The Terri Schiavo Case: Desires, Interests, and Bioethics at the Threshold of Life

(Also please note there are two blog posts today, because we had to double up, so see the one below this post)

In her seminal text, ”Can the Subaltern Speak?,” Gayatri Spivak articulates the complex relationships between intellectual representations and the subjects of those intellectual representations. At the risk of oversimplifying an incredibly complex text, one of her main arguments is a delineation between the interest and desire of the subject. What is relevant from this text in relation to the question of bioethics is this difference between interest and desire and what she argues is the responsibility of the intellectual to not turn away from the complex ethical and political implications that come with the intellectual representation of people who desire against their own interests. The subaltern (by definition) cannot speak so the intellectual cannot shy away from the two forms of representation, which are political representation (the interests of the subject), and representation as in re-presenting (as in vocalizing the desires of the subject). To me, this tension between interest and desire underlies all the difficult issues the readings for this week try to address, and consequently, the authors have to work within the tension of representing their subjects and re-presenting them

Applying this to the readings for this week on bioethics, I could not help but think about the ways medicalized subjects and research subjects are effectively made subaltern (by systems of care and research, not by the authors necessarily.) In the pieces we read by Professor Mason, and Adriana Petryna we see the ways in which people become populations undergirding data and in effect anonymized to the point of amorphousness. In the piece by Kaufman (optional reading), we see how the logic of our systems of care ”to move people along” can make individuals subaltern at the end of their lives. For example, people are resuscitated by CPR back into a “threshold of aliveness”(118). There is also Mrs. Krieger who says flat out “I don’t want to live” and that she would prefer to die at home, but is effectively ignored and put into a hospice anyway.

In both and many of the other cases, perceived interests and desires come into conflict with each other. The desires of research participants in the Professor Mason’s piece and Petryna’s piece are effectively ignored and that is justified by certain kinds of public interests. When it comes to Mrs. Krieger her desire to die at home without the stress and anxiety of the various kinds of care keeping her alive, both her daughter and her doctor seem to effectively override those desires through a logic that posits her staying alive as being in her interests.

Arthur Kleinman’s piece on bioethics seems to argue for an open engagement with this tension between desires and interest, and for attending to the process of framing the ethical problems itself. In doing so he argues for a deliberative relativism. The limits of such an argument is that sometimes issues that seem to fit into bioethical frameworks take on political proportions much larger than the issues a bioethicist would normally address such as the case of Terri Schiavo.

http://www.nbcnews.com/health/health-news/bioethicist-tk-n333536

http://www.politico.com/magazine/story/2015/01/jeb-bush-terri-schiavo-114730

http://www.lifeandhope.com/euthanasia

I remember the non-stop coverage of this case on television when I was younger. The fundamental tension was between the husband of Terri Schiavo, a woman who was in a vegetative state for ten years, and her family. The fight to take her off the ventilator or leave her on it eventually went to the Supreme Court, Congress, and even involved President George Bush.

“He believed she would never emerge from her comatose state — as did every doctor who examined her.”

“Terri’s family bitterly disagreed. They still believe to this day that she would have wanted to live, that her husband did not have her interests at heart and that they were unfairly pushed aside in their effort to save her life.”

Both sides of this dramatic political conflict believed they had the best interests of Terri Schiavo at heart or claim they knew what she would have wanted. Terri Schiavo, however, was made subaltern by her medical condition (I mean this as a provocative analytical suggestion, but I do not mean it as a political claim). She could not speak any desires. This might seem like an odd statement considering that she was in a vegetative state, but as Kaufman might say she was still in the “threshold of aliveness” even if she was not alive in the sense of “a state of identifiable awareness or even the most minimally discernible functional or expressive ability.”

I think this is what makes bioethics so difficult. Medical science has taken us so far that we are constantly pushing the “threshold of aliveness” and can gaze further into the earliest and latest stages of life (and aliveness) than ever before. At these bio-temporal extremes, the tension between desire and interests becomes much more stark as desire becomes less and less legible, and as interests lie more and more in the hands of the people and systems around a subject.

I have a lot more that I could write or say but I would rather put some if it in some of following questions in hopes of fostering discussion.

Can we think of bioethics as the opposite of “moving things along,” that is stopping the moving in order to reflect and assess?

Does Arthur Kleinman’s prescription for bioethics leave enough room for reflection on events that become as political as Terri Schiavo’s case?
How does disability at large and more specifically the example of anticipating a child with down syndrome complicate (or not complicate) the issues at hand. What happens Kleinman’s framework when the people most affected by bioethical decisions cannot participate in the negotiation he proposes?

(Edit: missing word in sentence inserted)

10 thoughts on “The Terri Schiavo Case: Desires, Interests, and Bioethics at the Threshold of Life”

  1. Hey Samee:
    Thank you for sharing the videos and news clips on Terri Schiavo. Her story reminds me of Agamben’s now well-known theoretical distinction between bare life (Zoe), which implies a natural form of existence, and bio, the political dimension of life. It seems what is peculiar about Terri’s case is the fact that it is precisely the bareness of life (she was perpetually in vegetative state) that opens up the space for the contestations over the politics—both in terms of the conflicts of interest between kin members and the more macro-level politics which involve the interference of the state and federal government, and the Supreme Court. While I could certainly see your points about how, in the case of Terri, various interest parties compete to claim the ownership over Terri’s life, I’m not sure I fully understand. What do you have in mind in regard to Terri’s desire? Do you mean her desires prior to the accident are what led to her brain death, or are you simply referring to Terri’s survival instincts? Doesn’t the very definition of brain death suggest the cessation of any desires and/or of any capacities to calculate self-interests?
    If we were to examine Terri’s case anthropologically, how could we fairly represent “the interests of the subject” while also vocalizing “the desires of the subject”?
    Also, I find it interesting that you drew (at least implicitly) comparisons between Terri and those who suffer from Down syndrome. I agree with you that Down syndrome perhaps implicates more complex ethical issues, as those who are affiliated with this disorder are aware of it themselves and have a notion of personhood. On the other hand, I’m not sure if I agree with you that Down syndrome, as a form of disability, inhibits individuals from participating in ethical negotiation, given that such negotiations rely not only on linguistic abilities or intellect, but also affects and sentiments, which I’m certain that even individuals with down syndromes could easily access.

  2. Thanks for the post Samee! I think you’re touching on some incredibly important issues with the concept of the subaltern and the increasing rift between desire and interest. You mention “the ways medicalized subjects and research subjects are effectively made subaltern (by systems of care and research, not by the authors necessarily.)” However I think the argument can be made that authors sometimes do (unintentionally) make their subjects subaltern. Indeed, what struck me most while I was reading Rayna Rapp’s work was the complete absence of the Down Syndrome population. For a work that is specifically about decisions related to Down Syndrome why don’t we hear the voices of people with Down Syndrome in Rapp’s work? Why are their voices not included in this discussion that is so very intimately tied to their own lives? It would seem that, because of their disability, they have been pushed to the subaltern. Rapp’s work is effective in what it seeks to do; it reveals the interests of mothers, physicians, researchers. But what are the desires of people with Down’s? People with disabilities need to be included in anthropological inquiry, not silenced by it. There is an growing arena of anthropology dedicated to how to do inclusive work with people with disabilities. Nechama Greenwood, for example, how written about how to do research with people (particularly women) who have intellectual disabilities and how to avoid designating them to the subaltern.

  3. Hi Samee,
    I clicked on the “post comment” button by mistake while I was still writing my response. Sorry about the confusion! Here is the complete version:

    Hey Samee:
    Thank you for sharing the videos and news clips on Terri Schiavo. Her story reminds me of Agamben’s now well-known theoretical distinction between bare life (Zoe), which implies a natural form of existence, and bio, the political dimension of life. It seems what is peculiar about Terri’s case is the fact that it is precisely the bareness of life (she was perpetually in vegetative state) that opens up the space for the contestations over the politics—both in terms of the conflicts of interest between kin members and the more macro-level politics which involve the interference of the state and federal government, and the Supreme Court. I could certainly see your points about how, in Terri’s case, various interest parties compete to claim the ownership over her life. However, I’m not sure I fully understand what you have in mind in regard to Terri’s desire? Are you referring to Terri’s survival instincts? Doesn’t the very definition of brain death suggest the cessation of any desires and/or of any capacities to calculate self-interests?
    If we were to examine Terri’s case anthropologically, how could we fairly represent “the interests of the subject” while also vocalizing “the desires of the subject”?
    Also, I find it interesting that you drew (at least implicitly) comparisons between Terri and those who suffer from Down syndrome. I agree with you that Down syndrome perhaps implicates more complex ethical issues, as those who are affiliated with this disorder are aware of it themselves and have a notion of personhood. On the other hand, I’m not sure if I agree with you that Down syndrome, as a form of disability, inhibits individuals from participating in ethical negotiation, given that such negotiations rely not only on linguistic abilities or intellect, but also affects and sentiments, which I’m certain that even individuals with down syndromes could easily access.

  4. Hi Samee — thanks for an interesting post! I’m so glad you brought up the Terri Schiavo case; it certainly has a place in any discussion related to autonomy, decision-making, and the role of ethics in medicine.

    You asked, “does Arthur Kleinman’s prescription for bioethics leave enough room for reflection on events that become as political as Terri Schiavo’s case?” I think this is a very interesting question. As I was reading Kleinman’s piece, I did somewhat feel like he was trying to describe, mold, and transform bioethics into something that it isn’t. While advocating for a more anthropological, ethnographically informed discipline, he removed a crucial piece of bioethics: that of objectivity, and as a standard for all. To me, Kleinman’s piece almost reads like a romanticized notion, and not at all like a discussion of bioethics as a discipline.

    In that regard, I don’t think Kleinman’s prescription for bioethics is appropriate for dealing with the complex issues created by a case like Terri Schiavo’s. In instances such as those, people want to know what is “right,” and what is “wrong,” and those decisions are made within a larger sociocultural context that moves beyond the individual. I don’t think Kleinman’s idea fully captures that; it is too focused on the micro level, and not capable of making larger generalizations. Sometimes, that’s a very good thing. But in cases that reach national, or international, audiences, a more prescriptive ethic is helpful as a guiding force.

  5. Thanks for the comment Samee! By definition the subaltern cannot speak, and I find this analogy interesting, as the patient in cases like Terri Schiavo can quite literally never speak again. I think that the concept of the “threshold of aliveness” is very interesting, especially in thinking about concepts of personhood, and who is capable of advocating for their own health. When does a person stop being a person who can make decisions? In thinking about cadaveric donation from last week and the definitions of brain death, how do we now define people as alive or dead? I agree with Sun that this is a difficult distinction to make, between desires and interests of the person, especially when they are required to be interpreted through a third party, the family, in deciding what the person would have wanted if they could have foreseen their current circumstances. I think this is worth considering in the context of Petryna’s statement that “ethics should protect people from harm.” But who decides what is harm in Schiavo’s case? Was letting her live or letting her die harm? How is harm contextual?

  6. Hi Samee, thank you for your post. The point about representation and re-presentation is important. I do think, however, there are similarities as well as differences between intellectuals representing the subaltern versus the patients who are rendered powerless in the medical settings. For intellectuals, anthropologists in particular, the problem of representation has been debated for long. The major difficulty is how can we represent our informants, the subaltern in most cases, without once again taking away their voices. Speaking for someone is not necessarily an ethically unproblematic act (hence Biehl’s unedited and admirable inclusion of Catarina’s dictionary). The main job in writing an ethnography, in my opinion, is to provide a holistic account of the informants’ life, without necessarily making the claim that “this is done in their best interest.” Actually, I don’t see how this should be the case if the informants are not the subaltern, but rather people with power such as scientists, politicians, capitalists, etc. The most important thing, then, is to get the representation “right.” What is the right representation, however, is even more complicated. There are various ways to represent something, and perhaps a lot of them are right. I don’t have an answer for that but I’ll leave it at that, for it should be enough to draw the major contrast between intellectual representation and the kind of representation in medical settings.

    Unlike intellectuals, in a medical setting when the physicians and family members speak for the sick, the claim “this is done for the patient’s best interest” must be made in order to justify their actions, whether or not the sincerity of having the patients’ best interest in their mind is true. Also, the problem of “re-presentation” seems to be of little significance in the medical setting between the physician and the family members. For both parties already believe or insist that they know the best of the patient. There is no need to present their knowledge to any external audience.

    As you mentioned at the end, the system and people around the subject get to fulfill their own interest more than the severely sick. Before making a judgment about this, I am actually thinking, Why shouldn’t this be the case? What exactly is wrong, with these people making decisions based on their own interest? Why should a mother not abort an unborn child because that will mean a lifetime of hardship and misery for her? “This is done for his/her/their own good” is a claim that assumes the centrality of the self. It is itself a kind of individualism that finds its expression in decisions of terminating pregnancy or pulling the tube for the patient in a coma. Why, in cases like these, does the sick seem to have more right to have their interest fulfilled even at the expense of others?

  7. Thanks for raising such interesting questions about this week’s readings. I was also struck by the balance (or lack of balance, in many circumstances) between the role of politics and policy vs. the role of the experience of individuals in bioethics discourse. There are both political and personal considerations to be made when assessing issues like physician-assisted suicide, euthanasia, and selective abortion; while the idealistic anthropological approach describes and assesses what individuals must deal with when facing these real decisions, there must also be governmental policies that focus on the Utopian ideal of the ‘greater good’. Kleinman acknowledges that “there is a deeply troubling question in the philosophical formation of an ethical problem as rational choice among abstract principles, because that problem is always the burden of man or woman’s particular world of pain and possibility,” (1). I think this divide between micro and macro, between the individual and society, is an unavoidable aspect of medical ethics.

    You ask, “Can we think of bioethics as the opposite of “moving things along,” that is stopping the moving in order to reflect and assess?” I think that we must view bioethics as both the process of reflection and the decisions and regulations these reflections produce.

  8. Hi Samee, good questions! I just wanted to respond to a couple of the ideas you brought up in your post. Ethical and practical questions are already pushing up against this “threshold of aliveness”. We can already see how this will open up a plethora of conversations about what it means to be at the crux of living and dying, between human and machine, and engaged in decision negotiations. Kaufman articulates in her book, how this tension has already started to introduce new terminologies that are framing “death” differently. She described how medical intervention and hospital protocol have worked together to move patients experiencing the “process of dying” along through a system.
    Like unborn infants, patients that are in the comatose state are unable to make decisions for themselves, although sometime there is the exception like a written directive or something. What we do know is that the final decision is arbitrated by surrogates, the families and medical staff attending the patient. This introduces another layer of complexity to situations of life and death where the decisions are usually irreversible. I think you pose an interesting question – what does it mean for these individuals to not be able to participate in the negotiation process? I do not have an answer but food for fodder, what kinds of decisions would be made if the individuals from either of these two populations were regarded as being fully human? How would this notion of “personhood” influence the bioethical decisions that we are required to make in order to “move things along”?

  9. Hi Samee,

    Thank you for your post and for bringing in an example external to our readings! The Terri Schiavo case is an interesting one, and I feel as though there is still not a way to fully decide what was ‘right’ or ‘wrong’ in that situation.

    The Mrs. Krieger case that you mentioned also caught my attention while reading, possibly due to the fact that I read Kaufman immediately after Petryna. I found it interesting that western society seems almost fixated on bodily autonomy (and informed consent in clinical trials is necessary for true autonomy of participants), but that when it comes to dying that ethical principle is overlooked.

    It seems that the two ideas cannot coincide. Either bodily autonomy is paramount in bioethics and medicine, or it isn’t. However, I think that a lot of people – Americans in particular – shy away from thinking about the implications that a commitment to the ethical principle of autonomy brings up.

    For example, if we hold autonomy as the moral and ethical standard in medicine, then Mrs. Krieger should have been allowed to die at home. Which leads to the discussion of physician-assisted suicide, or abortion, or foregoing biomedical treatments in favor of alternative medicines or prayer. And who has the autonomy over the body of a child, the individual or the parent? Should the mothers in the Scheper-Hughes chapter be allowed to let their sick children die? I suppose that can lead back to the Terri Schiavo case, as well.

    I guess I don’t necessarily have an answer… but the idea of bodily autonomy being the ethical standard when it’s convenient (which is what I feel, from the readings, is somewhat the case) doesn’t sit well with me. And then I don’t feel that any of the authors successfully addressed the debate around who should make the decisions for those who can’t, themselves.

    We can draw from the Scheper-Hughes piece that it is a complex issue, that should be looked at through a sociocultural lens. Maybe it would be unethical for a mother in the U.S. to benignly neglect her child, but is it in northeastern Brazil? So was it truly ethical to take Terri Schiavo off of life support, when the resources to keep her alive were available?

  10. This issue raises up a lot of pressing points. I think what you are getting at is: how can we conceive of bioethics amongst technologies that prolong physical life but do not necessarily the elderly or sick’s voice in way that is legible to others? Who should make these decisions, and how can we conceive of making these decisions as people still fit into the category of being at the threshold of life?

    It would be easy to say, well, the loved one’s should make the decisions on behalf of that person, as they would know that person best. But this can easily be dismissed: do love one’s want that person’s inheritance? How do our cultural understandings of who these loved ones would constitute give decision making capabilities to legible kin whereas not others? This reminds me a bit of the dramatic hospital scene in Sharp’s piece from last week that talked about the brain dead father. His family (daughters, ex-wife) seemed to be emboldened to make decisions for him, whereas, his secret boyfriend was not.

    The only thing to do in these situations is to turn to that person’s relations, unless, the as a society we choose to not use life prolonging technologies. But as Borneman poses in his 2001, “Caring and to Be Cared For” article, these decisions require radically thinking about kinship and moving away from those legible categories that are promoted by heteronormative states. Borneman states, “leave the ways in which humans define care up to them. Care is the source and result of human creativity. We should recognize it as such” (p.583). The implications of this will require greater rigor and research from medical and state authorities. This is of course not ideal, but maybe a step to thinking of people that no longer have a voice, at least, one that others can legibly understand.

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