PATIENTS’ RIGHTS IN EUROPE: A CITIZENS’ REPORT
MONITORING THE EUROPEAN CHARTER OF PATIENTS’ RIGHTS

The conference was held on 28th February and 1st March 2005 at the European Parliament in Brussels and was attended by 150 participants who were policy makers, doctors and representatives of patients’ rights groups from several European countries such as Italy, UK, Poland, Greece, Cyprus, Malta, etc. NCW Malta was represented by Vice-President Doreen Micallef, Health Committee co-ordinator
In 2002, Active Citizenship Network (ACN) together with national-based civic organizations from around Europe produced a European Charter of Patients’ Rights, setting forth 14 rights to be respected by health care providers. The rationale for the charter is that, despite national differences, the same rights related to health are at risk in EU countries. These rights are based on the European Union Charter of Fundamental Rights, which is now part of the European Constitution and establishes the right to a high level of protection for health and other rights related to health care. In September 2003, the Charter was presented in a meeting of the Ministries of Health throughout Europe.
For these reasons, ACN and civic organizations from the 15 old Member States of the EU decided to monitor the concrete inplementation of these 14 rights in order to provide a more accurate picture of the actual conditions regarding citizens’ access to healthcare.
The 14 rights are the following:

1. Right to preventive measures – every individual has the right to a proper service in order to prevent illness.

2. Right to access – every individual has the right of access to the health services that his/her health needs require. The health services must guarantee equal access to everyone, without discriminating on the basis of financial resources, place of residence, kind of illness or time of access to services.

3. Right to information – every individual has the right to access to all information regarding their state of health, the health services and how to use them, and all that scientific research and technological innovation makes available.

4. Right to consent – every individual has the right to access to all information that might enable him or her to actively participate in the decisions regarding his/her health; this information is a prerequisite for any procedure and treatment, including the participation in scientific research.

5. Right to free choice – each individual has the right to freely choose from among different treatment procedures and providers on the basis of adequate information.

6. Right to privacy and confidentiality – every individual has the right to the confidentiality of personal information, including information regarding his/her state of health and potential diagnostic or therapeutic procedures, as well as the protection of his/her privacy during the performance of diagnostic exams, specialist visits and medical/surgical treatments in general.

7. Right to respect of patients’ time – each individual has the right to receive necessary treatment within a swift and predetermined period of time. This right applies at each phase of the treatment.

8. Right to the observance of quality standards – each individual has the right of access to high quality health services on the basis of the specification and observance of precise standards.

9. Right to safety – each individual has the right to be free from harm caused by the poor functioning of health services, medical malpractice and errors, and the right of access to health services and treatments that meet high safety standards.

10. Right to innovation – each individual has the right of access to innovative procedures, including diagnostic procedures, according to international standards and independently of economic or financial considerations.

11. Right to avoid unnecessary suffering and pain – each individual has the right to avoid as much suffering and pain as possible, in each phase of his/her illness.

12. Right to personalized treatment – each individual has the right to diagnostic or therapeutic programmes tailored as much as possible to his/her personal needs.

13. Right to complain – each individual has the right to complain whenever s/he suffered a harm and the right to receive a response or other feedback.

14. Right to compensation – each individual has the right to receive sufficient compensation within a reasonably short time whenever s/he has suffered physical or moral and psychological harm caused by a health service treatment.

Despite their differences, national health systems in EU 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 health care), several constraints call the reality of this right into question.
The Nice Charter of Fundamental Rights will soon be part of the new European constitution. It is the basis of the declaration of the 14 concrete patients’ rights currently at risk. 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 resolutions, etc. Others may have none of these. 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 harmonization of national health systems that favours citizens’ and patients’ rights. This is of utmost importance, especially because of the freedom of movement within the EU and the enlargement process.
The implementation of the Charter shall be primarily entrusted to those active citizenship organizations 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.

Survey to monitor the concrete implementation of the 14 rights

The survey was conducted in 13 out of the 15 ‘old’ EU member countries (no data was collected in Belgium and Luxembourg). The survey consisted in defining a set of some 160 indicators relating to the 14 patients’ rights. On this occasion, Civic Audit tools were applied. The survey was carried out in cooperation with 13 national-based citizens’ organizations; about 70 key persons were interviewed and 39 hospitals visited.
The main phenomena emerging from the analysis of the indicators of patients’ rights are the following:
1. The involvement of hospitals in primary and secondary prevention activities is in general very low. The availability of materials on prevention is very limited in most of the hospitals observed in 10 out of 13 countries.
2. In a of the countries the existence of groups of people not covered by national health services or confronting obstacles limiting their access to adequate care was reported. A satisfactory widespread availability of facilities for public access to hospitals emerged in 11 countries; accessibility for persons with disabilities that are clearly marked was reported only in 8 countries.
3. In most of the countries’ hospitals the existence of tools for the information of patients and users were reported (telephone numbers, information office, etc.). However, material regarding critical topics (waiting lists, complaints received, patients’ satisfaction, etc.) is the least diffused. Areas reserved to patients’ and citizens’ associations inside hospitals have been reported only in 6 out of 13 countries.
4. Standardised forms for gathering consent are widely diffused but are used more for scientific research rather than for invasive diagnostic exams and surgical operations.
5. Some limitations to citizens’ choices emerged in the majority of the 13 countries, e.g. need to get authorization for some treatments; different fees in public and private hospitals, etc.
6. The survey reported a limited number of single rooms available for terminal patients in hospitals but examination rooms with dividers or curtains are quite widespread. Also in 7 out of 13 countries, situations when medical information was disclosed to non-authorised persons were reported.
7. There is a widespread phenomenon of freezing waiting lists for 1 or more exams, which represents a hidden form of restricting the access to health care. Moreover, there does not exist an established time limit to receive diagnostic exams or therapeutic treatment from the time it was prescribed by the hospital doctor.
8. The most widespread form of quality assessment is studies on customer satisfaction which are the least complex way to improve and check quality.
9. A fairly structured practice aimed at reducing the risk of adverse events has emerged in the majority of countries. Nevertheless, cases of violation of the right to safety in the last year have been reported in 8 countries. In only 1 country, special evacuation procedures for wheelchair routes were observed; evacuation maps were observed in hospitals of only 6 countries.
10. While in some central and big structures innovative technologies are currently used, in the rest of the country the level of their diffusion is definitely low. Delays in introducing innovative treatments and in medical research were reported in several cases.
11. In about half of the countries surveyed, cases of violation of the right to avoid unnecessary suffering were reported, e.g. lack of administering painkillers or morphine even when international standards recommended their use.
12. In only half of the countries there emerged a widespread and structured engagement in delivering health treatments according to different individual, social and cultural needs.
13. In all 13 countries there exists a structured procedure aimed at receiving and processing citizens’ complaints. In 12 countries there were reported cases of taking too long a time to respond to citizens’ complaints, while in 2 countries a complete lack of response to citizens’ complaints was reported.
14. In almost all of the countries there are insurances covering the compensation for possible damages to patients. However, they do not always cover both provider and doctor but usually just one of the two. In 2 countries hospitals and doctors do not have any insurance.

Policy priorities

On the basis of the results of the survey, the following 7 priorities have been identified:

1. Patients’ rights must become a common point of view and a standard for making decisions on health care.
2. Existing data and information on health care at the European level should be enriched with that regarding patients’ rights.
3. A European agenda on patients’ rights should be set up and implemented with an appropriate plan of action.
4. The practice of the ‘Rights of Active Citizenship’ stated in the European Charter of Patients’ Rights should be supported and guaranteed in the whole EU.
5. The financing of health structures by governments and other payers must be conditional to the success of these structures in protecting patients’ rights.
6. Firm action towards the changing of cultural, professional and organizational models in health care must be taken.
7. A patients’ right-based approach is needed to deal with the new trends and emerging situations that are going to characterize the European health care scenario.