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Autonomy Amuck

Patient, Heal Thyself: How the "New Medicine" Puts the Patient in Charge

By Robert M. Veatch

(Oxford University Press, 287 pp., $29.95)

Long regarded as central to the contemporary understanding of medical ethics are four principles that must be satisfied in order to fulfill the requirements of moral decision-making. These principles are autonomy, justice, beneficence, and non-maleficence. These terms are generally interpreted by ethicists in the following way: autonomy refers to the freedom of the patient to decide what is in his best interests, without interference from others; justice is the notion that no one should be deprived of any benefit to which he has a right, amounting, therefore, to fairness and equal opportunity in the way each individual is treated; beneficence is the physician's obligation to do only what will protect and promote the patient's well-being; and non-maleficence is the physician's obligation to avoid any undue harm to the patient.

In an ideal world, these principles would guide every transaction that takes place between doctor and patient, regardless of how seemingly insignificant it might be. That such a condition is met less often than wished is correctly attributed to the old paternalistic approach that continues to guide the attitudes of some physicians even now, when so much thought is being applied to the proper ingredients of the complex interaction that is called the doctor-patient relationship. Simply stated, too many physicians are still unwilling to cede any degree of autonomy to those they treat. This doctor-is-always-right attitude seeps into every aspect of the encounter between them, weakening the effectiveness of the other three principles.

Though moral axioms to guide the conduct of the practitioner have existed since the beginnings of the profession of healing, Western doctors are most likely to view the Hippocratic Oath of approximately two-and-a-half millennia ago as the first codified set of statements to which they can look for guidance. The third paragraph of that famous declaration asserts, in unequivocal phrases, that "I will follow that system of regimen which according to ability and judgment, I consider for the benefit of my patients, and abstain from whatever is deleterious and mischievous." The words of the Oath, revered and recited to the present day, clearly provide a warrant for paternalism--though such an attitude was already encouraged, as it still is, by the simple fact that the healer has always been possessed of a body of knowledge and skills unavailable to his patient.

As the centuries rolled by, that specialized corpus of abilities grew slowly larger, its acceleration magnified manyfold when real science entered medical thinking near the middle of the nineteenth century. At the same time, but not obviously related to the advent of biotechnology and molecular medicine in the 1960s, there occurred the social upheaval that manifested itself within the ancient art of healing as "the patient self-determination movement." As the bonds of unquestioned authoritarianism in all arenas were thrown off or loosened, patients began to demand a greater degree of participation in deciding how they should be treated. And all the while clinical decision-making was becoming increasingly complex, and its interplay with considerations of ethics and morality came to the forefront as never before, especially as certain high-profile cases made their appearance before the courts.

It was largely in response to this situation that men and women with backgrounds in philosophy, law, social science, and religion began to turn their attention to ethical problems in the care of the sick. Along with like-minded physicians, these thinkers produced an ever-increasing number of articles and books in which they turned their analytical and practical skills toward what was rapidly becoming a professional field known as biomedical ethics. It came as no surprise that one of the motivating factors in the rise of this specialized area of interest was the recognition that the traditional paternalism was no longer acceptable, and needed to be replaced by autonomy.

The principle of autonomy holds that, except in cases of incapacity, the patient is a rational person with rights, opinions, and aims, who is the final arbiter of his or her own best interests. This makes particularly cogent the Hippocratic Oath's second reference to benefit, as follows: "Into whatever houses I enter, I will go into them for the benefit of the sick." Here there is no mention of the physician's determining the best course, but merely what will benefit the patient. That benefit is best determined by the patient, albeit with medical advice. It is imperative that the patient be fully informed, and that he enter into a discussion of the factors included in his own decision about what he considers best for himself.

But this has never been enough to satisfy Robert Veatch. Veatch is one of our nation's best-known ethicists, and for decades he has promoted the notion that autonomy, as it is understood by most of his colleagues in the specialty, and however prominent its role in modern medicine, falls short of what is really needed, which Veatch calls postmodern medicine, in which patients possess total control. This brave new world of healing, he insists, is already "irreversibly launched as the replacement for what is now old-fashioned modern medicine. ... It is a world in which physicians and health professionals will become assistants of patient [sic] who will have to take charge and heal themselves."

Old-fashioned autonomy, in Veatch's view, allows the patient to make informed decisions involving strictly medical concerns, but such decisions may conflict with other of his interests beside physical health. Every choice, Veatch asserts, must make allowances for the individual patient's distinctive and unique system of beliefs and values, about which the physician cannot possibly be an authority. The Hippocratic "benefit of the sick" includes ingredients known only to the sick, and so they must be included in any consideration of what is in the totality of their best interests. One or several of these considerations may cause the patient to sacrifice a strictly medical good for one that he regards as more important to his complete well-being, not only physical but also emotional, moral, and spiritual.

With some instances of this radical vision the autonomy-conscious physician can have no quarrel. As a wise and very experienced oncology nurse once pointed out to my hospital's ethics committee, "For some people, suffering through the anguishing side effects of an offered treatment is simply not worth enduring, when they consider what they will have when they come out the other end." Every clinician is familiar with such a determined viewpoint, and it takes a hard-headed paternalist to argue against it.

But the moral-clinical situation is rarely so clear. In some circumstances the complete surrender of the physician's authority to the patient would probably be viewed by him as downright misguided. What physician would not do everything he could to convince a composer, for example, that his determination to finish writing his symphony before starting debilitating chemotherapy is likely to cost him his life? Consider also the mother of a high-school wrestler who insists on going to this evening's championship match ("It will only delay the operation a couple of hours, doc!") even if it will result in the spreading of her peritonitis. Veatch, if we are to take him at his word, would declare that his postmodern medicine demands absolute respect for the patient's system of values in such instances. Were he responsible for the care of one of these two people, or of the many others like them encountered in any physician's lifetime, he would see no reason not to abandon his role as non-voting advisor, in the interests of his patient's total independence of the influence of anything merely professional.

Veatch provides two other categories in which a patient's values should be allowed to override medical opinion. The first of these is a situation in which it might be the patient's perception that helping him could be to the disadvantage of some other person. Principles such as loyalty, fidelity to promises, or allegiances to a particular code of honor come into play in such cases. And there is also the worry about possible harm to another, such as the example of a man who refuses a kidney transplant from his identical twin for fear that his brother will sustain unexpected complications, though that likelihood is remote. And Veatch next moves on to those cases in which a medical benefit to the patient might result in the loss of some perceived greater good for society. An example of this sort of thinking is to be found in the case of a fifty-eight-year-old man who refuses his insurance company's offer to pay for a very expensive experimental operation with a high mortality rate because he feels that the money might better be used for other, more certain purposes to help some other person or persons.

In none of these sorts of instances, Veatch tells us, would it make sense for the physician to prescribe "or even recommend any treatment, let alone give 'orders' or claim they know what is best for the patient." In asserting his certainty that this is the right thing to do, Veatch goes far beyond autonomy as it is currently understood, and proclaims the complete independence of patients from medical opinion. He does this perhaps most forcefully in the chapter from which the foregoing quote is taken, entitled "The New, Limited, Twenty-First-Century Role for Physicians as Patient Assistants."

If this line of reasoning is followed, the physician should never presume to know how to prescribe medications for any individual under his care, since he cannot be in a position to understand the personal values that might be involved in various elements of the latter's treatment, such as which pharmacological entity to choose; the dosage form (oral, whether pill or liquid; injection, whether intravenous, intramuscular, or subcutaneous); the manufacturer; generic or standard brand; the quantity of dosage; and the duration of treatment. "Each of these choices," Veatch instructs, "should be made based on the patient's values, not those of the physician." The physician should limit his role to explaining all of the options to the patient, who will then make choices based on his own values, of which the strictly scientific aspects of the disease and range of possible approaches are only so many factors in his entire worldview.

In Veatch's ideal version of his postmodern medicine, all pharmacological agents would be sold on the free market and available to everyone, just as we sell many other chemicals. There would no longer be any requirement for a physician's prescription. Instead, he or some other qualified medical authority could certify in writing the patient's competence to choose, and also certify his diagnosis, just to be sure that the person making the choices is not making them for the wrong reasons. The certifications having been made, the patient would then review his options and decide whether to take the medication, and in what way. If he chooses the treatment option in which his values and those of his doctor coincide--and even if he chooses another, if that is his preference--he would then go to the drugstore to make an appropriate purchase. The next step, as described by Veatch (whose degrees are in pharmacy and ethics and certainly not in medicine), is that "the pharmacist would counsel, review the physician's actions, and dispense (or sell) the medication, much as he or she does now. The result, however, would be a very new set of transactions and authority patterns."

In his choice of the term "authority patterns" lies an important clue to the origins of Veatch's proposals. As one reads his book, the impression becomes increasingly clear that since it is his purpose to place ultimate authority in the hands of the patient, he is desperate to wrest it from the hands of the doctor. He hates words such as "patient," whose etymology "conveys passivity and suffering." He feels much the same about such modern substitutes as "client" and "consumer." Any implication of language that fails to acknowledge what Veatch refers to as "the primacy of the patient" (he uses the word when it suits him, because it "will probably not go away")--such as "medically indicated treatment, treatment of choice, doctors [sic] orders or discharged from the hospital"--is to be abruptly discarded, though he is vague about what is to replace the traditional terminology.

He is vague about other matters as well, and sometimes frankly incorrect. What is meant, for example, by "early Judeo-Christian times?" Can Veatch so blithely ignore the realities of medical history that he believes (or deliberately misstates for the purposes of his argument) the Hippocratic period to have been a time at which "disease, for example, was seen as punishment from God for wrongful behavior," when it is well known that the Hippocratics were characterized by nothing so much as their separation of the etiology of disease from any supernatural cause? Can he really believe that "physicians cannot be expected to be able to predict what will benefit patients and protect them from harm. At best they can guess. They cannot be expected to guess correctly beyond what any ordinary citizen can"? Easily available codes of law or medical obligation belie such outrageous statements.

In his fury to scrap the entire Hippocratic ethic, which has for thousands of years provided a measure of dedication and perhaps even nobility to the medical profession, Veatch seems particularly bothered by the frequently quoted medical maxim "first, do no harm," because it is mistakenly thought to arise from the Hippocratic Oath or to have some other Hippocratic origin. He claims that he and several colleagues have made exhaustive searches, and "none of us can trace it back to either Greek or Latin medicine." Were he not so vexed that physicians could be capable of such lofty themes, he might have looked just a bit further, into Book I of the Hippocratic treatise where the following passage may be found, in the standard translation of Francis Adams from the Greek original:

The physician must be able to tell the antecedents, know the present, and foretell the future--must mediate these things, and have two special objects in mind with respect to diseases, namely, to do good or to do no harm. The art [of medicine] consists in three things--the disease, the patient, and the physician. The physician is the servant of the art, and the patient must combat the disease along with the physician.

A writer who believes that the Hippocratic ethic should "be relegated to the ash heap of history" because it "makes no sense" in his postmodern world should look well to this brief passage, which not only embodies the principle of doing no harm, but also admonishes the physician to do precisely what Veatch claims he cannot do, namely "to be able to predict what will benefit patients and protect them from harm." An impossible assignment, as Veatch claims it to be? I think not. Veatch should also take note in this brief passage of the Hippocratic principle that the patient and the physician must combat the disease together.

It is precisely this--the partnering between physician and patient, each to contribute what his background and his abilities bring to the matter--that Veatch seems not to comprehend. He writes of caring for the sick with all the wisdom and authority of one who has never cared for the sick. From his position as self-appointed judge, his recommendations (more in the form of dictates, and of forecasts of an allegedly imminent future) reveal the thinking of a mind that is a stranger to the nuance, the subtlety, and the ever-changing nature of the relationship between each patient and his doctor. More than that, he seems not to know or care that the latter's recommendations, though they may be based on the facts that Veatch would have him turn over neutrally to the patient, are in the end the product of his careful judgment of what would most benefit the patient. Should the patient object to one or more of the doctor's recommendations, a kind of negotiation takes place in which the healer attempts to respond to every rejection of his advice.

For the doctor blindly to offer advice without also being its advocate is hardly in the therapeutic armamentarium of the modern scientific physician. That this should be so is the result of thousands of years in which the doctor has been taught, not only by his mentors but also by his hours at the bedside, that his greatest contribution to restoring health is not his knowledge of the facts that Veatch would have him simply report to the patient without editorial comment, but rather the judgment that his training and his experience have taught him to apply. Far better than being relegated to the ash heap of history, the very first sentence of what have been called the Aphorisms of Hippocrates should be emblazoned on every medical mind: "Life is short, and the art [of medicine] is long; the occasion fleeting; experience fallacious, and judgment difficult."

If judgment is missing, the pertinent facts have no meaning and confer upon their possessor no competence or authority. Medical judgment can be taught--laboriously, in long periods of training--but it cannot be neatly handed over as the occasion demands it. It is the irreplaceable and untransferable contribution that the healer makes to the suffering individual who would be healed. Proper autonomy as practiced today recognizes that the patient's body is his to deal with as he chooses; but such autonomy will hardly be benefited by diminishing the would-be medical counselor to what Veatch calls a "Patient Assistant." Much to the contrary, in fact: every physician can tell plenty of stories about people who, when offered a choice of treatments, insisted that the decision be made by their physician.

In addition to his vexation that the medical care of the sick should be largely in the hands of physicians, Veatch carries his radical thinking into the care of the dying, and not only the medical aspects of that care. He decries the medical model upon which the hospice concept is built in the United States, and points out that such programs, because they must concern themselves with far more than the health of their residents, should not let medical services dominate them. Here it is much easier to accept his thinking, in view of the range of social services required by such people. He would go so far as to place the hospice benefit in the Social Security system rather than in any type of medical insurance, and he does not exclude Medicare, a change that might strike some people as more symbolic than real. "It would make it clearer that hospice is supposed to spend a significant portion of its budget and hire a significant portion of its staff to provide services having nothing really to do with health care."

A strong argument can be made for such a view, but it should not be made at the cost of what many, if not most, patients must endure while waiting for death. Pain, respiratory difficulty, bedsores, an inability to eat sufficient for even lessened metabolism, incontinence, confusion and plenty of other medical problems afflict the dying, who are most commonly admitted to the facility to control such symptoms, rather than to die peacefully with no need for therapies to relieve them. But Veatch believes that "medicalizing the hospice will inevitably overweight [sic] the membership [staff] with medically oriented people. The budget is likely to be centered on health services and health professional staff."

Veatch lists the health professionals who provide the medical care that he asserts "is only a minor part of hospice, just as it is a minor part in the rest of life." They are "doctors, nurses, pharmacists, and social workers (perhaps with dietitians, chaplains, and others who are connected with medical care)." His list of "non-medical specialists who provide much of what dying people need" consists of "housekeepers, clergy who are not chaplains, lawyers, educators, artists, accountants, and architects--all of whom should be critical to providing integrated support to dying people." While I would not denigrate the importance of the latter group, it seems perfectly plain to me that it is the former group which does most to relieve the suffering of the vast majority of hospice residents. And so I will continue to believe that the ideal hospice must be "medicalized" in order to provide for its residents' most urgent needs, albeit with the easy availability of Veatch's other listed staff and similar personnel.

In like manner and with like intent, Veatch turns his attention to such matters as health insurance, human experimentation, and outcomes research. (The latter is the long-term study by disinterested observers of various treatment options, so as to provide a consensus of experts.) In each case, he argues strongly that determinations should be taken out of the hands of physicians or other so-called "experts" and put completely under the control of patients, since only patients know their own values, without which correct and individual decisions cannot be made. In a final salvo, puzzlingly (since he provides no proof of such an accusation) titled "The Consensus of Medical Experts and Why It Is Wrong So Often," he goes even further than his previous statements that medical opinion should be limited to providing only the scientific facts. With the same certainty that characterizes the rest of his polemic, he makes the following unsubstantiated, and unsubstantiatable, statement: "To the extent that the groups of scientific experts have systematic value biases that shape their formulating and reporting of the facts, then even the consensus of the experts about the facts in a given area should be expected to be skewed." Veatch provides several possible solutions to this purported dilemma, and rejects them all. His readers are left with a topsy-turvy world, but maybe that was his plan all along. Veatch stands revealed as an agent provocateur of medical ethics. His cleverness has gotten the better of his compassion. What he prescribes, for both patients and doctors, is anarchy.

Sherwin B. Nuland is a contributing editor at The New Republic.