By Cristiane Avancini Alves
A court in Brazil recently held that the mother of a drug-addicted adult woman (who is pregnant and who already has three children) may seek the court’s authorization for the tubal ligation of her daughter provided the daughter is unable to manage her own affairs. The Brazilian health system has received an increasing number of requests for sterilization in the last years, but according to the Family Planning Law, which is based on the principle of informed consent, sterilizations in such circumstances may only be carried out if the woman is legally incompetent.
Such cases clearly raise a number of concerns. For example, sterilization should generally be considered to be an irreversible procedure which deprives the woman of her fertility, and it does nothing to treat the woman’s addiction or help her avoid resorting to prostitution in order to obtain drugs.
One approach to the problem is so-called “dialogical assistance”. This involves the consideration of each case by physicians, psychiatrists and social workers who assess the woman and establish her competence and informed consent to sterilization, and only then consider approaching the courts to authorize sterilization. This procedure can indicate a practical application of patient autonomy and the beneficence principle in social and legal spheres.
By Cristiane Avancini Alves
In my previous post, I mentioned that Brazil does not have a specific law about advance directives. Nevertheless, a recent Resolution of the Federal Board of Medicine addresses this subject. It indicates that so-called “advance directives of will” are the set of desires, previously and expressly manifested by the patient, about the treatment he wants (or does not want) to receive when he is unable to express his will in a free and autonomous manner. Two points must be highlighted: the physician will not follow any patient’s directive that could violate the Medical Ethical Code, and the patient’s wish will overrule the intervention of his family regarding his decision.
The Resolution clearly expresses that “advance directives of will” mean what the phrase itself indicates: a direction, not a closed document that cannot be modified or that must be blindly followed. Time is significant in this context. For example, rapid biomedical development and the new possibility of cure can change the patient’s treatment course, regardless of a prior directive. Besides that, our personal believes about life and death can also change. Unfortunately, these elements have been misrepresented by the media. One of the most important Brazilian magazines dedicated a special report to the subject, but the headline was: “I decide my end”. No. That’s not what the Resolution affirms. The report continues by saying that the expression “advance directives of will” is a “pompous” name for “vital testament”. No. The title is not pompous, but rather accurate – reflecting simply that the document is a previous direction made by the patient. Moreover, advance directives of will cannot be related to testament, since the directive’s effects will occur during life, not after it – as it is for the legal meaning for testament.
Overall, the issues that came up here are indicative of broader issues related to how the media and public understand their rights, and the importance of word choice and clarity to that understanding.
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.