If That Ever Happens to Me

If That Ever Happens to Me: Making Life and Death Decisions after Terri Schiavo

LOIS SHEPHERD
Copyright Date: 2009
Pages: 240
https://www.jstor.org/stable/10.5149/9780807888643_shepherd
  • Cite this Item
  • Book Info
    If That Ever Happens to Me
    Book Description:

    Every day, thousands of people quietly face decisions as agonizing as those made famous in the Terri Schiavo case. Throughout that controversy, all kinds of people--politicians, religious leaders, legal and medical experts--made emphatic statements about the facts and offered even more certain opinions about what should be done. To many, courts were either ordering Terri's death by starvation or vindicating her constitutional rights. Both sides called for simple answers.If That Ever Happens to Medetails why these simple answers were not right for Terri Schiavo and why they are not right for end-of-life decisions today.Lois Shepherd looks behind labels like "starvation," "care," or "medical treatment" to consider what care and feeding really mean, when feeding tubes might be removed, and why disability groups, the faithful, and even the dying themselves often suggest end-of-life solutions that they might later regret. For example, Shepherd cautions against living wills as a pat answer. She provides evidence that demanding letter-perfect documents can actually weaken, rather than bolster, patient choice.The actions taken and decisions made during Terri Schiavo's final years will continue to have repercussions for thousands of others--those nearing death, their families, health-care professionals, attorneys, lawmakers, clergy, media, researchers, and ethicists.If That Ever Happens to Meis an excellent choice for anyone interested in end-of-life law, policy, and ethics--particularly readers seeking a deeper understanding of the issues raised by Terri Schiavo's case.

    eISBN: 978-1-4696-0574-6
    Subjects: Health Sciences, Law

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-viii)
  3. ACKNOWLEDGMENTS
    (pp. ix-xii)
  4. INTRODUCTION
    (pp. 1-14)

    In the early months of 2005, Theresa Marie Schindler Schiavo, known as “Terri,” captured the national public spotlight—but she did not know it. Nor, at age forty-one, had she known anything of her previous fifteen birthdays. She was in what doctors call a persistent or permanent vegetative state. When patients are in a vegetative state, doctors believe they cannot experience life in any way—that they are completely unconscious. When the condition is properly diagnosed as permanent, there is no evidence that the patient can ever regain any consciousness; after fifteen years, the chance of recovery, even slight recovery,...

  5. 1 DISORDERS OF CONSCIOUSNESS AND THE PERMANENT VEGETATIVE STATE
    (pp. 15-34)

    Theresa Marie Schiavo was twenty-six years old when she suffered a cardiac arrest for reasons still unknown. Terri grew up in the suburbs of Philadelphia, Pennsylvania, the oldest of three children. She married her first boyfriend, Michael Schiavo, whom she met in college, and they moved to Florida in 1986. Her family followed them there. Terri worked as a clerk for an insurance company while Michael worked in restaurant management. One early morning in February 1990, Michael awoke, found Terri collapsed in the hallway of their apartment, and called 911. Twelve minutes later, at 5:52, paramedics begin resuscitation efforts and,...

  6. 2 LEGAL AND POLITICAL WRANGLING OVER TERRI’S LIFE
    (pp. 35-56)

    Before it was all over, Terri’s parents and husband would accuse each other of outright lying, trying to make money from Terri’s plight rather than looking out for her interests, and even bearing responsibility for Terri’s condition. With respect to the latter, the Schindlers, some years after Terri’s cardiac arrest, accused Michael Schiavo of having physically abused her during their marriage, possibly even strangling her on the night she collapsed. There is no evidence of this. Three separate inquiries by the state attorney’s office, two of them at Governor Jeb Bush’s request, found a “complete absence of evidence that Terri’s...

  7. 3 IN CONTEXT—LAW AND ETHICS
    (pp. 57-76)

    Outside of the specially passed laws and particular facts of Terri Schiavo’s case, Americans have our history, the foundations of our government, our ethical and moral foundations, and our laws. Indeed, one of the most disturbing aspects of the drama was how readily some of our political leaders wanted to make this case “special,” not subject to established rules, not to be guided by orderly judicial process or the benefit of the wisdom from past cases and carefully considered ethical frameworks. This happened partly because thirty-second media images allowed an oversimplification of what the issues really were, as when the...

  8. 4 TERRI’S WISHES
    (pp. 77-95)

    Many of those who supported the removal of Terri Schiavo’s feeding tube have pointed out how much “process” her case received. They have noted, for example, that Terri’s parents had exhausted every legal avenue of relief, that many different courts again and again had confirmed that the law was correctly applied, and that the case was in the courts for seven years. This is all true. But what is often not appreciated is the fact that the essential question about Terri’s wishes was resolved by one judge in one hearing that lasted a few days in 2000. The determination made...

  9. 5 THE LIMITS OF EVIDENCE
    (pp. 96-111)

    As discussed in the previous chapter, we might reasonably ask if the evidence of what Terri Schiavo would have wanted was really all that strong. But the equally important question to ask is why we should presume, in the absence of very strong evidence that she would want to die, that she would want to continue living? Because Terri’s life experience at the time was so profoundly without meaning to her, because she had no hope—not even slight—of recovery, and because the means of keeping her alive were intrusive and endlessly so, why should the burden be on...

  10. 6 THE IMPLICATIONS OF SURROGACY
    (pp. 112-127)

    While it was Michael Schiavo’s preference, and request, that Terri’s feeding tube be removed, it was never hisdecision. As we’ve already seen, under the law, the surrogate speaks for the patient, but it is the patient’s wishes that must direct the surrogate’s expression. Law professor Norman L. Cantor describes the question we should ask as follows: If the patient could become competent for a moment, what would this person tell us he or she would want done? Unless the patient has left a written directive, the surrogate must speak for the patient on this question. Even when the patient...

  11. 7 QUALITIES OF LIFE
    (pp. 128-142)

    At the end of the last chapter, I argued that someone who is in a permanent vegetative state should be treated differently from someone who is terminally ill or someone who is minimally conscious. In doing so, I have opened myself to the charge that I endorse “quality-of-life” distinctions—a perspective that disability rights groups decry and a number of courts have cautioned us against.

    Why are quality-of-life assessments disturbing? Because when a life or death decision is made based on quality of life, it seems that the decision-maker is saying that the life has no value or too little...

  12. 8 FEEDING
    (pp. 143-161)

    Throughout this book, artificial nutrition and hydration has been referred to as “life support” or “life-sustaining treatment” or a “life-prolonging procedure” that might be refused under the same rules as other forms of medical treatment. This reflects an ethical and legal consensus that has existed for at least two decades or more. But for many people, artificial nutrition and hydration is different. Some of those who protested the removal of Terri Schiavo’s feeding tube did so not because they believed that Michael Schiavo was misrepresenting her wishes or that Terri had some degree of consciousness but because they believed that...

  13. 9 THE PRESERVATION OF LIFE
    (pp. 162-172)

    When decisions are made to continue or discontinue life support for people who have lost the capacity to make their own decisions, current law generally places greater value on the preservation of life than on the patient’s self-determination. This has been accomplished through the requirement that the patient be in certain specified physical conditions (terminal illness, permanent vegetative state) and the requirement that a surrogate’s determination that life support be removed be demonstrated by clear and convincing evidence that it is what the patient would have wished (or, in some states, evidence that it is in the patient’s best interests...

  14. 10 RESPECT AND CARE: AN ALTERNATIVE FRAMEWORK
    (pp. 173-188)

    If it is the individual human being who is important and to whom our responsibilities are owed—rather than an abstract preservation of life—how do we best respond?

    The drama surrounding the battle over Terri Schiavo’s feeding tube was rich in visual images. One of the most enduring of these images was that of Terri herself in the videotape that her parents provided to the media—footage that appeared to show Terri responding to her mother’s caring inquiries. Even if one understood that expert doctors who had examined Terri had repeatedly confirmed that she was permanently unconscious, that these...

  15. APPENDIX: THE NATIONAL RIGHT TO LIFE COMMITTEE’S MODEL STARVATION AND DEHYDRATION OF PERSONS WITH DISABILITIES PREVENTION ACT
    (pp. 189-192)
  16. NOTES
    (pp. 193-200)
  17. BIBLIOGRAPHY
    (pp. 201-214)
  18. INDEX
    (pp. 215-222)
  19. Back Matter
    (pp. 223-224)