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SEVENTEEN: Changing Patterns of Protection and Care for Incapacitated Adults: Perspectives from a European Society in Transition
- Johns Hopkins University Press
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mc h a t e r s e v e n t e e n Changing Patterns of Protection and Care for Incapacitated Adults Perspectives from a European Society in Transition Eugenijus Gefenas, M.D., Ph.D. The idea of developing a European-American dialogue on palliative care for persons with Alzheimer disease (AD) presupposes two more or less homogeneous groups of discussion partners bringing different perspectives on the issue. The problem is, however, that the European counterpart of this dialogue is no longer a homogeneous one. Even though European integration is supposed to be based on common European values and perspectives (which are often presented as being in opposition to American ones), the process of European unification has revealed striking differences between European states themselves, especially those called transition societies and those regarded as welfare states.A discussion sensitive to sociocultural differences should take this situation into account. What are the main principles and features of the changing attitudes toward incapacitated persons taking place in modern society? How should these changes be evaluated from the perspective of Central and East European (CEE) countries? Should caring for such adults be regarded as a priority area in the context of a social and health care of post-Communist societies, also called transition societies? These are the central topics dealt with in this chapter. The chapter starts with an overview of legal reform in the field of the protec- tion of fundamental rights of incapacitated persons as reflected in a recently adopted European Recommendation on Principles Concerning the Legal Protection of Incapable Adults (Council of Europe, 1999). Even though legal regulations are not the only factor influencing the model of care existing in the society, the analysis of the existing legislative framework concerning one of the most vulnerable groups of the population highlights ethical principles prevalent in a particular society. It also helps us to predict the tendencies of future developments in different countries and sociocultural contexts. m Changing Attitudes toward Incapable Persons In 1999, the attempt to facilitate the process of reform in the member states of the Council of Europe resulted in adoption of the Recommendation on the Principles Concerning the Legal Protection of Incapable Adults. In general, the recommendation has been based on the recognition that existing freedoms and capacities of people suffering from different types of mental disorders (including AD) should be preserved as much as possible. This general principle has also been applied in the field of health care interventions. The adoption of the recommendation was possible because the notion of protection of incapable persons has significantly changed in many democratic welfare societies in the last few decades. The most important feature of these changes has been the strengthening of respect for decision making by the affected persons themselves. That is why the legal reform dealing with the protection and care of incapable persons could also be regarded as a manifestation of a broader ethical development. This development is based on the increasing role of two fundamental ethical principles: human dignity and respect for personal autonomy. Even though the principles and values constituting the ideological background of the recommendation could be regarded as self-evident and firmly established in Western countries with a stronger tradition of protecting human rights, they are not really implemented or sometimes even recognized in the context of European societies in transition. From this point of view, the recommendation is a most important document for the European transition societies as it helps to define the main features of reform badly needed in CEE countries. Changing Patterns of Protection and Care 27 [54.226.222.183] Project MUSE (2024-03-19 05:29 GMT) m Traditional and Alternative Types of Legal Framework According to a survey on the issues concerning incapacitated adults conducted in the process of drafting the European Recommendation, the present member states of the Council of Europe have wide disparities in legislative systems of protecting incapable adults (Council of Europe, 1998). Two opposite models within the variety of the existing systems can be distinguished: 1. The traditional system is characterized mainly by a deprivation of all, or almost all active, legal capacity to make decisions, coupled with the appointment of a guardian who represents the person concerned in almost all matters. This type of system denies any meaningful participation of the incapacitated person into his or her own care-related decision making. 2. An alternative system is based on...