Brief Description of the Project
The aim of this project is to explore the problem of health-care related conflicts between patients' autonomy and a collectivist and paternalist vision of public health interests. This broad issue will be attacked in a specific context determined by two factors:
-by its being embedded in a historical framework of post-communist democracies, and, in particular,
-by its particular interest in the practical question of how public policy initiatives can be conducted in countries that by and large ignore the tradition of civil
society input into policy decisions.
First I briefly summarize the policy issues that my research project will address (1) and, then, I will give indications on how the discussion of these issues will translate into an analysis of strategies of advocacy.
(1) Policy Issues
As this is a project in health care policy, its guiding principle is that of patient's autonomy or the patient's right to self-determination. This principle applies the more general principle of personal autonomy to the domain of health care. It holds that
-ordinary human persons have an overriding interest in making significant decisions about their lives, including decisions about their medical treatment, for
-they must be given the ability and opportunity to exercise self-determination in decision-making about their medical treatment;
-their health care must be conducted with due respect for their right to informed consent.
The very same principle can be reformulated in terms of competency: patients should have a right to mutually responsive communication about their health care needs. This requires empowerment, because dialogic reciprocity cannot hold unless the patient is capable to participate in such communication.
I want to explore the application of these principles in the domains of
-life and death issues: decisions at the end of life, caring about dying people;
-social control over individual decision: people with mental disorders, people with contagious diseases;
-the problem of equal treatment: people with HIV/AIDS, drug addicts, the mentally ill;
-dilemmas generated by new medical technologies: assisted reproduction, genetic intervention
Health care is perhaps the area of public life where a creative approach to the issue of advocacy is most needed. This is partly due to the strong impact of paternalism on health care authorities, and the interest of the medical profession in maintaining paternalistic practices (this attitude having particularly deep roots in post-communist societies with a long authoritarian past). Partly, it is the fact of overwhelming advances in biomedical science that confronts society with new problems in medicine.
I will discuss the issues listed in (1) from the perspective of how policy advocacy can be developed and sustained in their context. I will focus, in particular, on the following strategic questions:
-how to elaborate and submit legislative and policy recommandations for law makers and for various governmental agencies;
-how to identify the appropriate policy instruments;
-how to make sure that the principle of patient's autonomy, of informed consent, and of non-discrimination are kept on the health-care policy agenda;
-how to promote public education on basic issues of health care policy, how to raise public consciousness around such issues as that of informed consent,
patient's autonomy, and non-discrimination;
-how to facilitate public discussion about legal and ethical issues in health care (with an eye on the fact that there is no consensus between political stake
holders about even the most routine cases of health decision-making);
-how to launch local advocacy groups, e.g. paitents' groups, citizen's initiatives, legal aid services, etc., and how to establish a network of such groups so
that they can draw on each other for information and moral support;
-how to initiate and how to make use of a public health program network for making professional contacts and joint advocacy efforts, and
-how to ensure that citizens can meaningfully participate in formal bodies created around goverments or goverment agencies on life science issues.
At the end of the fellowship period, I will submit a report on the policy issues mentioned above from the point of view of these advocacy-related questions.
Detailed Description of the Project
1. Research objectives
1.1. Sources and Forms of Resistance to the Principle of Patients' Autonomy
The communist regimes utterly disregarded the value of personal autonomy, and nurtured a culture of paternalistic and collectivist interference with self-regarding decisions of the individual („paternalism” standing for interference with an individual's self-regarding decisions with the aim to promote his or her own good, while „collectivism” referring to interventions justified by reference to the public good). Thus, one of the main aims of the legal and institutional reforms in new democracies must be that of transforming the citizen-state relationship into one between an autonomous person and an institution that is expected to respect personal autonomy and that sees itself not as designed to dominate the individual but to assist her or him in taking informed decisions and in carrying them out. The inherited culture of paternalism and collectivism resists this transformation, and it is is more likely to resist it in certain domains than in others. Health care belongs to the domains where the paternalistic and collectivist patterns of thinking are particularly virulent and resistant.
A cursory look to the experiences this field suggests strongly that this is the case. Consider the contemporary public policy debates related to health care or bioethics. Invariably, these debates display the following two characteristics. First, all the participants pay lip service to the principle of informed consent. So, at the surface, it looks as if there is agreement on the importance of the health-care related decisions ultimately be taken by the patients themselves. But, second, below this surface there are deep disagreements on where the limits of informed consent are. And as soon as it comes to identifying those limits, paternalism and collectivism are cited as principles having strict priority over the right to personal autonomy. That is, paternalistic and collectivistic considerations are appealed to without any critical reflection, and whenever they seem to conflict with considerations of personal autonomy, the former are claimed to override the latter. For example, paternalism appears as the overriding consideration in the debates on legalizing euthanasia, while collectivism has the ultimate say in discussions on whether and how coercive measures are to be applied against drug users or people with HIV.
My research will look into the facts of the culture of paternalism and collectivism surviving communism and preserving a strong influence on medical practice in new democracies.
1.2. Informed Consent in the Practice of Old Democracies and of International Institutions
The institutional practices in new democracies are subject to two very different and conflicting influences. One is the impact of the local culture of paternalism and collectivism discussed in Sub-Section 1.1. The other is that of the models offered by old democracies and by the relevant internaional institutions.
What these models deliver to new democracies is not simply setting ideals for them. These countries undergo a process of integration into a web of international organizations, such as the Council of Europe and the European Union, and human rights principles, including those applied to medical practices, are part and parcel of these structures. Therefore, in order to become fully recognized members of the organizations in questions, new democracies must comply with these principles.
Thus, any comprehensive study must deal with the nature and evolution of these models, too. My research will explore the process that led, in old democracies, to a consolidation of the principle of informed consent. It will also offer an analysis of the international documents and court decisions that spelled out this principle in ever greater precision and detail.
1.3. The Conflict Between Patients' Autonomy and Public Health Interests
Following the discussion of the impact made on the health care practices in new democracies by the inherited culture of paternalism and collectivism on the one hand, and of the model of patients' autonomy procided by old democracies and international organizations on the other, my reasearch will address specific issues raised above one by one. This sub-section will be dedicated to the conflict between patients' autonomy and a collectivist consideration related to public health interests.
There are two domains of health care provision where policy makers, experts and the wider public are seriously divided on the limits of patients' autonomy: mental health care (psychiatry, addictology) and epidemiology. The contested question is, when and under what conditions a person with a mental disorder or an addiction or a person with some contagious disease can be coercively subjected to medical treatment.
According to traditional public health thinking, such questions are raised because human rights get in conflict with the interest of preserving public health; the conflict must be dealt with by balancing the two interests against each other; and the interest of public health invariably enjoys priority over the interest of personal autonomy. The key to the modern thinking on this issue is the recognition that, more often than not, the alleged conflict simply does not exist. This is because the efficient strategies of promoting public health are precisely those that seek willing cooperation on the part of those most likely to contract the illness to be combated. Coercive methods are extremely inefficient, according to the new thinking, because they deter the members of risk groups from revealing themselves and seeking medical assistance. One of the aims of my study is to reconstruct in great detail the arguments in favor of the new thinking, and to collect evidence that supports the claims the new thinking makes against the old one.
Another aim is related to the policy issues that the transition from old to new thinking unavoidably raises. Under the communist regime, mandatory testing and treatment enjoyed unchallenged legitimacy both with regard to the mentally ill and those with contagious diseases. Up to these days, the legal material of post-communist countries is full of provisions that permit or require coercive interference in the life of such people. Thus, thoroughgoing legal reforms are needed, so that coercion is not allowed to apply except as an ultimate measure, under narrowly defined circumstances and according to very strict procedures. My study will elaborate guidelines and other considerations for such reforms.
1.4. Insufficiency of Decision Making Capacity – Paternalism vs Supported Decision Making
One of the most difficult issues related to the principle of patients' autonomy is raised by the status of those human beings who are not fully autonomous in the sense of having independent decision making capacities: children, the elderly, the mentally ill. The old view takes it for granted that, in their case, paternalistic procedures are fully justified, and there is no room left for personal autonomy. According to the new thinking, however, the decision making capacity is not a yes-no property but one that admits of degrees and, therefore, most human beings in these groups can be enabled to take autonomous decisions in a more or less wide range of issues, rather than paternalistically replaced as decision makers. Also, fully competent persons can be provided with procedural facilities to make advance decisions for future situations where their competence will be absent or limited, or to provide for a surrogate decision maker.
As the issue discussed in Sub-Section 1.3, this one, too, raises problems of argument and evidence, on the one hand, and problems of policy, on the other.
1.5. Equal Treatment
What has been said in Sub-Sections 1.3 and 1.4 strongly suggests that certain groups need special protection against disadvantageous or adverse treatment in the domain of health care. The mentally ill, the drug addicts, the people with HIV/AIDS certainly do belong to this category, and my study will pay great attention to their problems.
In the post-communist countries, the status of the mentally ill is so intolerably bad that special legislation is a must here to secure the right to health care, the right to be treated in the least restrictive instituional settings for these people. As to the people with HIV/AIDS and the drug addicts in general, the rise of HIV epidemics in the region gives great urgency to the task of providing these people with legal protection against exclusion and denial of treatment. My study will examine how this can be done, particularly in the special context of post-communism.
1.6. Reproductive Rights, Genetic Intervention, and Euthanasia
When I said that the culture inherited from communist times is not favorable to patients' autonomy, that claim included that public opinion or significant parts of it may be hostile to personal independence and equal treatment in certain domains. The issues concerning reproductive rights, genetic intervention, and euthanasia are such deeply contested issues. The normative assumption behind my research proposal is that even where public opinion is deeply divided on an issue that impacts personal autonomy, the right of the individual to be the ultimate decision maker in matters regarding himself or herself must be respected. It is from this perspective that I will discuss the dilemmas generated by new medical technology that facilitates assisted reproduction, genetic testing and intervention, and explore the ways personal autonomy can be secured in this context. I also will address the special sources of resistance to such a development, sources that reside in the cultural heritage of communism.
As it was already indicated, my study will be based on argument, but also on empirical evidence. The evidence will be provided by the relevant international documents (treaties, recommendations), the law of the countries in question (particularly that of Hungary), and also their institutional practices (e.g., court decisions and guidelines issued by health care authorities). Public controversies on legal policy in the field of health care provision and medical intervention to improve pantients' reproductive capabilities or genetic status will be considered as well.
The main aim of my study is to facilitate the development of legal policy. When elaborating policy proposals, I will follow the model provided by the Policy Papers of HCLU that combine an appeal to political decision makers, policy experts and the wider public. This is the ideal my study will follow, too.
The project will run on two levels. At a more abstract level, it will explore general policy issues raised by the challenges of new medical technology, and will make legislative and policy recommendations in the fields listed above. At a more concrete level, it will discuss the particular conditions under which these issues are raised in post-communist countries. Its basic assumption will be that, in itself, a human rights friendly legislation does not guarantee that human beings become autonomous decision makers in their roles as patients of various kinds of inervention, nor does such legislation guarantee, in itself, that patients' right to informed consent will be respected. Legislative measures need to be combined with favorable institutional and social practices in order to reach their aim. Such practices are not automatically triggered by new legislation, though. They are to be created through collective effort, and this task raises special problems for the post-communist countries. The project will examine these problems, will make certain suggestions as to how they can be successfully dealt with, and will offer fresh ideas to legislators, civil orgnizations and institutional leaders on how the resistance to patients' autonomy can be overcome
3. Expected Practical Benefits of the Project
During the one and a half decade since the transition from communism to democracy, I was active in promoting the case of patients' rights. I have experience with legal aid provided in hospital and in the framework of a civil liberties organization, I took part in citizens' initiatives to influence legislation, led a group of medical and legal experts that prepared a Model Bill on the Rights of the Psychiatrically Ill, organized conferences and other forms of public debate. My considered conviction, consolidated as a result of such activities, is that post-communist countries face the danger to introduce ad hoc measures, under pressure from international organizations, and these ad hoc measures prove unsustainable over time.
An example to this is the ad hoc legalization of surrogate motherhood, abolished before coming to force upon the pressure of the Catholic Bishops' Conference. Another example is the law enabling people, on paper, to make advance directives, but impossible to make use of.
The upshot is that systematic thinking and public discussion are badly needed for a genuine progress to take place. My study aims to contribute to such thinking and discussion. Its ambition is to offer a comprehensive view on mutually compatible and feasible policy steps that, if made in a coordinated manner, would carry out a genuine progress in the direction of securing patients' autonomy.
4. Research Timetable
Phase 1 March-May 2005
Analysing national legal policies and institutional practices
Summarizing international standards and relevant international court decisions
Sources and Forms of Resistance to the Principle of Patients'Autonomy
The impact of the inherited culture of paternalism and collectivism
on the health care practices in new democracies
Particular conditions under which these issues are raised in post-communist countries
The Model of Patients' Autonomy
Exploring the process that led, in old democracies, to a consolidation of the principle of informed consent
Analysis of the international documents and court decisions that spelled out this principle
Phase 2 June-September 2005
Interviews with public health officials, legislators and patient organizations
Comparative analyses of guardianship laws in post communist countries
Conflict Between Patients' Autonomy and Public Health Interests
When and under what conditions a person with a mental disorder or an addiction or a person with HIV can be coercively subjected to medical treatment
Reconstruction of the arguments in favor of the new public health thinking based on cooperation with the individuals affected by the disease
Elaboration of legal guidelines on the use of coercive measures as an ultimate measure
Supported Decision Making
Analyses of the legal policy towards people who are not fully competent
Elaboration of a policy framework for enabling these people to make decisions on their own and for providing a surrogate decision maker
Phase 3 October-December 2005
Interviews with geneticians, medical staff of emergency and oncological units Exploration of general policy issues raised by the challenges of new medical technology
Dilemmas Generated by New Medical Technology: Reproductive Rights, Genetic Intervention, and Euthanasia
Paternalistic and collectivistic considerations as against considerations of personal autonomy: deep disagreements on where the limits of informed consent are
Elaboration on the requisite legislative measures, and on favorable institutional and social practices
Phase 4 January-February 2006
Writing the report
Content of the report:
Particular conditions under which the problems related to patients' autonomy are raised in the context of post-communism
The topics to be explored will range from dealing with close to death
situations, reproductive and sexual health issues, problems of informational
privacy, and those raised by genetic intervention.
Special attention will be paid to people in need of higher than average
standards of protection: people with mental disorders, the elderly, children, or
people with HIV/AIDS.
Legislative and policy recommendations for new democracies in favour of a genuine progress in the direction of securing patients' autonomy.
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