Are patients' rights human rights?
Gonzalo Herranz, department de Humanities Biomedicas, University of Navarra.
lecture delivered at a congress in Lecce, 1998.
pathway historical patients' rights
Diversity of origin and diversity of content
Examination of three documentssubject
The increasing diversification of rights
The difficult enforceability of patients' rights
Every year, when I discuss with my fourth-year medical students what patients' rights are and how doctors should respect them, I use a powerful and instructive anecdote. I want to leave them marked, sensitised, for their professional life.
meeting I will tell you in detail what André Frossard, in one of his books on John Paul II, relates about the Pope's meeting with his doctors1 in the summer of 1981. The Holy Father had just overcome the cytomegalovirus infection that had complicated his convalescence after the attack of 13 May. The doctors were in favour of allowing a couple of months to pass before proceeding, once the Pope was fully recovered, to close his colostomy in October. The Pope, who had been informed in detail about his clinic and the nature of the operation, and who subjectively felt healthy and strong, wanted to meet with his doctors. He spoke to them at length about the relationship between doctors and patients. He added: 'Non dimenticate che si voi sieti i medici, io sono il malato, e che devo mettervi a parte dei miei problemi di malato, sopratutto di questo: non vorrei ritornare in Vaticano se non completamente guarito; non so che cosa ne pensiate voi, ma da parte mia me sento benissimo [...]. Mi sento assolutamente in di sopportare una nuova operazione". He asked the doctors to consider, in the light of what he had told them, whether it was necessary to postpone the operation for two months. The Holy Father said, in conclusion: "Per tutta la mia vita ho diffeso i diritti dell'oumo. Oggi, l'uomo sono io". As we all know, the operation was carried out immediately. status Degree
I believe that the anecdote highlights the human dignity of the patient, his status as a man capable of dialogue with the doctor. This story highlights in a unique way how the relationship between patients and doctors is two-way and equal, in which doctors and patients exchange information, get to know each other as persons, negotiate agreements, and elevate each other to the status of ethically mature and responsible beings. The physician/patient relationship is a relationship between active moral agents.
Above all, as far as we are concerned today, the Pope clearly pronounces himself in favour of the thesis that being ill does not suspend the ownership of human rights. "Per tutta la mia vita ho diffeso i diritti dell'oumo. Oggi, l'uomo sono io". The man today was a patient who spoke to his doctors. And he did so in defence of human rights. This idea brings the rights of man closer to the rights of the patient.
Let us take this idea as a starting point. The relationship between doctors and patients is a relationship that is protected by special human rights: the rights of the patient.
I am not going to deal with the issue from a technical-legal point of view, but from a medical-ethical perspective, for that is my observation post. I do not want to enter into the question which, with inevitable tenacity, asks whether patients' rights are juridical or merely moral, or a heterogeneous mixture of them; whether they are partly binding and partly only supererogatory; and whether, in order to be strong and enforceable, they have to be received in a positive law.
In my opinion, the true rights of patients, the rights that protect the dignity of man in the precarious status of falling ill, are imposed by the laws of humanity. They are universal: their holders are all sick people who enter into a relationship with the doctor, they are enjoyed by the fact that the sick person is a human being, they are inscribed in the very nature of the doctor/patient relationship, they repel any subject of exclusionary discrimination.
However, the thesis equating patients' rights with human rights is debatable and not accepted by all, because today the so-called rights of the sick form a heterogeneous whole, in which justified claims, utopian aspirations and capricious demands are intermingled. But I think it is worthwhile to raise this thesis in a forum where doctors and lawyers meet, to try to find objections and verifications, and also to provide answers to the question of which of the patients' rights that circulate in Charters and Declarations are human rights and which are not.
To this end, I will first refer to the historical pathway of patients' rights, and then consider, in the light of some documents, the general types of rights contained therein. This analysis leads to the conclusion that patients' rights form a heterogeneous whole, within which a fundamental core can be identified, which is nothing other than the application to the sick human being of fundamental human rights, together with other rights that do not seem to have this status. The same analysis sample shows that, in this basic core, some essential rights are missing.
pathway historical patients' rights 
The official version of the facts is this: Until not so long ago, the doctor/patient relationship was basically governed by the rules of the old professional ethics and was based on the patient's trust in the paternalistic figure of his doctor. Today this is no longer the case: this relationship has taken on a contractual character, it appears to be legally oriented, and the concept of the autonomy of the patient who negotiates the decision to be taken with the doctor seems to dominate. Regulation based on criteria dictated unilaterally by doctors is no longer acceptable, nor is it acceptable for doctors to continue to maintain a dominant role in the doctor/patient relationship. The patients' rights movement emerged to end the status of patient dependency and the traditional imbalance of power in that relationship.
It is often claimed that patients' rights have their remote origin in the United Nations Universal Declaration of Human Rights and the documents developing it2. It seems to me that, in the Catholic tradition, one can find distant antecedents to them. Indeed, the idea that the patient, not being the absolute master of himself but only the administrator of his life and body, is invested with the responsibility of being the guardian of his own human dignity and the power to authorise or refuse the interventions that the doctor proposes to make on his body appears repeatedly in the old manuals of medical morality of the first decades of our century.
However, it was only at the end of the 1960s, the years of the struggle for civil liberties, of the movements for the rights of the weak, of the contestation of all authoritarianism, of the conquest of guarantees in hitherto unregulated or precariously regulated areas, among which the then asymmetrical relations between doctors and patients, and especially between the latter and hospitals, could not be left out3 , that we began to talk about patients' rights properly speaking.
It began, unsurprisingly, in the United States, at the initiative of an organisation that sought to transfer to the field of rights what was being done in some hospitals as a charity for the protection of the underprivileged4. The National Welfare Rights Organisation drew up a list of rights for patients in public and private hospitals who voluntarily wished to join proposal, in which different manifestations of the patients' right to receive a dignified attention were enshrined, as it was common at that time for poor patients to be admitted to wards with many beds, diagnosed and treated by young resident doctors or students, and forced to participate in clinical experiments or teaching sessions.
The National Welfare Rights Organisation's list of rights was offered to the Joint Commission on the Accreditation of Hospitals, a semi-public body that sought to improve the quality of health care institutions. The Commission sensed the great significance of the initiative and adopted it, with modifications, in 1970 as a requirement for granting accreditation to hospitals. The breakthrough came in 1973, when the American Hospitals Association enacted the Patient's Bill of Rights: this charter changed the aspirations of poor patients into the rights of consumers of medical services. Thanks to this mutation, it could become the great vehicle for a new mentality all over the world.
It is not easy to summarise the history of the spread and content of the patients' rights movement. Initial resistance gave way to more or less enthusiastic support in more recent times. Lists of rights have undergone a process of expansion B , the future trend of which is not easy to guess. For some, the process seems to have reached its maximum limit and must in future be devoted to securing for all a common core of basic rights5. partner For others, it is inevitable that, with the passage of time and the emergence of new technologies and new economic situations, new developments and enrichments of these rights will take place over time6 .
Today, there are already countless and very polymorphous documents (Declarations, Charters, Laws) proclaiming patients' rights. Issued by various institutions, they are addressed to a universal, regional or national audience. Their content varies: some are mere lists of rights, while others are complex documents, which devote attention to questions of substantiation and legitimacy. Many documents emanating from private entities have not gone beyond the level of simple statements of intent or, at best, proposal of recommendations. Those arising in a public context have experienced a similar fate: some have remained draft regulations that never received parliamentary approval; others have been disseminated as administrative circulars from ministries of health; still others have attained the status of law.
We cannot forget that the social dissemination of patients' rights has often been subjected to extraneous forces: rights have been used as an advertising or recruitment tool by the managers of national health services or by private hospital directors; they have been used as a dialectic weapon by doctors in their trade union demands; they have been employee against health authorities to highlight the deficiencies or dehumanisation of hospitals. They have not always been used for their original purpose: the protection of patients, the support of those weaker in resources or culture.
Patients' rights have had a chequered existence.
Diversity of origin and diversity of content
Before proceeding further, it should be noted that the data on which this analysis is based is partial and perhaps, in some cases, outdated. It is not easy to obtain complete and up-to-date information on such a dispersed and changing subject .
The patients' charters form a heterogeneous set in terms of their origin, their institutional framework , or their content.
They emanate from many different sources: political bodies, social groups, professional bodies, consumer or patients' associations. For example, at the global level, charters or declarations of patients' rights have been signed or proclaimed by the World Health Organisation and the World Medical Association association ; at the European level, by the European Parliament, the committee of Europe or the committee Permanent Medical Association of the European Union7. There is also no lack of transcontinental bodies, such as group of Toronto8 . In particular, many national governmental, professional or private bodies have published their own charters or declarations, either as finalised documents or in draft form9 .
There is no shortage of countries where legislation on subject has not been passed because legislative proposals have encountered insurmountable difficulties for the time being (Belgium, Italy, Luxembourg) or where, as is the case in Canada, the United States and Australia, it is preferred for the time being to abide by court rulings10.
The institutional framework , the scope of action, that the different patients' charters of rights assign to themselves is very diverse: some propose limited areas of action (a hospital or a network of hospitals), others are aimed at a country's entire health system, hospital and out-of-hospital; others, finally, aim for a continental or global validity.
Such a diversity of origin and scope is sufficient to explain the diversity of content of the charters. B .
And yet, over and above the differences in tone and style, one can prima facie discover in the various patients' bills of rights the coexistence of a common, ubiquitous and universally shared block of basic rights, alongside another, particularising block, made up of accidental, differentiating, special rights. As we shall see, this distinction is essential to elucidate the problem at hand: whether or not patients' rights, or rather, whether or not some of the patients' rights are genuine human rights.
The differentiation between basic rights and special rights was already present in the original American Hospital Association Charter of 1973. In the extensive series of rights that the Charter granted, the rights to receive a respectful attention , to obtain information on diagnosis and prognosis, to receive the information specifically necessary to grant informed consent, to refuse the proposed treatment, to respect the patient's privacy and to protect his or her confidentiality, and, finally, to refuse to participate in projects of research form part of the basic group .
Other rights in the 1973 Charter lack this basic, universal status. These are the rights to obtain a prompt response to requests for services, to be informed about other institutions that might provide health services, to examine and receive explanations of costs, to know the rules in force in the hospital, to be guaranteed continuity of care. In 1992, when the Charter was revised, two more rights were added which belong to this second category: to examine one's own medical history and to submit advance decisions on treatment.
When examining, from a medical-ethical perspective, accidental or differentiating rights, it does not seem unfounded, pending a more critical and comprehensive study, to distinguish, within them, two variants or modalities, which derive their character from the two different types of entities that have issued them. The first, modality , comes from non-medical bodies (consumer movements, health care organisations, the so-called health industrial complex), seems to be programmed for a context of managed medicine, and is ideologically dominated by a legal-contractualist mood. The other, modality, originating from professional medical associations, is ethico-deontological in inspiration, and seems more adapted to the pure doctor/patient relationship of private medicine. In a way, the former would correspond to what Ladd calls "ideal rights, welfare rights or manifest rights "11.
Examination of three documentssubject
As the contents of the patients' rights documents are analysed, the above-mentioned structural patron saint becomes increasingly clear: maintenance of the common core and progressive development of the associated rights in their two legal/contractual and ethical/deontological streams.
A comparison with the 1973 Charter of the American Hospital Association (hereafter the Charter) can be made between two documents that have appeared in the intervening years: on the one hand, article 10 of the Spanish General Health Law 14/1986 (hereafter article); and, on the other hand, the new version of the 1995 version of the Lisbon Declaration of the World Medical Association association on patients' rights (hereafter the Declaration).
The three documents (Charter, article and Declaration) contain a set of clauses which, with logical textual variations, refer to the same basic rights. These are: the right to a respectful and dignified attention for the patient, which excludes any discrimination; the right to be informed about the diagnosis and prognosis, so that the patient can give informed consent; the right to refuse treatment; the right to confidentiality; the right to respect for privacy staff and cultural identity; the right to refuse to participate in projects of research or teaching.
The rights not included in this common denominator show very different profiles, which seem to depend on the idiosyncrasies of the institution that confers them.
The Charter contains a number of exclusive sui generis rights, such as the right to a prompt response to requests for services, the right to examine and receive explanations of the cost accounts, the right to know the hospital's rules, the right to examine one's own medical records, and the right to make advance decisions about treatment. These exclusive and differentiating rights reveal a dominant ideology: the individualistic and untrusting ideology of the consumer, which is expressed in the control of finances, in the demand for promptness of services, and in the directive and autonomous attitude towards what is to be done. The context of the Charter is strongly influenced by the ideas of cost and performance: the patient wants to get the most for his money: he is a customer, a consumer, who needs to exercise control over his stay in hospital.
Significantly, the Charter lacks claims to universality. Historically, the tendency to confer patients' rights on patients admitted to hospital has dominated. Only more recently have rights been extended, in the UK and Ireland, to patients attending primary care services. Each of the 12 clauses of the Charter begins with the words "The patient has the right". But, consistent with the poorly supportive character of American hospital medicine, nowhere does it state categorically that the corresponding right is universal. The contrast with the other two documents is stark: article begins by stating that "Everyone has the following rights"; the Declaration states that "Everyone, without discrimination, has the right to ...).
The social and ethical context of the patient admitted to a Spanish National Health Service hospital is marked by the ideology of the welfare state, which, leaving aside a area of legitimate patient autonomy in decision-making, is articulated in predominantly juridical relations. The new right to be assigned a doctor specifically appointed for this purpose to be the main interlocutor with the complex hospital care team, of B humanising potential in the complex hospital environment, has a predominantly legal bias here. The adventitious rights granted by article tend to place the citizen -Username - in a position of dependence, of passive subject, lacking initiative, since the exercise and extension of such rights depend on the condescension of a health administration that is little less than unaffordable. Thus, the right to participate in the health management has to be exercised through a community system that has never been defined; the right to complain has to be exercised through channels established at the discretion of the hospital itself; the right to receive medicines and health products is determined by the criteria established at the time by the public administration; the right to choose a hospital, twelve years after the enactment of the article, is still at the mercy of what the health authorities decide in each case.
The most noteworthy aspect of grade, however, of article is that the rights of the Spanish patient are not exercised before the doctor, but before the different health administrations. In other words, they are not patient rights in the proper sense, but rather the rights of Username of a public service. As a reflection of this circumstance, one fact suffices: in this extensive article, the word doctor is used on four occasions; the word patient, only twice.
The Declaration is, in its origin and mentality, a document strongly influenced by the professional ethics of physicians. It deals in depth with the relationship between physicians and patients, as its purpose is to show "the principal rights of the patient that the medical profession upholds and promotes". The contrast with the Spanish article is stark: the word doctor(s) is cited 24 times, the word patient(s) 51 times.
The Declaration recognises that, in real life, there may be contrasts between what physicians say in the Declaration and the legal practice of governments. The ethical superiority of the profession vis-à-vis governments and institutions is made clear: "where legislation, governmental or other institutional decisions deny such rights to the patient, physicians should take appropriate steps to secure or restore them".
The Declaration includes rights that are not present in the article, but which have, however, more or less remote antecedents in the Charter: the right to be treated by a physician whom he or she knows can make clinical and ethical decisions freely and without outside interference (the Charter notes that the patient has the right to ask questions and to be informed of conflicts of interest, no small matter in the complex financial system of American medicine); the right to be informed of the hospital's policy regarding the rationing of health services (the Charter speaks vaguely of patients being aware of the hospital's obligation to be reasonably efficient and equitable in providing care to other patients and to the community); the right to be informed of the hospital's policy regarding the rationing of health services (the Charter speaks vaguely of patients being aware of the hospital's obligation to be reasonably efficient and equitable in providing care to other patients and to the community); the right to apply for the opinion of another physician at any time; the right not to be informed of one's illness, if expressly requested, which right must be respected unless the protection of another person's life requires otherwise; the patient then has the right to designate who should be informed in his or her place. Finally, the Declaration contains basic rights that are surprisingly missing from article and also from the Charter: the right, as a manifestation of respect for his dignity, to receive treatment that will alleviate his suffering, in particular through humane terminal care, and the right to receive, or to refuse, religious care.
The asymmetry between the Declaration and article increases if we look at the rules of the latter that are not present in the former, among which the most notable are the rights, alien to the individualistic mentality, to obtain free of charge the medicines and health products considered necessary to promote, conserve or restore their health or to be informed of the services of the national health system to which they can have access, and of the requirements necessary for their enjoyment.
The increasing diversification of rights
The most recent developments in patients' rights documents sample tend to grow, either by adding new rights or by expanding and developing the contents and scope of existing rights. We can therefore speak of second-generation rights.
The following enumeration of new or extended old rights will suffice as a demonstration: the right to be referred to a specialist and to obtain a second opinion in or outside the hospital; the right to file complaints and to receive a satisfactory response within a reasonable time; the right to have access to a patient's advocate (ombudsman), who will enlighten them about their rights and see that the rights are promoted and observed; the right to receive or refuse visits from relatives or friends; the right to participate in the decision to be transferred to another care institution; the right to inspect one's own medical records and to obtain a copy of a copy of the medical records of one's relatives or friends; the right to receive a copy of one's own medical records and to obtain a copy of the records of one's relatives or friends; the right to participate in the decision to be transferred to another care institution; the right to inspect one's own medical records and to obtain a copy of them; the right to confidentiality about the very fact of having been admitted to the hospital Some charters of rights make the existence of hospital committees on complaints, quality control and improvement, ethics, and research mandatory. Occasionally, the wording of the rights is so indeterminate that it is difficult to know what they mean, such as the right to a certain level of quality of care or the right to receive information about nearby health care resources, the quality of their services and deadline waiting times.
The World Health Organisation, for its part, is considering the possibility of including among patients' rights that of "receiving factual and demonstrable information about medicines, so that patients can decide whether or not they wish to receive such treatment". But it is not easy to enforce patients' rights against the powerful pharmaceutical industry13.
Very prudently, the British Patient's Charter9 has chosen to add to the ten rights it enshrines a separate set of nine promises that the National Health System makes to patients as a sign of goodwill. These are, for example, maximum waiting times for emergency care, for ambulance services, for primary care consultations or elective surgery, respect for privacy, dignity and religious and cultural beliefs, information to relatives and friends, post-hospitalisation care, etc.
The difficult enforceability of patients' rights
But there is reason to suspect that many rights proclaimed in charters remain empty promises. There is therefore a felt need to establish mechanisms for patients to claim them14 , incorporating rules in charters to make the existence of these rights more public, their enforcement more enforceable, and complaints more effective when they are flouted. Some have argued that neglecting to protect rights is a serious violation of those same rights12. This may be due, in large part, to the fact that the task of monitoring and control has too often been placed in the hands of hospital management. As early as 1973, when the first Charter was published, Gaylin drew attention to the fact that assigning the process of implementing patients' rights to physicians was inane, as it amounted to "giving a thief a lesson in self-defence to his own victim after plundering him "15.
After a past of oblivion or withdrawal, some attention is beginning to be paid to this issue, but little progress seems to have been made. The agreement on Human Rights and Biomedicine of the committee of Europe7 is quick to point out in its article 1 that "each Party shall take the necessary measures in its domestic legislation to implement the provisions of this agreement". But so far, none of the signatory countries of agreement has taken action. The Israeli Patients' Rights Law obliges hospitals to designate a person who, in addition to advising patients and physicians on subject, handles, investigates and resolves patients' complaints9 , but this person is appointed by the director and reports to him or her. report The Declaration on the Promotion of Patients' Rights in Europe7 of the World Health Organisation's Regional Office for Europe notes the obligation to put in place "mechanisms to ensure, where necessary, financial aid and advocacy on behalf of patients, as they have the right to have their complaints considered and dealt with seriously, fairly, effectively and promptly, and to be informed about the decision taken". The right to a prompt resolution of complaints arising from the infringement of patients' rights occupies a considerable part of the current law in Finland16 ; in the Patients' Charter in Great Britain, with various nuances in England, Scotland and Wales17 , the Charter of Rights in Ireland also contains this right.
The intervention of a patient advocate, which is particularly necessary in an environment of internship dominated by financial interests,5 is particularly strongly invoked in the American project of national patients' rights law.
Conclusion
The conclusion I can draw from the above is this: genuine patients' rights, those that respect their human dignity, are real human rights, applied to the special and privileged status of the sick person who asks financial aid to the doctor. They need to be clothed in a legal-legal tunic, which exposes them to the risks of political manipulation and to the exaggerations of the claim movements.
Stripped of the litter of adventitious rights, the core of the patient's basic rights possesses a wonderful moral force, which comes from being true and genuine human rights. For, ethical respect for the sick person includes, beyond the common and basic human rights, a supplement of rights that are based on the radical fact of the patient's weakness, on his or her position of neediness. This was very clearly expressed by the French National Consultative Ethics committee 18 , when in one of its opinions, it states that "[the sick] are human beings, who are all the more entitled to the respect due to the human person, the greater the fragility of the state in which they find themselves".
Patients' rights are the modern and somewhat impoverished formulation of the basic fact of medicine. Illness is always, to a greater or lesser extent, a crisis of human life, of being a subject, which drags us down and subjects us to test our human condition. It is in this crisis of humanity that the ethics and responsibility of medicine, which have never been doubted in the Western medical-ethical tradition, are founded. As Vogelsanger19 points out, the threat to the patient's humanity that is illness itself awakens a particular responsibility in the healthy person, which leads him or her to assist the patient with all available means. The representative of this responsibility and this service, the one who acts on behalf of and on behalf of mankind, is the doctor.
This is probably the root of patients' rights: because of their weakness, patients have a special dignity degree scroll , which is reflected in the specific dignity of the medical profession. The privileges that doctors receive from society are precisely at the service of their attendance to the suffering, they are a human and humanising financial aid response to the threat to man that is illness.
And yet, patients' rights do not seem to connect with that origin today, they do not arouse in most doctors a lively and committed attachment; they have not provoked in society a protective movement of energy comparable to that which, for example, has arisen around the human rights of the victims of political repression: there is no Amnesty International parallel in the field of patients' rights.
It is therefore worth asking: Why is the attitude of these doctors towards patients' rights so soft, not to say cynical? For me, the answer to this question lies in the fracture that has occurred in the attitude of absolute respect for human life, for all human beings, in the Christian tradition of medicine. It is not possible to live in ethical integrity when one accepts, in the professional internship of medicine, as well as in the conscience staff of many doctors, the paradox that some human beings, the weakest ones precisely, can be legally deprived of their rights and subjected to destruction or to withdrawal.
In advanced societies, the fact of being ill or weak no longer confers per se a legal status of intangible dignity; it is no longer a solid basis for certain aspirations to be satisfied by others. Today, with the post-modern rejection of all moral absolutes, discrimination on the grounds of age, illness Genetics, inability to pay or terminal status is accepted as internship correct.
This is no exaggeration: the drafters of the, by so many titles, magnificent UNESCO Declaration on the Human Genome and Human Rights were reluctant to point out who are the holders of the rights that the Declaration enshrines. By omission, it neglects those who are not yet born, because it is considered acceptable that only after birth can human rights be acquired.
reference letter In none of the documents I have examined is there any mention of the profoundly human right to have defects, to be installed in a deficient humanity, and, precisely for this reason, to be respected. I would like to see enshrined in a charter of patients' rights, alongside this very human right, three other rights in which respect for the patient's dignity is critically condensed: the right never to be deliberately misled by doctors or health institutions; the right to be informed by doctors with humble sincerity of the mistakes made, so that they can forgive them and cooperate in preventing them from being made again; the right of the patient to be recognised as an adult moral agent.
Patients' rights are barely 25 years old. History will help to separate the genuine from the spurious. I am sure that they will gradually permeate patients' relationships with doctors and hospitals. And that they will eventually be recognised and observed. Because one day we will be able to say: Oggi, l'uomo sono io.
Notes
(1) Frossard A. "Non abbiate paura!". 5th ed. Rusconi. Roma, 1993: 277-320.
(2) United Nations General Assembly. Universal Declaration of Human Rights. 1948. article 25 states that "Everyone has the right to a standard of living adequate for the life and well-being of himself and his family, including food, clothing, housing and necessary medical and social services...". In their wake, similar rights are enshrined in the UN Declarations on the Rights of Mentally Retarded Persons (1971), of the Child (1959, 1989), and in many others, which are listed at length, for example, in the preamble of the UNESCO Universal Declaration on the Human Genome and Human Rights (1997). UNESCO.
(3) Annas GJ. Origin and nature of patients' rights. In: Reich WT, ed., Encyclopedia of Bioethics. Revised edition. Macmillan. New York, 1995:1925-1927.
(4) Rothman DJ. Strangers at the bedside. A history of how law and bioethics transformed medical decision making. New York; Basic Books, 1991:145-147.
(5) Annas GJ. A National Bill of Patients' Rights. N Engl J Med 1998;338:695-699.
(6) Leenen HJJ, Gevers JKM, Pinet G. The Rights of Patients in Europe. A comparative Study. Kluwer. Deventer, 1993: 183-189.
(7) The World Health Organization, through its Regional Office for Europe, in its Declaration on the Promotion of Patients' Rights in Europe, published (1994) an extensive text that could help develop national standards at subject (World Health Organization, Regional Office for Europe. A Declaration on the promotion of patients' rights in Europe. Copenhagen. The Office, 1994).
UNESCO promulgated its long-awaited Declaration on the Human Genome in December 1997 (United Nations Educational, Scientific and Cultural Organisation Education. Universal Declaration on the Human Genome and Human Rights. 1997. UNESCO, Paris). But the declaration is not, contrary to widespread opinion, a document on patients' rights. Only in its article 17 it refers for the only time to "individuals, families or population groups who are particularly vulnerable to, or affected by, disease or disability of a genetic character, in order to invite states to respect them and promote the internship of solidarity towards them".
The European Parliament, in several of its Resolutions, has dealt with the rights of certain patients (hospitalised children, midwives) within the framework of its planned European Charter of Patients' Rights, 1984. (Parlemant Européen. Résolution sue une charte européenne des droits du patient. Jounal officiel des Communautés européennes, 20.2.1984, C 46/104). But years have passed, and the project does not become a legal rule .
The committee of Europe, based on its particular vocation to safeguard and promote human rights and fundamental freedoms, has completed its series of Recommendations of its committee of Ministers and its Parliamentary Assembly (Conseil de l'Europe. Recommandations adoptées par le committee des Ministres et l'Assemblée palementaire du Conseil de l'Europe sur les problèmes de bioéthique. Directions des affaires juridiques, Conseil de l'Europe. Strasbourg 1989), with the agreement on Human Rights and Biomedicine (Conseil de l'Europe. Convention pour la protection des Droits de l'Homme et de la dignité de l'être humain à l'égard des applications de la biologie et de la médecine. Council of Europe. Strasbourg 1997).
association The World Medical Association in its 1981 Lisbon Declaration, radically enriched at its Assembly in Bali (Indonesia) in 1995 (World Medical Association. Handbook of Declarations. Declaration of Lisbon on the Rights of the Patient (as amended by the 47th General Assembly, Bali, Indonesia, September 1995). Ferney-Voltaire. The Association, 1995).
The committee Standing Committee of European Doctors, in its Resolution on the Hospital Patient Charter, adopted in Dublin in 1980 (Standing Committee of European Doctors. Handbook of Policy Statements 1959-1995. Brussels. The Committee, 1995:72).
(8) The Toronto group , which brings together the National Medical Associations of 11 countries (Canada, Denmark, Finland, Iceland, Ireland, Jamaica, Netherlands, New Zealand, Norway, Sweden, United Kingdom and United Kingdom) has been very active in this field and has prepared an analysis model for the preparation of a charter of patients' rights (Royal Dutch Medical Association. Patients' Rights in the Countries of the Toronto Group. Utrecht. The Association, 1993).
(9) National bodies do not lag behind international bodies in issuing charters and declarations. They have been issued by parliaments, governments and ministries of health. Legal texts are available in countries such as:
Spain (Ley 14/1986, de 25 de abril, General de Sanidad, Art. 10 and 11, bulletin Oficial del Estado, 29 April 1986);
Finland (English translation: Act on the Status and Rights of Patients, Bull Med Ethics 1992 (84):8-11;
France (Ministère de la Santé. La Charte du Malade Hospitalisé. Note d'Information 104. Division de la Presse et de l'Information, Paris, 1974);
Ireland (Irish Department of Health. A Charter of Rights for Hospital Patients. Putting the Patient First. The Department, undated;
Israel (Israel Medical Association, Central Committee. Patient's Rights Act, 1996, Ramat-Gan, 1996);
The Netherlands, where, in 1995, a new chapter has been introduced in the Civil Code to regulate the rights of patients and doctors (Sluyters B. New standards in patients' rights. Eur Hosp Manag J 1997;4(3):21-23), which replaces the Regulation model of the doctor-patient relationship, published jointly by the Royal Dutch Society of Doctors and the Consumer Platform in 1990 (Koninklijke Nederlandsche Maatschappij tot bevordering der Geneeskunst-Landelijk patiënten-consumenten Platform. Model Doctor/Patient Regulation. Utrechst, no date);
United Kingdom, where in 1991, three important new rights were added to the seven existing rights of the patient before the National Health Service as of 1 April 1992 (Department of Health. The Patient's Charter. Raising the Standard. London, HMSO 51-1003 10/91, 1991).
Switzerland, where, in the absence of a unified rules and regulations , there are cantonal charters, e.g. those of Bern (Grosse Rat des Kantons Bern, Dekret über die Rechte und Pflichten der Patientinnen und der Patienten in öffentlichen Spitälern, 1981).
(10) See on Australia: Kirby M. patients' rights - why the Australian courts have rejected 'Bolam'? J Med Ethics 1995;21:5-8. On status peculiar to the United States, see: Annas GJ. Patients' rights in managed care - exit, voice, and choice. N Eng J Med 1997:337:210-215.
(11) Ladd J. Legalism snd medical ethics. J Med Phil 1979,4.70-80.
(12) Fried C. Rights and health care. Beyond equity and efficiency. N Eng J Med 1975;293:241-245.
(13) Collier J. Patients' Rights. Lancet 1994;343:485.
(14) Dillner L. A charter with no teeth, says Labour. BMJ 1991;303.1153-1154.
(15) Gaylin W. The patient's bill of rights. Sat Rev Sci 1973;1:22 (cited by Rothman, grade 4).
(16) Kokkonen P. The new Finnish law on the status and rights of a patient. Eur J Health Law 1994;1:127-135.
(17) Stocking B. Patient's charter. New rights issue. BMJ 1991;303:1148-1149.
(18) committee Consultatif National dÉthique pour les Scieces de la Vie et de la Santé. Avis 1984-1986. Avis sur les expérimentations sur les malades en état végétatif chronique. (24 février 1986). Le committee. Paris, 1986: 17.
(19) Vogelsanger P. Die Würde des Patienten. Bull Schweiz Akad Med Wiss 1980;36:249-258.