Judit Fridli:
New Challenges in the Domain of Health Care Decisions

Position Paper
May, 2005

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.

Health care treatment, genetic and reproductive intervention raise difficult ethical problems, and so they confront medical practice with new challenges. Due to the spectacular development in medical technologies, the complexity of these problems and challenges is on a continuous rise. Therefore, patients' autonomy cannot be taken for granted even in countries with a long experience with an institutional protection of human rights in various domains of life. In the new, post-communist democracies, this general situation is further complicated by the absence of a public culture of human rights.

My research project aims to examine the problems related to patients' autonomy in the context of post-communism. The final outcome will consist in a set of policy recommendations for new democracies. The topics to be explored 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 because of their limited decision making capacity or their stigmatized social status: people with mental disorders, the elderly, children, or people with HIV/AIDS.

The aims of the project are those of

- mobilizing coalitions to encourage legislators, civil organizations and institutional leaders to overcome
   resistance to patients' autonomy and to strive to develop frameworks favorable for patients' rights;
- striving to keep the principles of patient autonomy, informed consent and non-discrimination on the
   health-policy agenda;
- facilitating a more adequate decision making concerning the use of genetic interventions and other
   new medical technologies.

Resistance to the autonomy principle in the post-authoritarian countries

The inherited culture of paternalism and collectivism resists the recognition of the informed consent principle. Health care belongs to those domains where the paternalistic and collectivist patterns of thinking are particularly virulent and resistent.

A cursory look to the experiences in 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. My research looks into the facts of the culture of paternalism and collectivism surviving communism and preserving a strong influence on medical practice in new democracies.

Informed Consent in the Practice of International Institutions

My research will offer an analysis of the international documents and court decisions that spell out this principle in ever greater precision and detail.

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 question, new democracies must comply with these principles.

Policy Issues Addressed by my Research Project:

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 themselves;

- they must be given the ability and opportunity to exercise self-determination in decision-making about
   their medical treatment;

- health care must be provided to them with due respect for their right to informed consent.

I am exploring the application of these principles in the domains of

- surrogate decision-making;

- 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

- the problem of equal treatment: people with HIV/AIDS, drug addicts, the mentally ill;

- dilemmas generated by new medical technologies: assisted reproduction, genetic intervention.

Final Results - Advocacy Oriented Analyses and Recommendations

Systematic thinking and public discussion are badly needed for a genuine progress to take place. My research 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. The final outcome of the project will consist in two papers:

- a research paper providing a comprehensive analysis of the issue of human rights in health care
- a policy study with recommendations for lawmakers and governmental agencies in Hungary and
   elsewhere concerning legal reforms and identification of effective advocacy initiatives.

I will discuss the above-listed issues 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 recommendations 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-

- 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. patients' 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.

Judit Fridli

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