D., M. A. s/ declaración de incapacidad

D 376 XLIX. REX
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The plaintiffs, the legal guardians of their brother, filed a complaint so that the Court order the withdrawal of enteral tube feeding and hydration of their brother that artificially keep him with life. The patient in October 23 of 1994 suffered a car accident that left him in a permanent vegetative state. His representatives based their claims on the Law 26 529 [rights of the patients] and on article 19 of the National Constitution.

The Provincial First Instance Court dismissed the claim. The plaintiffs filed an appeal with the Provincial Court of Appeal which confirmed the first instance judgement. The plaintiffs filed an appeal with the Supreme Court of Justice of the Province of Neuquén (SCJ) which revoked the previous judgement and admitted the claim. To do so, the SCJ found that in this case was contemplated in the Law 26 529 and the plaintiffs had standing to provide the informed consent of their brother. The guardian ad litem and the Public Defender filed an extraordinary appeal with the Supreme Court of Justice arguing that the patient case was not contemplated in Law 26 529 because the law required that the patient was in terminal condition in order to withdraw the enteral tube feeding and hydration and he was not artificially supported, also that euthanasia was prohibited under article 11 of that law, and that the retroactive application of law 26 529 was arbitrary.

The Supreme Court held that as there were some ethical and medical issues in the case, they required the assistance of a medical expert to determine if the victim was in a irreversible condition and its possibilities to recover in order to withdraw the artificial support, the requirement of law 26 529, and if the sisters could require an informed consent to stop their brother's treatment.

The case of the patient was exceptional and unique, given the fact that it was in a irreversible coma for more than 20 years. According to the medical expert and statistics, the patients that are in a persistent vegetative state for over 12 months have no probability for recovery. The chance of survival of these patients over 15 years is between 1/15000 and 1/75000. The mortality rate of patients that live over 10 years is of 90%. At the same time, the hydration and the enteral tube feeding didn't have the purpose to be only temporary for a recovery, but that they were replacing vital organ functions and so the patient was artificially assisted. For these considerations the Supreme Court considered that the patient although it was not suffering from a disease, his condition had the same characteristics as a terminal disease: is irreversible and there was no chance for recovery, so the patient could require the withdrawal of artificial support according to article 2 of law 26 529.

The terminal patient could provide an informed consent according to article 5.g of law 26 529 but the problem was that he didn't leave a written informed consent because at the time of the car accident occurred, it was not a common practice to do so. Article 9 of law 26 529 stipulated that in cases as the present one, where the patient couldn't deliver full consent, some family members were allowed to provide, under oath, which was the patients consent. It is not the case that a family member could replace the consent of the patient and his inherent right to self determination, but they could give testimony or evidence of which was the will of the patient while he was conscious about what should be done in case he was in a terminal state, a way to guarantee the right to self-determination of the patient. The sisters were a family member authorized by the law to provide that testimony according to article 21 of law 24 193.

This case was not of euthanasia and the retroactive application of the law was not unlawful.

The Supreme Court of Justice partially confirmed the extraordinary appeal and held that the sisters would not provide the informed consent of the patient but instead they would testify about which was his consent.

"[...] El valor de la autodeterminación de la persona humana con fundamento en el artículo 19 de la Constitución Nacional, no solo como límite a la injerencia del Estado en las decisiones
del individuo concernientes a su plan de vida, sino también como ámbito soberano de este para la toma de decisiones libres vinculadas a sí mismo. En este orden, ha dejado claramente establecido que el artículo 19 de la Constitución Nacional otorga al individuo un ámbito de libertad en el cual puede adoptar libremente las decisiones fundamentales acerca de su persona, sin interferencia alguna por parte del Estado o de los particulares, en tanto dichas decisiones no violen derechos de terceros." Paragraph 19

"The value of the self-determination of the human being, based in article 19 of the National Constitution, is not just a limit to the State interference in the decisions of the person concerning their plan for their life, but also as an soberan sphere for the decision making about themselves. It has been clearly stated that article 19 of the National Constitution grants an scope of freedom in which he can adopt freely the fundamental decisions about themselves, without any interference from the State or other persons, when those decisions don't undermine third parties rights." Paragraph 19

 

"En este sentido, debe aclararse y resaltarse que por tratarse la vida y la salud de derechos personalísimos, de ningún modo puede considerarse que el legislador haya transferido
a las personas indicadas un poder incondicionado para disponer la suerte del paciente mayor de edad que se encuentra en un estado total y permanente de inconsciencia. En efecto, no se trata de que las personas autorizadas por la ley -en el caso, las hermanas de M.A.D.-, decidan la cuestión relativa a la continuidad del tratamiento médico o de la provisión de soporte vital de su hermano en función de sus propios valores,' principios o preferencias sino que, como resulta claro del texto del artículo 21 de la ley 24.193 al que remite el artículo 6° de la ley 26.529, ellas solo pueden testimoniar, bajo declaración jurada, en qué consiste la voluntad de aquel a este respecto.

[...]

De este modo, la decisión respecto de la continuidad del tratamiento no puede ni debe responder a meros sentimientos de compasión hacia el enfermo, ni al juicio que la persona designada
por la ley se forme sobre la calidad de vida del paciente, aunque esta sea parte de su círculo familiar íntimo. Tampoco puede basarse en criterios utilitaristas que desatiendan que toda persona es un fin en si mismo. Lo que la manifestación de la persona designada por ley debe reflejar es la voluntad de quien se encuentra privado de consciencia y su modo personal de concebir para si, antes de caer en este estado de inconsciencia permanente e irreversible, su personal e intransferible idea de dignidad humana." Paragraph 22

"It must be cleared and highlighted that the law by dealing with right to health and right to life, by no means it can be considered that the legislator transferred to the listed persons [family members] an unconditional power to choose the fate of the patient that is in a total permanent state of unconsciousness. It is not about the authorized persons, -in this case M.A.D sisters-, to decide upon the continuity of the medical treatment or the provision of life support of their brother according to their own principles or preferences, instead as it is clear from the article 21 of law 24 193 that article 6 of law 26 529 refers to, they can only testify, under oath, what consisted of the patients will."

[...]

In this way, the decision about the continuity of the treatment can't be taken based on compassion feelings towards the patient or the judgement about quality of life provided by the authorized person by law, even though they are part of their intimate family circle. It can't be based on utilitarian criteria that neglect the principle that every person is a end in itself. The testimony that the person designated by law should provide is the manifestation of will of the person who is unconscious and the personal way to think about his human dignity, before being in the unconscious, permanent and irreversible state." Paragraph 22

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