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

By Lois Shepherd | Go to book overview

5
THE LIMITS
OF EVIDENCE

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 proving, to such a high standard, that she would have wanted to die? Why might not the burden, in these extreme situations, be equally on showing that she would have wanted to continue living in such circumstances? Might we not at least equally assume that she, like a majority of us, would want to die? In fact, to many people, showing the deepest respect for life and protecting what makes life worth living is taking care to avoid suspending someone between life and death indefinitely for purposes that do not enrich that life.

For people in a permanent vegetative state, the common legal standard requiring proof of their wishes to end life support by clear and convincing evidence means that instead of trying to respect their wishes, we are already assuming an answer—that they will stay “hooked up”—instead of seeking to weigh their wishes in a more balanced way.

The touted solution to avoid this legal assumption and regain control over treatment decisions is the living will. But when policymakers, the media, and others direct everyone toward living will forms, they are making a lot of unfounded assumptions about the way people see these decisions and the role of their loved ones, and

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

Table of contents

  • Title Page iii
  • Contents vii
  • Acknowledgments ix
  • Introduction 1
  • 1: Disorders of Consciousness and the Permanent Vegetative State 15
  • 2: Legal and Political Wrangling Over Terri's Life 35
  • 3: In Context— Law and Ethics 57
  • 4: Terri's Wishes 77
  • 5: The Limits of Evidence 96
  • 6: The Implications of Surrogacy 112
  • 7: Qualities of Life 128
  • 8: Feeding 143
  • 9: The Preservation of Life 162
  • 10: Respect and Care an Alternative Framework 173
  • Appendix - The National Right to Life Committee's Model Starvation and Dehydration of Persons with Disabilities Prevention Act 189
  • Notes 193
  • Bibliography 201
  • Index 215
  • Studies in Social Medicine 223
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