In a manner of speaking : exploring differences in discourse on illness and disclosure in Japan and the United States

In a Manner of Speaking

Exploring differences in discourse on illness and disclosure in Japan

and the United States

Bachelor thesis Cultural Anthropology University of Amsterdam

December 9, 2014 Word count: 12117

By Renske Diks Student no.: 6070566

Counselor: dr. Vincent de Rooij Second reader: dr. Rachel Spronk

Climbing, forever trying

Finding your way out of the wild, wild wood

CONTENTS

Introduction

Ways of disclosure of and ideas about cancer in the U.S. and Japan The masking of diagnosis in Japan

Horror and social death Open disclosure in the U.S. Hope, will and control

Matter out of place Purity and Danger

The patient as matter out of place The illness as matter out of place

At Risk

Douglas

Avoiding knowledge and gaining expertise as coping Revisiting hope and control

Conclusion Bibliography

INTRODUCTION

In a previous paper (Diks 2014) I discovered that ways that physicians disclose the diagnosis, prognosis and treatment of cancer to their patients can have an influence on the experience of hope and the feeling of being betwixt and between during the process of being ill. I wondered, when being terminally ill – dealing with cancer that has spread – how can one make and maintain hope? I felt the need to explore this question, because I was frustrated. I really didn’t understand how you could possibly maintain hope, when looking at a ‘death end’. This

interest and frustration came from a personal nature. My partner Sandy was diagnosed with breast cancer over two years ago. I witnessed a lot of conversations with various physicians; oncologists, radiologists and surgeons. I found it interesting how ways of speaking to Sandy had a clear outcome in her emotional state. One oncologist relied on statistics and ‘being realistic’ in his ways of disclosure and told Sandy – even though she seemed to be on the road to recovery – that the cancer would likely come back within five years. Afterwards she told me “I am going to die if I stay with this physician.”. The cancer did come back, within a few months and Sandy moved to another hospital. Her new physician received an official letter from her previous oncologist stating she didn’t want to hear anything about a prognosis. Even though, knowing in retrospect, Sandy only had one more year to live, she felt as though she would live for at least another 27 years. Not knowing the exact statistics about her prognosis gave room for hope and that ultimately changed the outlook on her life and illness. She radically changed her lifestyle by eating healthy and forced herself into positive thinking. Thus, the differences in ways of disclosure seemed to change the experience of Sandy’s illness.

During the final touches of concluding this paper, I re-read a scene from Bret Easton Ellis’ 1985 book Less Than Zero, in which the reader follows main character Clay during Christmas break in Los Angeles, through parties and piles of drugs. Clay and his friend Rip drive over Mulholland Drive and take a turn:

And later when we got into the car he took a turn down a street that I was pretty sure was a dead end.

“Where are we going?” I asked.

“I don’t know,” he said. “Just driving.”

“But this road doesn’t go anywhere,” I told him. “That doesn’t matter.”

“Just that we’re on it, dude,” he said.

I concluded that for Sandy taking the power back into her own hands; choosing how she would want to be talked to by physicians and trying to ‘heal yourself’ was her way of

managing hope. Being able to think ‘I am still here, I’m still on this road’ gave room for hope. It can also serve as a way of coping with a liminal phase in which the patient feels betwixt and between and that in theory could only be overcome by death. This betwixt and between state relates to what in this thesis I call ‘social death’, meaning a person is not biologically death, but also isn’t (treated as) a full functioning member of society.

There are cultural specific notions of cancer, and of what is ethical to tell the patient. I use the term discourse in this sense: the ideas of and the ways people talk about both ways of disclosure (diagnostic discourse) and illness and specifically; cancer. According to Mary-Jo Delvecchio Good, ‘Oncology has its own local culture’ and attitudes toward cancer, discourse and ways of disclosure differ locally (Delvecchio Good 1990: 60). In the United States, it is ought to be most ethical and in the patient’s best effort to disclose as much as possible about the diagnosis, prognosis and treatment of cancer. This will help to build a partnership between the physician and patient, but also establish hope. Knowledge about the illness and the

confidence of possibilities play an important part in the making of hope. In Japan, these American ways of disclosure are viewed as cruel and unethical. There, cancer – unlike other illnesses, such as heart disease – is associated with pollution and horror. In order to protect the patient from a potential ‘social death’, the disclosure of the diagnosis of cancer, especially when it is life threatening is often masked (Long & Long 1982: 2101 ). Here, the making of hope is also of great importance, but it seems to be established in the opposite way, when comparing it to the United States.

In this thesis, I’m looking at ways that physicians disclose (bad) news to their patients and how this might influence experiences of illness. When looking at ways of disclosure, I pay attention to local ideas, attitudes and a particular discourse on illness and cancer within a cultural context. There are a few reason as to why I have chosen to compare discourse of illness in Japan and the United States. In my years of studying anthropology I have focused on these regions, since both of them had a great power of attraction on me. Now that I bring them together in this thesis, it feels like the circle becomes hole. The second reason is because of a certain anthropological legacy I gained. Thinking in matter as oppositions, classifying the other as ‘the other’ that is different from yourself, is something that people all over world do, and something that Douglas argues as well: all people think in oppositions of clean and dirt,

of in and out. Close to home, I see that especially the last few years ‘the other’ has become troubling. An example I want to bring up shortly is that of the Zwarte Piet discussion. Dutch people unite themselves in groups that are either for or against the change or disappearance of Zwarte Piet. Reactions are of extreme emotional nature, as people argue that they are afraid of the loss of tradition, that foreigners are getting their way if Zwarte Piet will disappear and that those same foreigners are destroying ‘our’ country and true Dutch culture. More than ever, others are matter out of place. My point is that I feel that in many cases people notice that there are differences between us and them, but hardly take the trouble to understand one another. As an aspiring anthropologist, I find it hard to watch how people – even those close to me – think so strongly in ‘us’ and ‘them’, as if we are all that different. The United States and Japan are cases that seem to be each other’s opposites within my field of research. At first look, it might be hard to understand why the Japanese and Americans deal with cancer in certain ways, and that is exactly why in this thesis, I am making an effort to 1). explore differences in diagnostic discourse and discourse on illness between Japan and the U.S., look at local attitudes and deeper cultural notions that influence differences in discourse 2). Help myself (and my audience) to understand these differences and 3). Ask myself ‘is there really such a great difference between the two?’

As a theoretical framework, I rely on anthropologist Mary Douglas, who has been my source of inspiration and enjoyment for the last few years. In this thesis she will be my leading lady. I will focus on her theories of pollution, danger and risk and connect them to ways of disclosure and attitudes toward illness. In Purity and Danger (1966), Douglas writes about the how ideas of dirt and pollution relate to ideas about order and disorder. According to Douglas, ‘dirt is essentially disorder’ (Douglas 2002 [1966]:2). To restore order, dirt must be handled as matter out of place. I will connect these processes of determining what matter out of place is, what to in – and exclude for the sake of order, to attitudes toward illness. I want to argue that both Japan as the United States have dealt and are dealing with illness and the ill as matter out of place. At first look, the main difference between the two cases is that Japan treats patients as matter out of place, as the diagnosis of cancer will lead to ‘social death’. In the US, the illness, rather than the patient himself, is matter out of place. Through a discourse on cancer as an illness that you can take control over, that you can survive by fighting, the patients may be received by their environment as heroes and survivors instead of matter out of place. In Risk and Culture (1982), Douglas wonders whether risks are increasing or if people are more insecure. I ask the same question as Douglas, because I expect that different ways of dealing with possible risks could explain as to why Japan and the United

States have very different ideas and approaches when it comes to cancer, while they are in the possession of the same medical knowledge. I start out with the exploration of ways of

disclosure and attitudes of cancer in both countries, after which I will introduce Mary Douglas and head to concepts like matter out of place and risk management.

DISCLOSURE AND IDEAS OF CANCER IN JAPAN AND THE U.S. The masking of the diagnosis in Japan

In Japan, a patient with cancer, especially when it is terminal, isn’t told about its true

diagnosis, and may go home thinking they have anything but cancer. Physicians can tell their patients: ‘don’t worry, it isn’t cancer’. In Curable Cancers and Fatal Ulcers (1982), Long and Long notice: ‘Patients are commonly told they have pneumonia when they really have lung cancer, or a benign ulcer when they have stomach cancer, or a vague ‘inflammation’ for other malignancies’ (Long & Long 1982: 2103). Some physicians even go so far, that they have two separate files considering the patient’s diagnosis, one that contains the patient’s true

diagnosis, and the other with the diagnosis of a different type of illness. (Nickerson in Boston Globe 1989). How is it possible that a patient goes home thinking he has something minor, non-life-threatening like kidney stones while in fact he is facing death by terminal cancer? How is it possible that patients walk out of a hospital without knowing their true diagnosis and possible treatment options? Is it even ethical to not disclose a patient’s diagnosis? In

Responsibility and Cancer Disclosure in Japan, the authors open with their article with a

moving text from Yamazaki’s Dying in a Japanese Hospital (1996):

After two weeks of hospitalization, he noticed that his condition did not improve beyond a certain point… His questioning and his anxiety could be seen plainly in his eyes, but doctors, nurses and even his own wife no longer tried to look him in the eyes… Then he noticed that everyone in contact with him – his doctor, the nurses who drew phlegm, his friends who visited him, and even his wife – all ended their talks with him in the same way, “Surely you will get better.” Within weeks he had had enough of it all, but nobody tried to understand his feelings. Do I really have pneumonia? Is it curable? Will there ever be an end to this? Why am I suffering so much? (Elwyn, Fetters, Sasaki & Tsuda 2002: 281)

Mary Delvecchio Good et al. mention that Japanese ways of masking the diagnosis of cancer is deeply embedded in modern oncology, and that non-telling still seems to be the dominant

discourse when it comes to ways of disclosure. Delvecchio Good describes the case of a Japanese woman whose diagnosis of terminal liver cancer wasn’t disclosed by her physician. She went home thinking she had gallstones, for which she dismissed the option of surgery. After her death, her family sued the hospital. The suit was rejected by the court because ‘the extent of disclosure is at discretion of the physician’ (ibid: 63). Another case is that of

Japanese emperor Hirohito. He died at 87, reportedly from ‘declining health’ that followed an

operation on his pancreas1. The emperor apparently never received his true diagnosis of

cancer and his physicians responded after his death by saying that ‘Our guideline of treatment was to keep the diagnosis completely secret from His Majesty’(Nickerson in Boston Globe 1989). Nickerson acknowledges the fear that follows a cancer diagnosis and the urge of Japanese physicians to not frighten their patients. However, he does call the physicians’ approach to disclosure deceit, as he explains how physicians not only mask the diagnosis of cancer, but give patients a diagnosis of another, non-life-threatening illness.

According to Feldman, ‘medical ethics as we know it in the U.S. does not exist in Japan’(Feldman 1985: 21). He is surprised by the small amount of people interested in the field of medical ethics, although recently the subject has been getting more attention. Feldman notices two aspects in Japanese culture that influence issues in medical care that ‘the west’ might consider to be unethical. The Japanese society is harmonious. In relationships and interactions, the Japanese remain calm for the sake of harmony. It influences a

non-confrontational approach in medical care. Secondly, Japanese physicians are powerful and well-respected by their patients. There is a difference between the Japanese and American people in their respect for authority. This might be the reason as to why there are 90 percent less malpractice suits in Japan, and Japanese patients trust their physicians completely. Elwyn et al acknowledge in Responsibility and Cancer Disclosure in Japan that not telling patients their true diagnosis of cancer is ethically troublesome (Elwyn, Fetters, Sasaki & Tsuda 2002: 282). In Japan, there is a growing amount in public awareness, support for full disclosure and public debate, and physicians seem to increasingly disclose the diagnosis of cancer to their patients. Nevertheless, not telling is still the dominant way of disclosure in Japan, because physicians feel that it is in the best interest of the patient. ‘Some argue withholding the diagnosis from cancer patients who do not wish to be told represents a compassionate option that honors a patient’s choice’(ibid: 282). In their qualitative study, the authors have divided respondents in two groups: tellers and non-tellers. They concluded that tellers usually dealt

with patients that had a relatively good prognosis or had a cancer form that was noticeable. Non-tellers had a negative association with full disclosure and expected problems that would follow. Physicians were afraid that patients would enter a state of fear and shock, and that telling their true diagnosis was in fact the opposite of the patient’s wishes.

Japanese ways of disclosure have been getting more criticism recently, leading to studies of patient satisfaction, new therapies that pay attention to the psychology of the

patient, and physicians that start to disclose the true diagnosis to their patients. For instance, at the Shibata Hospital in Kurashiki, Japan, doctors have introduced a new therapy, calling it the ‘Meaningful Life Therapy’, in which the physicians try to see the beneficial elements of the fear of death (Reynolds 1989: 457). Apparently, the Japanese use the same word shi for two very different things: death and the number four. That is why in daily life, the Japanese avoid the number four (in serving food items on a plate, or in room numbers in a hotel), symbolizing the need to avoid the other meaning of shi: death. According to the physicians behind the ‘Meaningful Life Therapy’, the Japanese fear of cancer and death is quite problematic, since it leads to a person not being able to live life to the fullest. Rather than avoiding fear, it should be embraced, since it might offer a new found appreciation for life, and therapy should help to exclude negativity in the moment (ibid: 457-458). ‘Meaningful Life Therapy’ may have an impact on a greater audience, when the fight for cancer enters public life, as well as on doctors, who might feel more confident in disclosing the diagnosis of cancer. Thus, through this therapy, the patient could not only improve their quality of life, but also influence rooted structures of ways of disclosure.

Benefits of open disclosure to patients have come to light and Japanese doctors have been more open to disclose the cancer diagnosis. Partially because the possibility of early detection of cancer and more treatment options that make the chances of survival a lot better, and the cancer diagnosis doesn’t have to lead to an inevitable death (Sato, Beppu, Iba & Sawada 2012: 226). But, do patients really want to know their diagnosis and prognosis? Based on a recent qualitative study, the authors concluded that in fact the diagnosis of cancer is told more often, unlike prognostic disclosure. Very few of their subjects actually wanted to hear their prognosis, and only to prepare for death. Those patients that did hear their

prognosis, had to ask for it specifically. Most patients, however, preferred not to hear and reacted with shock when their physician did disclose their life expectancy without warning (ibid: 228). Physicians find the matter of open disclosure difficult. Even though they are aware that it is probably best for the patient, ‘they are not quite sure which patients are ready to receive prognostic information’(ibid: 226).

Authors Ishikawa, Takayama, Yamazaki, Seki and Katsumata have studied the relation between physician-patient relationships and patient satisfaction. They notice that the medical environment of western countries have undergone drastic changes in medical development and it has had its effects on physician-patient relationships (Ishikawa et al 2002: 301). Patient – centered care for instance has been getting more attention. ‘In the case of life-threatening illness, such as cancer, the physician-patient relation may be even more critical in the

treatment process as continuing care, complicated decision making, and patients’ uncertainty and anxiety place greater demands on the relationship’(ibid: 302). However, relationships between physician and patient are still greatly influenced by particular cultural context and language and thus relationships differ between western and Asian countries. Studying the result that various types of relationships with the physician had on the patient, the following was concluded: Japanese patients didn’t want to be approached by their physician in a direct manner and they didn’t want to leave room in the conversations with their physician for questions.

Horror and Social Death

In Curable Cancers and Fatal Ulcers, authors Long and Long argue that not telling patients their true diagnosis of cancer is influenced by local ideas about cancer. Exploring local

attitudes toward cancer might help us understand why Japanese physicians mask the diagnosis of cancer. Anywhere, being (terminally) ill faces the patient with uncertainty and a threat for one’s life (Long & Long 1982: 2102). But in Japan, having cancer is not just associated with uncertainty, but this illness specifically calls to mind the image of horror and inevitable death.

Gan, the Japanese translation for cancer is extremely terrifying for people,

and an informant called ‘cancer phobia’ a national disease (ibid: 2102). Long and Long mention two main Japanese visions on cancer: cancer as predator, and cancer as illness that leads to certain death. Like no other disease, cancer is seen as a predator, taking years to develop and seemingly coming to the surface out of nowhere. In this narrative, the body is called a prey. One informant noted that cancer ‘takes a long time to develop, but appears overnight’ (ibid: 2102). Cancer is also immediately associated with dying, and Japanese people don’t believe that there is a cure for cancer. Patients can’t possibly imagine themselves handling the diagnosis of cancer. They feel great admiration for those who are able to cope with the knowledge of death in a calm manner, but are insecure themselves about their own ability to have such a ‘strong spirit’ (ibid: 2102). In Japan, people generally don’t want to know about their lurking death because it results in the loss of hope. Therefore, they don’t

want to hear that they have cancer and physicians play a part in convincing patients that they don’t (ibid: 2102). But, wouldn’t a dying person put together the signs of his body and be aware of having cancer? An informant in Long & Long answered this question with: ‘Maybe. Or maybe the realization causes the death at that particular time’ (ibid: 2102).

Japanese physicians feel the responsibility in any case to keep their patients alive. They approach the disclosure in the case of cancer in a very different manner than with other diseases. The diagnosis of a heart disease, for instance, is told openly by physicians. But aware of the patient’s association of the diagnosis of cancer with certain death, and the

resulted loss of hope, the physician will often mask the true diagnosis. In able to keep fighting the cancer, the patient needs hope. Physicians have even expressed their worries about

patients committing suicide, after hearing the diagnosis of terminal cancer. Since ‘part of the job of keeping the patient alive is preventing the patient from allowing himself to die’ (ibid: 2103), most Japanese physicians feel that this approach is most ethical. In contrast to disclosing the diagnosis and giving the patient a death sentence, which they find to be extremely unethical. When the diagnosis is followed by a negative prognosis of the terminal cancer, this has big consequences for experiences of hope and the patient’s social status. Thus, not knowing makes room for hope: “As long as you do not know you have cancer, then you still want to live. As long as the doctor, whom we respect, tells us we do not have cancer, then we believe that we do not.” (ibid: 2102).

Elwyn, Fetters, Sasaki and Tsuda. also mention that both physician as the patient are unwilling to hear and tell the true diagnosis of cancer. The diagnosis may awaken such potential risks, that both parties express an aversion to it (Elwyn et al 2002: 281). By masking the diagnosis of cancer, especially when the cancer is terminal, the physician does not only protect the patient against the loss of hope and will to fight, but also against social death. Social death is a term that can be associated with dealing with matter out of place, which I will discuss later on in this thesis. Kastenbaum has defined social death as ‘a situation in which there is absence of those behaviors which we could expect to be directed towards a living person and the presence of behaviors we would expect when dealing with a deceased or non – existent person (Kastenbaum in Bailey et al. 2011: 1372 ). It involves an individual’s experience of social isolation, exclusion and not being accepted as a fully functioning human being. The experience of social death usually appears in a situation where the possibility of death is in the near future, but people are still alive in a biological sense. For instance, it can happen to ‘those in the final stages of a lengthy terminal physicial illness, the very old, and those suffering from loss of their essential personhood because of dementia or coma’

(Sweeting & Gilhooly 1991: 251). To recap, even though the ways of disclosure in Japan have been criticized and subject to change recently, non-telling seems to be the dominant form of diagnostic disclosure. Both patient as physician prefers it this way, because it results in hopeful experience of illness and it prevents social death and related risks of shock and depression.

Open disclosure in the United States

‘It kills the lining of the mouth. You can get terrible mouth sores. Pretty much, the hole inside of the mouth can pretty much fall off. Just fall off. Very painful’, an oncologist tells

filmmaker Louis Theroux in his LA Stories: Edge of Life series, about Cedar Sinai Hospital in Los Angeles. The physician explains the possible side effects when the patient’s body is not strong enough for chemotherapy. Theroux asks her patient if he is okay with hearing this. The physician and patient both laugh about it. This scene is striking for American physician – patient relationships. In the United States, doctors try to establish a partnership with their patients (Delvecchio Good 1990: 67). In Edge of Life, this partnership results in discussions between the physician and patient about different types of treatments and a sense of

togetherness when exploring options. Giving patients open disclosure about their diagnosis and prognosis of cancer is relatively new. In the 1950’s, the majority of general practice physicians surveyed indicated that they never or seldom revealed the diagnosis to the patient. Now, it is universally thought to be the most ethical approach. Doctors also feel that there is a legal obligation to give full disclosure (ibid: 59).

Delvecchio Good et al. explore ways of disclosure in the United States and in doing so come to the conclusion that American oncology has its own local culture, in which the

meaning of ‘hope’ and ‘will’ play key roles. American ways of disclosure are compared to those in Italy and Japan, that seem exactly the opposite. The difference in disclosing the diagnosis of cancer in countries that are equally progressed in the development of medical technology, suggests that ways of disclosure are also largely influenced by ‘local variants of internal biomedical culture, depending on cultural context’ (ibid: 59). In looking at American ways of disclosure, Delvecchio Good mentions that ‘the political economy of hope’ is an important influence on this local culture of oncology. Novas explained the political economy of hope as ‘becoming knowledgeable about science, in addition to activism, fundraising and heightening awareness of a particular disease are significant locales for helping to realize the objects of individual and collective hopes’(Novas 2006: 289).

Physicians rely on the making and maintaining of hope as a reason for their ways of disclosure. ‘American oncology is infused with a particular discourse on “hope”, it is grounded in popular American conceptions of the relationship between mind and body, or psyche and soma and it patterns modes of disclosure.’ (Delvecchio Good 1990: 60 – 61). In the United States, it is believed that there’s a relation between the mind and body. Managing hope, thinking positive and taking good care of yourself, may change the course of the illness or the patient’s outlook on life. Hope is established through ways of full disclosure about diagnosis, prognosis and treatment. Oncologists believe that by establishing an honest, partner like relationship with their patients, they can make sure the patient stays positive throughout the process of illness. Physicians are as honest as they can be about the cancer diagnosis in order to establish a partnership with their patients, since this will result in the patient taking better care of her/himself and feeling during their illness.

The relation between open disclosure and the making of hope is confirmed by various authors. In Communicating With Realism and Hope: Incurable Cancer Patients’ Views on the

Disclosure of Prognosis, a study of what people actually want to hear, Hagherty shows that a

majority of patents want their physicians to be realistic and treat their patients as individuals (Hagherty et al 2005: 1278). According to patients, a physician who seems to have full knowledge of the patient’s illness and their treatment options, and is also confident about controlling the illness, establishes hope. In Hope and Prognostic Disclosure, American

patients reported that the more information they received about their prognosis, the more hope they felt after (Mack et al 2007: 5636). Treatment options are an important aspect of

establishing hope through full disclosure. Patients do not only want to hear the truth about their diagnosis, but need to know that the doctor is able to do something about it (Holland 1989:557 ).

Hope, Will and Control

American ways of disclosure rely on cultural attitudes toward cancer as controllable and the importance of will and hope in fighting cancer. Funding for research relies greatly on the idea of cancer as a curable the disease, the message of hope and the idea of fighting ‘the war on cancer’. The importance given to the message of hope in the war on cancer, gives the

suggestion of will; ‘if one has enough hope, one may will a change in the course of disease in the body.’(Delvecchio Good 1990: 61). Will has to do with believing that there is a

relationship between the mind and the body, and that hope can influence illness. In

their care of patients but were ambivalent about hope and its actual biological consequences. ‘I don’t think it makes a biological difference, but it certainly makes a difference in your outlook and the way you live the rest of your life’, one physician says (ibid: 71). Another physician is more confident about the importance of hope and the possibility of what it can achieve in the patient;

They have to have hope and they have to have structure. Otherwise they have a clock ticking in their head. Doctors who don’t provide hope, facilities that don’t provide hope, or at least some positive outlook or support, the patients don’t stay.

There are enough cases to mention, in which the idea of hope and will is promoted through success stories. Anti-Cancer: A New Way of Life was a bestseller book written by psychiatrist David Servan – Schreiber. When Servan – Schreiber was 30 years old, he accidentally found out that he had a brain tumor. Together with two colleagues, he worked in a MRI center in San Francisco to look at brain structures. When they needed someone to take a MRI scan, Servan – Schreiber volunteered and after, his colleagues noticed something was wrong (Servan – Schreiber 2012: 27-28). He was aware of the statistics of the following diagnosis: a brain tumor in a late stage could take his life anywhere between six weeks or six months. After the diagnosis, he started ‘a new way of life’, which involved taking good care of himself by positive thinking, healthy eating, meditation and exercise. Eventually, he extended his life with another twenty years, while having an inoperable brain tumor.

Then there is Lance Armstrong, the famous cyclist that founded the initiative Livestrong after being diagnosed with cancer. I read the following text on the website of Livestrong:

Lance Armstrong is a father, cancer survivor, advocate and philanthropist. In 1996, at age 25, Lance found himself struggling for his life against testicular cancer that had spread to his brain, lungs and abdomen. Lance aggressively educated himself about his diagnosis and treatment. Even as he battled against overwhelming odds, he made the decision to declare himself a cancer survivor rather than a victim. During his personal battle with cancer, Lance recognized the lack of resources available to those facing this disease.

This small piece of text shows the idea of Armstrong as a fighter, a ‘survivor rather than a victim’, someone with the will to fight against all odds, who is willing take matter in their own hands and ‘aggressively educated himself’. Armstrong was embraced by enormous crowds of people, that all decided to show their support for Armstrong and all other patients battling cancer by slipping a yellow Livestrong band around their wrists.

On May 14th 2013, Angelina Jolie came out to The New York Times to say that she had

undergone a double mastectomy. After her mother had fought and died of cancer, Jolie learned that she had the BRCA1 gene, which greatly increases the chances of getting breast - and ovarian cancer. To be able to reassure her children and tell them not to worry, she

‘decided to be proactive and to minimize the risk as much as I could’. In her story, the message of hope and will is present. She explains how she felt an obligation to get tested, prevent risks of developing breast cancer and encourages women to do the same, because: ‘life comes with many challenges. The ones that should not scare us are the ones we can take on take control of.’. Another famous cancer survivor is Christina Applegate who – like Jolie – has undergone a double mastectomy. Applegate knew she was at risk for breast cancer, as her mother had had both breast as ovarian cancer, and stayed on top of it by getting regular mammograms. Getting tested so often, she was ‘lucky’ enough to find out that she had breast cancer in an early stage. After her treatment and recover from cancer, Applegate started a foundation called Right Action for Women, to make sure that women who are at higher risk for cancer can get low-cost screenings, possibly preventing them to find out the diagnosis of cancer too late. The way that famous cancer survival stories are usually presented with the introductory that these people have stood up against cancer, they have beaten it and they are survivors. These stories show and send out the message that having cancer in America, is – as long as there is a will – something one could get control over and survive.

Attitudes toward cancer and ways of disclosure of this illness seems miles apart, but this hasn’t always been the case. Both Japan and the United States have had a similar ethic toward treating the cancer. In Japan ‘doctors fight to the very last. They are taught to try to prolong the patient’s life for one minute, or even one second.’(Long & Long 1982: 2103). However, the Japanese attitude has shifted from the similar approach in the U.S. because of different believes in what makes hope. As I have mentioned, American ways of disclosure are strongly associated with the making and managing of hope. In Japan, hope too plays a key role in deciding what to tell and not to tell the cancer patient, especially when the cancer is terminal. ‘Japanese physicians ardently feel that by revealing the diagnosis to a terminally ill

patient, they will extinguish the patient’s hope. If the patient has no hope, he will not ‘fight to live’ and in many cases even commit suicide.’(Long & Long 1982: 2103).

While in the U.S. it is ought to be unethical to not reveal a patient’s true diagnosis, physicians in Japan find it unethical to give patients a death sentence. Feelings of what is ethical and not, is related to the importance of giving a patient hope. Hope in the U.S. is made through an open partner-like relationship between patient and physician, in which the patient has knowledge about his illness and the confidence of treatment options. It will result in the idea of ‘where there is a will, there is a way’. In Japan, hope seems impossible to establish when the patient cannot imagine getting cured from cancer and when death seems inevitable. The meaning of hope is thus influenced by different ideas about cancer. In the U.S., cancer is an illness that you can take control over. In Japan, it is associated with death and horror.

MATTER OUT OF PLACE Mary Douglas

I first encountered the theories of Mary Douglas in my first year of Anthropology and found them immediately interesting. In one of my classes the teacher told us to paint a picture in our heads of a clean bathroom with nothing but a few drops of water in the sink. I would set my eyes on the drain in the sink and notice that there are a few hairs in there. Immediately, it calls for a quite physical reaction of disgust and nausea and the hairs should be removed as quickly as possible. Even though the hairs are probably mine, I juggle the chore with the fight against a stomach that is turning. I don’t find the hairs on my head disgusting. Yet, in a clean

bathroom they are matter out of place. The example of hairs in the drain, is how we deal with matter out of place on a daily base.

Before exploring Douglas’ matter out of place further, a quick introduction to her theoretical background is in place. In the 1960’s, a structural approach emerged in

anthropology as a reaction to an evolutionary one, as a means to explain cultural differences. Levi – Strauss was an important pioneer in this movement and he argued that ‘the seemingly bewildering variety of social and cultural phenomena could be rendered intelligible by demonstrating the shared relationships of those phenomena to a few simple underlying principles’ (Ortner 1984: 135). Universally, people use the same grammar: that of talking and thinking in matter of oppositions. Through this grammar, rules of classifications are created. Looking at structures and oppositions that underlie cultural differences or phenomena and acknowledging that cultures can be compared in their use of the same type of grammar, counted as a reaction to the evolutionary approach, that used a classified cultures on a scale of

civilization. Whereas Western cultures were generally civilized, primitive cultures were behind on the latter. Structuralism was heavily criticized, in ignoring a person’s agency and not accounting for historic events that had had their influence on certain structures (ibid: 137-138). As a reaction to structuralism, social scientists started to focus on how people used their

agency to change and influence structure.

Douglas was influenced by Levi – Strauss, noticing the universal opposition between the clean versus sacred and the unclean versus unsacred in Purity and Danger (1966), but also gave room for ‘mediation of oppositions, anomalies and antistructure’ (Ortner 1984: 137). Her structural approach is relevant in this thesis, because I am looking at cultural differences that exist between Japan and the United States, that at firsthand seem each other’s opposites. But, underneath it all these cases might not differ that greatly. They may have the same kind of structure in thinking when it comes to dealing with matter out of place or risks. After

Purity and Danger, Douglas’ interested shifted to risk and noted how relevant her work on

taboo was for the theory of risk (Douglas 1992 : 4). I will explore the works Purity and

Danger, Risk and Culture and Risk and Blame further, and aim to connect them to attitudes

and ways of dealing with cancer in Japan and the United States.

Purity and Danger

So far, I have shown that at first look Japan and the United States seem right across from each other in the ways they disclosure the diagnosis of cancer to their patients. I will go on

exploring the comparison between the two countries through theories of Mary Douglas. Douglas’ ideas of pollution and disorder in Purity and Danger are useful to understand why ways of disclosure are the way they are both in Japan as in the United States. As I continue in this thesis, I find myself being able to link Douglas’ idea of matter out of place to the cases of Japan and the United States. Thomas Eriksen explains Douglas’ argument clearly for me in

Small Places, Large Issues:

The socialized body is ambiguous: it is simultaneously cultural and natural, both orderly and chaotic. Its natural aspects, including ageing and bodily functions are threatening and potentially dangerous, since they are symbolic reminders of the continuous threat of chaos and dissolution to the fragile social organism (society). (Eriksen 2001: 236).

Douglas states that ideas of dirt and pollution are related to ideas of order and disorder within a society (Douglas [1966] 1982: 2). There are powers at work in the structuring of ideas about society and its boundaries. Those boundaries become visible and publicly recognized when rules of the avoidance of dirt are followed (ibid:197). In any case, dirt is associated with disorder and danger (ibid2: 2). Order and disorder are created through ‘the other’. Following society’s defining of the other as an anomaly, as contagion, as dirt, it eliminates the other as matter out of place by suppression or avoidance, for instance. Douglas says that this process of elimination is a creative one, rather than something negative, because it positively restores order to society. ‘In chasing dirt, in papering, decorating, tidying we are not governed by anxiety to escape disease but are positively re-ordering our environment, making it conform to an idea’ (ibid:2). According to Douglas, ideas about pollution work at two levels. On the first instrumental level, ‘people try to influence one another’s behavior. Certain moral values are upheld and certain social rules defined by beliefs in dangerous contagion.’. On the second expressive level, ‘pollution ideas relate to social life. I believe that some pollutions are used as analogies for expressing a general view of the social order.’ (ibid: 6). The rejection of dirt happens in two stages. First, pieces of dirt are recognized as matter out of place. These pieces of dirt have a so-called dangerous half-identity. Their identity consists of being ‘unwanted bits of whatever it was they came from, hair or food or wrappers’(ibid: 197). By rejecting dirt, it loses whatever identity it still had. ‘So long identity is absent, rubbish is not

dangerous’(ibid:197). Finally, dirt disintegrates and returns to its formless character. The idea of matter out of place is applicable to illness and death. In Dying Cases in

Emergency Places, the authors argue that in the environment of a sterile hospital a dying body

can be seen as matter out of place (Bailey, Murphy & Porock 2011: 1371 ). Obviously, death occurs in hospitals’ emergency departments, but it primarily happens in acute situations. It is relatively recent that emergency departments in UK hospitals keep getting more patients with long time illnesses that seek out advice or help with symptoms. Physicians know that these patients are likely to die within a certain time, and there is a possibility that – seeking out palliative care – they will die in the hospital. Study showed that in the emergency department, certain patients receiving palliative care were treated as if they were already death. ‘Social death’ occurred.

When looking at attitudes toward illness in Japan and the US, I want ‘replace’ Douglas’ idea of dirt as matter out of place by illness as matter out of place. I want to relate attitudes toward illness and ways of disclosure to ideas about order and disorder. The idea of matter out of place may manifest in these countries in a different way, since I suspect that in

Japan the ill person is more likely to be classified as matter out of place, and in the U.S. it is the illness itself. But as I move on, I wonder: what about when American people classified people with AIDS as matter out of place? I realize that I am not exactly paying attention to a specific timeframe (and its political culture), but could it be that these countries deal

differently with matter out of place because their cultural notions of cancer in specific are so different; from something you inevitably die of in Japan versus something you are able to control in the U.S.?

In Japan: the ill person as matter out of place

Japanese group relations have been the focus of various authors, such as Hendry (1987). The importance of Uchi, the Japanese translation for group, is something Japanese kids learn from their parents early on. They learn that Uchi is more important than the individual person, and in a narrative the group is created and maintained in opposition to anything outside the group: ‘the rest’. The link to Mary Douglas is made, as Japanese people associate their own group as safe and anything outside its boundaries as unsafe and even dangerous (Beerkens 2006: 9). Just as people anywhere deal with the oppositions of clean versus dirt, the Japanese are strongly aware of the importance of ‘in’ versus ‘out’. The organized society and the

importance of the group have been key words to describe Japanese society, but according to Moeran (1984) individualism seems to emerge more and more. Through language, Moeran came to the conclusion that Japanese people, especially the ‘young’ ones, started to use new words to describe an appreciation for things. Whereas seishin had been the primary word to show appreciation for an art form, for instance, young people started to use kosei – translated to ‘individual’- as the new fashion word (Moeran 1984: 261). This change in language wasn’t appreciated by ‘the Japanese group’, as it was associated with the threat of individualism.

I visited Japan in 2010 and 2011. I had already learned about the importance of the Japanese group, and I felt that my experiences of and encounters with Japanese people confirmed this statement. The way that Japanese public transport was set up confirmed my suspicion of the Japanese as extremely organized. I remember waiting for a train to Kyoto at the Shinjuku train station in Tokyo. I had heard that the maximum delay time was 12 seconds (a day), and my train to Kyoto was no exception. Right on time, I moved myself to the line for my reserved train car. The doors opened right where the signs on the track said they would. There were some other things that I suspected to notice in Japanese culture. Working hard, achieving success and taking care of each other seem to be things that keep the group intact. I had a conversation with Sera, a young filmmaker from Tokyo, and a few of her friends, all

artists of sorts. They all chose a path of creativity and studied at art schools, which wasn’t appreciated by their entire environment. Each of them felt the pressure to get a ‘normal’ job and thought it to be likely that they would eventually have to drop their dreams of working as an artist – a choice that they had made for themselves – and go and work in an office. In this light, it was a bit painful when I looked out of my hotel window at night and noticed the majority of lights in the office building across the street burning brightly. I decided to stay and watch until everyone had dropped the work and left the building but eventually, I fell asleep when the lights of the office building were still on.

In line of the importance of the Japanese group, and in retrospect; the link to Douglas’ matter out of place, I experienced feeling like matter out of place myself in a Kyoto onsen, a bathhouse. My Japanese male host in Kyoto took me to the onsen as a surprise, but I hadn’t read up on the rules of conduct and was nervous to act in wrong ways. The onsen had separate bathing areas for men and women, which was comforting in a way, but now I only had myself to rely on. Walking in with a 1.70 cm long naked body and ginger hair, I turned a few heads and got some stares. Because of the focus on my naked body, I realized even more so that I was different, almost as if I was intruding. The fact that I didn’t speak their language, when a few women attempted to make conversation with me, while others just kept on staring at my breasts shamelessly, didn’t help. I was ‘the other’ and I didn’t quite belong here.

According to Mackie, Japan’s urge to keep the group together and their problem with anything outside of its boundaries, works through in the plan of the ‘Japanese-style welfare society’ that was introduced in the 1960’s (Goodman: 16). Following the introduction, the state’s support was mostly granted to those people who were able and willing to (re)produce. In contradiction: ‘Mackie’s paper suggests that its [the state] sense of responsibility is least in dealing with those – such as trans-sexuals, hermaphrodites and homosexuals – who either are, by definition, unable or, by choice, refuse to (re)produce’ (ibid: 16). This shows that the idea of the group – and in its core; the family – is embedded in Japanese culture and reaches into the medical field.

Looking back at how Japanese people deal with the diagnosis of cancer, I think it has an (unconscious) aim to prevent people from turning into matter out of place, to be excluded from the group. If the group and the maintaining of it are so important for Japanese people, I can understand the troubling category of patients with cancer. Especially during treatment (chemotherapy, rehabilitation after surgery, radiation) a patient isn’t able to work, which means that he possibly won’t be providing for someone and for the moment, he won’t be achieving any work related success. Plus, when bedridden or sick, the patient probably won’t

be that successful in maintaining a social life as well. As I explained before, the diagnosis of cancer may lead to social death. Interestingly enough, authors in my research haven’t really taken account for the physical aspect of cancer, and how this might be troubling when ignoring the diagnosis of cancer and preventing social death. Side effects of chemotherapies often involve the loss of hair, and especially when losing the hair of your eyebrows as well, the illness becomes visible. There are certain rules about visibility in Japan, about people’s public expressions of pain, and it might also involve changes in appearance (the loss of hair for instance). In fact, there are specific rules about childbirth: ‘that the mother was not

supposed to demonstrate any indications of pain’ and ‘that women in childbirth were polluted and polluting’ (Goodman: 17). There are ways to prevent the visibility of cancer – through avoidance of the diagnosis – but there isn’t always, and this may make the possibility of being excluded greater.

In the US: The illness as matter out of place

Cancer as pollution, an uncontrollable illness and a threat for the organized society are a few of the reasons for the Japanese masking of diagnosis. Because, the diagnosis of cancer could not only lead for experience of illness without hope of a future, but also lead to ‘social death’. I wonder if similar excluding of matter out of place happened in the United States during the AIDS epidemic. In 1993, Tony Kushner’s play Angels in America: A Gay Fantasia on

National Themes gained a lot of popularity and response, and finally made it to a HBO series.

I use Angels in America as a case because Kushner aimed to show attitudes of people toward patients with AIDS as matter out of place. In Angels in America, Kushner’s leading characters struggle with politics, religion and sexuality during the Reagan era. His main topic though is AIDS, as two of his characters suffer from the illness in a time that it was associated with pollution, homosexuality and death. One of them is Roy Cohn, based on the real life attorney responsible for the trial of Julius and Ethel Rosenberg. Cohn is diagnosed with AIDS, but claimed that he was suffering liver cancer and kept his true diagnosis a secret. Prior, one of Kushner’s other characters, doesn’t have to deal with an elite position and keeping up appearances like Cohn, but that doesn’t make him anything less of a pariah. After his

boyfriend leaves him for not being able to deal with the diagnosis of AIDS, Prior starts getting visions and barely leaves his home. He has lost both his boyfriend as well as contact with the outside world. When he does leave his home, he walks around with a black cloak, that covers everything except for his pale face.

When I look at cancer in America today, I feel as though instead of the person, the illness is treated as matter out of place. In the previously addressed examples of David Servan – Schreiber, Lance Armstrong and Angelina Jolie, it is noticeable that the will to fight cancer may not only make you a cancer survivor, it can turn you into a hero and an expert. As these three stories were largely addressed in the media, it seems that being open about illness accompanied by the will to take matter in own hands is received with open arms by others. I believe The American Dream, rooted in American culture, definitely has an influence on how people deal with their illness. The idea that, whatever your background is, as long as you have the will, you can achieve success and wealth relates to the idea that is embedded in American ways of dealing with cancer: as long as you have the will, you will succeed in surviving cancer. This idea is marketed through success stories that tell people that they have the aims to change the course of their illness and they can survive even when they have all odds against them.

The message that you as an individual are able to overcome cancer, seems to change to ‘we’ when success stories reach the public arena. I think that because cancer often hits close to home and most people deal with this illness some way or another, people are committed to the idea that the fight against cancer is not an one man’s battle, but it is ‘our’ fight. The American Cancer Society (and many other initiatives) sends out this message: ‘together we can defeat cancer’. With joining hands to beat cancer, Americans seem to do the opposite of treating a person with cancer as matter out of place. Cancer patients thus may be treated differently by others in Japan and the U.S., but then again, these countries have very different ideas of what the illness entails. I want to argue that whenever an illness is seen as

uncontrollable, Japan and the United States both might deal with it and matter out of place on a same level, and that matter out of place is universally dangerous for society, something that should be dealt with.

SOCIETIES AT RISK Douglas

After Purity and Danger, Mary Douglas’ field of interest shifted towards risk, as she came to the conclusion that the subject of risk was relevant and comparable to her findings on

pollution (Douglas 1994: 4). Her work on risk is presented is Risk and Culture (1983), that Douglas worked on with Aron Wildavsky, and Risk and Blame (1994). Risk became a field of academic interest during the 1970’s, when the growth of technological developments brought on risks and dangers. It became a hot topic, one on which Douglas had set her eyes years

before. Social scientists argued that ‘the public’ was aversive in risk management, since in knowing the possible risks, us fools still cross dangerous roads (ibid : 13). Douglas wasn’t satisfied with this statement and said: ‘for heaven’s sake, how could we have survived on this planet if our thinking is so inherently flawed?’ (ibid: 14).

‘Can we know the risks we face, now or in the future?’, is the question Douglas opens up with in Risk and Culture (1982). Douglas’ theory of risk follows hers about danger and matter out of place. As I have tried to show through Douglas, illness and especially those that are terminal, lead to a process of in – and excluding: putting matter out of place, a positive and creative process of restoring order in society. How then, do we know what counts as danger, filth and pollution? How do know what is risky? ‘Are dangers really increasing or are we more afraid?’ (Douglas 1982: 1). We classify what counts as dangerous, polluting, as matter out of place, and we do the same when it comes to risks.

Considering risk management as an important subject in my thesis, I was originally inspired by Joseph Dumit and his Drugs For Life (2012). In the last few decades, especially in the United States, health and managing the risk of illness have become increasingly important. Dumit argues that Americans are on drugs, now more than ever, and that this growth in

medication taking is accompanied by an equal growth of medical knowledge, clinical trials and testing for risks (Dumit 2012: 2 -4). Dumit mentions that people are troubled by a double insecurity:

Health in America today is defined by this double insecurity: never being sure enough about the future – always being at risk – and never knowing enough about what you could and should be doing. Paradoxically, the insecurity continues to grow despite there being an equal growth in research about risk, screening, and treatments and constant growth in the amount of medicine consumed each year – as if the more we know, the more we fear; and the more we fear, the more preventive actions and medications we need to take (ibid: 1 – 2).

Douglas on her turn notes that the growth of knowledge does not necessary reduces risks. ‘The advance of science increases human understanding of the natural world. By opening up new realms of knowledge, however, science simultaneously can increase the gap between what is known and what is desirable to know.’(Douglas 1982: 3). By learning more, people also become aware of what they don’t know. According to Dumit, pharmaceutical companies have played a key role in marketing the idea of people as inherently ill and at risk. Their ad

campaigns send out the message that people should get checked by doctors, be aware of risks they are facing and that they should reduce those risks by medicating themselves (Dumit 2012:). When communicating facts to their patients, physicians face some difficulty. The physician feels the urge to alert the patient and make him take action, but shouldn’t alarm the patient too much. The patient should ‘be concerned but not worried’(ibid: 28).

Aware of the possibilities of unfortunate events, people are faced with two important questions: ‘whose fault is it?’ and ‘what actions should we take?’ to make sense of it all. First, someone needs to get the blame and even though the form may differ per culture, blaming happens all around the world (Douglas 1994: 5). Blaming can have either a moralistic nature, in which a person has died because he lived of life full of sin, or an individual nature, when a physician is to blame for not curing a patient or the patient for not being smart enough in preventing the illness in the first place. For instance, I think of a man with lung cancer who wonders ‘why him?’ because he had never even lit a cigarette in his life. Or, I imagine people talking about this man and asking one another ‘is he a smoker?’. Also, looking back at

Sandy’s cancer, I remember that I put the blame on the physicians, from the moment of the news that her cancer had metastasized to months after her death. I was sure that surgeons had caused the cancer to spread during the operation in which they had removed the tumor in her breast, the one with which it all had started. I was telling people bluntly that when the surgeon had ‘cut into her’, his knife must have spread the tumor’s cancer cells to her blood. Writing this, I think of how irrational this blaming was, but it made sense at the time.

In taking action as risk management, there are several strategies in which a person can engage. According to Zinn, these ways have been divided in rational strategies, acting based on medically proven facts and objective knowledge, and non-rational strategies, such as hope, belief and avoidance (Zinn 2008:439). Like this distinction between rational and non-rational strategies, authors have noted a distinction between true and subjective knowledge and between real and perceived risks (ibid: 440). Zinn finds this clear distinction troubling and offers an in between strategy, for instance involving trust, intuition and emotion:

‘the most effective way of responding to risk is to acknowledge the reality of human decision-making especially the strategies in between the rational and irrational and these should be acknowledged and built in as a resource to manage unpreventable risks and uncertainties of the world’(Zinn 2008: 440).

Avoiding knowledge versus gaining expertise as coping

Different ways of disclosure might make sense, when looking at them as both ways of coping with risks. As Douglas and Dumit have put it, the growth of knowledge also brings on the awareness of that what is unknown. It brings on new risks and uncertainties. In minimizing those risks, Japan and the U.S. might act very differently in their risk strategies. Looking back at Japanese ways of disclosure, physicians don’t want to tell the diagnosis of cancer and their patients wish not to hear. Both parties lack the responsibility for the consequences of the cancer diagnosis. The patient rather trust his physician than taking matters in own hand. To repeat the statement of a Japanese patient in the article of Long and Long: ‘if the doctors says it isn’t cancer, we believe we don’t have it’ (Long & Long 1982:2102 ). The Japanese patients might engage in what Zinn called in between strategies, trusting their physicians completely, but even more in non-rational strategies, avoiding to hear their true diagnosis.

If it can be argued that ‘the more people know, the more they fear’ is something universally, the dominancy of non-telling in Japan might work as a coping mechanism. When a Japanese patient doesn’t know about his cancer, he may not feel that he is at risk, but even more so, his environment also doesn’t. As noted earlier in this thesis, the patient will not only experience hope if he doesn’t know his true diagnosis, it will also prevent a social death. Social death, not treating the patient as a hole member of society following the cancer diagnosis is another way of coping with risk. The cancer diagnosis faces both the patient as their environment with death and uncontrollability, but through avoidance of the patient one might find a way to deal with these risks. It is not just in the sake of the patient to avoid risks. By not disclosing, physicians don’t have to deal with great shock, depression, loss of hope and maybe even suicidal tendencies of their patients.

Americans seem to deal in another manner with risks that lie ahead. Dumit shows how specifically in the United States, pharmaceutical companies feed the idea of people at risk and their need to manage that risk. Americans are on ‘drugs for life’, as he puts it. Once, before the emerging of clinical trials and the flow of knowledge about risks, people used to see their doctor with symptoms that seemed to interrupt their lives. The doctor gave the patient his diagnosis, followed by a treatment, and the patient returned back to health. Now, even without symptoms, people are ‘ill’. They get screened for risks, the possibilities of developing

illnesses later on. Those risks can be managed by chronic medication, so called drugs for life (Dumit 2012: 8). Looking at physician-patient relationships in the U.S., both parties in the prefer open disclosure of diagnosis and prognosis. Americans seem to take more action than the Japanese in dealing with risks, and in doing so, basing it on as much medical knowledge

as possible and making sure that they have an individual choice when it comes to treatment, after being educated about it. In another light, that of Douglas’ statement that ‘protecting against one category of risk exposes to another’(Douglas 1994: 14), it is understandable that American physicians feel the need to disclose the diagnosis as honest as possible, since it deals with another set of risks: that of being blamed and possibly sued. The physician presents a variety of options to the patient, not only to try and establish hope, but also to prevent risks for himself.

Revisiting hope and control in a universal manner

Dealing with matter out of place and risk management are greatly influenced by cultural notions of what makes hope and control. I have seen that hope plays a key role in the ways of disclosure in both Japan as the U.S. In both countries, hope is an essential part in being ill, since it makes sure that the patient engages in treatment. If I want to argue that there is an universal importance of the making of hope and the managing of risk, it might be useful to mention how I have been aware of these processes during Sandy’s illness.

In the beginning stages of Sandy’s cancer, the tumor was localized. At first by Sandy herself, as she clearly felt the tumor in her breast when she moved her hand over the skin. Secondly, the tumor was localized by her physicians when they showed Sandy the scans of her body and said ‘as you can see, right there is the tumor and we are going to target it’. By manner of speaking by both Sandy and her physicians, the tumor was some kind of alien – matter out of place – that was going to get poisoned and destroyed. The story changed when the tumor had spread to Sandy’s lungs, about five months later. I remember that cold day in September, when we drove to the Antonie van Leeuwenhoek hospital for a meeting with a radiologist. It was the day before Sandy was supposed to start her radiation treatment, to prevent the disease from coming back, so we expected that the meeting was a formality, to discuss the treatment. However, the meeting was planned because doctors had noticed new spots in her lungs. With this new development, the narrative had changed from the tumor as matter out of place, to the entire body as ill. ‘Now it is an illness of the body’, the radiologist said to us. There was no longer a tumor to control, because it had spun out of control and had infected the blood that ran through Sandy’s body, creating a sick body. Managing hope became troubling because of the loss of control. The physician tried to maintain hope by telling Sandy that in theory, living another ten years was a possibility, but that the scenario had changed. Sandy tried to maintain hope herself, by radically changing her lifestyle in order to heal herself. The shift from the tumor as matter out of place to Sandy as matter out of place

was visible, since contact with friends and family became more difficult. She became very frustrating, having to answer the question ‘but you are going to be okay, right?’. She was not able to maintain the same social life because of the side effects of the chemo treatment and the cancer itself. One night, when we had planned to go out, I came into the living room and saw Sandy sitting on the couch with her coat on and eyes closed. Hearing me come in, she said ‘I am really trying to open my eyes, but I can’t’. Also, having to see loved ones sad because they are aware of the true life expectancy of the metastasized cancer, made Sandy want to exclude herself from others. Treating her as matter out of place was a process that both Sandy and her environment contributed to.

CONCLUSION

What are different ideas about illness? Why are things left unsaid? What could explain different ways of disclosing the diagnosis of cancer? These were questions I started out with, writing my thesis. Because of the focus throughout my studies on Japan and the United States, but also because of the seemingly big difference between the two in the way they handle illness, the choice for a literary study of comparison was a logical one to me. As I have showed, ways of disclosure of diagnosis, prognosis and treatment of cancer differ greatly between Japan and the United States. In the U.S., it is important to give the patient an as open and honest as possible idea of what is ahead of him: what does the diagnosis of cancer entail, what kind of options are there. In Japan, this kind of way of dealing with disclosure is cruel. Here, the diagnosis is often masked in order to protect the patient from ‘social death’.

Initially I wanted to answer the question ‘what could explain such a difference?’. I looked at Mary Douglas as my leading lady and found two concepts to be useful in the research. I wanted to explore differences between Japanese and American culture, but also show surprising similarities. First off, Mary Douglas writes about dirt, disease and pollution as matter out of place, a threat for the organized society. In Japan, cancer is associated with danger, pollution and an inevitable death. After the diagnosis, the patient may be treated as matter out of place. The importance of the group has been a dominant discourse in Japan, and the diagnosis of cancer may lead to ‘social death’ for the patient; the treatment as being matter out of place, when not being able to participate in the group like before. Interestingly, in the United States, not the patient but the illness is being treated as matter out of place. Cancer as ‘a fight’ and the possibility to survive when fighting hard on the battlegrounds is an image that has been largely marketed through media and survivor stories. ‘Celebrity

difference in the way Japan and the US deal with the concept of matter out of place. However, if we look back at the 1980’s, didn’t AIDS patients get the exact same treatment as being matter out of place, as cancer patients in Japan do today? I wanted to conclude that when an illness is associated with uncontrollability, it might have the same effect in two cultures that both deal very differently with the illness of cancer, specifically. It inspired me to look at another concept by Douglas: that of risk.

Douglas wonders: are there more dangers today, or are we more insecure? I have shown that while our (medical) knowledge grows, so does our insecurity about all that we don’t know, but could learn. There is more to explore, and there are more risks lurking out there. Are we dealing differently with the growth of knowledge and about the possible risks we face? Zinn noticed that people deal with risks through rational, non-rational and in

between strategies. Whereas Japanese patients would rather avoid hearing the diagnosis of

cancer to prevent themselves against the possibilities of risks, Americans seem to act based on facts, wanting full disclosure and educating themselves about their illness and options, in their turn to deal with risks as well. In conclusion, I have wanted show in this thesis that there are several points on which Japan and the U.S. come together. There is a difference in discourse on illness, influencing a diagnostic disclosure, but underneath there seems to be a similar importance of the making of hope, a physician’s ethical approach to treatment, an urge to exclude matter out of place and manage the risks people face.

There are a few things that I have learned in studying anthropology and that I have wanted to include in my thesis. Anthropology has opened my eyes wider and made me think more critically about the world around me than before. When my field of interest in health and the body got personal, with Sandy’s diagnosis of cancer, I found anthropology to be an instrument that enabled me to turn my frustrations and questions into something that could be explored and studied. I did so in this thesis. I haven’t ended with simple answers and this thesis might have led to even more questions, that if I were to explore them, I could possibly fill a book with. For instance, it might be interesting to look closer at how physicians (in Japan, the U.S., the Netherlands) learn to deal with bad news during their studies, and how they translate these lessons in practice. Or, how do gender, age, class, place of residence and education influence attitudes towards illness, or specifically cancer? Because, I realize that in this thesis I might have been tempted to generalize and I acknowledge that my exploration through differences in diagnostic discourse and discourse of illness might not count for all of Japan or the United States, but that there are differences within society between people. Nevertheless, I am satisfied with this thesis, as graduating comes in sight, because in it are

ways of thinking about the world. As an anthropologist, I want to understand, ask questions, think critically and not take anything for granted. It are these ways of thinking that I feel enriched with. How physicians disclose the diagnosis of cancer tot their patients in both Japan and the U.S. were quite hard to understand, without caring to dive in to it. But after exploring and trying to understand, I find myself being able to put a finger on things that are involved with an illness that is leaves you with so many questions of insecurity: why me, why her, will she get better, will she die. It might help myself – and you – to climb out the wild, wild wood.