Incorporating Patient Knowledge in Japan and the UK

A Study of Eczema and the Steroid Controversy

Miho Ushiyama

• Publisher: Routledge
• Year: 2019
• Print ISBN:
  9781032090054
• eBook ISBN:
  9780429805646
• Topic: Social Sciences
• Subtopic: Regional Studies
• Index: Social Sciences

Since the turn of the millennium, the potential for patients' knowledge to contribute to medical knowledge has been increasingly recognized by medical sociologists and anthropologists. Where previously such knowledge may have been written off as 'beliefs' and assumed to be inaccurate when it contradicted established medical science, it is increasingly recognized that patients—especially those with chronic conditions—can add a valuable perspective to the clinical knowledge of medical professionals. Sometimes this means working together to reassess treatment priorities, and at other times it may mean a patient-led movement to influence the direction of new research, based on patients' experiences.

Ushiyama takes the case of eczema (atopic dermatitis)—a chronic condition with a history of patient-led controversy over treatment methods - as a case study in how patient knowledge has come to affect change in medical practice. Comparing ethnographic fieldwork from Japan and the UK, she builds a complex picture of the differences in approach to treatment in light of attitudes to patients' knowledge.

1 Introduction

The problem of steroids

It hurt so much I could barely breathe. I wondered what I was living for. My whole body hurt yet felt numb. I couldn’t move my hands, but I couldn’t sleep either. The pain was too bad. Eating by myself was also too hard. I had to have food put into my mouth for me. I couldn’t even open my eyes, so I couldn’t watch TV. It was just kind of like counting from one to a hundred over and over. I’d scratch like crazy for about 12 hours, and then suffer terrible pain for another 12 hours. There was no chance to sleep. It was horrible. It hurt even to cry. There was no way I could cry, but my mother cried when she looked at me. I couldn’t see it myself, but it seemed like I was all swollen up and in a horrible state. I first had a relapse when I was 24, and I looked absolutely awful. When my mother first saw me—she’d just got home—she screamed so loud I thought I must be dead. She wiped the cuts around my eyes while she cried and told me about the state I was in. All the while I was wondering if I was still alive or not.

(Asami, 28, female)

These are the words of a 28-year-old atopic dermatitis¹ patient, Asami, describing how precipitously her condition had declined. While atopic dermatitis tends to be regarded as a light form of eczema, this disease has the potential to lead to desperate cases like Asami’s. Such severe symptoms, however, only manifest under specific circumstances such as when patients stop using topical steroids. Topical steroids are a synthetic equivalent of corticosteroids, a class of steroid hormones involved in the regulation of inflammation,² that can be rubbed directly onto the skin. Steroid medication can also be ingested as tablets; but in this text, the term steroids will be used to refer to topical steroids unless otherwise stated. There is not yet a cure for atopic dermatitis, so general clinics and hospitals cannot address the root cause of the disease and can only provide treatment for its symptoms. In the case of atopic dermatitis, symptomatic treatment primarily involves the use of topical steroids, and when topical steroids are discontinued after a long period of use, patients can experience a relapse, which is known as a ‘rebound’ or ‘withdrawal’ among patients. This relapse can lead to symptoms as severe as those suffered by Asami. Yet, even after Asami herself learnt about this, she nonetheless chose to discontinue treatment, and went on to face the ordeal she described. What, then, motivated her to take such a risk and discontinue treatment?

Topical steroids were first used to treat atopic dermatitis in 1952 by dermatologist Dr. Marion B. Sulzberger; he was the first to use them for skin diseases generally, and he reported their effectiveness in the treatment of atopic dermatitis. In Japan, steroid medication was approved by the Ministry of Health and Welfare (now the Ministry of Health, Labour and Welfare) the following year, and it soon began to be used in treatment. When steroids first began to emerge, people were greatly impressed by their near-miraculous results and started to abuse them with little awareness of their side effects. There were women in Japan who even used steroids as a make-up primer after hearing that they made it easier to apply cosmetics. People soon learnt, however, that continued use of steroids gradually leads to symptoms such as skin atrophy and thinning, hair growth and red facial rashes, including rosacea-like dermatitis. The Japanese media focused on steroids in the 1990s, leading to information campaigns about the horrors of steroids. At the same time, patients were discovering that steroids become less effective the more they are used, and cases of relapses like Asami’s grew more prevalent as more people stopped using them. This culminated in a significant avoidance of steroids and a so-called steroid phobia. From the 1980s into the 1990s, as the steroid phobia was spreading, a number of alternative Japanese therapies began appearing. These therapies claimed to cure atopic dermatitis and involved withdrawing from steroid medication. Companies targeting atopic dermatitis patients became so successful that they inspired the coining of a new term: Atopy Business (Takehara, 2000).

Asami sought out one such alternative therapy and was told that her atopic dermatitis would be cured if she stopped using steroids. She followed this advice and was soon enduring the ordeal she described. What this book aims to question is whether this stance against using steroids is unscientific, or if it is simply a respectable patient choice. Over the past few decades, the concept of what it means to be a patient has changed significantly. The idea of patient knowledge—that is, the knowledge patients have—has garnered a great deal of attention over this period and has been a key factor in driving change. This contrasts with how the professional knowledge of doctors has long been seen as the only legitimate source of knowledge. The doctor–patient relationship has been defined by a paternalistic model in which the patient blindly follows the authority of the doctor, with the patient’s treatment dictated solely by the doctor’s professional knowledge. With the increase in patients suffering from chronic diseases, conditions that cannot be cured by medical science have gradually come to dominate health care. The experience of these patients themselves has thus taken increasing importance. This has led to the view that patient knowledge should be valued even if it differs from professional knowledge.

The most significant challenges to respecting patient knowledge arise from the disconnects between the treatments patients desire and the treatments doctors provide. Whether patients’ wishes should be privileged or whether doctors’ professional knowledge should fundamentally determine treatment remains a source of conflict for those who support the idea of patient knowledge, and it could be said that the problems surrounding steroids are at the centre of this conflict. Should the opinions of patients who wish to discontinue steroids be respected, or should patients follow their doctor’s guidance despite their fears? Depending on the viewpoint taken, choices like Asami’s may be seen as unscientific and misguided or as reasonable and worthy of respect.

Whether the fear of steroids is scientifically valid or not remains unclear. Patients often come to mistrust steroids after long-term use because of medication no longer having clear effects or because of concerns about their long-term side effects. When patients suddenly discontinue steroids, however, many experience relapse. Some experience relapses so severe that they cannot attend school or work and find themselves isolated from society. After enduring such a relapse, which may last months or even years, many patients do experience some relief from their symptoms, but there is no guarantee of this.

Meanwhile, there is still no conclusive data on the long-term effects of steroid use. In severe cases of atopic dermatitis, patients must continue using steroids for decades, yet the longest clinical trial³ or investigation I could find that focused on their side effects spanned only one year (Luger et al., 2004). Patients thus have no long-term data to consult regarding what they intently want to know: what exactly happens if one continues using steroids for decades? The current situation thus makes it difficult to judge if fearing steroids is irrational and mistaken or logical and valid. However, such dualistic thinking—positioning steroids as either dangerous or safe—traps patients in perpetual confusion. It is precisely the lack of hard data or evidence that impels patients to seek solace in clear and confident claims.

With no definitive answers available, this book aims to explore the range of views to which patients are exposed. I conducted investigations in Japan and the UK and examined the differing positions taken by modern medicine, alternative medicine, and self-help groups in both countries, as well as the effects of these views on patients in their respective cultures.

The changing doctor–patient relationship

The doctor–patient relationship

This book’s investigation builds on an understanding of the history of the doctor–patient relationship and how ideas about patient knowledge have developed. In the treatment of atopic dermatitis, patients who resist using topical steroids are seen as problematic by doctors, and underlying this attitude is the implicit understanding that patients should follow their doctor’s orders.

This view is based on a paternalistic model of the doctor–patient relationship in which the doctor’s authority is unquestioned. In this model, the doctor is the expert in charge, and the patient’s role is simply to do what the doctor says. The history of this paternalistic model in modern medicine is an interesting one. In fact, the unquestioned authority of doctors is relatively recent, emerging with modern medicine’s rise in the 19th century. Prior to this, doctors did not necessarily hold a strong position over patients and could even be seen showing remarkable humility (Kodama, 1998).

Yoshihito Kodama (1998) researched medical treatment in medieval Italy and found that in both Western Europe and Japan, the profession of ‘doctor’ was originally a humble one. It was not until universities and medical education were established that the current image of the all-powerful doctor came about, which in Japan was from the Meiji period onwards. Roy Porter’s (1989) research on 18th-century quacks similarly showed that the power balance between patients and legitimate health care workers favoured the patient. Doctors at that time had little social standing and did not yet have any kind of professional association, so they had to endear themselves to their upper-class clientele for their pay, power, and status. Since they struggled to diagnose illnesses in an age that had no stethoscopes, X-rays, or laboratories, it was necessary for them to listen very carefully to what their patients said. In other words, the doctor–patient relationship required doctors to be good listeners and to respond to their patient’s every need. Porter (1989) explains that doctors in those days were expected to act on their patient’s orders, essentially serving to follow their patient’s whims.

Doctors became an authoritative presence only from the 19th century, when modern medicine established itself and doctors secured their status as professionals. Medical sociologist Eliot Freidson uses the framework of professional dominance to explain how doctors have attained their authority. Freidson claims that doctors have gained their position not through individual abilities or interpersonal trust, but through securing legal status as experts. Three of Freidson’s arguments are of particular relevance to understanding why doctors were able to gain their authoritative power.

Firstly, when the position of doctor became officially recognized as a profession, those without qualifications were no longer able to practise medicine, and doctors gained the exclusive right to provide medical services. Patients have since found it necessary to seek the advice of doctors whether they want to or not.

Secondly, since patients cannot procure vital materials or services without going through a doctor, doctors can be seen as holding power over them. Even if patients know the specific medicine they need, they cannot gain access to it without a doctor’s prescription. When doctors possess exclusive access rights to the materials patients require, patients must obey doctors.

Thirdly, by limiting their number, doctors are able to maintain their position of strength and avoid having to obey patient demands. If the number of doctors were to increase, clients might themselves become licensed and organize to get what they want. The authority of doctors would then be greatly diminished. By keeping their numbers small relative to demand, and by preventing patients from creating any kind of organization, doctors can thereby protect their position of authority (Freidson, 1970).

Freidson’s arguments explain well just how authoritative a position doctors were able to build for themselves by monopolizing medical treatment as a professional organization. However, this model of health care with absolute doctoral authority is now declining, with a model centred on patients beginning to form in its place. There are three key factors that help to explain the reasons behind this change.

The first factor is a change in the composition of diseases in society, that is, the relative prevalence of different types of diseases. In Japan, the top three causes of death between 1920 and 1950 were the infectious diseases pneumonia, gastroenteritis, and tuberculosis. However, in 1951, the top cause of death became cerebrovascular disease, and by 1960, all of the top three causes of death had become chronic diseases, namely, malignant neoplasms, heart disease, and cerebrovascular disease. Essentially, in the time between 1950 and 1960, there was a transition from an era of infectious diseases to an era of chronic diseases (or lifestyle diseases). Historian of science Yōichirō Murakami (2002) explains that during the infectious disease era, the medical care system could still function effectively despite an asymmetric doctor–patient relationship, since the treatment of infectious diseases requires very little involvement from the patient. Patients can simply have their infections cured by doctors, who eliminate pathogens through treatments such as intravenous drips, injections, or drug therapy. All of these treatments fall well within the discretionary powers of the doctor. Chronic diseases, on the other hand, cannot be completely cured like this, and so patients must learn to live with these diseases for their entire lives. Even if chronically ill patients do take medication, they will most likely have to continue taking it indefinitely, and the decision to do so rests entirely with the individual. As a result, the role of the patient in treating chronic diseases is of central importance. Even though the discretionary powers remain with the doctor, it is the patient who must carry them out; thus, the role of the patient has gained a great deal of attention (Murakami, 2002).

The second factor is the information technology revolution, which allowed for the digitalisation of scientific journals. Academic journals were once only intended to be read by professionals who registered and paid a membership fee; however, now even ordinary patients are able to access this knowledge online. As a result, while doctors’ professional knowledge was once vastly superior to that of patien...

Table of contents

• Cover
• Half Title
• Series Page
• Title Page
• Copyright Page
• Dedication Page
• Table of Contents
• List of figures
• List of tables
• Preface
• Acknowledgements
• 1 Introduction
• 2 The sectors surrounding patients
• 3 The professional sector: standard treatment and modern medicine
• 4 The folk sector: alternative medicine
• 5 The popular sector: self-help groups
• 6 The controversy over patient knowledge
• Bibliography
• Index