Access to Public Information
Company Doe v. Public Citizen
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The Inter-American Court found Chile violated an elderly patient’s right to access information and healthcare without discrimination, which resulted in his death. In 2001, Mr. Poblete Vilches was admitted to a hospital on two occasions where his family was not fully informed about his medical conditions, procedures were undertaken without their informed consent, and medical services were not provided due to his advanced age. The Court declared Chile violated the right to obtain an informed consent by proxy as well as the right to access healthcare information, to the detriment of Mr. Poblete and his family. Specifically, it stated that the Tribunal “understands that informed consent is an aspect of the accessibility of information” and “therefore, of the right to health (Article 26).” Accordingly, “access to information as included in Article 13 of the American Convention becomes instrumental in assuring and respecting the right to health. Therefore, the right to access information is necessary to carry out the derivation of the right included in Article 26 of the Convention, and potentially achieving other related rights.”
Between January and February of 2001 Mr. Vinicio Poblete Vilches was admitted twice to a Hospital in Santiago de Chile. On the first occasion, January 26, Poblete Vilches was admitted for severe respiratory failure, where he was hospitalized for four days in the Medical Intensive Care Unit. He was then admitted to the Surgical Intensive Care Unit, where he was kept sedated. Later, the doctor in charge told Mr. Poblete Vilches’s relatives that he was in good health but that he needed a non-invasive procedure. His relatives warned the doctor that Poblete Vilches had diabetes and therefore could not be surgically operated on. After the procedure, Mr. Poblete had three wounds on his waist and an attached drainage tube. According to the medical case file, Mrs. “Margarita Tapia” authorized the surgical procedure on behalf of “her father,” but the authorization was only a handwritten annotation, not a legal health care proxy form.
In the course of the process before the Inter-American Court of Human Rights it was determined that the alleged authorization had been falsified. Mrs. Margarita Tapia was the wife of Mr. Poblete Vilches and not the daughter. The relatives of Mr. Poblete Vilches were not provided with information before or after the surgery. On February 2, Poblete Vilches was discharged despite his delicate health condition.
Three days after he was discharged, Mr. Poblete Vilches was again admitted to the hospital where he remained in an intermediate care unit, despite the fact that his medical condition justified and his medical records recommended hospitalization in an intensive care ward. The decision to keep Mr. Poblete Vilches in intermediate care was allegedly based on a range of factors, including his advanced age and the lack of availability of hospital beds. Although Mr. Poblete Vilches needed to be put on a respirator, this was not provided. Mr. Poblete Vilches died on February 7, 2001. According to the death certificate Mr. Poblete Vilches “died of septic shock and bilateral bronchopneumonia.” However, when the Hospital called the relatives to inform them about the death of their relative, they told them he had died of cardiac arrest. Later, when Poblete Vilches’ son went to the Hospital, he was informed that his father had died from a liver failure. Finally, when the relatives went view the body, they noticed that Mr. Poblete Vilches had a tape on his chest that mentioned “pulmonary edema” as the cause of death. Consequently, relatives asked the hospital to do an autopsy, but the hospital refused to do it.
The Inter-American Court heard the case and determined that the Chilean State is internationally responsible for the lack of guarantee of rights to health (Art. 26 ACHR), life (Art. 4), humane treatment (art. 5), liberty (Art.7), dignity (Art.11) and access to information (Art.13), in relation to the obligations of non-discrimination to the detriment of Mr. Poblete Vilches. Likewise, it declared that the State is responsible for the violation of articles 26, 13, 7 and 11 of the ACHR, to the detriment of his relatives.
The Inter-American Court had to address two legal issues related to the right to access information. First, whether the lack of informed consent constituted a violation of the right to information. Second, whether the lack of information provided by the medical staff about the care of a patient who was discharged and the lack of clear information about the diagnosis and medical care granted to a patient, constituted a violation of the right to access information.
First, the Court analyzed the link between the right to information and the right to health. It indicated that States should ensure people have access to basic health services and that, for the purposes of emergency medical services, States should guarantee basic standards regarding the accessibility of those services. Further, emergency healthcare facilities, goods and services should be accessible for all people. The Court understood accessibility to comprise a range of guarantees including the right to information, the principle of non-discrimination, and that facilities, goods and services are physically and economically accessible. [p.121]. For the Court, healthcare systems respecting the above principles are inclusive and based on human rights.
The Court indicated that informed consent, as an aspect of the right to access information, is one of the basic standards for accessibility of healthcare and, consequently, of the right to health. Therefore, access to information – enshrined in Article 13 of the ACHR – becomes instrumental to guaranteeing and respecting the right to health. In the words of the Court, the “right to access information is necessary to carry out the derivation of the right [to health] included in Article 26 of the Convention, […and potentially] other related rights, in accordance with the particularities of the specific case”[p.160].
Regarding the right to obtain informed consent, the Court recalled that Article 13 of the ACHR “includes the right to seek, receive and disseminate information and ideas of all kinds, which protects the right of access to information, including information related to people’s health ”[p.161]. The Court stated that informed consent has been defined by the Court as “a prior decision to accept or undergo a medical procedure in the broad sense.” The consent must be “freely obtained, that is, without threats or coercion, induction or improper incentives.” Also, this decision must be expressed only after “adequate, complete, reliable, understandable and accessible information” has been provided. Finally, the information provided must be “fully understood, which will allow for the full consent of the individual” [p.161]. For consent to be considered as valid, it must not only be understood as an act of acceptance, but it must be prior, free, full and informed. Generally, consent is personal, since the person who will access the procedure must provide it.
Regarding the second legal issue, the Court also recalled that it has been clear in determining that health care providers should inform the patient, at least, about: “i) diagnostic evaluation; ii) the objective, method, probable duration, expected benefits and risks of the proposed treatment; iii) the possible unfavorable effects of the proposed treatment; iv) treatment alternatives, including those that are less intrusive, and the possible pain or discomfort, risks, benefits and side effects of the proposed alternative treatment; v) the consequences of the treatments, and vi) what is estimated to occur before, during and after the treatment” [p.162].
In the instant case, the Court indicated that the relevant facts related to the lack of informed consent by the relatives for the surgical procedure performed on Mr. Poblete Vilches during his first visit to the Hospital. However, regarding the second visit, the relevant facts related to the right of access to information by family members.
The Court stated that, during Poblete Vilches’ first admission to the Hospital he was transferred to the “ward” for a surgical procedure despite the fact that his relatives had indicated that he could not be surgically operated on because he was diabetic. The Court corroborated that the relatives had not authorized any medical interventions by determining that the authorization on the medical record had been falsified.
The Court stated that according to local regulations in Chile at the time of the case, consent by proxy came into effect only once it was verified that the patient, due to his/her medical condition, did not have the capacity to make decisions about his or her own health. Under those circumstances, the power to make decisions would be granted to the patient’s representative, to an authority, person, family member or institution, as the case may be. Only under exception emergency conditions, may medical personnel make decisions without consent by proxy. In the instant case, the Court indicated that because it was not an emergency, it was necessary to obtain the consent of the relatives, which was not done.
Based on the foregoing, the Court concluded that the Chilean State failed to comply with its international obligation to obtain, through its health personnel, the informed consent of Mr. Poblete Vilches’ relatives, necessary to perform the medical procedure during his first hospital admission. Additionally, the State violated the relatives’ right to access information, since no clear and precise information was provided about the patients discharge and the required care. Moreover, this right was violated during the second admission on the grounds that no clear and accessible information was provided regarding the diagnosis or medical procedures. In conclusion, the Court considered that the right to obtain informed consent and access to health-related information was violated, to the detriment of Mr. Poblete Vilches and his relatives.
 States must also guarantee standards regarding the quality, availability and acceptability of the care.
Decision Direction indicates whether the decision expands or contracts expression based on an analysis of the case.
The decision expands the protection of freedom of expression by reaffirming the standards on access to information. The Court upheld its jurisprudence on informed consent and consent by proxy and its link to the right to information. The Court reiterated that informed consent is an integral part of accessibility of information, which is one of the basic standards for accessibility of healthcare and, consequently, of the right to health. Therefore, access to information is instrumental for guaranteeing the right to health.
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