Table 4: Palliative Care and the Right to Information

Examples of Human Rights Violations

• People are denied information about: hospice and palliative care services; pain management; and their diagnosis and prognosis.

Human Rights Standards Treaty Body Interpretation
ICESCR 12(1) The States Parties to the present Covenant recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health. CESCR General Comment 14: Health care accessibility “includes the right to seek, receive and impart information and ideas concerning health issues.” Para. 12(b)(iv), (2000).

Other Interpretations

SR Health: The Special Rapporteur is of the view that a holistic approach to health should also address the process of dying. While this report does not consider issues of patient autonomy in respect of deciding to end life, it is nonetheless necessary to ensure that patients be able to make autonomous, informed decisions regarding the quality of health during the process of dying. That includes choices about access to adequate pain relief and other necessary interventions, location of death, and the ability to refuse treatment designed to prolong life when it is not desired by the patient. This requires clear, candid and non-judgmental discussion with medical practitioners, who should be adequately trained to deal with these delicate issues in order to enable older persons to “die with dignity”, as required from a human rights prospective. A/HRC/18/37 (July 4, 2011).

The European Charter of Patients’ Rights, Art. 3: “Every individual has the right of access to all kinds of information regarding their state of health and health services and how to use them, and all that scientific research and technological innovation makes available.”

The Declaration on the Promotion of Patients’ Rights in Europe: Art. 2.2: “Patients have the right to be fully informed about their health status, including the medical facts about their conditions; about the proposed medical procedures, together with potential risks and benefits of each procedure; about alternatives to the proposed procedures, including the effect of non-treatment; and about the diagnosis, prognosis, and progress of treatment.”

European Convention on Human Rights and Biomedicine, art 10(2): “Everyone has the right to know any information collected about his or her health.” See also Explanatory Report, para. 65-70 (providing interpretation of rights to private life and information contained in Art. 10 (2).