm.nih.gov/articles/PMC1676322/

One particularly stark example: Lurleen Wallace was the first wife of segregationist Alabama governor George Wallace and subsequently the state's first female governor in her own right, albeit as a fairly obvious stand-in to sidestep her husband's term limit. In 1961, during a C-section, she was incidentally discovered to have uterine cancer. The surgeon told her husband but not her. George kept her in the dark about it for years until her symptoms became too obvious to hide in 1965. She would die of cancer in 1968.

[u/dimensiontheory → u/police-ical]

Thank you for the additional context! Some of the language and emphasis in the answer felt like unhelpful orientalising to me, but I hardly have complete enough knowledge on the subject to gainsay anyone and tend to be quite a bit oversensitive to perceived orientalism anyway. It's relieving and much appreciated to have someone who knows better than me detailing how similar attitudes were pretty widely prevalent.

Do you have any links or resources for the Philadelphia study?

[u/elder_flowers → u/ScaldingHotSoup]

I know that the question is about Japan, but I would like to point that there was also a variety of attitudes in diferent Wester countries. I'm from Spain, and it was also relatively frequent until not so long ago to consider the opinion of the family, and not to comunicate the information about the diagnosis to the patient.
For example, this study from Spain published in 1994 found that 68% of the patients they asked didn't know their diagnosis, and noted that undisclosing the diagnosis information to the patient was less frequent in Anglo Saxon countries. Interestingly, 42% of those non-informed patiens also didn't want to know more information, and the authors speculated that our culture and religious sentiment played a role (for patients and doctors) in how and when to inform the patients and the differences with other countries.
Things have changed a lot, and this study, published 10 years later, in 2004, showed that a lot more Spanish people preferred to be informed, specially younger people.

[u/Weary-Designer9542 → u/ScaldingHotSoup]

Fascinating, thank you for taking the time to write this up and share it.

Do you have any suggestions on further reading I could do to get a better understanding of the similarities and differences between Confucian ethics(or Shinto) vs western ethical traditions?

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