The Rights of Patients / Patienters rettigheder
Introduction in English:
ICP/HLE 121
28 April 1994
Original: English
ABOUT THE DECLARATION
The European Consultation on the Rights of Patients, held in Amsterdam on 28-30 March 1994 under the auspices of the WHO Regional Office for Europe (WHO-EURO), and hosted by the Government of the Netherlands, was attended by some 60 persons from 36 Member States. The purpose was to define principles and strategies for promoting the rights of patients, within the context of the health care reform process underway in most countries.
The Consultation came at the end of a long preparatory process, during which WHO/EURO encouraged the emerging movements in favour of patients’ rights by, inter alia, carrying out studies and surveys on the development of patients’ rights throughout Europe. These studies showed a common interest and a number of policy trends and normative initiatives in the European countries, indicating that additional support to policy development in many of those countries would be appropriate. The study results were published in the book : The Rights of Patients in Europe (WHO 1993). With the support of the Government of the Netherlands, and in broad consultation with governments and other institutions in European countries, technical experts in the field drafted The Principles of Patients’ Rights, a comprehensive text which could be meaningful and helpful in the development of country policies on patients’ rights.
The Declaration on the Promotion of Patients’ Rights in Europe constitutes a common European framework for action and includes those principles, as endorsed by the Amsterdam Consultation. This declaration should be interpreted as an enhanced entitlement for citizens and patients in improving partnership in the process of care with health care providers and health services managers. The Principles on Patients’ Rights endorsed at the Amsterdam Consultation should be interpreted by Member States as a solid reference and a dynamic tool capable of improving new thinking in the health care process.
The complete proceedings of the consultation will be published as a separate publication during the current year.
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A WHO European Consultation on the Rights of Patients, meeting in Amsterdam from 28-30 March 1994, endorsed the annexed document (Principles of the Rights of Patients in Europe: A Common Framework) as a set of principles for the promotion and implementation of patients’ rights in WHO’s European Member States. The meeting gave detailed consideration to a wide range of possible strategies based on the principles presented in the document and on the recent and current experiences of participants. The essence of these strategies is presented below. |
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The development of a strategy to promote patients’ rights and responsibilities has to be carefully prepared, in order to ensure that the intention is translated into practical action which commands the support of all parties involved. Such action does not follow automatically, but takes time to become fully effective. National situations vary in respect of legal frameworks, health care systems, economic conditions, and social, cultural and ethical values, but there are certain common approaches which can be appropriately adapted to the circumstances of each country. We encourage all interested parties in our countries to initiate or renew multiple strategies of implementation, which will likely need most or all of the following components:
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| INTERNATIONAL ACTION
Co-operation between WHO, the Council of Europe and the European Union in support of patients’ rights would be further enhanced by action taken as a result of this Consultation. Consistency of policy positions, co-ordinated strategies of implementation and an understanding of how their respective resources and competence can best be used are essential components of a sustained European movement to promote and protect the rights of patients and their professional providers and advisers. International NGOs also have a critical role to play in promoting the rights of patients. The forthcoming WHO Regional Conference on Health Policy will provide an important opportunity for further promoting patients’ rights in Europe. The proposed WHO Regional Conference on Health Care Systems in Transition in Europe, to be held in Ljubljana in 1996, will also explore issues concerning the rights, roles and responsibilities of both patients and providers. We propose to WHO that the Regional Office should establish an appropriate mechanism to monitor developments in countries and to present the findings to the Ljubljana Conference. |
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A COMMON FRAMEWORK INTRODUCTION 1.BACKGROUND Social, economic, cultural, ethical and political developments have given rise to a movement in Europe towards the fuller elaboration and fulfilment of the rights of patients. New and more positive concepts of patients’ rights have been advocated. In part, this has been a reflection of the central place given both to full implementation of the concept of respect for persons and to equity in health as a policy objective in Member States. As a consequence there is now greater emphasis on the encouragement of individual choice and the opportunity to exercise it freely, and the commitment to build mechanisms for ensuring quality of care. Developments within health care systems such as their increasing complexity, the fact that medical practice has become more hazardous and in many cases more impersonal and inhumane, often involving bureaucracy, and no less the progress made in medical and health science and technology have all placed new emphasis on the importance of recognizing the individual’s right to self-determination and often on the need to reformulate guarantees of other rights of patients. Simultaneously, the human rights movement has gathered importance in the world since 1945, when, in the Charter of the United Nations, Member States reaffirmed their faith in fundamental human rights. This was followed, on 10 December 1948, by the adoption of the Universal Declaration of Human Rights and, on 4 November 1950, by the signature of the European Convention of Human Rights. Governments are giving more and more active consideration to such issues. The World Health Organization’s study of patients’ rights in Europe shows increasingly that there are shared principles that are being adopted in a number of countries and which seem to the independent of the characteristics of a given country’s health system. It seem timely to give this policy trend further momentum. The forthcoming WHO Regional Conference on Health Policy will provide an important opportunity for further promoting patientsin ’ rights Europe. The proposed WHO Regional Conference on Health Care Systems in Transition in Europe, to be held in Ljubljana in 1996, will also explore issues concerning the rights, roles and responsibilities of both patients and providers. We propose to WHO that the Regional Office should establish an appropriate mechanism to monitor developments in countries and to present the findings at the Ljubljana Conference. The present document is an attempt to formulate a set of patient’s rights which reflects the evolving concepts and is relevant to the context in which health care will be provided in future. These Principles of the rights of patients in Europe have been drafted in full awareness of the work of others who have already been engaged in drawing up instruments specific to patients’ rights. For the most part, though, such previous efforts were directed at particular groups or concerned with specific activities in health care or approached patients’ rights from the perspective of the duties and responsibilities of health care providers and establishments. The present text is the result of an attempt to refocus these concerns from the patients’ point of view as the user and of the partner in health care in all its various forms. It has been deliberately couched in general terms, so far as possible avoiding reference to the circumstances of particular groups or illustrative examples. It is felt, however, that this exposition of general considerations embraces the basic principles and concepts to be adopted when promoting and guaranteeing patient’s rights in a particular country or another situation. The text does not directly cover questions of implementation, since these are necessarily specific to a country or situation; it has nevertheless been drafted in the belief that these guidelines can be further elaborated within countries to suit their particular needs and circumstances. |
| GUIDING PRINCIPLES
In this text, the concept of health care is derived from the principles of the World Health Assembly resolution on health for all (HFA) (WHA30.43) and the related model of health care set out in the Declaration of Alma-Ata. Health care thus embraces a full range of services covering health promotion and protection, disease prevention, diagnosis, treatment, care and rehabilitation. Accordingly, the patient encounters a wide variety of health care providers and fulfils a variety of roles, from a sick and dependent person to a client receiving advice from the consumer or the customer obtaining health products for self-administration. Furthermore, this variety of patient roles implies a continuum of health states from a high-level of good health to permanent disability and terminal illness. In the treatment of patients’ rights, a distinction should be made between social and individual rights. Social rights in health care relate to the societal obligation undertaken or to otherwise enforced by the government and other public or private bodies to make a reasonable provision of health care for the whole population. What is reasonable in terms of the volume and the range of services available and the degree of sophistication of technology and specialization will be dependent on political, social, cultural and economic factors. Social rights also relate to equal access to health care for all those living in a country or other geopolitical areas and the elimination of unjustified discriminatory barriers, whether financial, geographical, cultural, social and psychological. Social rights are enjoyed collectively and are relative to the level of development of the particular society; they are also in some measure subject to political judgement regarding priorities for development in a society. In contrast, individual rights in patient care are more readily expressed in absolute terms and when made operational can be made enforceable on behalf of an individual patient. These rights cover such areas as the integrity of the person, privacy and religious convictions. Although this text does address social rights, the main focus is on individual rights. The conceptual foundations for this treatment of patients’ rights are for the most part laid on a number of intergovernmental declarations relating to human rights and freedom. The intention is not to create new rights but to apply them in one coherent, comprehensive statement to the field of patients and health care. For similar reasons the text does not address general rights, obligations and liabilities, which are covered by the statutes and case law of each country. A further issue arises concerning the place of exceptional limitations to particular rights of patients. For the most part these have been kept out of the text, in order to state the proposed rights as clearly and simply as possible. It is therefore pertinent to clarify here at the outset the nature of the principal forms of limitation. Exceptions to the rights of patients are usually anticipated in law. The guiding rule in such exceptions is always that patients can be subjected only to such limitations as are compatible with human rights instruments and in accordance with a procedure prescribed by law. In practice, this means limitations which apply for reasons of public order, public health and other persons’ human rights. In some situations, the reason for restricting the rights of the patient is an overriding interest to a third party (the so-called ‘conflict of duties’ doctrine), i.e. the unfettered application of the patient’s rights would cause serious harm to a third party, there is no other means to avoid the harm and there is a reasonable expectation that the restriction would prevent the harm. In other situations a similar justification applies when the purpose is to avoid serious harm to the patient (the so-called ‘therapeutic exception’). As this document addresses general principles, these exceptional limitations to the rights of patients have mostly not been included. |
| PURPOSE OF THE DOCUMENT
The Principles of the Rights of Patients in Europe are offered as a contribution to support the growing interest in many Member States in the issues of patients’ rights. In its scope and focus, this document seeks to reflect and express peoples’ aspirations not only for improvements in their health care but also for fuller recognition of their rights as patients. In so doing, it keeps in mind the perspectives of health care providers as well as of patients. This implies the complementary nature of rights and responsibilities: patients have responsibilities both to themselves for their own self-care and to health care providers, and health care providers enjoy the same protection of their human rights as all other people. There is a basic assumption in the text that the articulation of patients’ rights will in turn make people more conscious of their responsibilities when seeking and receiving or providing health care, and that this will ensure that patient/provider relationships are marked by mutual support and respect. Patients should be aware of the practical conditions they can make to the optimal functioning of the health system. Their active participation in the diagnosis and treatment process is often desirable and sometimes indispensable. It is always important that they provide the relevant health professionals with all the information required for the purposes of diagnosis and treatment. The patient has an essential role, the reciprocal of the provider’s, in ensuring that the dialogue between them is carried out in good faith. Indeed, the role patients play in the appropriate delivery of health care should be underlined, especially in today’s complex health systems which are largely supported by collective financial mechanisms and where the economic and equitable use of resources allocated to health care is an objective which can be shared by health professionals and patients alike. Equally, while patients’ participation in clinical teaching must be subject to their informed consent, they should also be aware that the competence of future professionals in part depends on patients agreeing to be involved in their training. |
| IMPLEMENTATION
It is a matter for decision by countries how they might make use of a document such as this when reviewing their present policies on, practices in and legislative support to, patients’ rights. Although for the purposes of clarity of presentation some proposals are made in a clear-cut way, the text is a set of guidelines which could be used in policy discussions within countries and in the formulation or reformulation, as the case may be, of national policies, laws or official statements on any or all of the issues covered. However, it is hoped that this document will be of direct value to all parties, including patient and consumer bodies involved in health care, professional associations of physicians and of other health care providers, and associations of hospitals and other health care establishments. |
| 2. OBJECTIVES
Against this background, the Principles of the Europe can be seen, in terms of content, as a document which seeks: - to reaffirm fundamental human rights in health care, and in particular to protect the dignity and integrity of the person and to promote respect of the patient as a person; - to offer, for the consideration of Member States, a set of common basic principles underlying the rights of patients, which might be used when framing or reviewing patient care policies; - to help patients obtain the fullest benefit from their use of the services of the health care system, and mitigate the effects of any problems which they may experience with that system; - to promote and sustain beneficial relationships between patients and health care providers, and in particular to encourage a more active form of patient participation; - to strengthen existing and afford new opportunities for dialogue between patients’ organizations, health care providers, health administrations and wider societal interests; - to focus national, regional and international attention on evolving the needs in patients’ rights and to foster closer international cooperation in this field; - to ensure the protection of fundamental human rights and to promote the humanization of assistance to all patients, including the most vulnerable such as children, psychiatric patients, the elderly, or the severely ill.
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