American Journal of Law & Medicine

The empire of death: how culture and economics affect informed consent in the U.S., the U.K., and Japan.(Symposium Dedicated to Joseph "Jay" Healey)

I. INTRODUCTION

American culture reflects a paradox: the more openly we discuss death and its inevitability, the more money we spend to postpone and deny it. Sherwin Nuland's book How We Die,(1) a frank description of the way our bodies deteriorate with and without medical intervention, topped the New York Times best seller list in the spring of 1994. At the same time, Jack Kevorkian, arguably the world's best known physician, was being acquitted of violating Michigan's law against assisted suicide, while a Michigan commission was debating legislative changes to permit physicians to help their terminally ill patients kill themselves. Despite such open discussion of death and expansion of the informed consent doctrine, U.S. medical expenditures at the end of life remain astronomically high.(2) Most of this elevated spending is attributable to new medical technology.

In J.G. Ballard's Empire of the Sun,(3) the United States, British and Japanese cultures are contrasted through the eyes of a young British boy incarcerated by the Japanese army in China during World War II. Ballard describes "the emergence of a particularly American world out of the failures of two traditionally dominant forms of social authority."(4) British society was organized according to rigid social class structure and Japanese society was based on the cult of the emperor, but as the war progressed, Japan and the United Kingdom found their traditional power relationships undermined. On the other hand, the more egalitarian United States attained world dominance through the use of death-producing atomic technology. The British boy learned not only that power is arbitrary, but also that his survival required "absolute submission to the conditions of power."(5)

Death and technology still remain linked in all three cultures, but this link now appears more evident in medicine than in the military where it was historically central. Medicine has even adopted military metaphors as its own. Physicians speak of fighting invaders with a massive armamentarium, of giving orders, and of practicing medicine on the front lines.(6) The U.S.'s Human Genome Project now splits the gene to forge links to life, much as science once split the atom and forged links to death.

The United States now concentrates its research efforts on this death-defying technology rather than on the death-producing technology that drove so much of our economy during the Cold War era. The United Kingdom and Japan, by way of contrast, use death-defying technology much less frequently. In the British and Japanese cultures, people seem to fear end of life less, yet the idea of death is hidden from public discourse. Preoccupation with the manner of death and with the use of ever-improving medical technology to postpone death is not apparent. In part as a consequence, their health care costs are less than half of ours, and are relatively stable, while those of the United States continue to escalate.

It may not be surprising that medical power--the authority of physicians and the potency of medicine--appears arbitrary to many patients. But U.S. patients no longer necessarily accept that their survival depends on their submission to medical technology. The law's doctrine of informed consent seeks to tame both death and arbitrary medical intervention to the will of the individual. Nonetheless, many Americans spend much of their time and many of their health care dollars attempting to prevent death by unproven means.

Historically, most Americans have treated health care as a private commodity whose price, and therefore availability, is primarily determined by market forces. In such a context, the law not unsurprisingly places a high premium on information disclosure by physicians. Personal autonomy--an individual's power to choose among medical options--enjoys its most zealous protection under U.S. jurisprudence.(7) The dominant U.S. version of informed consent is grounded on principles of patient/consumer autonomy, and seems to enhance market choice. But a strong theme of collectivism now runs through some discussions of U.S. health policy.(8) President Clinton was elected at least in part because he promised Americans universal health insurance coverage, but that promise has been all but abandoned, at least for the short-run. Moreover, unless health care funding increases dramatically, universal coverage would force limits on services that insured Americans are accustomed to receiving. This raises the politically charged specter of rationing.(9) The rationing theme may also be detected in a handful of reported legal opinions.(10) The patient sovereignty central to informed consent doctrine in the U.S.'s death-denying society poses serious obstacles to this collective trend. In countries where health care is publicly financed, disclosure requirements are much less explicit, and local law may actually discourage doctors from revealing information about diagnosis, prognosis, and alternative forms of treatment.

We theorize in this Article that the content and the style of imparting medical information can profoundly affect a country's total health expenditures.(11) We believe a society's general attitude toward death (as well as other cultural influences), will shape the type and amount of information that individual patients receive. In this Article we explore the cultural role and the economic impact of telling patients the truth about what doctors actually know--or don't know--about their medical conditions, and about therapy that might help (but could also harm) them. We concentrate particularly on truth-telling concerning prognosis when life-threatening illness has been diagnosed, because this dramatic case most clearly reveals systemic values.(12) The analysis focuses on the United States, with comparisons to informed consent law in the United Kingdom(13) and Japan.(14) We look specifically at the cultural determinants of medical practice in each country in Part II, and at the law which affects physician--patient interaction in Part III. We believe that a society's cultural attitude toward death strongly affects its approach to health sector finance, and we explore that interplay in Parts IV and V. These factors in turn influence the information the law requires doctors to provide their patients/consumers.

Finally, we conclude in Part VI that what doctors truthfully tell U.S. patients about prognosis and treatment alternatives, and about the degree of scientific uncertainty associated with their illnesses, will affect the way health service allocation takes place in the future. We suggest that when U.S. patients are more honestly informed about prognosis, and about the negative aspects of many aggressive therapies, public perceptions about the definition and desirability of limiting health services--particularly, but not only, for terminal illness--will change. We also examine the implications for Japan and the U.K. should they adopt U.S. technology and informed consent rules.

II. CULTURE AND MEDICAL SCIENCE

The definition of good medical care varies enormously from country to country.(15) For example, German and French physicians for decades routinely prescribed government-financed "spa cures" for their patients.(16) Such therapy choices would invite professional scorn, not to mention malpractice litigation, and would not be covered by insurance if prescribed by U.S. doctors. The international medical community often disagrees significantly about appropriate diagnosis and treatment.(17) Most physicians are relatively ignorant, if not openly skeptical, about scientific findings reported from foreign countries.(18)

At a more fundamental level, medical experts often frankly disagree about what constitutes disease.(19) Many physical states defined and treated as worthy of medical intervention in the U.S., such as moderately elevated blood pressure, are considered unremarkable variations of the human condition elsewhere in the world.(20) By way of contrast, low blood pressure is treated as a medical disorder in Germany(21) while at the same time it is welcomed as a longevity indicator in both the U.S. and the U.K.(22) American travelers becoming ill in foreign countries are often surprised to learn that 98.6[degrees] is not necessarily the gold standard for normal body temperature, notwithstanding what they have been led since childhood to believe.(23) Far from being an "exact" science with commonly acknowledged definitional, diagnostic, and treatment principles, scientific uncertainty permeates medicine.(24)

Professional cultural values also both overtly and subliminally prejudice medical practice, as do the cultural values imbedded in the particular society in which physicians practice their skills.(25) Moreover, patients have culturally influenced attitudes of their own that affect their willingness to accept--as well as their response to receiving--medical therapy.(26) The Jehovah's Witness(27) and Christian Science(28) cases, as well as the abortion controversy,(29) have spotlighted religion's powerful influence on receptiveness to medical intervention in the U.S. and elsewhere. Less immediately obvious cultural influences can have an equally strong impact on patient perception of medical risks and benefits.(30)

The U.S. public has always been culturally predisposed toward action in the face of threatened adversity, medical or otherwise.(31) Lynn Payer's masterful book Medicine & Culture,(32) quoting such odd bedfellows as Oliver Wendell Holmes and Luigi Barzini, links the aggressive American approach toward medicine to the frontier spirit,(33) and to Americans' deeply ingrained belief that "the main purpose of a man's life is to solve problems."(34) For decades Americans have tolerated--if not encouraged--the delivery of superfluous medical services under the rubric of medical necessity, financed by cost-pass-through health insurance.(35) However, escalating health care costs, a sometimes stagnating economy, increased patient awareness of the hazards of medical intervention, and the dubious success of modern technology in prolonging dying have prompted at least some reevaluation of an indiscriminately aggressive approach to medical care.

Cost containment pressures are bringing home the lesson that medical necessity is actually a fluid notion, continually reconceived as scientific understanding, payment incentives, and culture evolve.(36) Containing costs necessarily implies setting limits on health care expenditures, and cultural values are critical to determining where those limits will lie.(37) When the 70,000-member American College of Physicians advocated caps on national health expenditures in September of 1992, a sea-change in professional values (at least among primary care physicians) gained public visibility.(38) When an ultimately successful presidential candidate ventured to include spending caps in his pre-election agenda for health sector reform, one can be sure that at least he tested the political winds before proposing such a radical change in the status quo.(39) Those winds shifted dramatically in the interim, but while the opposition was mobilizing, the candidate was elected.

III. CULTURE AND INFORMED CONSENT

In this section we examine the legal doctrine of informed consent in three widely differing national cultures: the United States, the United Kingdom, and Japan. We analyze the theory and function of informed consent through the lens of death in each country, to understand why the amount of information physicians give their patients/consumers can affect the way health resource allocation takes place. While we concentrate on these three countries, we believe the analysis can be applied to other industrialized nations as well.

Although we focus here on choice involving treatment alternatives, choice in medicine occurs at two preliminary stages as well. First, health "insurance plans" are selected either by or for patients. Second, patients pick their personal physicians from among those sanctioned by their plan. Each of these decisions is subject to cultural influences, which may determine the range of alternatives available. In countries with single-payer systems, the government controls the total budget for health services, thereby limiting those services that can be supplied to everyone. Under the U.K.'s National Health Service (NHS), for example, the patient's primary care physician is expected to function as gatekeeper to medical specialists, who generally will treat patients only on referral.(40)

In insurance-based systems like those in the U.S. and Japan, citizens can usually go directly to the doctor of their own choosing, although in the U.S. that range of choice is now commonly limited by the patient's managed care insurance contract. In all systems the specific treatment decision itself, however, including the decision to refuse treatment, is made within the confines of the particular physician-patient relationship. We concentrate on the amount of information each country's law requires doctors to convey within this relationship, especially when life-threatening illness occurs, as a vehicle for examining the interplay among financing, cultural attitudes toward death, and choice.

A. THE UNITED STATES

A British physician has described the United States as "the land of freedom, democracy, self-reliance, and market competition."(41) This description is reflected in the modern U.S. version of informed consent, which itself can be traced to the early part of the twentieth century. As an Illinois court put it in 1906:

Under a free government at least, the free citizen's first and greatest right which underlies all others--the right to the inviolability of his person, in other words his right to be himself, is the subject of universal acquiescence, and this right necessarily forbids a physician...to violate without permission the bodily integrity of his patient by a major or capital operation.(42)

Initially, United States judicial opinions described the requirement of consent to medical treatment as necessary to avoid the intentional tort of battery. By the 1970s, however, courts had begun to reformulate the physician's duty to inform as a negligence concept, required by the fiduciary nature of the doctor-patient relationship. Doctors had been telling patients relatively little, and informed consent became recognized as necessary to promote "shared decision-making."(43) It soon became not only a legal doctrine promoting self-determination, but a core ethical principle as well.(44) Informed consent requirements implement the fundamental principle that "adults are entitled to accept or reject health care interventions on the basis of their own personal values and in furtherance of their own personal goals."(45)

California courts, especially the California Supreme Court, have been the nation's most influential in shaping the U.S. doctrine of informed consent. The California Supreme Court decided the case of Cobbs v. Grant(46) in the wake of the consumer, civil rights, and women's movements of the 1960s. In Cobbs a patient had sued his physician for failure to disclose the inherent risks of ulcer surgery: a splenectomy and the development of an additional ulcer later occurred. The court abandoned the battery theory, and replaced it with a negligence cause of action, holding that the physician owed the patient an affirmative duty to disclose certain information. This duty could not be derived from practices customarily engaged in by other reasonably prudent physicians, since few surgeons then disclosed this type of risk information to their patients. Rather, the court found the duty inherent in the fiduciary nature of the doctor-patient relationship.(47)

Under the Cobbs rule, the ultimate choice among alternative treatments, like all other marketplace decisions, rests with the patient-consumer. Just as banks must disclose annual percentage interest rates to depositors and borrowers, and used car salesmen must disclose actual mileage to buyers, so physicians must disclose risks and alternatives of proposed medical procedures to patients. A market system presumes that individual decisions will be based on consumer information. Informed consent doctrine assumes that the patient's doctor is the appropriate person to provide this information, and requires disclosure so that the patient can be a knowledgeable consumer of the medical product.(48)

Most recently, the California Supreme Court refused to redefine the required content of informed consent, and its opinion in Arato v. Avedon(49) underlines the difficulty we still have in dealing with death. Miklos Arato, a forty-three-year-old electrical contractor, was operated on to remove a nonfunctioning kidney on July 21, 1980. During surgery a tumor was found in the tail of his pancreas, and doctors removed the tumor along with the surrounding tissue and lymph nodes. Several days later, the surgeon met with Mr. Arato and his wife. He told them that he thought he had excised all of the tumor and referred them to an oncologist. The surgeon did not tell them that only about five percent of patients with pancreatic cancer survive for five years, nor did he give Mr. Arato a reasonable estimate of his life expectancy. The oncologist told the Aratos that there was a substantial chance of a recurrence, and that a recurrence would mean that the disease was incurable. He recommended experimental chemotherapy and radiation treatment, acknowledging that this might produce no benefit. The oncologist was not asked for, and did not volunteer, a prognosis.

In the following April, while the chemotherapy and radiation treatment were continuing, the cancer recurred. Even though the physicians believed Mr. Arato's life expectancy could then be measured in months, they did not tell him so. Mr. Arato died on July 25, 1981, approximately one year after doctors diagnosed his disease. His wife and two adult children then brought suit against the surgeons and oncologist, alleging that they had an obligation under California's informed consent doctrine to tell Mr. Arato, before asking him to consent to chemotherapy, that approximately ninety-five percent of people diagnosed with pancreatic cancer die within five years.(50) The plaintiffs argued that the statistical prognosis should have been disclosed because it indicated that even with successful treatment Mr. Arato would probably have lived only a short time.(51) If Mr. Arato had known the facts, the plaintiffs believed, he would not have undergone the rigors of the experimental treatment. He would instead have chosen to live out his last days at peace with his wife and family, and would have made final arrangements for his financial and business affairs. As a result of his ignorance he was induced not to so plan; his contracting business had gone bankrupt, and his estate incurred substantial tax losses.

On the basis of standard California jury instructions on informed consent requirements, the jury returned a verdict in favor of the physicians.(52) A California court of appeals reversed the decision in a two-to-one opinion, stating that physicians have an obligation to disclose life expectancy statistics to patients so that they may take timely action to plan the financial and other aspects of their deaths.(53) The defendant-physicians then appealed.

Instead of taking the opportunity to resolve what the California Supreme Court described as a "critical standoff" in the development of informed consent doctrine between the extremes of absolute patient sovereignty and medical paternalism, the court focused on one very narrow question, and upheld the trial court. It analyzed whether California's standard jury instructions should be revised to require the specific disclosure of a patient's life expectancy, as predicted by mortality statistics.(54) Framing the question so narrowly made answering it relatively easy. The court described the physician-patient relationship as "an intimate and irreducibly judgment-laden one" that had to be judged within "the overall medical context." As for general statistics on life expectancy, the court found them of little use to individual patients. The court thought, for example, that "statistical morbidity values derived from the experience of population groups are inherently unreliable and offer little assurance regarding the fate of the individual patient. …

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