Abstract [Resum] [Resumen]
Aim: The paper examines the current situation of recognition of patients' right to information in international standards and in the national laws of Belgium, France, Italy, Spain (and Catalonia), Switzerland and the United Kingdom.
Methodology: International standards, laws and codes of ethics of physicians and librarians that are currently in force were identified and analyzed with regard to patients' right to information and the ownership of this right. The related subjects of access to clinical history, advance directives and informed consent were not taken into account.
Results: All the standards, laws and codes analyzed deal with guaranteeing access to information. The codes of ethics of both physicians and librarians establish the duty to inform.
Conclusions: Librarians must collaborate with physicians in the process of informing patients.
The debate on patients right to be informed on their health status and treatment began in the mid-20th century in the United States, where these rights have now been fully consolidated and are an example for the rest of the world. The current interest stems from several factors: the increase in chronic diseases and the progressive ageing of the population, the interest of physicians in sharing responsibility for the decisions taken, and societys incipient demand for high-quality information on health subjects. In addition to the ethical aspects, there is a clear economic factor at play: informed patients are active workers in their process of recovery because they are more responsible for their complaints and treatments. This leads to reductions in the health costs of the public administration and insurance companies (Roth, 1978).
La Caixa Foundation commissioned the DENEA research group to carry out a worldwide study of current experiences related to offering educational and leisure services to hospitalized patients through the use of information and communication technologies (Rodríguez; Vall, 2004). The researchers later studied the involvement of public libraries in the creation, management and maintenance of these services (Rodríguez; Vall, 2005). Finally, they studied how the patients of a hospital exercise their right to information (Rodríguez; Vall, 2006a) and considered whether it was necessary to create a special area for this service (Rodríguez; Vall, 2006b). The work carried out led them to study the way in which patients exercise their right to be informed on their condition and on the treatment to be given in several countries European Union in western Europe (Rodríguez; Vall, 2006c, 2008).
This paper examines three fundamental areas of patients' right to information. From a psychological viewpoint it considers the benefits of informing patients of their health status. From a legal and regulatory viewpoint, it considers how this right is established by national and international laws, and from an ethical viewpoint it considers how it is established in codes of ethics of physicians and librarians. Finally, some conclusions are presented on how librarians can collaborate with health care professionals in providing information to patients.
This study is based on an analysis of international standards and national legislation on the recognition of patients' right to information in Belgium, France, Italy, Spain (and Catalonia), Switzerland and the United Kingdom, and the codes of ethics of physicians and librarians in these countries. The countries were selected as being representative of the geographic, linguistic, cultural and sociological diversity in western Europe. Catalonia was included in order to add a regional perspective.
The analysis focused strictly on patients right to be informed and the establishment of the owners of this right. Related subjects such as patients' right not to be informed, access to medical history, informed consent and advance directives were therefore not taken into account. The documentation consulted (international standards, national laws and codes of ethics that are currently in force) was obtained by consulting the associations, institutions and bodies that drew them up. There is no single source for consulting the legisltaion of the countries analyzed.
3 The right to information: the current situation
3.1 The psychological framework
For some time physicians and psychologists have been investigating methods that mitigate the negative effects that patients suffer as a result of their condition. One of the most widely used strategies is psychological preparation. This seeks to achieve the well-being of the patient through information. Several studies have shown that providing patients and their families with full, high-quality information reduces their anxiety, so in general they achieve a better and more rapid recovery and are more collaborative during the treatment period (Ortigosa; Méndez, 2000). If this information is to achieve the desired effects, aspects such as the patients' cognitive and emotional development, their previous experience of life and their attitude towards the condition must also be taken into account.
The growing awareness that information increases quality of life and the constant progress of medicine have also led patients and their families to demand fuller information on their health status in order to conserve their dignity and, if possible, take part in decision-making on subjects that affect them directly: The users expect [...] understandable and truthful information that allows them to face their process with dignity, the removal or palliation of avoidable pain and suffering, the sensation that each action, each test, each intervention, is justifiable according to their own needs and no other factor, [...] the guarantee that they receive care in equitable conditions and, above all, that their right to take decisions on their own lives, their own pain and their own condition is respected. The patient wants, needs and expects to be treated as a person rather than a case (Hernández, 1998).
Despite the increasing awareness of both health workers and patients, and the recommendations of the sectors involved, patients still tend to lack appropriate medical information on their condition.
3.2 The regulatory and legal framework
The international standards, national laws and codes of conduct that were analyzed are presented in Table 1. Extracts from these documents referring to patients right to information are presented in Table 2.
3.2.1 International standards
In 1994, the World Health Organization Regional Office for Europe (WHO/Europe) adopted A Declaration on the Promotion of Patients Rights in Europe, which seeks to reaffirm fundamental human rights in health care and to promote respect of the patient as a person. It also seeks to reinforce the relationship between the patient and health care providers, to encourage the active participation of patients in their treatment and to humanize the assistance they receive. Article 2 states: Patients have the right to be fully informed about their health status, including the medical facts about their condition; about the proposed medical procedures, together with the potential risks and benefits of each procedure; about alternatives to the proposed procedures, including the effect of non-treatment; and about the diagnosis, prognosis and progress of treatment. [ ] Information must be communicated to the patient in a way appropriate to the latters capacity for understanding, minimizing the use of unfamiliar technical terminology.
In 1997, the Council of Europe approved the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine. Its aim is to achieve the harmonization of the laws of the member countries, which must include in their legislation the principles expressed, such as respect for the dignity of human beings and for the fundamental rights and freedoms of the individual, including the patients' right to information: Article 5. General rule. An intervention in the health field may only be carried out after the person concerned has given free and informed consent to it. This person shall beforehand be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks. The person concerned may freely withdraw consent at any time. Article 6. Protection of persons not able to consent. 1 ... an intervention may only be carried out on a person who does not have the capacity to consent, for his or her direct benefit. 2. Where, according to law, a minor does not have the capacity to consent to an intervention, the intervention may only be carried out with the authorization of his or her representativ e The opinion of the minor shall be taken into consideration as an increasingly determining factor in proportion to his or her age and degree of maturity. 3. Where, according to law, an adult does not have the capacity to consent to an intervention because of a mental disability, a disease or for similar reasons, the intervention may only be carried out with the authorization of his or her representative ... The individual concerned shall as far as possible take part in the authorization procedure.
In its Charter of Fundamental Rights of the European Union, of 2000, the European Union states that the free and informed consent of the patient must be respected, according to the procedures laid down by the law of each country.
In the Ottawa Charter for Health Promotion, of 2000, the WHO simultaneously incorporates the concepts of information to patients and education for health: Health promotion supports personal and social development through providing information, education for health and enhancing life skills. By so doing, it increases the options available to people to exercise more control over their own health and over their environments, and to make choices conducive to health. The Ottawa Charter considers that health is not only the absence of illness but also the acquisition of healthy habits that help people to lead a full life. In order to acquire these habits one needs education and information. In this context, UNESCO and the International Federation of Library Associations and Institutions (IFLA) defend the role of libraries and their professionals in the process of educating and informing citizens in general, and patients and their families in particular, by means of suitable documentation.
In the Guidelines for Libraries Serving Hospital Patients and the Elderly and Disabled in Long-Term Care Facilities, of 2000, the IFLA proposes the following objectives for libraries: To encourage the recognition that, consistent with the concept of whole patient care, libraries or library services should be a fundamental part of any short-or long-term care facility [ and] to foster the well being and recovery of patients by: acquiring, organizing, maintaining, and/or providing library materials and services that can, according to each patients need, offer a means of diversion, therapy, culture and, where appropriate, education and training; as needed, providing information on health and wellness, and on specific illnesses, disorders, or other health-related problems including etiology, diagnosis, prognosis, and treatment.
The Public Library Manifesto of the IFLA/UNESCO, of 1994, states that: The services of the public library are provided on the basis of equality of access for all. [...] Specific services and materials must be provided for those users who cannot, for whatever reason, use the regular services and materials, for example linguistic minorities, people with disabilities or people in hospital or prison.
The added value of the Manifesto with regard to the standards mentioned above is the recognition of the mission of public libraries as actors in education: supporting both individual and self conducted education as well as formal education at all levels. In this context libraries become active collaborators of the health authorities in educating citizens on health subjects.
3.2.2 National legislation
The international standards form the basis for legislation on this subject. Most of the laws on patients' rights include the principles related to human dignity. For example, the Catalan and Spanish laws provide a detailed list of the fundamental standards on which they are based: the Universal Declaration of Human Rights, A Declaration on the Promotion of Patients Rights in Europe (World Health Organization Regional Office for Europe. WHO/EURO, 1994) and the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (Council of Europe, 1997).
- The right to information involves not only providing all the information but doing so in a way most suited to the characteristics of the patients. The French Law on the rights of patients and the quality of the health system, for example, details the type of information that must be provided: Art. L. 1111-2. All persons have the right to be informed on their state of health. This information deals with the different investigations, treatments or preventive actions that are proposed, their utility, whether they are urgent, their consequences, the normally foreseeable common or serious risks that they involve, the other possible solutions and the foreseeable consequences if they are refused....
This law also refers to a manual of good practices on how this information must be provided. This is a new feature, because the other laws only express this principle but do not provide specific instruments for implementing it: Recommendations of good practices on providing information are established by the National Health Accreditation and Evaluation Agency and are homologated by a decree of the minister for Health.
- The owner of the right to information is established according to the age and degree of dependence of patients. There is a general consensus on the need for a legal guardian for minors and incapacitated adults, but it is nevertheless recommended that patients be informed and, as far as possible, that they take part in the decisions that must be taken. The Belgian Law on patients rights, for example, describes it as follows: Chapter IV.- Representation of the patient. Art. 12. § 1. If the patients are minors, the rights established by the present law will be exercised by their parents exercising their authority over the minor, or by their guardians. § 2. According to their age and maturity, the patients should be involved in the exercise of their rights. The rights laid down in this law may be exercised autonomously by minor patients who can be considered to be able to reasonably appreciate their interests. Art. 13. § 1. The rights, as established by the present law, of adult patients with the status of prolonged minority or judicial disability are exercised by their parents or guardians. § 2. The patients are involved in the exercise of their rights as much as possible and taking into account their ability to understand.
In order to better exercise their right to information on subjects related to health, citizens must be able to obtain a good health education. Only the legislation of the United Kingdom provides specific guidelines of action on this: 12.2: ... patients will get greater access to authoritative information about how they can care for themselves and their families under the aegis of NHS plus which will produce and kitemark books, leaflets and other written material.
3.3 The ethical framework
3.3.1 Codes of ethics of the medical profession
The basis of these codes is the Hippocratic Oath by which physicians are obliged to act always for the benefit of their patients. The right to information can be understood as a the updating of a partial aspect of this obligation. Citizens' interest in receiving information on their own conditions arose from the demands of groups of AIDS patients, and was later extended to all layers of society. The medical codes of ethics were the first to recognize that this demand for information is a right that can be exercised, and this recognition was later ratified by national parliaments. The codes of ethics were subsequently updated to make reference to the law. This code-law-code sequence is not found in librarians' codes of ethics, as will be seen below.
All the codes analyzed devote a whole section to the relationship between physicians and patients, including patients' right to information. As stated above, our interest focuses on the ownership and exercise of this right, and does not consider patients' right not to be informed, access to medical history, informed consent and advance directives. This distinction is not arbitrary because some codes consider these questions separately.
The right to information is dealt with in a similar way in all the codes. The Catalan case can serve as an example: Art. 22 Doctors are obliged to give patients as much information as possible on their state of health, the steps taken in the diagnosis, the complementary investigations and the treatments. The information must be given in an understandable way and exercising caution.
Below we present some significant aspects of some codes, such as the concept of the patient as a citizen, the reference to the legal order of each country, the description of how relations between physicians and patients must be conducted, information in the case of minors and dependent persons, and the defense of physicians as the only persons responsible for informing patients.
- The Italian code makes no distinction between the terms patients and citizens. In Section III, Article 33 it states that the guarantee of the welfare state is based on the fact that all inhabitants pay taxes; from this moment on, an inhabitant acquires the category of being a citizen. In European countries in the 21st century citizens approach their relations with doctors as equals and with the same expectations and requirements of accessibility and efficacy that they have of any another service paid for with their taxes.
- The reference to the prevailing law appears in all the codes analyzed. The French code, however, is the only one that directly links each article of the code with the legal text. For example: Article 35 (Article R.4127-35 of the Public Health Code) The physician....
- The doctor-patient relationship is described in detail in the British code: 21 To fulfil your role in the doctor-patient partnership you must: (a) be polite, considerate and honest (b) treat patients with dignity (c) treat each patient as an individual ... (f) encourage patients who have knowledge about their condition to use this when they are making decisions about their care. The British code is also the only one that has drawn up complementary guides on aspects of the code that are difficult to apply.
- The categories of patients, according to age and degree of dependence, determine who is informed and how. For example, Article 42 of the French code states: Physicians of minors or dependent persons must endeavor to inform their parents or legal representatives.
- The codes claim that physicians are the only persons responsible for informing patients. For example, Article 10 of the Swiss code states that The physician must give the patient understandable information on the diagnosis and the most suitable therapy, on the results of the tests, the prognosis and the risks, and other possibilities of treatment. Can librarians also participate in the process of informing and educating patients on general aspects of their complaint, warning them that they never replace physicians but merely continue the informative task initiated by the latter? We believe that they can because informing is the essence of library work (CAPHIS, 1996).
3.3.2 Codes of ethics of information professionals
Unlike the codes of ethics of physicians, which appear to obtain their authority and inspiration beyond the law, the codes of librarians are subordinated to the law. All, without exception, make implicit or explicit reference to the legal and regulatory framework as the supreme authority to which the professional activity should adapt, as is observed, for example, in The Librarians Code of Conduct: Fundamental Principles of the Italian Library Association (AIB): The librarian guarantees the user access to publicly available information and to documents without any restriction that is not explicitly and previously stated in laws or regulations.
The librarian's codes of ethics vary in content, but they all contain sections or articles devoted to services to users and access to information and/or documents. They do not deal with the offer of specific services aimed at satisfying the needs of specific groups, except in the Code of Ethics of the Official Catalan Association of Librarians and Documentalists (COBDC): Librarians and documentalists seek to promote the adoption of measures facilitating the use of library services by people with disabilities. However, they always mention the obligation to guarantee access to information to all citizens because it is a fundamental right.
The recognition of this fundamental right reflects the educational component inherent to the librarian's profession. On this, for example, the Code of Ethics of Swiss Librarians (BBS) states that the librarian seeks to make the users autonomous, and to this end forms collections that will allow ... [users] to understand the evolution of society, to exercise their democratic rights, to develop culturally and professionally, and to enjoy themselves.
The Code of Ethics of Librarians of the French Librarians' Association (ABF) states that librarians are charged by users to respond to their information needs: Librarians are charged by their public or private community to respond to its needs in terms of culture, information, education and leisure. To this end they form public collections and ensure their development and their use by citizens. Aware of their responsibility, librarians makes an unconditional commitment to fulfill this commission. This commitment guarantees the quality of the service offered, which is based on an ethical imperative (Hernández, 1998) rather than on the unilateral decision of librarians or the organization for which they work.
In this study we have attempted to present the the current situation on the recognition of patients' right to information in the legislation and in the codes of ethics of physicians and librarians in several Western European countries. We have tried to offer an overview that will allow each country and each group to reflect on how and to what extent patients can exercise this right, how all the stakeholders should intervene, and what information should be provided and in what context.
- The right to be informed is a fundamental human right. To preserve the human dignity of patients, one must consider them as persons with rights, one of which is the right to receive appropriate information on their own complaint and the treatment to follow.
- The recognition of the right to information and its establishment in laws, standards and codes of ethics follows a different chronological sequence in the case of physicians and librarians. The codes of ethics of physicians were the first to establish and protect this right to information. National parliaments legislated on this subject as the medical associations approved their codes. The codes of ethics of the medical profession were later updated to refer to the prevailing law. In the codes of librarians the order was the opposite: the codes recognise an explicit subordination to the prevailing regulatory and legal framework.
- The recent approval of the laws and codes analysed clearly shows the interest that the subject arouses at present and the existence of a favourable social climate. In the countries that do not yet have a specific law (Italy and Switzerland) parliamentary initiatives are currently working in this direction.
- In this context, one must inevitably ask what role librarians should play. Thanks to their training, librarians know how to seek, select, process and disseminate the information that is best suited to each patient. However, they clearly cannot act in isolation or individually, but must work in close collaboration with health workers, with each group of professionals contributing what they know best according to their speciality.
All the standards, laws and codes analysed deal with guaranteeing access to information. However, previous research shows that patients are not always aware of this right, doctors may be unreceptive to it and the resources for satisfying it are often not available. We therefore believe that it is necessary to generate a debate on the question with the participation of all the stakeholders (politicians, authorities, doctors, librarians and patients) in order to achieve the effective application of this right.
The authors express their thanks to Inés Montobbio (Biblioteca del Parlament de Catalunya), Sara Aguilera (Fundació Biblioteca Josep Laporte) and Dr. Anna Villarroya (Facultat de Biblioteconomia i Documentació. Universitat de Barcelona) for their support.
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* The political and administrative division of the Swiss Confederation permits each canton to approve laws according to its own needs (Vaud: Loi sur la santé publique, 1985; Valais: Loi sur la santé, 1996; Fribourg: Loi sur la santé,1999; Berna: Ordonnance sur les patients et les professionnels de la santé, 2002). The current inexistence of a common legislative framework in this area does not diminish the significance of the law on public health from the canton of Vaud (Loi sur la santé publique) that, as early as 1985, already considered the right to patient information (art. 21).
Table 1. The international standards, national laws and codes of conduct that were analyzed.
|COUNTRY||LEGISLATION||MEDICAL CODE OF ETHICS||LIBRARIANS CODE OF ETHICS|
Titre II Le médecin au service du patient (art. 27-33)
III De la informació (art. 22-28)
Dels serveis als usuaris (art. 7-11)
Le bibliothécaire est chargé par sa collectivité
de répondre aux besoins de la communauté en matière de culture, dinformation, de formation et de loisirs.
Titolo III Rapporti con il cittadino (art. 20-57)
1. Doveri verso lutente (art. 1.1-1.7)
III Relaciones del médico con sus pacientes (art. 7-13)
III Le médecin et le patient (art. 4-18)
10 Changes for patients
Relationships with patients (art. 20-40)
Ethical principles for library and information professionals
Table 2. Extracts from these documents referring to patients right to information.
Received: 03/06/2008. Accepted: 15/09/2008.
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