In the U.S., the culture and the civil negligence liability system dictates that doctors and hospitals disclose to prospective patients what the illness and proposed course of treatment are, including the benefits and risks. Generally speaking, patients in the U.S. and their families, want to know what their condition is, even if they have an incurable and/or fatal problem.
Because in most cases patients pay for all or some part of health insurance and medical bills, such bills or quite complete reports about them are sent to patients after the fact. This culture of disclosure is backed up in many states with laws. But even when such laws don’t apply, disclosure is usually forthcoming.
In Japan, the opposite is true. As a general rule, doctors and hospitals disclose very little, if anything. Doctors and the health establishment in general believe that informing a patient of a fatal condition is announcing a death sentence. In the Japanese culture, this is thought to be an unthinkable cruelty. This culture extends to other non-fatal conditions as well. In fact, it appears to extend across the board. In addition, the law apparently does not grant patients extensive rights to information. On the rare occasions that it does, it is still not clear that doctors or health and health-related institutions comply.
Until June 1997, Japanese patients didn’t have even a theoretical way to access information about themselves in the possession of health providers. Accordingly, there has been growing dissatisfaction among Japanese about this situation. On June 25, 1997, the Japanese Ministry of Health and Welfare (MHW) changed its long standing policy against providing patients with access to medical bills and issued regulations allowing patients to see and check hospital bills submitted for reimbursement under Japan’s health insurance system, so long as their doctor agrees. In other words, doctors in Japan have a veto power over this new disclosure authority.
Under Japanese law, patients have no legal right to see medical records about themselves. By regulation, MHW also does not permit patients to see the bills for their treatment submitted by health providers to the health insurance system for reimbursement. Such bills, detail the treatment of a patient, together with the charges for services rendered. Unfortunately, doctor permission is not likely to be forthcoming in specific cases. As a result, patient access is not likely to result. This means that serious problems caused and exacerbated by the system will not be resolved by recent changes in the system. Still, the change is a step in the right direction.
The purpose of this paper is to provide a glimpse into Japan’s medical information patient disclosure practices, the problems arising from the lack of disclosure and the MHW’s efforts to start changing the situation.
II. MEDICAL BILLS UNDER JAPAN’S HEALTH CARE SYSTEM
Japan has a universal, national health care system covering virtually all people in Japan. This system, established in 1961, has helped people obtain medical treatment anywhere in Japan. It is also credited with helping Japan achieve the longest life expectancy in the world. Under this system, Japanese are required to join the health insurance plan for which they qualify, depending on their status.
Farmers and the self-employed, for example, must join the health insurance plans which are managed by their local government, while salaried workers at small companies are in the central government-managed insurance plan.
Reimbursement in Japan is a central component of insurance, regardless of what plan is involved, the type of insurance or the patient’s location or status. Under the reimbursement system, as in the U.S., patients share in the cost in various ways, including through co-payment directly to the provider. Providers send bills for services to a third party government agency for review, evaluation and approval or denial. The third party sends the bill with its report and recommendation to the insurer. The insurer pays the bill through the third party, if the third party approves the payment. The patient, at this point, receives a copy of that part of the bill specifying the costs only. The bill includes no information on what the products and services the patient receives; it merely states the amount the patient has paid and/or must still pay. Patients cannot possibly know “what medical problems they have, what drugs they are to take or why, what kinds of shots may be administered, tests they may undergo, or procedures they endure1” unless the doctor informs patients of these matters.
Some of the same problems plague the U.S. Medicaid and Medicare systems. There, the U.S. Department of Health and Human Services (HHS), akin to the Japanese MHW, also faces growing deficits and a graying population. However, doctors in the U.S. do not sell drugs to patients (and thus do not profit by such sales). In addition, hospitals and other health providers, generally speaking, do (and often must) disclose diagnoses, prognoses and treatment to patients. HHS even requires some of this by regulation (especially if federal programs like Medicaid and Medicare are involved). In addition, many states require various forms of disclosure, either by statute or common law or a combination of the two.
In spite of very serious problems adversely affecting the Japanese healthcare system (e.g., deficits, graying population, doctors selling prescription drugs to patients, lack of disclosure or consent), the Japanese government claims that it and the Japanese people support the current system.
Be that as it may, there has been growing discontent among Japanese about this secretive system in which the patients, who are the most directly affected, are left out of the loop. In some instances, Japanese have taken direct action, which is a highly unusual step in Japanese culture.
For example, in December 1990, a newborn baby died soon after birth. Mr. Katsumura, the baby’s father, who was a high school teacher, said “My wife had abnormal labor pains. I suspect that my child’s death was caused by an excess administration of a drug used in encouraging labor.”2 He sued the hospital and sought to obtain the hospital bill to help show that the hospital was in error. The bill was under the possession of the Public School Mutual Association’s Osaka branch, the insurance plan to which the family belonged. The Association refused to disclose the bill, based on MHW’s official position, as included in an MHW pamphlet on this subject of disclosure. The official government pamphlet advised against disclosing medical information to patients or their families, even when requested by them, on the grounds that such details might lead to an invasion of the patient’s privacy.3 Mr. Katsumura argued that since a citizen is entitled to a store receipt detailing a purchase and its cost, a citizen should be entitled to a detailed receipt, or bill, from a health provider about services provided. He negotiated with MHW but lost. In frustration, Mr. Katsumura started the Citizen’s Movement for Freedom of Medical Information in order to pressure the government and society to change the MHW regulation preventing disclosure.
III. SOME EXAMPLES OF SYSTEM PROBLEMS CAUSED BY LACK OF DISCLOSURE
In addition to the obvious problem that the patient and family are not informed about the medical problem, the prognosis, the treatment, what drugs, if any, are being prescribed or why, there are other, equally serious problems caused by lack of disclosure.
Conscious Misdiagnosis for Reimbursement Purposes: Doctors are free to “doctor” the records to suit their needs, regardless of the patient’s needs. Sometimes doctors consciously misidentify the medical problem to enable them to prescribe treatment for which there is reimbursement, as opposed to prescribing treatment for the real problem, for which there would or might not be reimbursement. This is especially prevalent in prescribing drugs. Sometimes this can be of economic benefit to the patient, although it is obviously detrimental to the patient’s health. If there is no reimbursement, the patient would have to pay 100% of the medicine prescribed and sold by the doctor. This kind of problem is particularly pernicious and can cause confusion in the records, among colleagues, in hospitals, and so on. Such confusion among health providers is harmful from every point of view.
It is worth noting that, although every system has its imperfections and even its wrongdoers, such an action in the U.S. could not be hidden and could easily lead to a negligence action, censure of the doctor or loss of the doctor’s license and, depending on whether a federally regulated drug is involved, a federal, criminal charge against the doctor.
Over-Prescription and Unnecessary Tests and False Reporting: Secrecy, when tied to economic interest, inevitably leads to abuse. In Japan, nondisclosure to patients, tied to doctors both prescribing and selling drugs, results in over prescription of drugs. In hospitals, such lack of accountability to patients results in unnecessary tests being prescribed and performed as well as outright false reporting of tests and procedures that never take place.
According to the MHW, during 1995 medical facilities requested reimbursement for false claims from the government amounting to 4.6 billion yen (about $370 million).4 The real figure could be higher. For example, in just one case, in July 1997, the Yasuda hospital group in Osaka was exposed for false reimbursement claims of 2 billion yen ($161 million) over three years.5 According to a recent report regarding medical issues revenue to hospitals and doctors resulting from false reporting may amount to 9 trillion yen annually($72.6 billion). 6*
*All US dollar figures based on $1=124 Yen
The Point/Fee Schedule System: The current Japanese reimbursement system is based on and managed by assigning points to health services, the so-called “point/fee schedule.” Each point is, in turn, given a yen value. Under this system, MHW assigns points, for example, to each medical procedure and reviews point assignments annually through its committee, or Chuikyo. Under a system without patient disclosure, contradictions, or irrational decisions, can and often do, result. For example, a patient visits a hospital to get her blood pressure taken and receives medical care for a slight injury. Presently, the total medical costs for this case may well be lower than the cost would be if the patient visited the hospital only to have her blood pressure taken.7 In other words, in some cases, the charge for less medical care is greater than for more care. The point/fee schedule system is decidedly off kilter. This is because it has been changed so many times since its inception and is still changed frequently. Large bureaucracies are not good at keeping close track of detailed, complicated systems. If patients were able to keep a close watch on bills through disclosure, the MHW would probably find that it would have to completely revise its point/fee schedule.
It seems clear that mandatory disclosure would greatly reduce these kinds of problems, including over spending in a system that is facing serious and growing deficits. However, it would not eliminate them. For example, the U.S. has rigorous full disclosure, even if not all the time or uniformly for everyone. In spite of a good record on disclosure, fraud, waste and abuse in both the U.S. Medicare and Medicaid systems have not been rare or small. Where there is money to be made in a system, some doctors, hospitals and other health providers will cheat to try and make more. Nevertheless, in the U.S., such behavior at least must contend with a system that provides patient disclosure and pretty good regulation on behalf of patients by federal and state authorities. Both of these features are lacking under the Japanese system.
IV. IMPROVED PATIENT DISCLOSURE: SOME PROGRESS BUT A LONG WAY TO GO
Although the MHW has changed its regulations to try to give patients greater disclosure rights in seeing hospital bills, the change is severely limited by the doctors’ veto. Nevertheless, the Japanese may hope that they are at last going to be able to find out more about what happens to them in hospitals. Unfortunately, the change requires that the doctor must agree for a patient to be able to see the hospital bill, which details treatment. Here is how the new procedure works:
Once a patient obtains the consent of the doctor who performed the treatment in question, the patient can request disclosure of his/her bill submitted by the hospital to the insurer and such disclosure must be forthcoming. Based on the way the system works, as mentioned above, self-employed persons, farmers and senior citizens over age 70 apply directly, or through their lawyer, to their appropriate local government (which is their insurer). A dead patient’s family can also request disclosure and the decision will be made based upon whether the insurer believes the request is justified from a social point of view, whatever that means.
Such requests take from two to four weeks in the case of past bills. If the bill has not yet been reviewed by the third party, the request will take three months or more. Obviously, the system is new and may become more streamlined as time goes on.
The doctor’s veto is virtually complete. If the doctor decides that the patient should not know the name of the disease or that such knowledge would somehow adversely impact on the medical care, the doctor simply rejects the request. One implication of patient disclosure is that it complicates the doctor’s life. If a patient is suffering from cancer but
is not aware of that, the doctor may believe that once the patient finds out, treating the patient will be more difficult. The doctor will have to discuss the situation with the patient each time the doctor is seen or wants to undertake some treatment and obtain the patient’s consent to perform such treatment. The doctor may even have to explain past treatment. Some doctors may view this as unnecessary complication.
The Japanese are wondering how this change will play out in terms of the fledgling patients’ rights movement and whether it will work. It is still too early to tell, but it appears to be moving forward, even if it is slightly and fatally flawed. It will not meet the hopes and expectations of patients or their advocacy groups because of the conditions governing it. However, it seems clear that if MHW could move this far now, it may be willing to move again if it believes that this attempt to provide greater opportunity for patients to learn more about their treatment cannot be realized. Perhaps it is useful, then, to look at some of the issues which have been raised.
V. NEW PATIENT DISCLOSURE ISSUES AND POSSIBLE NEXT STEPS
Some new questions are being asked as a result of the MHW regulatory change seeking to provide better patient disclosure:
1. The great power of doctors to control medical care in Japan has been affirmed by this change. Doctors now obviously control the flow of medical information to patients. Expectations that the doctors’ monopoly on medical information available to patients’ would be diminished by the new change has been dashed.
2. Informed consent, until now a dormant issue, is now being considered a possible cornerstone in the continuing effort for patient information disclosure.
Prior to the MHW regulatory change, many Japanese believed that the MHW would grant substantial new patient disclosure rights to the public. Groups campaigning for more freedom of access to information for patients expected:8
• Patients would be able to see the medical rationale behind treatment provided and thus also be able to assess the suitability of such proposed or actual treatment.
• There would be improved communication between patients and their doctors.
• Doctors would no longer be able to withhold information from patients or to over prescribe and then sell drugs for their patients.
• There would be fewer false and fraudulent medical insurance claims.
Those individuals and groups who believed and expected such progress have, of course, been disappointed. They now realize that none of the changes suggested by the list above will be realized by the MHW reforms.
These same people and groups are now focusing on informed consent as the next step in meaningful patient disclosure and patient participation in determining and conducting appropriate health care. So long as patients need a doctor’s permission to see their own medical information, even after the fact, there can be no such meaningful disclosure or
Presently, Japan is really like a third world country with respect to the rights of patients to information and to consent to treatment. Doctors in Japan rarely let patients know about their condition, especially if that condition is serious or fatal. This is especially true, for example, when a patient has cancer. Nevertheless, the patients’ rights movement believes that informed consent is an essential next step for the health care establishment to take. They believe that Japanese people, including patients and their families have a right to know such things and that such knowledge will lead to better treatment, and a better, more open and more honest system.
The MHW is becoming increasingly convinced by these arguments, and is trying to find ways to encourage the spread of informed patient consent. For example, the MHW recently said that “Medical care should be based on a relationship of trust between the patient and the doctor or other medical care personnel, and the concept of informed consent is an important way of maintaining this relationship of trust . . . the goal is for patients who want detailed explanations and medical personnel who are aware that sufficient explanations are an important element of medical care to work together to build a better medical care environment.”9 With this in mind, MHW is promoting informed consent through a public education campaign, using techniques such as posters and pamphlets. However, MHW is not at this time considering any further regulatory changes on this subject.
The critical question is what will happen if these patient and MHW efforts are not successful. Given the general trend toward openness in economics, politics and trade, it is not surprising that openness is also becoming a major force in the patient medical information arena.
Patient disclosure has gained significant ground, but still has a long way to go. The Japanese tradition of not informing patients of their condition, their treatment or their prognosis still holds sway. The new MHW efforts to provide greater patient disclosure by changing its regulations will not solve these problems, but they are a small step in the right direction. There are growing signs throughout the country that the system is beginning to listen to Japanese citizens’ desire to know more about their medical condition. The system does provide some opportunity for improvement by patients through legal means, even though Japanese are loath to use these means.
In July 1995, the Kyoto local government allowed patients to have access to medical information. In September 1996, an Osaka Appeals Court ruled that denial of access to patients themselves was illegal.10 In addition, even though there is a legal basis for preventing patients from seeing their own medical records, there apparently is no legal basis for preventing patients from seeing their medical bills and the associated medical information contained in those bills.11 Given this fact, it can be argued that the MHW regulatory changes providing greater patient disclosure were inevitable. Perhaps the next step, improving disclosure so it is truly meaningful, is also inevitable.
Right now, though, the new MHW regulatory requirement is not effective because of the doctor’s veto power over access. This flaw will also allow other serious problems that plague the system (involving false, fraudulent and misleading diagnoses, prognoses and treatment, including drug prescription, and fraudulent insurance claims by doctors, hospitals and other health providers) to continue. A powerful argument against a system that encourages withholding information from those affected is that such a system will become corrupt. This is exactly what has happened in Japan, and these problems have contributed toward growing deficits in the health care and insurance system as a whole.
Perhaps the next step will be to establish informed consent as a patient right, a first step to establish a trust relationship between doctor and patient. Such a step would benefit the entire Japanese health care system.
1 “Japan’s Universal Health Care System in Crisis: A summary” by Pacific Bridge, Inc.
2 “Weekly Toyo Kezai, February 1, 1997 p32 – 33
3 “Japanese to have more access to health files,” The Lancet, Vol. 349 January 18, 1997
4 Nihon Keizai Shinbun (Nikkei Newspaper), June 26, 1997 page 3.
5 The things that need to be done before raising co-payment,” by Yasumi Iwakami, SEKAI, September 1997
6 The things that need to be done before raising co-payment,” by Yasumi Iwakami, SEKAI, September 1997
7 Weekly Toyo Kezai, February 1, 1997 p32 – 33
8 “Japanese to have more access to health files,” The Lancet, Vol. 349 January 18, 1997
9 “Annual Report on Health and Welfare, 1997” by MHW (http://www.mhw.go.jp).
10 “Japanese to have more access to health files,” The Lancet, Vol. 349 January 18, 1997
11 Weekly Toyo Kezai, February 1, 1997 p32 – 33