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Tishchenko P. D. The Individual and Healthcare in the New Russia

The healthcare system in the new Russia is in an agonizing flux of political, economic, and ideological turmoil. The individual in this system, comfortable with the long-established policies of the former Soviet system, is now confronted with instability, rapid change, and an uncertain future.

The late socialist model of healthcare was based on the ideal of distributive justice: equal access to reasonable medical care free of charge for all citizens of the USSR. In practice, however, there was an elaborate system of discrimination in which those with positions in the party or state hierarchy or who were deemed to have "social value" received priority. In addition, certain populations enjoyed significant advantages over others: urban dwellers over those living in provincial towns, workers in large plants over more common laborers, and people living in the European parts of the country over populations elsewhere. As this uneven distribution demonstrates, control of the mechanisms of allocation of vital medi­cal resources was a very significant part of the power held by the Communist Party.

Each citizen of the USSR had a rigid place in a healthcare system that afforded no opportunity for personal choice or preference. For example, patients had no right to choose physicians or medical institutions; informed consent was used only in cases of surgery; patients or their surrogates did not participate in deci­sion making regarding the termination of treatment; and, the information in medi­cal files was closed to patients but open for state authorities.

Even in death, there was no possibility for Soviet citizens to control what happened to their bodies, because there was no right to refuse an autopsy or organ donation. The common interest of society was always held to trump that of individuals. For example, the general system of preventive medical examina­tion, adopted by the Soviet Government and the Communist Party in 1986, decreed that every citizen was obliged to undergo a preventive medical examina­tion each year. This system was not extending a right to citizens should they have a special need for such an examination; rather, a compulsory social obligation was being imposed, and special penalties were inflicted on those who tried to evade this social duty. For example, each year I received a notice from the Chief of the hospital instructing me it was time for my physical exam. To refuse would have meant immediate expulsion from the hospital's patient program.

The Soviet healthcare system was a significant state organ and vulnerable to all the types of corruption characteristic of the Communist administration. During Stalin's rule of terror, medical professionals were often used to annihilate (murder) political rivals and other designated enemies of the state, as well as for torturing prisoners. After Stalin's death there was the widespread practice of repressive psychiatry.

Patients were heavily dependent on the paternalistic totalitarian state power embodied in the healthcare system. Today, for my children, it sounds like an exotic anecdote that only several decades ago, the country's leader, Joseph Stalin, was officially named "the greatest Chief, Teacher, and Father of the Soviet people." The most honorable attribute for a Soviet man or woman was to be "a faithful son or daughter of the Communist Party, and a good pupil of the greatest Teacher." The spirit of paternalism penetrated all spheres of social life.

It is important to point out, however, that, as is characteristic of paternalistic relationships, the dependent and subordinate position of the patient also carried significant social, psychological, and economic benefits. Patients could have complete financial reimbursement for an illness, mitigation in social and legal responsibility, as well as privileges in the distribution of social goods. Thus, medicalized state power that compelled people to obey, also provided patients, in their dependency, the warm feeling of safety that accompanies paternalistic protection.

In today's Russia, the collapse of state control and financial support of healthcare, forcibly thrusts patients out from the protective nest of their dependency into a cold and alien environment in which individuals must think and act on their own. Our state healthcare system is only at the beginning stages of a transi­tion into a new model based on a combination of compulsory and voluntary medi­cal assurance. In reality, there is not enough money to provide reasonable medical service for all people free of charge as in the past. Even the insufficient amount of money that is received from regional or state budgets is sometimes redistrib­uted by institutions for their own profit. It is necessary to pay for all diagnostic procedures and treatment that are not covered by state or regional budgets. The reorganized old-fashioned mechanism of the discrimination of people by prioritization is still at work. High ranking state authorities have complete reimburse­ment of medical expenses and free access to high technology medical services. Although average citizens now have more political freedom, this is not yet trans­lated into total access to needed medical care, thus continuing some of the injus­tice of the past system.

The productive and socially active segment of the Russian population must pay in order to receive a minimal amount of medical services. The average monthly salary in Russia in July 1994 was about 200,000 rubles. The cost of a gastroscopy is 10,000 rubles; computer tomography, 150,000 rubles; 4 days at a maternity hospi­tal, 35,000-250,000; and, an abortion, 50,000. A day's stay in an ordinary hospital costs between 20,000 and 30,000 rubles, whereas one with more amenities can run as high as 200,000.

I believe the unpleasant necessity of paying for basic medical services will increase the sensitivity of the Russian people to the problems of their human rights in healthcare. Eventually they will need to have access to significant amounts of medical information about their health, be advised of their legal right to partic­ipate in decision making, their right to choose a physician, a hospital, etc.

To some extent, several very important steps have already been taken in Russia toward the legal protection of patient's rights. A new law for psychiatric service was adopted by the Supreme Soviet of the Russian Federation at the end of 1992. This law gives effective protection to the rights of psychiatric patients. In compli­ance with international standards, mentally ill patients are now entitled to assis­tance by a lawyer, especially in cases of involuntary hospitalization.

At the same time revisions were being made in behalf of psychiatric patients, a new law was adopted on organ donation. This law establishes the first Russian legal criteria for death. Determination of death is based on "the irreversible cessa­tion of brain stem function, or brain death." Donation of organs is based on "presumed consent" although the right of patients to refuse donation of their organs is legally protected.

These new laws regarding psychiatric service and organ donation signify some principle changes because they signal the first time in Russia that the values of individuals in a medical context have been considered on a par with social benefits. The General Law on Health Care of the Russian Federation was adopted in 1993. It gave citizens broad-scale protection of human rights and legitimate inter­ests in the healthcare sphere; for example, the doctrine of informed consent, the right to choose a physician and medical institution, and the right to control one's own medical information.

So, to some extent, very important social presuppositions for establishing auton­omy for Russian patients have been created. But because of the nascent state of the Russian judicial system, as well as the social and economic disorder, patient autonomy has not yet become a reality. In spite of all the changes underway in Russia, medical authority remains, to a great extent, undisputed. In general, there is no serious concern about the rights of Russian patients.

The silence of the Russian moral community is the most crucial issue we face. For example, approximately a year ago the first Ethics Committee at the National Center of Surgery in Moscow [see CQ, 3(4)] was organized, not in response to public pressure or patient unrest, but because of the interest of a few medical professionals in this particular institution. The committee combines the functions of institutional review boards and hospital ethics committees, and began work with the creation of institutional guidelines for clinical research on human subjects. In contrast to the customary aural method of informing patients, the committee adopted the first Russian written informed consent document. Although there was, and continues to be, some external influence from American and European bioethics movements, no significant internal forces, beyond the commitment of dedicated individuals, contributed to the creation of this committee, or nourish its continuing endeavors.

I remain puzzled as to what should, or can, be done in Russia to stimulate the interest of the Russian people in bioethics. How can we arouse their interest in protecting their own human rights as patients? I have no ready answer; but I do have reservations about trying to inject a western-grown autonomy model into the body of Russian physician-patient relationships. The strength of the auton­omy model of the doctor-patient relationship has a dangerous side effect that must be taken into account. David Thomasma[1]has observed:

Obviously, the strength of this model lies in its stress on adult decisional capacity and the corresponding protection from the harms of medical technology. Most often these harms are described during the process of interventions during critical, chronic, and dying periods. But the model can also be applied very helpfully to everyday encounters in the clinical setting, by far the more frequent type of interactions in healthcare.

I fear, however, that along with the idea of autonomy we inject into the body of the physician-patient relationship, a penetrating "virus" of suspicion that stimulates patients to view the medical profession as a potential, or actual source of harm. Although it is easy to inject this virus, control is difficult. An unpleasant correlation for me personally is, that as public suspicion of the medical profes­sion is aroused, and patients' fears of possible iatrogenic harms are heightened, professional bioethicists and protectors of patient's rights (such as myself) will benefit.

Three years ago, a Hungarian colleague insisted that in order to stimulate bioethics in Russia, it would be necessary to create a grand public scandal by publiciz­ing examples of medical malpractice cases. The scheme was to demolish the paternalistic trust that Russian patients have in their physicians. I am sure that today this method of giving birth to bioethics will not work in Russia because citizens are preoccupied with an even more fearful danger, the nightmare of a civil war. I also believe that no intentional scheme to undermine trust in the physician-patient relationship is an acceptable price to pay for beginning an ethi­cal enterprise. It would be much better to urge patients of the acceptability of seeking an independent professional "second opinion" when doubts or questions arise, rather than, with forethought, set about to destroy the Russian patient's faith in the medical profession.

This turn of thought provides a good reason for redistributing appropriate medi­cal information from physicians to patients. First and foremost, patients need to be provided with the sort of information that could, in any sense, be useful in the creation of their own "biographies". Thomasine Kushner presents a biograph­ical description of human life in addressing the question, "When do organs become spare parts?"[2] I believe this biographical dimension of what is meaningful about human life should be used more generally to interpret ethical issues of the physician-patient relationships. The evident advantage of placing value on the biographical model is to shift the main focus of bioethics reasoning away from a patient's suspicion of possible medical harm at the hands of physicians, to supporting the patient's assumption of responsibility for decision making and his or her own life history.

From the point of view of the autonomy model, the individual's liberation from dependency could be achieved by exercising power over external sources of subjugation and transforming those forces into means for realizing personal ends. In its extreme interpretation, the autonomous "self" has no need for "others" or "otherness," either in a social or a natural environment. The main motive for collaboration with others lies in the necessity to protect oneself from actual or potential harm by placing them under one's own power and control. This funda­mental isolation and elevation of the self is an unpleasant down side of the auton­omy model.

In contrast, the biographical model, or the communication model, recognizes the distinctiveness of the other and does not seek to diminish that difference or incorporate it. In a medical context, this means that the responsibility exists on the part of physicians to continually ask questions of patients, "Do you under­stand?" "What else would you like to know?" It also means that patients have the same responsibility to make their needs and wishes known. Inside a world of communication each speaker needs to be heard, just as each must listen. It is the hard work on both sides of the relationship that makes it possible for each participant to create themselves as authentic authors of their lives. Without this type of interaction, with all the risk involved for both parties, the essence of the relationship will be lost.

Thus, in developing a bioethics for today's Russia and trying to meliorate the position of individuals in the healthcare system, I prefer to replace the negative side of the autonomy model's focus on personal control, power, and isolation, with a call for both patients and physicians to fully recognize the primary role of personal responsibility in charting the course of their own unique life histories.

[1] Thomasma D. Models of the doctor-patient relationship and the ethics committee. Cambridge Quarterly of Healthcare Ethics 1992; 1(1): 16.

[2] Kushner T. When do organs become spare parts? Cambridge Quarterly of Healthcare Ethics 1992; l(4): 349-53.

This article was first published in  Cambridge Quarterly of Healthcare Ethics (1995), 4, PP. 75-79.

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