family consent,communication,and cancerdisclosure: a … · christian japanese doctors, 16% of the...

J7ournal ofMedical Ethics 1999;25:296-301

Family consent, communication, andadvance directives for cancer disclosure: aJapanese case and discussionAkira Akabayashi, Michael D Fetters and Todd S Elwyn The University of Tokyo,Japan, The University ofMichigan, Ann Arbor, Michigan, USA and the University of Hawaii, Honolulu, Hawaii, USA

AbstractThe dilemma of whether and how to disclose adiagnosis of cancer or of any other terminal illnesscontinues to be a subject of worldwide interest. Wepresent the case of a 62-year-old Japanese womanafflicted with advanced gall bladder cancer who hadpreviously expressed a preference not to be told adiagnosis of cancer. The treating physician revealedthe diagnosis to the family first, and then told thepatient: "You don't have any canceryet, but ifwedon't treat you, it will progress to a cancer". In ouranalysis, we examine the role offamily consent,communication patterns (including ambiguousdisclosure), and advance directives for cancerdisclosure in Japan. Finally, we explore theimplications for Edmund Pellegrino's proposal of"something close to autonomy" as a universal good.(7ournal ofMedical Ethics 1999;25:296-30 1)Keywords: Family consent; ambiguous disclosure; cancerdisclosure; medical ethics; autonomy; informed consent

The dilemma of whether and how to disclose adiagnosis of cancer or of any other terminalillness continues to be a subject of worldwideinterest.' 2 In many cultures around the world, thecancer diagnosis is not routinely disclosed to thepatient. For example, the practice of non-disclosure is reported to occur in many countriesin Eastern and Southern Europe3`6; the MiddleEast7; Africa8; Asia9'-4; and other parts of theworld.8 We present an example of what we believeare common communication and decision mak-ing patterns for cancer disclosure in one suchcountry, Japan, through the case of a Japanesewoman who expressed a preference not to be tolda diagnosis of cancer. This case raises a series ofimportant questions regarding cancer disclosurein Japan: 1) What is the historical context of thecancer disclosure debate in Japan? 2) What is therole of family consent for disclosure? 3) What arethe patterns of communication relating toambiguous disclosure and the use of advance

directives for disclosure of the cancer diagnosis?and 4) Is the "universal principle of autonomy"applicable to this case?

Case presentationA 62-year-old Japanese woman presented to aTokyo hospital with a fever and severe back pain.Diagnostic work-up included serological tumormarker testing and abdominal computed tomog-raphy. This revealed advanced gall bladder cancermetastatic to the liver and back. Since herexpected survival was less than three months andshe was not a candidate for surgery or chemo-therapy, a regimen of comfort measures and paincontrol was needed.The diagnosis was first revealed to her family

members, namely her husband and her son, sepa-rately from the patient. The husband and son dis-cussed it with the daughter, and together the fam-ily requested that the patient not be told. Thefamily explained that while still healthy the patienthad mentioned to them her wish not to be told ifshe developed cancer. This mention of her prefer-ence may have been stimulated by intermittentmedia coverage of the issue in Japan and seemedplausible.

After initial treatment for pain and fever, thepatient stabilised and was competent to partici-pate in decision making, though she was a littlewithdrawn and dependent. The treating physicianand family met with the patient and in the family'spresence, the treating physician told her: "Youdon't have any cancer yet, but if we don't treatyou, it will progress to a cancer". In response, thepatient asked for no further details. An aggressivepain control regimen was continued and thoughshe was intermittently drowsy, she died fourmonths later without apparent suffering fromphysical pain. The physician never explicitlydiscussed the diagnosis with her.

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Historical context of cancer diagnosisdisclosure in JapanAlthough little has been written in English aboutthe history of the cancer disclosure debate inJapan,'" scholarly discussion about it can be tracedto the late sixties. In 1969, the Japan Society forCancer Therapy held a panel discussion on"Whether cancer patients should be informed oftheir disease", during which Matsuoka reportedthe results of two surveys. In a 1964 survey of 350Christian Japanese doctors, 16% of the 132respondents reported directly telling their patientsthe cancer diagnosis, while 76% answered theyonly told the patient's family the diagnosis."5 A1963 survey of 4,300 lay persons in Ehimeprefecture revealed that 90% of respondentsdesired to be told the diagnosis if they developedcancer.A substantial body of literature on cancer

disclosure in Japan has since appeared, includingreports of attitude surveys'2 16 18 and surveys ofactual practice.'9-22 Attitudes of the Japanese pub-lic towards cancer disclosure investigated by anationwide newspaper poll (Yomiuri newspaper)in 1987 revealed that, if afflicted by cancer, 64% ofthe subjects would want to be told the diagnosis,27% would not, and 9% replied "other" or did notanswer. However, if the patient was a familymember of the subject who knew the true diagno-sis, only 20% would tell the patient, 67% wouldnot tell, and 13% replied "other" or did notanswer. A nationwide survey offamily members ofdeceased cancer patients conducted by the Minis-try of Health and Welfare in 1994 showed that20% of family members answered that thepatients knew their diagnoses because the patientswere told the real diagnoses either by familymembers or doctors, 44% responded that theythought the patients suspected or knew they hadcancer, despite not being told directly, and 29%answered that they felt the patients did not knowtheir diagnoses at all.23

Recognising the growing importance of cancerdisclosure as a public health issue, the Ministry ofHealth and Welfare and the Japan MedicalAssociation published a manual to help guidedecision making.24 In one key section it states:

"In regard to disclosure of cancer diagnoses, it isnot appropriate to tell terminal patients uniformlyin all cases. However, the merits of disclosing theterminal diagnosis are significant. It is importantto make efforts to disclose the truth while balanc-ing the advantages and disadvantages of disclo-sure. The patient's age, sex, personality or beliefs,relationship with the family, social status, lifeexperiences, and preferences for terminal care, etc

should be considered carefully. The expressionand timing of disclosure should be carefully con-sidered; indirect disclosure is also a choice."(Authors' translation)The manual then lists four important factorswhich should be taken into account when consid-ering whether to disclose a cancer diagnosis: 1)the purpose of disclosure should be clear; 2) thepatient and family members need to be able toaccept the diagnosis; 3) the nature of the relation-ship between medical professionals and patientand family should be considered, and 4) psycho-logical support should be provided to the patientafter disclosure. These recommendations haveclear symbolic significance, though it is unclearwhat impact they have had on clinical practice.

Case analysis1) FAMILY IN DECISION MAKINGThis case illustrates the common pattern of "fam-ily consent for disclosure" of the cancer diagnosisin Japan. A physician often discusses the cancerdiagnosis with the family prior to discussion of thediagnosis with the patient.9 21 It is commonly heldthat the family best knows the patient's personal-ity and the patient's ability to handle informationabout the cancer diagnosis. Physicians and familymembers alike fear that the patient will beshocked by a diagnosis of terminal illness and losehope. Since the family's support is essential for thecare of the patient, physicians feel it is best to seekthe family's consent for disclosing a diagnosis ofcancer to the patient, even when the patient iscompetent. This pattern of consultation empha-sises the particular importance of the family'swishes and their influence on decision making.25 Ifthe physician thinks the patient should be told,frequently he or she will try to persuade the fam-ily to disclose the cancer diagnosis to the patient.2'Ultimately, without the family's consent fordisclosure, a large number of physicians feel thereis no alternative but not to disclose the diagnosisfully and to deceive the patient if asked directly.21Tomoaki Tsuchida sees the power of the family

in disclosure decisions as a reflection of the fami-ly's role in Japanese society in general. In acomparison with cancer disclosure in the US, hestates:

"For the American, it is not only a right to exercisecontrol over one's own destiny, but also, one's duty.Death and life are one's own private concern. TheJapanese, in contrast, have lived for centuries in ahighly integrated and contextualized society whereeven life and death have to be seen as a family affair- if not the affair of the community as a whole - asmuch as the affair of the particular individual.



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298 Family consent, communication, and advance directives for cancer disclosure: a J7apanese case and discussion

Without the consent of the family, a doctor is notexpected to inform a patient of a fatal illness oreven to undertake serious surgery, much less organtransplant."26While the family's role in clinical decision makingfor patients in Japanese society is important, thereis an obvious risk of overemphasising it. Societalchanges such as industrialisation have had anenormous impact on the family and have resultedin less community cohesion.26 There have alwaysbeen patients without family members, and thenumber of nuclear families in Japan is increasing.Further, the media has taken an active role in pro-moting disclosure of the diagnosis and it hasbecome common to disclose information about anearly stage cancer diagnosis directly to thepatient.22 27 Finally, there are cases when familydecision making conflicts with the best interests ofthe patient. Under such circumstances, interven-tion by doctors or others may be necessary.

2) COMMUNICATION STYLEThis case also delineates unique communicationpatterns about the cancer diagnosis in Japan.First, the physician initially communicated thecancer diagnosis to the family. Second, the physi-cian gave the patient information about hercondition which was ambiguous and, at facevalue, inaccurate. The physician here said: "Youdon't have any cancer yet, but if we don't treatyou, it will progress to a cancer". Not only did thepatient indeed have cancer, but also she had anincurable cancer with a dismal prognosis. Somewould object that conveying incorrect informationto a patient hardly amounts to disclosure. In thecontext of Japanese language and culture, how-ever, we assert that there is much more beingcommunicated than contained in the literalwords. The fact that the treating physician evenmentioned the word "cancer" sends an implicitmessage to the patient that there is a very seriousproblem. Readers of Japanese would knowintuitively that the patient would sense that shemight have cancer because the physician actuallyused the word "cancer". In this way, he ambigu-ously disclosed the truth to the patient.

Further, the way the message was presented tothe patient could be interpreted in more than oneway. One interpretation, a literal interpretation ofwhat was said, is that the patient is affected by apremalignant condition. A second interpretationis that she indeed has cancer, but that herphysician, in accordance with the family's request,did not want to shock her with overt disclosure ofthe cancer diagnosis and wished to leave her withthe option of hope. In this way, the patient has the

option of either a positive interpretation that shehas a premalignant condition that is treatable, or anegative interpretation that she does in fact havecancer and that her physician is trying to be sensi-tive to the fact that she has an incurable conditionand does not want to force her to hear the truth.Similarly, the physician considered the family'spreference for the patient not to be told the diag-nosis as he never explicitly told the patient she hadcancer.The pattern of communication in this case

reflects an understanding that many Japanesepeople are accustomed to and commonly preferambiguity. There is no need to be direct aboutsuch a delicate matter, and in fact, being too directis often considered insensitive and cruel. Thoughit appears that the physician actively deceived thepatient, it could be interpreted that he wasoffering to tell her the details of her case, but in aculturally sensitive way. His ambiguous presenta-tion of the information to her could be regarded asa sombre overture to discussion of the case,although only the strong-willed would push toopen the crack in the door. The ambiguous pres-entation in this sense may represent a Japaneseform of "offering truth".28 Discussions about can-cer disclosure often become stuck on whether thediagnosis was or wasn't told. This case illustratesthat the debate ought to focus as much attentionon the process of communication in the course ofproviding sensitive medical information to pa-tients.

3) ADVANCE DIRECTIVES FOR CANCER DISCLOSURE

While we believe many Japanese people wouldagree with our interpretation of the communica-tion patterns in the above case, the process ofsecond-guessing may require the use of mentalenergy, both for the physician who has to conveyinformation to the patient, and for the patient andthe family who must second-guess the infor-mation communicated by the physician. Anadvance directive for cancer disclosure mayreduce the mental energy required in this indirectprocess. In common parlance, an advance direc-tive is obtained with the intent of directingdecision making when the patient loses decisionmaking capacity. In contrast, we define the"advance directive for disclosure" as a verbal orwritten declaration from the patient that indicateshis or her preference for disclosure of informationin the event cancer is diagnosed, even if the patienthas decision making capacity at the time of diag-nosis. This kind of approach for resolving thedilemma about whether to disclose a cancer diag-nosis in Japan has been previously proposed.29 30



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This case presents one example of an oraladvance directive for cancer disclosure. Thepatient expressed her preference verbally to thefamily at an unknown time in the past when shewas healthy. She indicated in advance her prefer-ence not to be told a cancer diagnosis. While thereremains some need for second guessing aboutwhether her preferences might have changed, wewould assert that her advance directive for disclo-sure provided a tangible coordinate for directingdecision making. This illustrates its appeal: thepatient had input into the decision, but was notforced to confront directly the implications of hercancer diagnosis.

Clearly, interest in the topic of advancedirectives in Japan has increased. The Japan Soci-ety for Dying with Dignity, established in 1976,has witnessed a steady rise in membership to morethan 90,000 members (about 0.08% of the totalJapanese population) as of May 1999. Moreover,recent empirical research illustrates the degree towhich awareness of advance directives isspreading.31 In one survey of 210 healthy malesubjects (94.2% response rate) who visited twourban general hospitals for physical check-ups,80.5% of respondents knew the term "living will"and wanted to express their preferences for futuremedical care. Regarding disclosure of diagnosisand prognosis, 79.7% indicated a desire to desig-nate their preferences in advance. Most (87.8%)answered they would give extensive leeway to sur-rogates to override their preferences and did notfeel the necessity for detailed, concrete directives.Sixty-two per cent answered that oral statementswere enough, while 29.7% thought that writtendocuments were necessary. In regard to their pre-ferred surrogate decision maker, 80.2% answeredthey would designate family or relatives, in mostcases a spouse. Of the 38 respondents (18.1%)who did not want to express their preferences inadvance, the most common reasons given for notwanting to complete a living will included: 1) psy-chological resistance to talk about death anddying; 2) difficulty imagining future circum-stances, a factor that highlights one of thetheoretical limitations of advance directives, and3) their preference for entrusting family to makethe decision.Although many Japanese people have heard of

advance directives in the form of a living will, lessthan 1% of the population has completed one inwritten form.3' Neither advance directives norpower of attorney have been afforded legal statusin Japan through legislation. Given the long-standing tradition of ambiguity in Japaneserelationships, it is unclear whether written advancedirectives can be expected to become a widely uti-

lised mechanism for the expression of patientautonomy as conceptualised in modern medicalethics for cancer disclosure or end-of-life treat-ments.

4) UNIVERSALITY OF AUTONOMY

The North American bioethicist Edmund Pel-legrino argues that autonomy or "something closeto autonomy" is a universal principle and not justa "cultural artifact".32 He argues that "... thedemocratic ideals that lie behind the contempo-rary North American concept of autonomy willspread and that something close to it will be thechoice of many individuals in other countries aswell". He suggests that a nation can enjoy thebenefits of medical progress only by dealing con-structively with the conflict between traditionalvalues and modern medical progress.

Yet when considering this issue in the inter-national context, the term "autonomy" should beused carefully since it is not a concept with onlyone meaning.33 Pellegrino does not specifywhether his notion of a North American conceptof autonomy refers to the definition of autonomyor the degree of exercise of autonomy, or both.Surbone's remark that autonomy is often synony-mous with isolation in Italy illustrates that theexercise of autonomy differs in Italy and NorthAmerica, even though the definition may be verysimilar.'

If autonomy and what it represents is to beviewed as a truly universal principle then it isplausible that the North American paradigm isonly one version of it. There is no necessity forevery country to follow the practice of autonomyin all of its details in a fashion identical to thatfound in North America. Pellegrino himself seemsto be advocating autonomy in general, and notadvocating exclusively the North American ver-sion ofautonomy as a universal principle since it isso enmeshed with facets of Western culture suchas science, ethics, and politics. He states:

"The dominant characteristics of Western sci-ence, ethics, and politics are mutually supportive:Western science is empirical and experimental,pursuing objectivity and quantification of experi-ence. Ultimately, it attempts to control nature tothe greatest extent possible. Western ethics is ana-lytical, rationalistic, dialectical, and often secularin spirit. Western politics is liberal, democratic,individualistic, and law-governed. Western sci-ence, ethics, and politics provide an environmentthat gives rise to, and sustains, the use of complexmedical technologies. As a result, it is difficult todivorce medical knowledge and the benefits it



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300 Family consent, communication, and advance directives for cancer disclosure: a _Japanese case and discussion

offers from the Western cultural and ethical milieuthat supports and sustains it.""4The fundamental question thus becomes: "Whatwill 'something close to autonomy' look like inother countries?" Specifically, does this caseinform us about what "something close toautonomy" looks like in Japan?Some might assert that the process of ambigu-

ous disclosure is not consistent with the meaningof "respect for something close to autonomy".The disclosure process in our case did not includea frank dialogue between the doctor and thepatient, which is commonly held to be necessaryin most contemporary articulations of the opera-tion of autonomy. However, one cannot claim thatthis patient's wishes were not considered. Sheexpressed her preferences in advance and thesepreferences were confirmed by her treating physi-cian through ambiguous disclosure. She couldinterpret the message as being that she hadcancer, or that she didn't have cancer. Since thephysician didn't explicitly tell her she had cancer,her preference not to be told was partly respected.At that time she had the opportunity to ask ques-tions if she so desired, contrary to her previouslyexpressed wish not to be told. The patient's fam-ily played a critical role in facilitating her wishesand supporting her until the time of her death.Thus, in the context of Japanese society it can beargued that "something close to autonomy" wasrespected.As this case reveals, concepts may exist in Japan

that are similar to autonomy in the broad sense,even though the concept of autonomy has notbeen developed to fit the contemporary Japanesecontext. Higuchi proposes that a modified versionofautonomy could be used in Japan." He suggests"autonomy" could be achieved through a processsimilar to that of "self-determination". However,his provocative analysis doesn't provide sufficientdetail, lacking such important items as a definitionof autonomy and an accounting for its implemen-tation in clinical settings. Clearly, there is a need todevelop a new or expanded formulation ofautonomy for contemporary Japan.

ImplicationsWhile the "universal" concept of autonomy isregarded as accommodating cultural pluralism,practical problems may arise in transculturalsettings among people from culturally diversebackgrounds who may not be familiar with oraccustomed to exercising autonomy."6 37 Learninghow to deal with diverse patients in a culturallysensitive manner is an urgent item on the medicalethics agenda. Several deliberative discussions

seek culturally sensitive approaches for clinicalsettings.28 38 39 Non-verbal communication andambiguous disclosure as in the current case areknown to occur in clinical practice outside ofJapan as well.40 "

This case discussion provides a window forunderstanding the magnitude of the ethics researchagenda for contemporary Japan. As in other coun-tries without a tradition of cancer disclosure, acompelling issue remains how to define "somethingclose to autonomy" in a way that is consistent withindigenous moral values, and does not threatencultural identity. Criticism of the Anglo-Americanphilosophy as ethnocentric alone will not help solvethe real-life ethical dilemmas of non-Westerncountries. Although autonomy may be construed asa universal principle, the definition or exercise of"something close to autonomy" in other countriesmay ultimately be very different. We posit the needfor more exploration ofthe meaning and applicabil-ity of autonomy in Japan and other similarlysituated nations.We believe autonomy or "something close to

autonomy" as a concept should be furtherdeveloped by taking into account the culturalcontext. Further analysis of cancer disclosure inJapan has relevance for countries or cultureswhich are adopting modern medical sciences butwhere disclosure of cancer is not a social norm.Finally, we believe improved understanding ofcultural differences, communication styles, andalternative accepted roles of the family in medicaldecision making will further the understanding ofmodern medical ethics in pluralistic societies.

AcknowledgementThis research was made possible in part by aGrant-In-Aid for Scientific Research, nos10557238 and 09672297 by the Ministry of Edu-cation, Science, Sports, and Culture, Japan, (AA);the Robert Wood Johnson Clinical ScholarsProgram (MF); and the Japan-United StatesEducational Commission (the Fulbright Pro-gram) (TE).

Akira Akabayashi, MD, PhD, is Assistant Professor inthe School of Health Science and Nursing, TheUniversity of Tokyo, 7apan. Michael D Fetters, MD,MA, MPH, is Assistant Professor in the Departmentof Family Medicine, University of Michigan, AnnArbor, Michigan, USA. Todd S Elwyn, MD, JD, isResident in the Department of Psychiatry, Universityof Hawaii, Honolulu, Hawaii, USA. Correspondingaddress: Dr Akira Akabayashi, School of Health Sci-ence and Nursing, University of Tokyo, 7-3-1 HongoBunkyo-ku, Tokyo 113-0033,Japan. Tel: 81-3-5841-3488, Fax: 81-3-5684-6083.



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