Key points

While each European Member State might have regulated them in more detail, the general principles underpinning core patients' rights are:

1. Right to informed consent:

   This right refers to the fact that any medical treatment may only be carried out after a patient has been informed of the purpose, nature, risks, and consequences of the intervention and has freely consented to it. This right is related to the principle of self-determination, i.e., the idea that everyone should be able to freely decide for his/her health. However, to do this, it is necessary to be duly informed. As a minimum, the information provided should include the purpose and nature of the intervention as well as its consequences and risks. In addition to this, the information must be provided in a way that makes it easy to be understood. National legislative provision in each country may have further regulated the formalities that the informed consent should have.

   The right to informed consent, in the Oviedo Convention, is related to the issue of advanced directives (or "living wills"), which are intended to communicate the wishes regarding treatment or refusal of certain kinds of treatment, in preparation for a time when the person might be unable to make medical decisions. Advanced directives are instruments aiming to protect patients' right to self-determination, even for patients who have lost the ability to make decisions. Again, formalities and legal binding of advanced directives vary from country to country.

   In those cases where the patient is unable to make decisions, but there is no legal documentation of their will, the responsibility of the physician in the care of the dying patient should be guided by the universal ethical principles of beneficence (i.e., relieving the symptoms that impair the quality of life of a dying person) and nonmaleficence (the principle of refraining from causing unnecessary harm, be it physical or psychological).

2. Right to privacy of health information:

   The sensitive nature of personal health information is generally recognized, and it is therefore universally accepted by ethical and legal standards that health care professionals have a duty of confidentiality towards their patients. It has been noted that in many countries, privacy is more protected than the right to self-determination and informed consent, due to strong data protection legislation.

   This duty of protecting the confidentiality of health information is however not absolute for health care professionals. Indeed, the Oviedo convention claims that it can be infringed to prevent harm to third persons (for instance, the spouse of a patient suffering from a serious contagious disease).

   Apart from the above, the Oviedo convention does not get into many details about privacy of health information, however, the European GDPR deals with this issue stating that personal health information constitutes a 'special category of data' that needs protection and provides specific norms about the access to personal records and how personal information can be stored and disclosed.

3. Right to know and not to know:

   Article 10.2 states that "everyone is entitled to know any information collected about his or her health." This right is connected to the right to informed consent and self-determination (i.e., that the patient is an autonomous being) because if we accept that patients have the right to take decisions about the treatments they want to be provided or not, this implies that they are entitled to receive the information that will enable them to take such decisions. The right to know is a constitutive element of the more recent vision of the relationship between healthcare professional and the patient, which is at the opposite of the previous approach that allowed the doctor to make decisions on behalf of the patient.

   The counterpart of the right to know is the right not to know. In the same article, the Convention states that "the wishes of individuals not to be so informed shall be observed". This is again underpinned by the principle of autonomy and self-determination, recognizing the intimate desire of a person not to receive potentially harmful information about his or her health status, for example because it is not curable. Similarly to the right to confidentiality, the right not to know is limited by situations where non-disclosure would pose a serious risk to someone else, for instance in the case of transmissible diseases.

Summary

Although national legislations across Europe might provide further specifications and details, there are some general principles guiding the medical practice in terms of rights and responsibilities of patients, especially in end-of-life care:

• the right to provide an informed consent
• the right to privacy
• the right to know and to not know