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European Charter of Patients’ Rights (Rome, 2002)

Drawn up in 2002 by Active Citizenship Network, a European network of civic, consumer, and patient organizations, this charter provides a clear, comprehensive statement of patient rights. This statement was part of a grassroots movement across Europe for patients to play a more active role in shaping the delivery of health services and an attempt to translate regional documents on the right to health care into specific provisions.

PREAMBLE

Despite their differences, national health systems in European Union countries place the same rights of patients, consumers, users, family members, weak populations and ordinary people at risk. Despite solemn declarations on the “European Social Model” (the right to universal access to healthcare), several constraints call the reality of this right into question.

As European citizens, we do not accept that rights can be affirmed in theory, but then denied in practice, because of financial limits. Financial constraints, however justified, cannot legitimize denying or compromising patients’ rights. We do not accept that these rights can be established bylaw, but then left not respected, asserted in electoral programmes, but then forgotten after the arrival of a new government.

The Nice Charter of Fundamental Rights will soon be part of the new European constitution. It is the basis of the declaration of the fourteen concrete patients’ rights currently at risk: the right to preventive measures, access, information, consent, free choice, privacy and confidentiality, respect of patients’ time, observance of quality standards, safety, innovation, avoidance of unnecessary suffering and pain and personalised treatment, and the right to complain and to receive compensation. These rights are also linked to several international declarations and recommendations, issued by both the WHO and the Council of Europe. They regard organizational standards and technical parameters, as well as professional patterns and behaviour.

Each of the national health systems of the EU countries manifests quite different realities with respect to patients’ rights. Some systems may have patients’ rights charters, specific laws, administrative regulations, charters of services, bodies such as ombudspersons, procedures like alternative dispute resolution, etc. Others may have none of these. In any case, the present Charter can reinforce the degree of protection of patients/citizens’ rights in the different national contexts, and can be a tool for the harmonisation of national health systems that favours citizens’ and patients’ rights. This is of the utmost importance, especially because of the freedom of movement within the EU and the enlargement process.

The Charter is submitted for consideration by civil society, national and EU institutions, and every one who is able to contribute, by actions and omissions, to the protection or the undermining of these rights. Because of its connection to the present European reality, and to trends in health care, the Charter may be submitted to future reviews and will evolve over time. The implementation of the Charter shall be primarily entrusted to those active citizenship organisations working on patients’ rights at national level. It will also require the commitment of health care professionals, as well as managers, governments, legislatures and administrative bodies.

PART ONE: Fundamental Rights

1. The EU Charter of Fundamental Rights

• The Charter of Fundamental Rights, which will represent the first “brick” in the European constitution, is the main reference point of the present Charter. It affirms a series of inalienable, universal rights, which EU organs and Member States cannot limit, and individuals cannot waive. These rights transcend citizenship, attaching to a person as such. They exist even when national laws do not provide for their protection; the general articulation of these rights is enough to empower persons to claim that they be translated into concrete procedures and guarantees. According to Article 51, national laws will have to conform to the Nice Charter, but this shall not override national constitutions, which will be applied when they guarantee a higher level of protection (Article 53).

In conclusion, the particular rights set forth in the Nice Charter are to be interpreted extensively, so that an appeal to the related general principles may cover any gaps in the individual provisions.

• Article 35 of the Charter provides for a right to health protection as the “right of access to preventive health care and the right to benefit from medical treatment under the conditions established by national laws and practices”.

• Article 35 specifies that the Union must guarantee “a high level of protection of human health,” meaning health as both an individual and social good, as well as health care. This formula sets a guiding standard for the national governments: do not stop at the floor of the “minimum guaranteed standards” but aim for the highest level, notwithstanding differences in the capacity of the various systems to provide services.

• In addition to Article 35, the Charter of Fundamental Rights contains many provisions that refer either directly or indirectly to patients’ rights, and are worth recalling: the inviolability of human dignity (article 1) and the right to life (article 2); the right to the integrity of the person(article 3); the right to security (article 6); the right to the protection of personal data (article 8); the right to non-discrimination (article 21); the right to cultural, religious and linguistic diversity (article22); the rights of the child (article 24); the rights of the elderly (article 25); the right to fair and just working conditions (article 31); the right to social security and social assistance (article 34); the right to environmental protection (article 37); the right to consumer protection (article 38); the freedom of movement and of residence (article 45).

2. Other international references

The fourteen rights illustrated below are also linked to other international documents and declarations, emanating in particular from the WHO and the Council of Europe. As regards the WHO, the most relevant documents are the following:

• The Declaration on the Promotion of Patients’ Rights in Europe, endorsed in Amsterdam in1994;
• The Ljubljana Charter on Reforming Health Care, endorsed in 1996;
• The Jakarta Declaration on Health Promotion into the 21st Century, endorsed in 1997.

As regards the Council of Europe, one must recall in particular the 1997 Convention on Human Rights and Biomedicine, as well as Recommendation Rec(2000)5 for the development of institutions for citizen and patient participation in the decision-making process affecting health care. All these documents consider citizens’ health care rights to derive from fundamental rights and they form, therefore, part of the same process as the present Charter.


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