“Biotestament? Facebook can help you”

By Cristiane Avancini Alves

The question reproduced in the title was posed – last year – by the Italian newspaper “Corriere della Sera“, which described how an Italian association created an application in the social network that allows users to appoint two “testamentary executors” who can activate, in the event of the user’s death, the publication of a message previously chosen by him to be published in his profile. The service also enables users to send private messages to Facebook friends, as well as a final farewell to relatives, and a ‘biological testament’ can be viewed by all members of the network. The creators of the service understood that social networking can be a means of publicizing and thereby respecting a person’s choice regarding the medical treatment she wants to receive at the end of life. However, some problems can emerge – for example, incorrect completion of the virtual forms, which could lead to false communication and comments regarding the death of a user.

The publication in a social network of our “last wishes” passes through end of life decisions that were previously made in a personal and familiar atmosphere to different members, followers, and users of a social network. The point, here, is not if this is “good” or “bad”, but it does raise questions as to the new ways of publicizing elements that were circumscribed to our private life and how, when and why we are doing so.

In the U.S., well-known cases including Quinlan, Cruzan and Schiavo received strong media coverage, and in some cases led to legal change. The Patient Self-Determination Act (PSDA) was passed in the wake of Cruzan, followed by the Supreme Court’s recognition of constitutional protection of the right of patients to refuse treatment that sustains life, including food and water. U.S. and Italy both have numerous examples of legal battles bringing private cases into public light via the media. In Brazil, a recent Resolution of the Federal Board of Medicine addresses advance directives before any specific case being argued. However, there is no law about the subject in the country, and the discussions raised after publication of the cited Resolution were not well interpreted or spread by the Brazilian media. This is a subject that I want to develop in my next post. For now, it is clear that the conjugation of media and social information and responsible structuring of legal documents are fundamental tools to balance legal and bioethical results.

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