The Beginning and End of Life
On April 11th, The Bioethics Institute hosted Ana Iltis, PhD, the President-Elect for the American Society of Bioethics and Humanities, as she commented on the compelling nature of bioethics in the United States. The evening began with a screening of the award-winning short documentary “62 Days” (29 minutes) which tells the story of a Texas emergency medical technician, Marlise Munoz, who dies from a brain embolism when she is 14 weeks pregnant. Texas law required the hospital to attach Mrs. Munoz to life-sustaining machinery, despite her written Advanced Directive indicating she did not want this and against the wishes of her husband and other immediate family. The film documents the public debate and court battle that unfolds over 62 days. Dr. Iltis used this as a spring board into reflection on American notions of autonomy, rights of women and fetuses, and the complicated nature of regulated social norms.
Images (from right to left): Harvard Medical School Center for Bioethics, "The Ethics of 'Making Babies,'" 62daysmovie.com "When Marlise Died, The Battle for Her Life Began"
Image: news.wfu.edu "Dining Dilemmas Give WFU Students Food for Thought from Dining Room to Treatment Room
Ana S. Iltis, PhD is a Professor of Philosophy and the Director of the Center for Bioethics, Health, and Society at Wake Forest University. She is also the President-Elect of the American Society for Bioethics and Humanities. She has a PhD in Philosophy from Rice University and is the cofounder and coeditor of Narrative Inquiry in Bioethics and a senior associate editor of The Journal of Medicine and Philosophy. Prior to joining the faculty of Wake Forest University, she was an Associate Professor of Health Care Ethics and PhD Program Director in the Center for Health Care Ethics at St. Louis University. She also taught research ethics in the Department of Medicine at Washington University in St Louis. Her work focuses predominantly on the ethical conduct of human research, and she is currently studying the ethical dilemmas of transplantation as well as implications of revising the 14-day limit on embryo research.
In her lecture entitled, “Pregnant, Yet Dead: Autonomy and the Right to Life in the Strange Case of Marlise Muñoz,” Dr. Ana Iltis discusses a variety of ethical and legal considerations surrounding the case of Marlise Muñoz. Marlise Muñoz was kept on life support (against her previously indicated wishes) because she was 14 weeks pregnant at the time she was declared brain dead. She was kept on life support largely due to the Texas statute that requires pregnant women to remain on life sustaining treatment no matter the stipulations of their advanced directives. Because this statute predominantly determined the outcomes of the case, Dr. Iltis focuses her discussion on the ethical considerations and complexities of advanced directives and laws regarding end of life care. She goes into particular detail on the Texas Advanced Directives Act and addresses whether or not it should have applied to Marlise. She goes on to discuss the neurological criteria for brain death and how it applies to complicated cases wherein there may be exceptions or objections to this manner of declaring death. Dr. Iltis then addresses the role anticipated outcomes should play when deciding whether or not to maintain a deceased woman’s body for fetal gestation purposes, such as the potential for fetal anomalies and the likelihood of a live birth. Finally, she discusses the complexities and considerations that must be made when dealing with advanced directives and how to proceed when they are either absent or unclear.
Watch the full lecture here:
A Legal Perspective...
Image: socialdifference.columbia.edu "Jenny Gumer"
Jennifer Gumer is an attorney practicing in the litigation department of Gibson Dunn and Crutcher in Los angeles. She received her Juris Doctorate from New York University, School of Law and her Master’s in Bioethics from Columbia University. We interviewed Jennifer to hear her thoughts on the legal matters concerning Marlise’s case.
You can watch the interview here! —>
Emma Koeppen is an English major at Loyola Marymount University. She plans to pursue a minor in Bioethics and attend law school upon graduation. She has a particular interest in the field of healthcare law and psychology, and hopes to be able to combine these interests in future career endeavors. She is an undergraduate intern for the Bioethics Institute.
Read Emma's thoughts on the lecture here.
This page was created by LMU's Bioethics Institute's Craves fellow, Mia Loucks and the Institute's undergraduate intern, Emma Koeppen.
The Debate on “the Good Death”
It is not easy to add entirely new perspectives to the vast bioethics literature that has emerged, over the years, on the ethics of dying well. The passing of “aid-in-dying” laws in several states, whether defined by statutes, or as a result of popular referenda, simply stokes a fire that was never really extinguished, only kept alive, under the embers of previously defined conceptual systematizations, by new publicized cases of requests for “assistance” in dying. California is only the latest story, for sure, not the last one. This is the case because what is at stake in the conversation is the problem of articulating the conditions for a good death – and more specifically, for a good death when faced with the vulnerability of old age, terminal disease, and unbearable suffering. Such a task remains quite formidable both in relation to its philosophical foundations, as well with reference to the analysis of specific ethical quandaries. I shall reflect, in my presentation, on what I would call “existential modalities” of confronting death, and delineate some particular ethical implications with regard to these.
Today, the discussion about the ethics of dying centers on the resources of a particular language game, defined by the conditions for a control of death. At the heart of the reflection is the use of medical technology, of the medical power to prolong life. Such power has pushed the limits of our technical possibilities, creating an imbalance between what can and what should be done, thus leading to the question of the quality of life endorsed or maintained by a particular treatment. To use the words of philosopher James Rachels, there is a difference between “being alive” and “having a life.” But, how does one decide on the boundary between the two? If “having a life” depends on a perspective of value regarding that which renders life livable, or worth living, doesn’t one end up in the trap of a subjectivism that shrugs off all criteria? And what is more, how do we reconstruct an objectivity that holds true for the medical act itself, beyond two equally false alternatives: one in which medicine becomes a victim of the patient’s individual preferences; the other, in which to treat is to focus exclusively on the maintenance of purely biological mechanisms. If in the former case the lex suprema (supreme norm) of the medical act is conflated with the voluntas aegroti (the will of the patient), in the latter the salus aegroti (the health of the patient) is reduced to a kind of stubborn insistence on the biological functioning of individual organs, more than to attention for the integral good of the patient.
I would dare say that the debate surrounding a good death – and thus a normativity of dying – is in a certain sense a paradoxical one, in that it unfolds on the premise of a suspension, or a bracketing, placed on the anthropological meaning of death. One often speaks of the ethics of dying, of “dying well”, but without always knowing in relation to what. Moral discourse, especially in bioethics, claims to provide normative criteria. It does so, however, on the presupposition of a suspension of any symbolic horizon capable of attributing meaning to death, of saying what death is, what it represents for the person. Of course, one cannot but be pleasantly impressed by the formal elegance and analytical consistency with which the moral principles of a presumed common morality, logically shared by all rational agents, are put into play, when faced with the most complicated ethical conflicts. The so called “principlism,” with its mantra of first principles – such as beneficence, autonomy, and justice, in turn specified by the rules of proportionality, of informed consent, and equal distribution of resources – might constitute a helpful point of reference when tackling the many conflicts faced by health professionals, patients and their families, in the different clinical settings. Yet, when ethical “principles” and “rules” are employed mechanically, as if in a kind of a priori framework, such elegant bioethical theory looks more like the glass bead game without any grasp on reality. To use the categories introduced by sociologist Max Weber, in this version of ethics, “substantial” rationality gives way to “formal” rationality, reflection on ethical content dissolves in sheer proceduralism.
How could such an approach provide recommendations toward a truly good and dignified death? What if ethical formalism were to betray, in the end, a lack of any points of reference, if not resentment, as Nietzsche might suggest, when faced with the void of sense? Morality, in this case the morality of a good death, would only be smoke and mirrors, a nihilistic enchantment. The existential aspects of death and dying, when considered in their experiential value, that is, as dimensions of our journeying (experior), and, likewise, in their value of trial (peiros), as for example in physical pain or the suffering of loneliness -- all these aspects cannot be left unaddressed. Faced with this existential wager, we must, once again, ask ourselves the question: what is a good death?
One could say that a good death cannot be envisaged other than as the fulfillment of a good life, and this with reference to a life that will inevitably age. Death will be considered good when it succeeds in expressing the meaning of living, understood as living well. That living well can and must end, at times even tragically, and why – these are questions that do not belong to the discipline of ethics per se. Yet ethics cannot even begin to reflect on its proper criteria if not, at least implicitly, beginning with an answer to this question. I believe such question has a metaphysical quality to it: it touches upon the notion of our ultimate attitude to being as such and to the meaning of things. I would like to briefly sketch out two “existential modalities”, one might say, two paradigms, wherein an ethics of aging and death are expounded. I will call these paradigms the conatus essendi and the passio essendi, respectively.
Resisting Death: Conatus essendi
What exactly is meant by the notion of conatus essendi? By this, I mean a way of standing before things defined by the effort or impulse, the conatus, of being. Here one is dealing with a position based on distance from reality, in which the subject determines the conditions for the appearing of things, whose certainly, if not truth, will entirely be defined by relation to a subjectivity that posits and determines. Being is insofar as it responds to the (transcendental) forms of its apperception on the part of a subjectivity that measures and rules its phenomenic presence.
Such a position has, first of all, an epistemological meaning. On the premise defined by the ambiguity of the appearing of things – thus the doubt pertaining to them – the cogito tries to recover an irrefutable certainty, no longer starting from the promise of meaning that inhabits reality, but from the subjective certainty that defines the very act of thinking, an act that must necessarily presuppose – and beyond all doubt no less – at least the existence of the cogito who thinks. In this way, however, one sees a shift, a “Copernican revolution” in the way of conceiving of the relation between subject and object, and, moreover, of the priority of the former over the latter. Without entering here into the details of this “anthropological turn,” let us consider some of the important cultural consequences it entails.
The scientific revolution, which affects medicine as well, is one of the significant consequences of this anthropological shift, wherein the relationship with nature is no longer “undergone,” so to speak, but shaped by precise heuristic models that reduce the complexity of nature to a univocal parameter. Nature is subjected to the mathematical hypothesis that will allow for it to be described and verified empirically. The “book of nature”, so loved by the Medievals, has much to say still, but will do so without resting on the intrinsic perfection of nature (teleology). The hypothesis of the “spectator scientist” will set the conditions for nature to speak, arriving, as Galileo says in Il Saggiatore, even at “forcing” or “violating” nature, if necessary. All this presupposes a neutralization of what cannot be reduced to the coordinates of the scientific model. I am thinking of the meaning of this neutralization of reality not only in relation to the distinction between “primary” and “secondary” qualities (confront Hume), but also to the Cartesian reduction of the human body to res extensa, a mechanism separate from the mind. If true reality is only that which can be described mathematically, then we ought to bring the unverifiable pathos of reality back to the dianoetical precision of the formula. This holds true also for the subject, whose emotional complexity will have to be reduced, now, to the act of “thinking clearly and distinctly.” In the words of Spinoza, neque lugere, nec ridere, sed intelligere.
Up until this point, I have spoken of the epistemological significance of this existential modality. Let me turn more specifically, now, to its implications for ethics, moving then more pointedly to the ethics of dying. The subject who fashions reality is also he who grants it value. This is so because the neutralization of being, with respect to the object, entails something like a rebound effect, a kind of “contraction of value” – especially with Kant – in favor of the subject. Only the person possesses an intrinsic value, is a good in itself, never to be treated as a means, only as an end. Unlike nature, understood now as a phenomenal field open to endless manipulation, the person is not neutral; rather, being the source of absolute meaning, she is the condition for the very possibility of meaning’s attribution. Consider the following considerations of William Desmond:
Here is the sting. The subject cannot live with this devaluation of otherness, and even less with the devaluing of its own valuing. It will not be passive to this. It will be active. The subjectification of value inevitably leads to the primacy of self-activity that impresses itself on the other… We witness the recoil of the subject on itself out of the hiding of neutrality it had schemed for itself. There is no escape from itself, but now when it awakens again to itself, it has been transformed into a more radically self-assertive subjectivity.
Let me pause, at this point, and come to some applications to the theme of death. One might say that, in this paradigm, the good death is the humanized death, that is to say, death lived not as something man undergoes or endures; rather, as something man chooses to the extent that he determines it, in the same way in which he chooses and determines the theoretical models for his access to reality as such. If man is the “measure of all things”, death cannot be greater than man. Death can and should indeed be neutralized, if not in its inevitability of a fact that inexorably happens, at least, in its dramatic quality of an experience that can be endured. The effort to be, the conatus essendi, is a struggle against death, the attempt to indefinitely postpone it, or else to anticipate it “rationally,” as in the case of euthanasia or assisted suicide. Absolute passivity is not worthy of man.
This paradigm is not without important emphases. The effort to humanize death, above all relative to the tasks of health care and scientific research aiming at the treatment and management of pain, are essential dimensions to our relationship with death. An inhumane and dehumanizing death cannot be good. Yet, in this paradigm, there are also contained the seeds of a possible degeneration. If the good death represents the fulfillment of a good life, there is the risk of thinking about death according to the logic of scientific-technological control and neutralizing planning that, in the paradigm of modernity, render a life worth living.
The most we can do is to prolong life, eliminating from it all pain and suffering, but we have not yet succeeded in “managing death.” Death will always come, now as an unexpected surprise, an expression of the heteronomy of nature that is even more striking, because it seems to contradict the autonomy with which we attempt to completely define ourselves.
Again, the separation, the dualism of person and nature, if on the one hand constitutes the condition of possibility for controlling death, it can also lead to conflicting results: a technological effort that de-personalizes nature; or a will to power that de-naturalizes the person to the level of a self-determining rationality, as in the cases of euthanasia and assisted suicide. The epoche’ on any search for the meaning of death is the inevitable result of both these developments, stemming from the same root.
Letting Go: Passio essendi
Perhaps the conatus essendi does not represent the ultimate (in the sense of the German ursprünglich) existential modality with which we face reality. We ought, then, think of an attitude of more radical openness, even one of intimacy between man and being: a ϑαυμαζειν, a wonder at the fact that being is, when it could also not be. In wonder, man takes up his residence (wohnt) in the between, attuned to the saturation of meaning that dwells in things, in their value, and in whose midst he is called to make himself a world. If it is so, the conatus essendi can only be a derivation, of course possible and legitimate, of a more original passio essendi, of an “undergoing” (passio) being that also becomes a “passion” for being.
With respect to the previous paradigm, the passio essendi bears with it the recognition that man is not the origin of meaning; only insofar as he is originated, he can and must attribute meaning to things. But man can do this only on the condition of a previous attunement (Stimmung) to the promise of meaning that already dwells in reality.
In this paradigm, there is no separation between being and value, fact and meaning, for being is, intrinsically, promising and valid, good and beautiful. Of course, man produces and makes, searches and fashions, yet he does all this far from the presupposition of a neutralization of nature; rather, on the basis of an activity that perfects nature, as it acknowledges in being a reserve of meaning to make his own, and bring to fulfillment.
The receptivity in question is clearly not a form of passivity either, for it is, nevertheless, to a consciousness and to its active intentionality that the meaning of things discloses itself. And yet the activity of consciousness rests on the presupposition of the inexhaustible depths of the mystery of things, as Gabriel Marcel would say, of their endless and never to be reduced profundity, which makes itself known because it opens itself up, because it reveals itself. Man lives a relationship with reality in an attitude of trust, not of doubt or distancing suspicion.
The task of freedom is to do and to build, to fashion the world only because, prior to this, the world was “let be.” The task of freedom is a response, a responsibility, and one beyond the autonomy that is exercised in the will to power, seized at another’s expense: a freedom that leaves things be in the generosity of love and gift.
The relationship with death unfolds within this context and according to the same logic. The humanization of death will be possible on the condition that death be accepted and not suppressed or censured. Death is, after all, part of the human experience, an event whose significance cannot be anticipated, in fact, a disclosure (Enthüllung), a total revelation of meaning, both promising and significant.
The “passivity” implied by death is, thus, the final expression of the more general receptivity of life. Eberhard Jüngel writes in his thoughtful book on death:
There is a passivity without which man could not be man. Part of the reason for this is the fact we were born, we were given-birth-to. Here there follows the fact that we are loved. So, too, is the fact that we die.
Yet, to accept death also implies an activity, an act of preparation that opens up a space of creativity. We all die, yet we face death differently; not unlike life, requiring its own special art, one that is accomplished daily in silence, and in the cultivation of virtues, so, too, does death require a kind of art, the ars moriendi, shared along a passage wherein one is not alone, in what Norbert Elias calls “the solitude of the dying person.” Death is a threshold toward which we journey together, as if in pilgrimage, comforted by prayer.
It is clear that the acceptance of death, in this paradigm, remains incomprehensible without a theological lens. In a Christian framework, death is, at bottom, an eschatological event, one which belongs to the personal narrative of each and every human being, yet also points to a trans-historical fulfillment, to definitive communion with God beyond the limits of history.
How to move from the anthropological to the ethical level? The difficulties here are numerous, and not only because of methodological issues. The most obvious difficulty consists in the elaboration of a differentiated casuistry that takes into account the nuances of contexts and the diversity of clinical situations. For an example, the cognitive disability of the patient who has lost his autonomy will have a different meaning, and will thus impose a different ethical imperative, when measured against that of a patient who has never possessed such a discretionary autonomy. Likewise, we will have to distinguish among the ethical problems that pertain to a patient’s autonomous decision making and those pertaining to the responsibility of a surrogate, who is deciding on behalf of somebody else. Such a detailed casuistry cannot be offered within the time and scope of this presentation, but I want to draw attention to a document that, in my view, is quite exceptional, the 2005 Report prepared under the direction of Leon Kass by the President’s Council on Bioethics, “Taking Care: Ethical Caregiving in Our Aging Society.”
Let me simply emphasize the fact that the ethical meaning of decision making at the end of life, for an example in relation to the task of drafting advanced directives, will be entirely defined by the existential model with which one approaches death. In the materiality of the “letter”, one such document may betray a different attitude of “spirit”: the acceptance of death, in the logic of the passio essendi, or the other, more desperate effort, indeed the conatus, to deny it. In the latter case, in articulating our personal preferences for this or that treatment, we exorcise our fear of dying with the reassuring conviction that we will be able, at least, to manage its terminal phases the way we want, thus granting the mute alterity of death a face we might recognize. If death speaks, if it has something to disclose, it will nevertheless be according to our own measure, beyond all feeling of dependence, and without surrendering to any kind of heteronomy, such as that imposed by a treatment we do not want.
There is a certain paradoxical abstractness in the exercise of preparing an advance directive or a living will: inevitably one thinks of death as a kind of thought experiment, an event that is still far away and, hence, not too serious of a matter. Moreover, in this context, one thinks of the preparatio mortis essentially like an exercise of freedom that yet again, decides and plans. To paraphrase a distinction made famous by theologian Dietrich Bonhöffer, one might say that the logic behind the act of preparing a living will, or of filling our advanced directives, is the logic of “resistance” (Wiederstand) more than “surrender” (Ergebung). It looks more like a final protestation, rather than the ultimate acceptance of a destiny we do not know, and, precisely for this reason, requires from us a disposition of acceptance, perhaps even a kind of openness to it. Death belongs to our future because it comes to us, an event that is ad-ventus, and thus both indeterminate and indeterminable.
Understood in this way, as an act of trusting abandonment, death must be let happen, for we cannot escape it. This is why I speak of paradox, for we fail to see how the scrupulous adherence of others – whether doctors, or family members – to our final wishes for the last stages of our life represents more an anticipation of the radical alterity of death, than an expression of our presumed capacity to domesticate it. Of course, we can clearly state what we want, even with a document that possesses the power of binding others to our wishes; yet, it will always be others who are charged with the task of respecting our desires and carrying them out: their decision will be, eventually, beyond our control.
Let us think of this paradox with regard to the case of “aid in dying.” The request for assisted suicide, now legal in five states in the U.S., will be heralded as an instance of self-determination, and in the name of a “death with dignity.” And yet, precisely at the moment in which the patient asserts his own autonomy for the last time, he must nevertheless abandon himself to someone else who, providing a lethal cocktail that brings about death, does for him what he can no longer do by himself.
It is clear that, if the language of dying, even in the ethically exemplary case of filling out advanced directives, is articulated by the patient against the backdrop of an epoche’ on the meaning of death, the doctor and the healthcare personnel, in turn, cannot but share this “conspiracy of silence,” as the psychoanalyst Jay Katz has famously said, in which “that which cannot be spoken about, should be passed over in silence.” Of course, doctors will have their own reasons for resisting talking about death with their patients, and will express their will to power in their very unique way. For an example, by hiding themselves behind the technological imperative to fight death until the end, by opting for an aggressive treatment that has become futile, or by stirring up for patients and their families an impossible hope of recovery, which is but a mask of fear (the doctors, no less!). The bracketing of the reality of death, as well as the privatization of the criteria for dying, in the end render any solidarity with the dying impossible: the last word of this language of death, ambiguous because disloyal to the reality of death, can only be the solitude of the dying.
See notes and resources here.
ONE: Decision Making, Rationing, and the Imperiled Neonate
by Jared Howes
“Tied to machines that make me be. . . I cannot live. I cannot die.”
When James Hetfield and Lars Ulrich of the American metal band Metallica penned the hit song “One”, in 1988, they probably were not thinking about bioethics. Demonstrating the horrors of warfare through the terrible quality of life a maimed soldier experiences post lifesaving treatment, they unwittingly tapped into a major ethical issue facing the medical community; while medical technique and technology had made tremendous progress in recent decades, medical ethics had lagged behind resulting in a gap. The use of advance lifesaving technology may create, for the first time, situations where a patient is either suspended between life and death, or is left with heavy physical or mental impairment. Many see the erosion of patient’s quality of life as such a burden that it would be better to euthanize them than allow for such a cruel and dreadful existence to persist. Compounding the problem are cases involving imperiled newborns who receive lifesaving treatment in the neonatal intensive care unit (NICU). This compounding is influenced by the emotional reality of the patient being a newborn who hasn’t yet had a chance to live life, form value systems, or ponder advance directives; and the clinical reality that such patients, lacking both capacity and legal competency, must rely on surrogates to determine their fate.
There has been much debate within the field of bioethics on what factors should be used in determining whether an imperiled infant will or will not receive lifesaving care. Two polar views have emerged. On one side is vitalism, which demands everything be done to save the life of an imperiled infant, and on the other side a libertarian autonomy, leaving the decision solely up to the parents. Other theories lie on a spectrum between these two extremes. In this essay I will answer three questions: At what level should decisions of healthcare rationing be made? What criteria should be employed for determining the treatment of an imperiled newborn? And who ultimately decides the fate of an imperiled newborn? There exists a diverse corpus of literature about these questions, and certainly the sheer amount is beyond the scope of this essay. Therefore, I have chosen two main ethical theories to form the basis of my argument; quality of life models and personalist morality. In addition to presenting differing scholars from within each theory, I will borrow heavily from the tradition of Christian discernment to inform my conclusion. I do not intend my choice of included models or specific authors as a rejection of other theories but merely a practical limitation.
Click here to read Jared's entire paper.
"The use of advance lifesaving technology may create, for the first time, situations where a patient is either suspended between life and death, or is left with heavy physical or mental impairment."
Read Arras's "Toward an Ethic of Ambiguity" on The Hastings Center Report...[read more]
Click here to preview Richard C. Sparks' "To Treat or Not to Treat: Bioethics and the Handicapped Newborn"
Official Music Video: Metallica "One"
About the author...
Jared Howes is in his first year of the Bioethics Masters program at LMU. He is currently working on a paper concerning the ethics of neuromarketing in healthcare settings. He is also researching intra-Catholic conflicts within specific countries for Fr. Thomas Rausch of LMU's Theology department.