Table 1.1 Codification of Patients’ Rights

What are the current practices in the area of patient care?

Methods for applying human rights to patient care are diverse and occur on multiple levels of government and through engagement with private actors. A common approach to incorporating human rights norms into patient care is through the development of a code or declaration of patient rights. It is important to keep in mind that this approach does not cover the full range of rights and duties that should be applied to all stakeholders in health care provision. However, developing patient rights that are based upon human rights standards and principles is an important step in delineating the rights and obligations of patients in relation to their health care providers.

Bioethics is another avenue to incorporating human rights into patient care. The definition of “bioethics” remains controversial, but generally the field covers ethical issues arising in the life sciences, medicine, and technology. Bioethics often deals with moral and ethical issues of medical and scientific research as well as approaches to dealing with epidemics. Subsumed under bioethics, too, are ethical issues arising from the relationship between patient and doctor.

When evaluating codifications of patients’ rights or bioethics, it is important to understand that they may contain some human rights principles and elements, but may not necessarily contain the full range of rights granted under human rights law.

In the table below, we provide four different codifications of patients’ rights. We provide these four to offer a picture of the different approaches that can be taken to this subject. It is interesting to note the extent to which each codification incorporates human rights principles and how each codification focuses on certain sets of rights.

1. Universal Declaration on Bioethics and Human Rights (UDBHR).35 The UDBHR was adopted by UNESCO’s General Conference on October 19, 2005. The declaration was developed by the International Bioethics Committee under UNESCO, which “follows progress in the life sciences and its applications in order to ensure respect for human dignity and freedom.”36

2. Declaration of Lisbon.37 The World Medical Association’s Declaration of Lisbon on the Rights of the Patient was created in 1981. This declaration was not created using the human rights framework. The preamble states:

While a physician should always act according to his/her conscience, and always in the best interests of the patient, equal effort must be made to guarantee patient autonomy and justice. The following Declaration represents some of the principal rights of the patient that the medical profession endorses and promotes.38

This statement expressly recognizes the rights of physicians to act according to their best medical knowledge. To this end, it is the only declaration in the table below that incorporates a provision on procedures against the patient’s will.

3. European Convention on Human Rights and Biomedicine.39 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 was adopted by the Council of Europe in 1997. This convention sets out certain basic patient rights principles, such as equitable access to health care and protection of consent, private life, and right to information.

4. European Charter of Patients’ Rights (ECPR).40 The ECPR was compiled in 2002 by Active Citizenship Network, a European network of civic, consumer, and patient organizations. This charter 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.41 Although this charter is not legally binding, a strong network of patient rights groups across Europe has successfully lobbied their national governments for recognition and adoption of rights in the charter.42 The charter has also been used as a reference point to monitor and evaluate health care systems across Europe. In September 2007, the European Economic and Social Committee (EESE) approved its own initiative opinion on patients’ rights, declaring that it “welcomes and acknowledges” the European Charter of Patients’ Rights.

Table: Codifications of patients’ rights

UHBHR (2005) Declaration of Lisbon (1981) Convention on Human Rights and Biomedicine (1997) ECPR (2002)
of Human
Article 3 – Human dignity and human rights1. Human dignity, human rights and fundamental freedoms are to be fully respected.Article 10 – Equality, justice and equityThe fundamental equality of all human beings in dignity and rights is to be respected so that they are treated justly and equitably. 10. Right to dignitya. The patient’s dignity and right to privacy shall be respected at all times in medical care and teaching, as shall his/her culture and values. Article 1 – Purpose
and objectParties to this Convention shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine.
Non-Discrimination Article 11 – Non-discrimination and non-stigmatizationNo individual or group should be discriminated against or stigmatized on any grounds, in violation of human dignity, human rights and fundamental freedoms. 1. Right to medical care of good qualitya. Every person is entitled without discrimination to appropriate medical care. Article 11 –
Non-discriminationAny form of discrimination against a person on grounds of his or her genetic heritage is prohibited.w
2 – Right of accessThe 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.
Primacy of the Patient Article 3 – Human dignity and human rights2. The interests and welfare of the individual should have priority over the sole interest of science or society. 1. Right to medical care of good qualityc. The patient shall always be treated in accordance with his/her best interests. Article 2 – Primacy of the human beingThe interests and welfare of the human being shall prevail over the sole interest of society or science.
Access to
Health Care
Article 14 – Social responsibility and health2. … progress in science and technology should advance:
(a) access to quality health care and essential medicines, especially for the health of women and children, because health is essential to life itself and must be considered to be a social and human good.
Article 3 – Equitable access to health careParties, taking into account health needs and available resources, shall take appropriate measures with a view to providing, within their jurisdiction, equitable access to health care of appropriate quality. 2 – Right of accessEvery individual has the right of access to the health services that his or her health needs require. …
UHBHR (2005) Declaration of
Lisbon (1981)
Convention on Human Rights and Biomedicine (1997) ECPR (2002)
Quality of Care 1. Right to medical care of good qualityc. … The treatment applied shall be in accordance with generally approved medical principles.d. Quality assurance should always be a part of health care. Physicians, in particular, should accept responsibility for being guardians of the quality of medical services. Article 4 – Professional standardsAny intervention in the health field, including research, must be carried out in accordance with relevant professional obligations and standards. 8 – Right to theObservance of quality standardsEach individual has the right of access to high quality health services on the basis of the specification and observance of precise standards.The right to quality health services requires that health care institutions and professionals provide satisfactory levels of technical performance, comfort and human relations …
Individual Autonomy Article 5 – Autonomy and individual responsibilityThe autonomy of persons to make decisions, while taking responsibility for those decisions and respecting the autonomy of others, is to be respected. For persons who are not capable of exercising autonomy, special measures are to be taken to protect their rights and interests. 3. Right to self-
determinationa. The patient has the right to self-determination, to make free decisions regarding himself/herself. The physician will inform the patient of the consequences of his/her decisions.
5 – Right to free choiceEach individual has the right to freely choose from among different treatment procedures and providers on the basis of adequate information.The patient has the right to decide which diagnostic exams and therapies to undergo, and which primary care doctor, specialist or hospital to use …
Information 7. Right to informationa. The patient has the right to receive information about himself/herself recorded in any of his/her medical records, and to be fully informed about his/her health status including the medical facts about his/her condition. … Article 10 – Private life and right to information2. Everyone is entitled to know any information collected about his or her health. … 3 – Right to informationEvery individual has the right to access to all kind of information regarding their state of health, the health services and how to use them, and all that scientific research and technological innovation makes available. …
Article 6 – Consent1. Any preventive, diagnostic and therapeutic medical intervention is only to be carried out with the prior, free and informed consent of the person concerned, based on adequate information … 3. Right to self-determinationb. A mentally competent adult patient has the right to give or withhold consent to any diagnostic procedure or therapy. The patient has the right to the information necessary to make his/her decisions… Article 5 – General ruleAn intervention in the health field may only be carried out after the person concerned has given free and informed consent to it … 4 – Right to consentEvery individual has the right of access to all information that might enable him or her to actively participate in the decisions regarding his or her health; this information is a prerequisite for any procedure and treatment …
Persons Who Lack Capacity
to Provide
Article 7 – Persons
without the capacity
to consentIn accordance with domestic law, special protection is to be given to persons who do not have the capacity to consent:
(a) authorization for research and medical practice should be obtained in accordance with the best interest of the person concerned and in accordance with domestic law. However, the person concerned should be involved to the greatest extent possible in the decision-making process of consent, as well as that of withdrawing consent; …
4. The unconscious patienta. If the patient is unconscious or otherwise unable to express his/her will, informed consent must be obtained whenever possible, from a legally entitled representative. …5. The legally
incompetent patienta. If a patient is a minor or otherwise legally incompetent, the consent of a legally entitled representative is required in some jurisdictions. Nevertheless the patient must be involved in the decision-making to the fullest extent allowed by his/her capacity…
Article 6 – Protection of persons not able to consent1. … an intervention may only be carried out on a person who does not have the capacity to consent, for his or her direct benefit …Article 7 – Protection of persons who have a mental disorder… a person who has a mental disorder of a serious nature may be subjected, without his or her consent, to an intervention aimed at treating his or her mental disorder only where, without such treatment, serious harm is likely to result to his or her health.Article 8 – Emergency situationArticle 9 – Previously expressed wishes 4 – Right to consentIn all circumstances which provide for a legal representative to give the informed consent, the patient, whether a minor or an adult unable to understand or to will, must still be as involved as possible in the decisions regarding him or her. The informed consent of a patient must be procured on this basis.
Privacy and Confidentiality Article 9 – Privacy and confidentialityThe privacy of the persons concerned and the confidentiality of their personal information should be respected. … 8. Right to confidentialitya. All identifiable information about a patient’s health status, medical condition, diagnosis, prognosis and treatment and all other information of a personal kind must be kept confidential, even after death. … Article 10 – Private life and right to informationEveryone has the right to respect for private life in relation to information about his or her health. 6-Right to privacy and confidentialityEvery individual has the right to the confidentiality of personal information, including information regarding his or her state of health and potential diagnostic or therapeutic procedures, as well as the protection of his or her privacy during the performance of diagnostic exams, specialist visits, and medical/surgical treatments in general. …

The European Charter of Patients’ Rights contains 14 provisions, of which only seven
are featured within the table above. The full list of provisions is:

1. Right to Preventative Measures

2. Right of Access

3. Right to Information

4. Right to Consent

5. Right to Free Choice

6. Right to Privacy and Confidentiality

7. Right to Respect Patients’ Time

8. Right to the Observance of Quality Standards

9. Right to Safety

10. Right to Innovation

11. Right to Avoid Unnecessary Suffering and Pain

12. Right to Personalized Treatment

13. Right to Complain

14. Right to Compensation