Keeping patients in the dark in Japan?

July 13, 2007 1:44 PM

I'd like more information about the practice of not informing patients of the extent of their illness in Japan.

I just read this story about Japanese model Eri Murakami's death from appendix cancer. The story briefly mentions that "Murakami was not informed of her condition -- an approach not unheard of in Japan -- and she had hoped to resume her showbiz activities after recovering."

I think that's fascinating, and I'm interested to know more about it. Why is the information withheld, how common is it, who makes the decision, etc. I'd also be interested to hear about this happening outside of Japan. Any resources that you can point me to would be greatly appreciated. Thanks!

posted by Espy Gillespie to society & culture (18 comments total)

Some cultures have a very paternalistic approach to bad news.
It may be they consulted her parents who decided she should not be informed. Regardless of her age.
It would be completely within the parametres of surgical practice as I've had it described to me in Japan. But that may be anecdotal
posted by Wilder at 1:49 PM on July 13, 2007

Wilder is right that there is a very paternalistic view of medicine in Japan; it is discussed in varying degrees of detail here, here, here, and here.
posted by TedW at 1:57 PM on July 13, 2007

There are a lot of comments / anecdotes in this vein on this particular blog post:

Bad Bad Medicine: Doctors in Japan
posted by sharkfu at 2:08 PM on July 13, 2007

There's a story coming up in St. Louis Magazine's August issue about challenges treating immigrants and other international patients here in St. Louis, and how a new program through Saint Louis University's med school is addressing that.

One of the examples in the article involves an Asian (may be Chinese or Japanese; I can't recall) daughter translating on behalf of her mother, who is being treated for cancer. When the hospital brings in a staff translator, they realize the daughter hasn't fully informed her mother about her condition—and the mother herself refuses to hear from the translator, preferring to trust her daughter. I don't remember exactly what happens then, but I think they may opt to have the translator explain her condition to her, in order to make sure they've legally obtained full consent to the procedure.

So you may want to check out that article when the issue comes out in a couple weeks!
posted by limeonaire at 2:11 PM on July 13, 2007

This is dealt with to some extent in the classic movie Ikiru.
posted by adamrice at 2:37 PM on July 13, 2007

Ikiru has some pithy, black humoresque lines on terminal cancer, but the movie's about half a century old, and the state of affairs has changed somewhat.

Still, I understand that there's a custom of not revealing the extent of terminal illnesses to patients.

This was also the case in the US, however, until relatively recently. Perhaps Japan is behind the curve.

Note that one factor affecting *all* patient/specialist interactions is the availability of government subsidized universal health care. In the US, doctors may feel more compelled to discuss terminal illnesses with patients, because of the paperwork involved in getting HMO approval for procedures and drugs. Not so in Japan.
posted by Gordion Knott at 3:16 PM on July 13, 2007

http://en.wikipedia.org/wiki/Hirohito#Death_and_state_funeral

I just read about this yesterday...

"The doctors discovered that he had duodenal cancer, but in accordance with Japanese tradition, they did not tell him."
posted by lalas at 3:36 PM on July 13, 2007

The following are scholarly articles, which most university libraries have access to, and otherwise if you are interested in obtaining them you should ask your local librarian:

Mystakidou, K., Parpa, E., Tsilika, E., Katsouda, E., and Vlahos, L. (2004). Cancer information disclosure in different cultural contexts. Supportive Care in Cancer, 12(3), 147-154.

Chiu, L.-Q. et al. (2006). Cancer patients’ preferences for communication of unfavourable news: an Asian perspective. Supportive Care in Cancer, 14(8), 818-824.

Jiang, Y. et al. (2007). Different attitudes of Chinese patients and their families toward truth telling of different stages of cancer. Psycho-Oncology.
posted by needled at 4:04 PM on July 13, 2007

What I find interesting about this is that patients apparently find it reassuring, rather than terrifying, to have their doctors lie to them. I think that if I lived in a culture like that, every time I went to the doctor with a cough or a sore throat, I'd be convinced that I had terminal cancer and they just weren't telling me. You don't know when you're terminally ill, but that also means that you can't be sure that you're not. Does this freak people out, or do they just not think about it?

I suppose on some level my stance is irrational. For all I know, I'm terminally ill and my doctor hasn't figured it out yet. You can never be sure you're not dying, and of course ultimately we're all dying on some level. But still....
posted by craichead at 4:04 PM on July 13, 2007

Thanks so much for all the answers everyone, especially TedW and needled for the terrific links to literature and sharkfu for the very interesting blog link. Everything I've read so far has been very informative and interesting.
posted by Espy Gillespie at 4:31 PM on July 13, 2007

craichead : "What I find interesting about this is that patients apparently find it reassuring, rather than terrifying, to have their doctors lie to them. I think that if I lived in a culture like that, every time I went to the doctor with a cough or a sore throat, I'd be convinced that I had terminal cancer and they just weren't telling me."

I suspect, though, that's because you're coming from a culture where they don't lie about like things like that, so it would be pressing on your mind. If you lived in Japan from birth, and had been to the doctor tons of times since childhood for influenza and sore throats and broken legs and herpes and the like, you'd be used to the pattern of "doctor says it's something minor, gives medicine, I'm cured just as predicted", so you'd be far less likely to be all worried each time you go to the doctor.
posted by Bugbread at 5:12 PM on July 13, 2007

This is pretty common in Asian and Hispanic cultures, actually. Usually some family member gets informed, at least partially, and makes decisions; sometimes, though, only the doctor knows, and makes whatever decisions he sees fit.

Telling someone a diagnosis that they would never expect to receive because of their cultural views is one of the ways that a doc can really screw the pooch when practicing cross-cultural medicine.
posted by ikkyu2 at 12:12 AM on July 14, 2007

And not just Asian and Hispanic. We were told of my mother's end stage liver disease and when we asked the doctors not to inform her they allowed that. This is in Ireland just 7 years ago. All she wanted to know was that it was not Cancer, because that of course is the big no-no.
We nursed her mostly at home as she fell into a midly Encephalopathic state of inebriation (great way for an Irish woman to go, if you have to die it could be worse). Luckily she had no pain so we all kept up the pretense that there was nothing majorly wrong (by the time things were obviously serious she did not have the mental capacity to understand that) and she died very peacefully.

I suppose we were allowed to do this as we are a medical family and knew more or less how the disease would progress. But it was pretty routine in Irish Hospitals to ask the next -of-kin how much information they wanted to give their loved ones.
posted by Wilder at 4:01 AM on July 14, 2007

I've heard of similar attitudes with diagnosis of MS. Sometimes it can take years for a positive diagnosis, and it seems that some patients are not told that MS is even a possibility. I've read accounts of people finding out they have MS when someone new treating them has asked them something like "So how long have you had MS?" and no one has previously told them that's what they have.
This may be an older attitude from when there was less known there weren't the treatments that are now available, and may not reflect current thinking (I hope).

From Multiple Sclerosis: Exploring Sickness and Health
by Elizabeth Forsythe (published in 1988 - The author is a medical practitioner with MS):
When the doctor first considers MS a possibility he may believe the patient should not be told...At the first incident it could be a mistake to tell the patient that she has MS because it might cause needless worry and suffering and such a prognosis could even become self-fulfilling. If there was a proven cure it could be very wrong not to tell the patient; but there is no such cure.

Cari Loder, in her book Standing In The Sunshine (published in 1996) details the onset of her MS:
...I went to the hospital outpatients clinic on a standard follow up and was astonished when the doctor started talking about how little medical profession knew about MS. That was all very interesting, but I didn't have MS, so what was he talking about?
She goes on further about then being given the impression that she was "given the all clear" before finally being told months later that she did indeed have MS. It took 9 months before she was definitely told, even though it been suspected by her medical team the whole time, and her sister had been told at the beginning. She talks about her anger that the people she had trusted had treated her like a fool.
posted by goshling at 9:54 AM on July 14, 2007

Unfortunately, MS is a disease with three diagnostic categories: "possible," "probable," and "definite." By the time it is "definite" no one is beating around the bush any more; the patient is either blind or paralyzed.

Check out this thread for an example of what happens when you tell someone they have MS. Wouldn't you like to be more sure than "possible" before you set this train of events into motion, goshling?
posted by ikkyu2 at 10:11 AM on July 15, 2007

Thanks for your contribution, ikkyu2. I am aware of the thread you linked to, I did contribute to it.
As I mentioned above, I wondered if holding back a possible diagnosis was a remant of times before current diagnostic tests and treatments existed. While the future is bleaker for some than others, I think knowledge is power and I'd rather have an idea of what may be than to be sideswiped unexpectedly. The first piece I quoted above completely stunned me when I read it.

Before I added to this thread, I did wonder if I was straying too far off topic, but the OP asked for incidents outside of Japan and didn't specify that they were only interested in cancer. I was immediatley reminded of the 2 books that I mentioned, as well as many conversations I've had with people with MS (including those who are irate they were not given the whole story, and those who would be happier had they never been told). A psychologist I work with is a breast cancer survivor, and we have chatted a bit about the similarities & differences of cancer & MS.
disclaimer: I am a massage therapist by profession and I also volunteer as a counsellor. I mention this just to say that everyday I deal with people with on all sorts of levels and they often confide in me things to do with their diagnoses (or lack thereof) that they don't feel comfortable discussing with their doctors.
When I was hospitalised and diagnosed with optic neuritis in Sept 2000, I was immediatley told optic neuritis was sometimes, but not always, the first appearance of MS.

Wouldn't you like to be more sure than "possible" before you set this train of events into motion, goshling?

I was given "possible", and with hindsight I wouldn't change it. It was fucking frightening, but I was able to go and educate myself and consider what may come (and read all those ancient tomes published in the 1980s).

As someone who has sat opposite at least 2 different GPs, years apart, describing a set of (completely different) symptoms, whenever I get to adding, "oh, and, um, I suppose I should mention I had optic neuritis and um," and their facial expressions change...oh, and another doctor who LITERALLY guffawed at me when I said "I may have possible MS"...

So I guess I'm a bit resentful of the wishywashiness of MS, but i know I'd rather be aware of the worst case scenerio and how i might possibly deal with such, than float around not having a clue.
and now I just come out and tell doctors I have MS & they take a step back and go "YEAH? you're doing doing well though? You look great!" which is much nicer than having them look at me with that pitiful "oh dear" look.
posted by goshling at 7:20 AM on July 16, 2007

When I had a stomach ulcer, I had to call over and over and basically make life hell for my doctor before he told me what was wrong with me. This was at a small clinic in Tokyo.
When I had a tumor in my neck I went to a much larger hospital (Hiroo Metropolitan) and the doctors there never held anything back. Even though it takes all day to get through the lines there, I will never go anywhere else as long as I live here.
posted by m3thod4 at 12:13 AM on July 17, 2007

i know I'd rather be aware of the worst case scenerio and how i might possibly deal with such

Yeah, me too. That's why it surprised me so to learn that, worldwide, you and I are in a tiny minority, goshling. Folks from most other cultures don't agree.
posted by ikkyu2 at 1:54 AM on July 17, 2007