The Anticipatory Corpse: Medicine, Power, and the Care of the Dying

Notes

Notes Prelude 1. I recount this story with the permission of Nancy’s husband. I realize that when writing a narrative, one leaves out or puts in details to make the point, as Tod Chambers suggests happens in all case histories. See Tod Chambers, The Fiction of Bioethics: Cases as Literary Texts (New York: Routledge , 1999). 2. I say “usual” because there were no standard treatments for this particular tumor at the stage it was found and the aggressiveness with which it manifested itself. 3. See Elisabeth Kübler-Ross, On Death and Dying (New York: Scribner , 2003). Originally published in 1968. See also Elisabeth Kübler-Ross, Death: The Final Stage of Growth (Englewood Cliffs, NJ: Prentice Hall, 1975). The five stages of grief are denial, anger, bargaining, depression, and acceptance . It should be noted that few counselors today think patients should be guided from denial through the various stages to the final stage of acceptance . Yet of all the five stages, only acceptance has a positive connotation. 4. See the special issues of Christian Bioethics devoted to generic chaplaincy: H. Tristram Engelhardt, ed., Christian Bioethics 4(3):231–322 (1998), and Corinna Delkeskamp-Hayes, ed., Christian Bioethics 9(1):3–137 (2003). See also Jeffrey P. Bishop, Philipp W. Rosemann, and Frederick W. Schmidt, “Fides Ancilla Medicinae: On the Ersatz Liturgy of Death in Biopsychosociospiritual Medicine,” Heythrop Journal 49(1):20–43 (2008). 5. Dylan Thomas, “Do not go gentle into that good night,” in The Poems of Dylan Thomas (New York: New Directions, 1952). 314 • 6. See, for example, Sharon R. Kaufman, And a Time to Die: How American Hospitals Shape the End of Life (Chicago: University of Chicago Press, 2005). 7. Wesley J. Smith, Culture of Death: The Assault on Medical Ethics in America (San Francisco: Encounter Books, 2001); John Paul II, Evangelium Vitae: On the Value and Inviolability of Human Life (Washington, DC: U.S. Catholic Conference, 1995). 8. Peter Steinfels, “The Pope in America; Blending Kindness with Sternness,” New York Times, August 16, 1993, A12. 9. David Hollenbach has specifically noted the agonal picture painted in apocalyptic terms in Evangelium Vitae. See his “The Gospel of Life and the Culture of Death: A Response to John Conley,” in Choosing Life: A Dialogue on Evangelium Vitae, ed. Kevin Wm. Wildes and Alan C. Mitchell (Washington, DC: Georgetown University Press, 1997), 37–45. 10. The original Greek meaning was of a public gathering for games, not unlike the Olympic games. 11. The term “agonal” in medicine is usually understood as the struggle to breathe in the waning moments of life. Originally, it was understood as just that, a struggle to stay alive. However, it is generally understood today in a much different way, as characteristic of agony, as in painful suffering. 12. Dale C. Smith, “The Hippocratic Oath and Modern Medicine,” Journal of the History of Medicine and Allied Sciences 51(4):484–500 (1996). 13. Ibid. 14. See Tom Shakespeare, Disability Rights and Wrongs (London: Routledge , 2006). See also Colin Barnes, Disabled People in Britain and Discrimination (London: Hurst and Co., 1991); and Michael Oliver, Understanding Disability: From Theory to Practice (New York: St. Martin’s Press, 1996). 15. Not Dead Yet! is an activist group founded in 1996, after Jack Kevorkian was acquitted of murder charges because of his assistance in the death of two women who, the group believes, suffered from nonterminal disabilities . http://notdeadyetnewscommentary.blogspot.com/ (accessed February 12, 2008). 16. For instance, the American Society for Bioethics and Humanities meeting was delayed in starting due to a sit-in protest in Albany, New York, in summer 2006. 17. See Stephen D. Edwards, “Prevention of Disability on the Grounds of Suffering,” Journal of Medical Ethics 27:380–382 (2001). See also Solveig Magnus Reindal, “Disability, Gene Therapy, and Eugenics—A Challenge to John Harris,” Journal of Medical Ethics 26:89–94 (2000). 18. See Wendy J. Gagen and Jeffrey P. Bishop, “Ethics, Justification, and the Prevention of Spina Bifida,” Journal of Medical Ethics 33(9):501–507 (2007). No te s to Pag e s 8 –1 0 • 315 19. See Edwards, “Prevention of Disability”; and Reindal, “Disability, Gene Therapy, and Eugenics.” 20. See Jay Dolmage and William DeGenaro, eds., “Responding to ‘Million Dollar Baby,’” Disability Studies Quarterly 25(3) (2005). http://www .dsq-sds.org/article/view/590/767 (accessed February 3, 2011). See also Terri...