All posts by Erin Mellett

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?