Technologically-mediated death and the embodiment of prolonged dying

This week’s readings explore the intersection of technology with healthcare.  In particular, a number of the readings broach the subject of death—what death means, how technology has impacted processes of dying, and how meanings and conceptualizations of death have changed.  I was particularly intrigued by Kaufman’s discussion of “life-prolonging” technologies like dialysis, liver transplantation, and cardiac re-synchronization therapy devices (CRT).  As she argues, the development of these technologies has created a “gray zone” of sorts between life and death.  They offer no cure, but they increase life expectancy.  In other words, they prolong the process (because death is, indeed, a process) of dying.  I thought the following video might be useful in thinking about some of the themes of this week’s readings.  Specifically, the interplay of technology and dying.  In the video, a girl named Claire Wineland candidly discusses her experience living with cystic fibrosis.  She has posted a number of videos ranging in topic from “What it’s like to be in a coma” to “Tips on interacting with a sick person.”  In this video, however, she talks about her life expectancy:

https://www.youtube.com/watch?v=mHfKs6n-mOo

As Caitlin notes, cystic fibrosis is a terminal and progressive disease.  However, “it’s not death or no death.”  Caitlin argues “it is how much you work on your own health that directly determines how long you’re gonna survive.”  Not only that, but if you don’t do the therapeutic work, “doctors are probably gonna guilt you and make you feel terrible for letting yourself die.”  Responsibility is placed firmly in the lap of the sick individual.  Death is not an acceptable choice.  If there are opportunities to avoid dying–usually presented through technological intervention–those opportunities must be taken advantage of.  As Kaufman notes:  “we must because we can” (164).  Where does this unflagging impetus towards sustaining life stem from?  Do we sustain life because we “can” or is there a deeper cultural reasoning?  A moral impetus?

Another issue this video brings up is the embodied experience of dying—something this week’s articles did not directly address.  While Sharp discusses the social process of dying, she does not attend to the lived experience of a prolonged, technologically-mediated death.  In the video, Caitlin mentions that “so much energy needs to be put into staying alive, but yet you know you’re not really going to.  Buying yourself more and more time, but it’s exhausting.”  This brings up the question, what kind of life has value?  What happens when you’re dying faster than everybody else and you know it?  Caitlin mentions:  “I’ve lived my whole life in this bubble of ‘you’re going to die soon.’”  What kind of impact does that knowledge have?  How is a prolonged death physically embodied?  Furthermore, how is a malleable life expectancy embodied?  Caitlin notes:  “Every single time that I get close to that point that I’m supposed to die there’s new technology that comes out, new medicine, new ways of treating cystic fibrosis and then presto! I live for another five years.”  What effects does this uncertainty of survival have on the individual?  Their social network?  Their physicians?

8 thoughts on “Technologically-mediated death and the embodiment of prolonged dying”

  1. Thanks for your post, Erin! I had a similar response to this week’s readings, and it brought me to think a lot about the concept of QALY’s, or quality adjusted life years, that policy makers often use when determining the relative value of a treatment option. According to NICE (the The National Institute for Health and Care Excellence, an independent organization in the UK and Wales that decides which drugs and treatments are available on the National Health Service), a QALY is “calculated by estimating the years of life remaining for a patient following a particular treatment or intervention and weighting each year with a quality-of-life score (on a 0 to 1 scale). It is often measured in terms of the person’s ability to carry out the activities of daily life, and freedom from pain and mental disturbance,” (1). While QALY’s are a constant source of debate in the medical and political communities as they are primarily used for cost-effectiveness research, they do present an interesting option for measuring and assessing the ‘value’ of health interventions that actually includes the personal and familial embodiment of illness and disease. For those that want to know a bit more about the use of QALY’s in the US and abroad, this article (http://content.healthaffairs.org/content/28/5/1366.full) is a good read.

  2. Thanks for an interesting post, Erin! Like you and Lacey, I began thinking a lot about end of life care as I was reading for this week. More specifically, several of the author’s arguments made me wonder about our aging population, how that population utilizes healthcare resources, and how the technological imperative is serving, in a way, to disrupt the quality of care that elderly folks are receiving.

    I’m not an expert in health services research, but my understanding is that elderly populations tend to consume more health resources, based on dollars spent, than any other demographic. This is, of course, a seemingly natural phenomenon – since our country’s dominant concept of aging is very much linked to the development of illness and disease. So, lots of health resources — in terms of services, direct patient care, and use of technologies — are being directed towards the elderly.

    However, as you mentioned in your post, these fancy (and in most cases, expensive) technologies only prolong the process of death. By extending the period of time that elderly folks are sick, and by not making them any less sick, the costs per person continue to rise. Even more so, the costs are continuing to rise because these “life-saving” technologies are being pushed in hospitals and doctor’s offices onto sometimes reluctant recipients, which is an important moral boundary to think about.

    I also just wanted to mention the video that you posted. I was actually really uncomfortable as I watched it, and I think that speaks to the almost reflexive reaction one has to discussions of personal mortality and life expectancy. So I wonder — what is it like to have to actually think about your own life expectancy, weigh the pros and cons, when thinking about treatment options? There is such a visceral reaction to longevity that I wonder how anyone, elderly or not, could make a decision that goes against that grain. And so, despite my analytical critique of technology as a creator of further problems, perhaps faced with making a decision of my own, I would think differently.

  3. Thank you for your thought-provoking blog post, Erin.

    In the first part of your blog, you asked if sustaining life is because we “can” or is there a cultural reasoning. My understanding is, “we sustain life because we can” is already deeply cultured. The U.S. seems to me have a culture of pride over high-end technology (by pride I mean in some countries the development of technology is more as a result of imminent external threat of, say, invasion). Sustaining life, if this kind of pride does exist, is a victory against nature. And this kind of pride, is socially and culturally specific. For instance, in Buddhist culture, sustaining life may not be as desirable. Buddhism emphasizes that the life one is living is misery, pain, and suffering. Only after death can one enter the zone of eternal joy. Firm believer in Buddhism, then, may peacefully embrace the coming of death, which for them means the end of suffering.

    In the last part of your post you asked, “What kind of impact does that knowledge [of knowing yourself if dying faster than anyone else] have?” I was instantly reminded of a Brazilian novel I read for a literature class called Veronika Decides to Die. In that novel, Veronika took a lot of pills to commit suicide without success. The doctor told her, although she didn’t end up dead, her brain was irrevocably damaged, and she could die any day. From then on, Veronika lived every day as if it were her last, and broke free from the constraints society previously put on a woman living at a particular historical moment in Brazil. In this case, the knowledge of imminent death is liberating. Of course, what the author tries to say is that death seems to be the only way in which rebellion against society and norms will not have a repercussion. Caitlin, however, isn’t fighting against social norms. Or is she? Isn’t surviving a social norm? The media appraises repeatedly inspirational stories of patients living with terminal diseases, and the message is quite clear. You need to stay alive.

    Here is where I’m confused. Weeks after weeks, we read about how multiple institutions are created to rid society of unproductive, unwanted, bodies. Why, then, is the obsession of staying alive being reiterated over and over again? It is not far-fetched to argue that in our times, “being useful” is often used as the standard of judging whether a life is worthwhile or not. In TV shows and movies, individuals with disabilities are frequently portrayed as either the self-loathing social burdens, or as the fighter, striving to succeed despite their misfortune, like Forrest Gum. What, then, does it mean to be alive and “useless”? I don’t mean it from the individual’s perspective, for it is really not up to anyone else but ourselves to decide what that means if we were “alive and useless.” Rather, my confusion lies mostly in the social logic where productiveness and persistence in life no matter what coexist.

  4. Thanks for the post Erin.

    The issue of death is something I’ve also been thinking about as it comes up in the readings. The question what kind of life is valuable enough to continue both for the individual going through the process of death and for the loved ones around a person is a really thought provoking question. It is something I have been thinking about in relation to a past reading by Taylor and her account of her mother’s experience with Alzheimer’s and how that has affected the social relation around her and her mother. I have also been thinking about disability in relation to conceptions of valuable life and the process of death. I wonder if in some ways aside from chronic diseases which eventually lead to biological death if the acquirement of a disability leads to stigma and relationships that parallel death and the valuation of life.

    Going further, I also am wondering outside of any medical context what different kinds of socio-political positions lead one to imagine that death is a risk worth taking to counter the limitations different forms of oppression place on life. Can we think of revolutions, rebellions, and resistance within this kind of paradigm. The kinds of decisions that are made to do what it takes to extend life or to decide that it is worth risking what you have to build a better one.

  5. Erin, these are really insightful and interesting questions you pose. The lived experience of dying is something that I think needs greater attention, especially in relation to the elderly that continual face the prolonging of life with new medical technologies.

    I think one interesting thing that happens with these technologies is that the physical body starts to die (but is kept going by a thin tether) and the social body remains in tact. Of course, the mind starts to fade eventually depending on the chronic disease in question, however, it is also plausible that the mind will still be sharp and in tact. This is kind of the opposite situation that we see in Taylor’s article with Alzheimers patients. Alzheimers patients experience social death prior to physical death.

    This is an interesting position to be in. I can imagine that hospice and end of life care treatment facilities deserve greater attention. As far as I know, there has not been much ethnographic attention paid to them. It is interesting to me, also, how end of life care facilities are a new phenomenon that are spreading across the world. Iran now has many–and there is much stigma attached to putting the elderly in them. Here is an example of the most famous, non-profit one that helps those with limited financial means:

    http://kahrizak.ca/index.php/kahrizak-iran/

    Perhaps, in some experiences, growing old with chronic diseases and alongside medical technologies can start to feel like a “zone of abandonment.” But perhaps, in other situations, it can be experienced as something much different. I think cross-cultural studies on aging (with a focus on the elderly) can lead us to interesting conclusions about how life elongation is experienced in different contexts.

  6. Hi Erin,

    Thank you for your questions.

    After digesting some of the broad themes presented in the scholarship of Davis-Floyd (2003), Inborne (2003), Singh (2016); I am unsettled by Kaufman’s phrase that you highlight“ we must because we can” (2015). Prolonging life like people’s reluctance to reconcile with infertility for whatever reason presents an array of issues such as perpetuating class disparities. “Some of us” have that luxury to take advantage of technological interventions that may be life-sustaining but this privilege is not universal. I recently watched a Korean drama, where the loving father of two ill children contemplated suicide in order to pay for the life-saving hospital treatments that would be provided if the children were orphans. Having exhausted all other financial recourses, he reasoned that his death would be justifiable because the sacrifice would allow his children the opportunity to live theirs. This example was striking because it made me think of the difficult moral, social, economic, and political implications that would have occurred if the father would have died for his children. What if he decided to live for himself and let the illness consume his children because he had no resources to stay in the hospital? Would he be considered a good father or a bad one by putting his own life on the line?

    On a separate note, I cannot answer where this unflagging impetus towards sustaining life stems from but I can point out that it is a very pervasive idea that in some societies. Living for the sake of living terrifies some people. I imagine that enculturation teaches us that living requires self-actualization. Societal expectations of what people need to accomplish to have fulfilling lives may also be another reason we are motivated to stay alive. A narrower example, that strikes me, here in the US the preservation of life is an “unalienable right” spelled out in the Declaration of Independence. Cited as “unalienable rights”, or fixed rights endowed by God, self-preservation is inseparable from our humanity and God’s design. Judeo-Christian doctrine tangentially observes suicide and homicide as sin, or a challenge to the will of God. My understanding is that redemption cannot happen for a person that takes away life in any(?) form. Nevertheless, policing would suggest that there are exceptions on Earth when it would be justifiable, such as acting in self-defense. Life in itself could be perceived as a commodity. People take out life insurance claims knowing that we are not going to be immortal. In this case there would be a benefit that extends beyond the life of a person. The tension between life and death have different values depending on the context but the advent of life-sustaining technologies is going to change what this means in various ways.

    Lastly, I was intrigued by your question about the implications of uncertainty surrounding survival. This uncertainty, either part of the natural course of events or manufactured artificially by machines, bears upon more than just the individual. To go back a few weeks on our discussions of care, I could see how Kleinman, Das, and Locke’s (1997) concept of social suffering could realize itself. Parents carrying for a patient with unknown time left to live on life-sustaining equipment would be an exhausting experience emotionally and physically. There is closure in “pulling the plug” for the family but also a messiness that cannot be repaired for the individual in this situation. This grey area is interesting because life and death are very perceived as categories of distinction when it is all very complicated.

  7. Hey Erin:

    Thank you for sharing the video! I want to further discuss the question you posed about the embodiment of dying and death. Interestingly, what strikes me most about Caitlin’s video is not how she embodies dying, but how much she embodies life (eg. she looks uplifting, cheerful, …and a little hyper, but not weak, fragile, or confused). Caitlin even mentions in the video herself that most of the time, death is not what occupies her mind in her everyday life. Just like most teenagers, she blurts out that what scares her most is not the confrontation with death tomorrow, but to live for another 50 years. So my question is, yes, unfortunately, Caitlin is dying, but does she embody dying and death? How is the embodiment of dying and death manifested in the physical appearances, behaviors, or bodily movements of a person? How is it manifested in ethnographic encounters more broadly?
    While Caitlin talks about her experiences of dying mostly within the biomedical model (e.g. doctors make her feel guilty if she does not strive to survive and accept new medicines and medical technologies), I also think it is, at least partially, her efforts to try to integrate and reconcile this biomedical model with other competing philosophical and ethical standings on death that resulted in her struggle. In other words, Caitlin realizes that she desires something more meaningful in an existential sense, and this desire does not originate from the biomedical explanation of death. This makes me wonder: Is the biomedical model of dying and death the only model that is possible to be embodied? Is it possible to embody, or could a body contain multiple, even conflicting medical/cultural ideologies? For example, could we embody forms of sociality or ethics that contradict the biomedical explanatory model of death or dying? And, how do our bodies respond to such conflicts or contradictions?

  8. This was a really powerful video, Erin – thanks for sharing, and for this discussion.
    I’m glad the issue of embodiment was raised here, since as you all note, the ethnographies we read (sort of strangely, now that I think about it), didn’t really get very much at the embodied experience of integrating a technology into one’s body, and how that then intersects with the embodied experience of dying. There is a bit of this elsewhere in Kaufman’s book, where she recounts several interlocutors describing what it’s like to get a sudden jolt from an implanted defibrillator, for example. But this issue of embodied dying as mediated by technology is a really interesting and I think understudied one (if anyone is still looking for a dissertation toipc…)
    Yuezhu’s comment also points to I think another critical tension in studying embodiment, which is the presentation of one’s external body, compared with the internal experience of one’s bodily sensations. I too was struck by Caitlin’s presentation as a perky teenager from the outside, with the oxygen apparatus the only sign that there is something wrong with her. This contrasts sharply with her repeated assertions that she is dying. As ethnographers, how do we square our interlocutors’ self-presentations of their bodies with the internal workings that they may or may not try to describe? We talk about inequality for example being inscribed on the body, but how can we access the *felt* embodiment of inequality, as opposed to what we can observe?

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