Scott Cutler Shershow on the right to die

February 13, 2014
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Scott Cutler Shershow’s Deconstructing Dignity: A Critique of the Right-to-Die Debate employs Derridean theory to uncover self-contradictory and damaging assumptions that underlie both sides of the controversial discussion. In the  piece below that Shershow drafted for the Chicago Blog, he contextualizes two cases that generated recent headlines about how—and to which extents—we define life, especially in light of its termination.

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“Thinking and Rethinking the Right to Die” by Scott Cutler Shershow

The vexed question of a so-called “right to die” pushes its way to our attention again.

Hasn’t this all happened before, many times? An intimate family story is catapulted into the media spotlight; an unconscious being (once again, as is almost always the case, a female) becomes the figurehead for a protracted medical, legal, and political struggle; and each side accuses the other of being motivated by money.

In one of the two cases that have recently occupied our attention, the family of California teenager Jahi McMath, declared by her doctors to be “brain dead” after routine surgery, were granted permission by a judge to keep the girl on what is commonly called “life support” (a respirator and feeding tube). In the other case, a pregnant Texas mother, Marlise Munoz, was kept on life support for two months despite being declared brain-dead, against the wishes of her husband (in accordance with a state law intended to protect the fetus).

At first, such cases command a certain reticence, and not just because of the unreserved compassion we owe to those who live and die among painful complexities. These troubling cases, which seem at once so familiar and so new, strain the limits not only of our laws and ethics, but our language.

At their surface, these cases bring to light obvious political contradictions within the debate about a right to die. When a patient cannot decide for herself, the immediate question is always: Who has the right (and power) to decide for her? Should it be the family, the doctor, or the state? Consider how Bobby Schindler, brother of the late Terri Schiavo and executive director of the Terri Schiavo Life & Hope Network, finds his position constrained between each of these two new cases. The Jahi McMath case, he says, is about “the right of parents and families”—as opposed to government bureaucrats—to “make private medical decisions.” But with regard to Marlise Munoz, according to Fox News, Schindler “sides with the state”—which means, in this case, that he thinks the state, not the family, should have the right to decide what happens.

These cases also put pressure on language and expression, as the sentences I have written here indicate. What does it mean to withdraw or continue “life support” from a patient already deemed to be dead? As philosopher Giorgio Agamben first observed twenty years ago, the phrase “brain death” fails to do precisely what it is supposed to do: furnish a term and a set of decisive criteria for the absolute end of a human life. The use of this phrase has produced, if anything, the reverse effect. It forces us to distinguish between this so-called brain death and a broader or more absolute condition of “death” itself—understood as the complete cessation of all bodily activity—or, as we often put it in common language, “when the heart stops beating.”

Laurence McCullough, a professor at the Center for Medical Ethics and Health Policy at Baylor College of Medicine in Houston, has been cited in news accounts of these cases explaining that “brain death” must be understood as, “no different than any other sort of death.” But our language will not allow him to make this point: he is only able to distinguish between this brain death and “other sorts” of death. This semantic problem produces sentences that strain the logic of identity and difference. In the McMath case, McCullough states, “the patient is now a corpse”; in the Munoz case, he says, “you have a pregnancy in a cadaver.”

To observe this is no mere pedantic cavil, for right-to-die cases often turn precisely on these terminological problems. In the Munoz case, the hospital claimed to be acting under the Texas Advance Directives Act, which states: “A person may not withdraw or withhold life-sustaining treatment … from a pregnant patient” (emphasis added). In court papers filed in January 2014, Erick Munoz declared that he, “oppose[d] any further medical treatment to be undertaken on the deceased body of his wife.” In the end, the court decided that the law did not apply to Marlise Munoz, who was ruled to be no longer a patient but rather, a body or corpse.

Similarly, Christopher Dolan, the attorney for the McMath family, has argued in both the court and media that it should be up to families, not doctors, to determine when death takes place. The concept of brain death, dependent as it is on a range of highly technical questions about bodily activity, would seem to suggest that only doctors can make such a determination. Yet when Jahi’s mother writes about her daughter, in an open letter released to the press, that “despite what they say, she is alive. I can touch her, she is warm,” I do not know precisely which words could successfully contradict her.

To put it another way: in any attempt to think or to speak about these two human beings, we somehow have to think of each one as (at least potentially) a human being, a patient and a corpse. Jahi and Marlise, like Karen Quinlan, Nancy Cruzan, and Terry Schiavo before them, seem to have (as Agamben writes), “entered a zone of indetermination in which the words ‘life’ and ‘death’ [have] lost their meaning.”

Although the question of a right to die has been debated for a long time, these two new cases trouble conventional positions either for or against.  Those generally in favor of this right often argue the point in terms of personal autonomy and individual freedom. Such arguments, however, only truly apply to cases in which an otherwise fully conscious and competent adult individual seeks to end her life because of terminal illness or disastrous disability. In both the present cases, there was no “individual” to decide autonomously in this way.

Jahi McMath is both incompetent and a minor—and the law often allows parents of minor children to make decisions for them. In this case, the patient is theoretically the one who has chosen this course, via her legal representatives. As Christopher Dolan reminds us (in an op-ed dated January 21, 2014), the rights at stake in the McMath case are ultimately rights of privacy analogous to “contraceptive rights and abortion rights.” The awkward irony is that many partisans of a right to die have spoken out against the McMath family’s decisions. Surely any “right to die” worthy of its name cannot be understood as an obligation to die; rather, it must be a freedom to choose in either direction.

Beyond all these difficulties with regard to the definition of death and the proper role of states, doctors, hospitals, and families in end-of-life decisions, another persistent confusion is brought to light. With regard to a right to die, economism, a conditional logic, underwrites arguments that claim to stand or fall on the basis of unconditional principles, such as “human dignity” or “the sanctity of life.” Bobby Schindler, whose flip-flop about the proper role of the state in right-to-life cases was noted above, has also suggested in the McMath case that the hospital was simply, “unwilling to absorb additional expenses to sustain a life they think has ended.” Others have raised questions about the propriety of the McMath family’s actions in creating a “Jahi McMath Fund” on the website Go Fund Me, which has raised nearly $60,000 so far.

Partisans on both sides of this issue seem to bring up only economic questions when they accuse their opponents of being mercenary. Yet it remains necessary to ask—especially of those who otherwise oppose government-funded health-care—what will happen to Jahi should she still be “alive” when her family’s funds are exhausted? Would the “pro-life” demonstrators outside the hospital where Marlise Munoz was kept on life support be willing to pay higher taxes to guarantee a lifetime of care for her and her (likely disabled) child, as well as others like them nationwide? Now that Marlise has been allowed to die, the obvious, if awkward, question that remains is: Who will be responsible for the two months of care given to her by the hospital against the wishes of her husband and family?

Above all, in observing the difficulties of these and other similar cases, we must not presume to provide some rule by which all such cases, now and henceforward, might be decided in advance. Jacques Derrida famously argued that any responsible or truly ethical decision has to endure the ordeal of the unknown; to decide something merely by following a rule is to decide as a calculating machine.

In the Munoz case in particular, the ultimate culprit is obviously a state law which, for ideological reasons, predetermined a set of hypothetical future decisions with regard to the care of pregnant women who become mentally incompetent.  Such laws, which now prevail in thirty-one states, claim to be guided by an alleged state interest in “respecting life,” and yet—as Supreme Court Justice William Brennan already pointed out more than twenty years ago in another right-to-die case—they provide neither state funding nor insurance programs for the medical care they mandate. All laws do try to set norms for future decisions, but not all the ways they do so are equally tenable—as these disastrous state laws indicate. The fact that laws like this one can be deconstructed is not to be regretted; rather, one can see in such deconstructibility the chance for every kind of historical, ethical and political progress.

To read more about Deconstructing Dignity, click here.

 

 

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