Medical ethics and citizen participation in healthcare centers.

Gonzalo Herranz, group de work of Bioethics, University of Navarra
President of the Central Commission of Deontology
roundtable on "Different points of view regarding citizen participation in Health Centers".
In: conference on Participation and rights of users in the healthcare system.
FEDES (Foundation for the Study and development of Health)
Madrid, April 12, 1989

First of all, I would like to thank the organizers of this interesting workshop for inviting the committee General de Colegios de Médicos to take part in this roundtable . Its President, Dr. A. Berguer, asked me to come here on behalf of committee, a task that I am very happy to fulfill.

I will try to outline in a few lines what I think is the relationship that should exist between Medical Ethics and citizen participation in Health Care Centers. However, before going to subject, I would like to refer to a debt that medical ethics owes to the users' and consumers' associative movement. This is certainly a historical debt, since it was this movement that promoted the promulgation of the Patients' Bill of Rights, which are already having, and are destined to have in the future, a very intense effect on the way medicine is practiced. The granting to patients and their relatives of certain specific rights vis-à-vis the physician and healthcare institutions has meant, in addition to social progress, a fairer distribution of freedoms and responsibilities, B . A Moreover, the conquest of these rights by patients and users is an important part of a phenomenon that, in my opinion, is the most important in medical ethics today: patient access to medical decision-making. Medical ethics owes much, therefore, to the movement of users and consumers.

What can be said about the relationship between medical ethics and citizen participation in healthcare centers? I warn that I will limit myself to talking about how, in the light of the deontological principles and texts, it seems desirable to approach these relations. I am not aware of any effective experiences of citizen participation in Spanish health centers. I am not even aware of any opinion polls. But it seems to me that, with a view to the future, it is worthwhile to point out some points of view that will help to overcome difficulties and prejudices and to ensure that some ethical precepts are not forgotten. Let us begin by considering the difficulties.

I. The need to overcome certain prejudices

I imagine that, if physicians were asked what they think of user participation in the programming, development and management of Health Centers, the answers would be rather unfavorable. I suspect that only a small issue of physicians would view such participation favorably; that not a few colleagues would refrain from answering, since such a question would leave them surprised or perplexed. And I suspect that there would be a predominance at issue of physicians who would consider the participation of users in the management of Health Centers to be utopian, inappropriate or negative.

Why do I suppose that there is so little sympathy among physicians for the incorporation of some members of users' and consumers' associations into the teams that manage Health Centers? In general, physicians are very skeptical about the ability of outsiders to get the complex technical and administrative issues of modern medicine right. Physicians, like other mortals, are very reluctant to give up some of the power at their disposal and claim in good conscience to be free from outside interference, for only in this way can they assume full and responsible care of their patients. Physicians view with prejudice anything that might seem to them to be a curtailment of their technical and moral freedom.

It will take years to bring physicians up to date on subject deontology. The aforementioned notion, which is at the core of contemporary medical ethics, is not very deeply rooted among us: that the patient must assume an active role in decision-making in medical matters that concern him/her. There are still many physicians who defend the validity, theoretically and internship, of the old paternalistic model , according to which the physician commands and the patient blindly obeys, the physician is the only one capable of knowing and the patient simply ignores. There are not many physicians who are up to date in Deontology and who recognize that the patient -or, in his case, the family- is an active moral being, whose moral responsibility is not expropriated by the disease and who needs to enjoy certain rights in order to act as a free and intelligent person.

The recognition of the patient as a moral person endowed with rights dignifies and ethically enriches both the individual doctor/patient relationship and the relationship management assistant Health Center/patient and serves as an ethical foundation for the participatory dialogue between users, doctors and Health Center.

We all know, or at least suspect, that this dialogue is not risk-free. Each of the parties may try to impose itself on the others. The managers of the Health Center, seated at the control console of the institution, will preferably be guided by economic criteria, they will want to obtain maximum performance within a policy of cost containment. Doctors will logically use their expert status to obtain the best possible material equipment and staff , which is always prohibitively expensive. Users will defend fair and rapid access for all to the services they need and want, but their demands can degenerate into consumerism, a status in which the patient, based on a unilateral interpretation of his rights, abusively broadens his demands to impose his will on physicians and institutions and subject them to his whims. Some people are already starting to talk about "Patient Power" to designate the risk of domination of the healthcare system by excessive and haughty consumer claims.

It seems to me that the above is more than enough to make us aware that the path to be followed by citizen participation in the health management is not free of pitfalls and risks: many prejudices must be overcome and some dangers must be prevented.

II. The Code of Medical Ethics and Citizen Participation

The Central Ethics Commission has been working for the last year on the preparation of a new text of the Code. I hope that its approval will not be delayed for too long. The text of project has already been submitted to committee General. In what follows I will refer exclusively to this project, as it is more modern in its mentality than the one still in force.

How does the new deontological text deal with patient participation in healthcare? Very openly.

First of all, the Code is not an instrument for corporatist protection: it is offered to the knowledge of all. When, in article 3º, the Collegiate Medical Organization imposes on itself as one of its primary duties the development of professional deontology, it specifies that it is obliged to devote preferential attention to disseminating the knowledge of the Code not only among physicians, but throughout society. The Code of Medical Ethics may be as well known among the promoters of citizens' rights - and even among the users of health services - as the Highway Code is among motorists. Without knowledge there can be no participation manager.

Second, the physician is committed to fostering participation. He will draw the attention of his patients, of the community and of those in power to neglected needs, in order to obtain from them financial aid for the improvement and modernization of health care (article 11). In this search for cooperation, users' and consumers' associations can play a decisive role, not only in the programming of the broad lines of health policy, but also in the concrete improvement of health care facilities.

Thirdly, the Code grants the patient a very active role in the solution of deficiencies that may impair the quality of the care he/she receives. Textually, article 35 states: "If the physician, working in the service of a public or private institution, does not have all his freedom and independence or lacks the necessary means for the correct exercise of his work, he must inform the patient of this. He is also obliged to inform the patient at knowledge of his high school so that the latter may take the appropriate measures to remedy the deficiencies". The same doctrine and practice is reiterated in two other Articles: "The physician is obliged to inform the patient to what extent the restrictions imposed on him prevent him from applying the means of diagnosis or treatment he considers most appropriate" (article 149) and "If at any time, the physician considers that the restriction of resources reduces the quality of the attendance to below the acceptable minimum, he is obliged to inform the managing body of the attendance in the first place, but he will also inform his patients. If the warning is not heeded, he will inform status to his professional high school and, ultimately, to the public opinion in the way that, in conscience, he judges most appropriate" (article 150). Thus, an alliance between the physician and the patient and, where appropriate, between the Associations and the Associations of Users and Consumers, opens up new avenues for the solution of the deficiencies of the attendance health care system on behalf of third parties. Experience has shown that the dialogue - sometimes confrontation - between physician and institution is all too often ineffective, among other reasons because the physician is in a very weak position of excessive dependence on the management. Once he has received truthful, fair, objective information from the physician about the healthcare problems and their possible solutions, the patient will act by asserting his personal rights. And their power will be stronger if they can exert pressure on the system through the citizens' associations that understand subject health care.

Fourthly, in Chapter XVI, Of the Hospital and other Institutions, the Code offers a place for citizen participation on at least two occasions. The first, at article 110, when it states that the physician is obliged to cooperate with the hospital's management, administrative and social Structures to ensure that the rights of the hospitalized patient are respected and that the rules for the best care of the sick are followed attendance . The second, in article 114, when it establishes the duty to set up as many Commissions as necessary for the good running of the Center, among which the Hospital Ethics Commission cannot be absent. I hope that in these Ethics Committees there will always be a place for representatives of citizens' associations.

As we can see, the future Code opens a wide channel for cooperation.

III. Preparing to cooperate

As we can see, there are difficulties but there are also possibilities. And we should not give up on them. Dialogue between physicians, managers and users of healthcare centers is not inevitably doomed to be an antagonistic confrontation: on the contrary, it can have a favorable, synergetic effect on the medical internship .

We must prepare ourselves. I do not know what will be the fate of the Resolution, approved on September 12, 1988 by the European Parliament, on harmonization in subject of ethics in the practice of medicine (Document A 2-78/88). As you all know, this Resolution contains very innovative indications in two fundamental areas: on the one hand, in the participation of different social sectors in the establishment of the ethical rules and principles of the internship of Medicine, and, on the other hand, in the resolution of deontological disciplinary proceedings. Whatever the outcome, one thing is clear: we physicians must prepare ourselves to adapt to new situations and, in these situations, we must retain and obtain the freedoms necessary for the humane and competent practice of our work.

For the time being, lacking experience of how the representatives of the users' associations can play their role in the commissions of management and development of the Health Centers, one can only hope that their partnership will be as beneficial as possible. Personally, I would like to see no shortage of people among the members of users' associations who understand how difficult it is to find a satisfactory solution for all to certain medical problems; people who are tolerant of the imperfection inevitable in every human work , but uncompromising with indifference and deliberate neglect; people who are not driven by political prejudice or reckless zeal, but who are able, at the same time, to firmly maintain the need for reform and to offer and accept sincere explanations. I believe that such people do exist. For this reason, I am not terrified, like other colleagues, of the possibility of greater citizen participation in the business to provide society with an increasingly more humane and efficient Medicine.

Thank you all for your attention.