On Living Wills and the Right to Die
Published on LYSIS on
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(Still Life with Skull and Quill, Pieter Claesz, 1628. Oil on canvas, 55 × 74 cm.
Collection of the Mauritshuis, The Hague, Netherlands.)
In our time, as in classical antiquity, there is an ethical achievement that can no longer be kept quiet, although it is often omitted from the most urgent public debates: the right to die with dignity. Although the right is often expressed in legal or medical language, it begins and ends with a philosophical question about the status of life and the legitimacy of its possession. After all, if life has a rightful holder, and that holder is a conscious, lucid, ethical subject, why should the final decision about the terms and manner of their own death lie with anyone else?
What we now call a living will (or advance directive) is, at its most sensitive core, an ethical affirmation and one of the few humanist principles still recognized in our post-pandemic times. It is a declaration made in advance by someone in full possession of their faculties, projecting a refusal into the future: “I want the will I consciously express today to prevail should I lose clarity, judgment, and autonomy tomorrow.” People are generally advised to consult a lawyer when drawing up the document. Anyone, however, can write a declaration and register it with a notary. In this sense, a living will is a refusal of therapeutic obstinacy, an advance veto on the artificial prolongation of life, and in some cases a calm choice for a death without the interminable hospitalization of someone who can no longer find the resources to live out their final days with dignity. It is also an antidote to involuntary dysthanasia: the imposition of others' wishes, even when motivated by affection, on the now inexpressible will of the person who alone has the right to interpret their own end.
Brazil has no specific federal law regulating living wills, although the Federal Council of Medicine has recognized their validity since 2012 under Resolution No. 1,995. This resolution directs physicians to respect patients' autonomy, including their refusal of treatment that is of little benefit or is disproportionate. As we know, however, resolutions do not have the force of law. This leaves advance directives open to challenge by relatives, institutions, and even the state itself, as though people ceased to have authority over their existence at precisely the moment when they most needed it. If we know a family member's wishes, if they tell us while conscious how they wish to be treated at the end of life, we ought to respect the decisions that have been placed in our hands, out of love for them and without letting selfishness or the frailty of our feelings prevail. A family conversation would therefore be worthwhile. We could come to understand that death is part of life, that it involves those who remain more than those who depart. There would be great beauty in talking about it precisely so that those who remain are spared guilt and doubts about what to do.
Several bills before the Brazilian Congress seek to regulate orthothanasia (the term for withholding intervention in irreversible conditions), refusal of treatment, and living wills themselves. Bill No. 3,002/2008, introduced by Hugo Leal, proposes to regulate orthothanasia (as far as I know, it has never been put on the agenda!). Bill 6,715/2009, introduced by Gerson Camata, proposes amending the Penal Code to remove the unlawfulness of the act (as far as I know, and I have looked into it, it has never been put on the agenda!). This bill is being considered together with Bills 3,002/2008, 5,008/2009, and 6,544/2009. Bill 5,559/2016, introduced by Pepe Vargas, Chico D’Angelo, and Henrique Fontana, seeks to establish patient rights, including refusal of treatment regardless of age or the severity of the condition (as far as I know, it has never been put on the agenda!). Bill 352/2019, introduced by Alexandre Padilha, then a deputy and now a minister, deals with informed consent and advance directives. Senate Bill No. 236/2012 proposes reforming the Penal Code, defining euthanasia as an offense and providing that in certain circumstances it would cease to be unlawful. Unless there is something I have missed, our Congress has never debated any of these bills. The legislative silence makes a deafening ethical noise. Do you hear it?
Consider some basic questions. Whose duty is it to live? In the name of what principle can someone be forced to go on breathing when pain has become unbearable and hope is no longer a horizon but a mockery? The traditional answer, inherited from Augustine and Thomas Aquinas, is that life belongs to God, to Nature, or to the State. This theological, naturalistic, and statist triad underpins part of contemporary Brazilian jurisprudence, as though bringing about one's own death, even with assistance or palliative care, amounted to a metaphysical assault on the order of things. If that is so, what remains of the moral autonomy of the subject? Being the rightful holder of one's life, an expression that sounds administrative but is deeply philosophical, must mean that the person is an end in themselves, as Kant held. And as an end, the person cannot be turned into a means for medicine, religion, or the legal apparatus. Human life is first of all a lived life. One of the highest expressions of a life lived is the dignity of its ending.
Reading the ancients helps us understand this possibility. It is precisely why I wrote História do Suicídio. The Stoics, and Seneca in particular, handed down an ethics of freedom in the face of suffering. In his Letter 70 to Lucilius, Seneca writes:
For, as you know, we need not always cling to this life. The good consists in living well, beyond the mere fact of being alive. The wise person will therefore live as long as necessary, rather than as long as possible. They will bear in mind where, with whom, and how to conduct their life, and what they are about to do. Their reflections always concern the quality of life, rather than its quantity
(Sêneca, Carta LXX, 4-5. See my História do Suicídio, p. 233, where I analyze this passage).
That is what the living will, in its modern form, affirms. One need not live at any cost. To live badly, that is, without dignity, self-possession, or awareness, is no obligation. At bottom, the right to die with dignity is the right to refuse to be kept alive against one's will, as if one's body (yes, the body sustained by our techniques) were an asset belonging to someone else and the person (our loved one) an absence to be tolerated.
That is why the living will should be recognized as a fundamental ethical provision, an expression of serenity rather than a response to despair. A death chosen in this way is an act of freedom. It is the last form of care of the self, as the ancients would say (remember that the concept of care of the self comes to us from Plato!). Perhaps this, after all, is the decisive question of our age. What is more dignified? Condemning someone to live when life no longer belongs to them, or recognizing the quiet greatness of someone who knows their hour has come and chooses to depart? May we have the generosity and the strength to honor the wishes they actually expressed while they were alive when the final hour comes.
Prof. (and student) Alexandre H. Reis.
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