The End of Life

Alicia Ouellette

doi:10.1017/CBO9780511978463.009

7 - The End of Life

Published online by Cambridge University Press: 07 June 2011

Alicia Ouellette

Show author details

Alicia Ouellette: Affiliation:
Albany Law School

Book contents

Get access

Summary

The end of a person's life might come in old age or it might come before. The final moments can be sudden and shocking. They may also be anticipated in the wake of a long illness or the slow degradation of the human body. Medical technology has enabled control over the moment of death in some cases. That control gives rise to questions. When, if ever, is death the best outcome? Who should make decisions about when to use, and when to stop using, technology to extend life? What is the role of surrogate decision making? Under what conditions should the withdrawal of life-sustaining treatment be permitted by surrogate decision makers? And how does the removal of life-sustaining treatment relate to other forms of treatment? Depending on one's perspective, these questions might implicate disability-related concerns including the role of societal perceptions about the worth of people with disabilities in medical decision making.

This chapter presents two cases that arose at the end of a person's life. The first captured the public's attention in a way that few medical decision-making cases do. The death of Theresa Schiavo was a media event. It generated state and federal legislation, garnered the attention of state and federal courts, and was the subject of hundreds of scholarly articles. The second case, that of Sheila Pouliot, was less public but no less important. Both cases raised questions about end-of-life decision-making law and its future.

Type: Chapter
Information: Bioethics and Disability
Toward a Disability-Conscious Bioethics
, pp. 271 - 314

DOI: https://doi.org/10.1017/CBO9780511978463.009 [Opens in a new window]

Publisher: Cambridge University Press

Print publication year: 2011

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Book purchase

Temporarily unavailable

References

Cerminara, Kathy & Goodman, Kenneth, Key Events in the Case of Theresa Marie Schiavo, University of Miami Ethics Programs, June 15, 2009, http://www.miami.edu/ethics/schiavo/schiavo_timeline.html [hereinafter UMiami Timeline] (last visited Oct. 9, 2010)Google Scholar

Conigliaro, Matt, The Terri Schiavo Information Page, Abstract Appeal, May 1, 2005, http://abstractappeal.com/schiavo/infopage.html (last visited Oct. 9, 2010)Google Scholar

Didion, Joan, The Case of Theresa Schiavo, 52 N.Y. Rev. Books, June 9, 2005, http://www.nybooks.com/articles/archives/2005/jun/09/the-case-of-theresa-schiavo/ (last visited Oct. 9, 2010)Google Scholar

The Case of Terri Schiavo: Ethics at the End of Life (Caplan, Arthur L. et.al. eds., Prometheus Books 2006)

Wolfson, Jay, Schiavo's Lessons for Health Attorneys When Good Law Is All You Have: Reflections of the Special Guardian Ad Litem to Theresa Marie Schiavo, 38 J. Health L.535 app. A at 552–581 (2005)Google Scholar PubMed

Shepherd, Lois, Terri Schiavo: Unsettling the Settled, 37 Loy. U. Chi. L.J. 297, 305–306 (2006)Google Scholar

Ouellette, Alicia, When Vitalism is Dead Wrong: The Discrimination Against and Torture of Incompetent Patients by Compulsory Life-Sustaining Treatment, 79 Ind. L. J.1, 14–15 (2004)Google Scholar PubMed

Goldhaber, Michael D., The Law v. What's Right, Nat'l L. J., Apr. 3, 2000, at A1Google Scholar

Johnson, Harriet McBryde, Not Dead at All: Why Congress Was Right to Stick Up for Terri Schiavo, Slate, Mar. 23, 2005, http://www.slate.com/id/2115208, reprinted in Editorial, Overlooked in the Shadows, wash. post, Mar. 25, 2005, at A19Google Scholar

Longmore, Paul K., The Disability Rights Opposition to Assisted Suicide Explained and Critiqued, inEnd-of-Life Issues and Persons With Disabilities144, 151 (Lillie, Timothy & Werth, James L. eds., 2007)Google Scholar

Longmore, Paul K., Elizabeth Bouvia, Assisted Suicide, and Social Prejudice, inWhy I Burned My Book and Other Essays 149 (Temple University Press 2003)Google Scholar

Meisel, Alan, The Legal Consensus About Forgoing Life-Sustaining Treatment: Its Status and Its Prospects, 2 Kennedy Inst. Ethics J.309, 315 (1992)CrossRef Google Scholar PubMed

Meisel, Alan & Cerminara, Kathy L., The Right to Die: The Law of End-of-Life Decisionmaking 2–6 (Aspen Publishers, 3d ed. 2004 & Supp. 2005)Google Scholar

Dresser, Rebecca, Schiavo's Legacy: The Need for an Objective Standard, 35 Hastings Center Rep., May–June 2005, at 20Google Scholar PubMed

Fins, Joseph J., Rethinking Disorders of Consciousness: New Research and Its Implications, 35 Hastings Center Rep., Mar.–Apr. 2005, at 22, 22–24 (arguing that new findings about brain injuries are reason to reconsider the certainty of the PVS diagnosis)Google Scholar PubMed

Fagerlin, Angela & Schneider, Carl E., Enough: The Failure of the Living Will, 34 Hastings Center Rep., Mar.–Apr. 2004, at 30, 30–42 (setting forth compelling evidence that living wills do not serve their intended purpose)CrossRef Google Scholar PubMed

Finucan, Thomas E. et al., Tube Feeding in Patients with Advanced Dementia, A Review of the Evidence, 282 JAMA1365 (1999) (concluding that tube feeding should be discouraged in severely demented patients because the risks outweigh the benefits)CrossRef Google Scholar

Callahan, Christopher M. et al., Outcomes of Percutaneous Endoscopic Gastrostomy Among Older Adults in a Community Setting, 48 J. Am. Geriatric Soc. 1048 (2000) (concluding that gastrostomy tubes can burden patients without providing concomitant benefits)CrossRef Google Scholar

McCann, Robert M. et al., Comfort Care for Terminally Ill Patients: The Appropriate Use of Nutrition and Hydration, 272 JAMA1263 (1994) (recognizing that providing nutrition and hydration to terminally ill patients can cause unwanted and painful side effects and finding that terminating the treatment increases patient comfort)CrossRef Google Scholar PubMed

Sullivan, Robert J., Jr., M.D., Accepting Death Without Artificial Nutrition or Hydration, 8 J. Gen. Internal Med. 220 (1993); british medical association, withholding and withdrawing life-prolonging medical treatment: guidance for decision making (BMJ Books 1999)CrossRef Google Scholar PubMed

Ferris, Frank D. et al., Ensuring Competency in End-of-Life Care: Controlling Symptoms, BMC Palliative Care, July 30, 2002, at 10, available athttp://www.biomedcentral.com/content/pdf/1472–684X-1–5.pdfGoogle Scholar PubMed

Bruera, Eduardo & Fainsinger, R.L., Clinical Management of Cachexia and Anorexia, inOxford Textbook of Palliative Medicine 548, 548 [Doyle, Derek et al. eds., Oxford Univ. Press 1998])Google Scholar

Billings, J. A., Comfort Measures for the Terminally Ill: Is Dehydration Painful?, 33 J. Am. Geriatrics Soc. 808 (1985)CrossRef Google Scholar

Ferris, et al., supra note 105, at 10 (citing Ellershaw, J. E. et al., Dehydration and the Dying Patient, 10 J. Pain Sym. & Management192 [1995])Google Scholar

Musgrave, C. F. et al., The Sensation of Thirst in Dying Patients Receiving IV Hydration, 11 J. Palliative Care17 (1995)Google Scholar

Musgrave, D. R., Terminal Dehydration: To Give or Not to Give Intravenous Fluids?, 13 Cancer Nursing62 (1990)CrossRef Google Scholar PubMed

Burt, Robert A., The Supreme Court Speaks: Not Assisted Suicide but a Constitutional Right to Palliative Care, 337 New Eng. J. Med. 1234, 1234 (1997)CrossRef Google Scholar PubMed

Pratt, David A., Too Many Physicians: Physician-Assisted Suicide After Glucksberg/Quail, 9 (no.2) Alb. L.J. Sci. & Tech. 161, 223 (1999)Google Scholar

Kamisar, Yale, On the Meaning and Impact of the Physician Assisted Suicide Cases, 82 Minn. L. Rev. 895, 908 (1998) (stating that five justices appear to accept a liberty interest in pain relief)Google Scholar PubMed

Meisel, Alan, Pharmacists, Physician-Assisted Suicide, and Pain Control, 2 J. Health Care L. & Pol'y211, 214–215 (1999) (citing Washington v. Glucksberg, 521 U.S. 702, 736–738 (1997) (O'Connor, J., concurring))Google Scholar

Palmer, Larry I., Institutional Analysis and Physicians' Rights After Vacco v. Quill, 7 Cornell J.L. & Pub. Pol'y415, 424–426 (1998) (arguing that Justice O'Connor has opened the door to future litigation regarding barriers to pain relief)Google Scholar PubMed

Tucker, Kathryn L., The Death with Dignity Movement: Protecting Rights and Expanding Options After Glucksberg and Quill, 82 Minn. L. Rev. 923, 935–936 (1998) (arguing that at least five members of the Supreme Court would likely strike down state legislation requiring life-sustaining treatment if it would force dying people to endure excessive pain)Google Scholar PubMed

Crossley, Mary, Becoming Visible: The ADA's Impact on Health Care for Persons with Disabilities, 52 Ala. L. Rev. 51, 57–68 (2000) (recognizing the ADA's possible application in cases in which an individual is denied care that she sought, and discussing the limits of a statute's applicability in rationing schemes)Google Scholar

Mehlman, Maxwell J. et al., When Do Health Care Decisions Discriminate Against Persons with Disabilities?, 22 J. Health Pol. Pol'y & L. 1385 (1997) (distinguishing the difficult question of the ADA's application to medical treatment decisions made by providers when a patient or patient's legally authorized representative declines treatment)CrossRef Google Scholar PubMed

Crossley, Mary A., Medical Futility and Disability Discrimination, 81 Iowa L. Rev. 179, 202–250 (1995) (arguing that the ADA is an inadequate tool for analyzing the merits of futility policies)Google Scholar

Orentlicher, David, Rationing and the Americans with Disabilities Act, 271 J. Am. Med. Ass'n308 (1994)CrossRef Google Scholar PubMed

Peters, Philip G., Jr., Health Care Rationing and Disability Rights, 70 Ind. L.J. 491, 492 (1995) (considering how rationing “can be legally and ethically defended by proof that the excluded treatments are less effective than those which are provided”)Google Scholar PubMed

Peters, Philip G., Jr., When Physicians Balk at Futile Care: Implications of the Disability Rights Laws, 91 Nw. U. L. Rev. 798, 810–819 (1997) (discussing futility disputes)Google Scholar

Garvey, James V., Note, Health Care Rationing and the Americans with Disabilities Act of 1990: What Protection Should the Disabled Be Afforded?, 68 Notre Dame L. Rev. 581, 601–602, 613–616 (1993) (evaluating the Oregon Health Plan's compatibility with the ADA)Google Scholar

Ferris, Frank D. et al., Ensuring Competency in End-of-Life Care: Controlling Symptoms, BMC Palliative Care, July 30, 2002, at 10, http://www.biomedcentral.com/content/pdf/1472–684X-1–5.pdf (“[M]ost experts feel that dehydration in the last hours of living does not cause distress and may stimulate the release of endorphins….”)Google Scholar PubMed

McCann, Robert M. et al., Comfort Care for Terminally Ill Patients: The Appropriate Use of Nutrition and Hydration, 272 J. Am. Med. Ass'n1263, 1265–1266 (1994) (recognizing that providing nutrition and hydration to terminally ill patients can cause unwanted and painful side effects and finding that terminating the treatment increases patient comfort)CrossRef Google Scholar PubMed

Sullivan, Robert J., Jr., Accepting Death Without Artificial Nutrition or Hydration, 8 J. Gen. Internal Med. 220, 222 (1993) (“[I]t is likely that prolonged dehydration and starvation induce no pain and only limited discomfort….”)CrossRef Google Scholar PubMed

Cerminara, Kathy L., Critical Essay: Musings on the Need to Convince Some People with Disabilities that End-of-Life Decision-Making Advocates Are Not Out to Get Them, 37 Loy. U. Chi. L. J. 343, 343 (2005) (describing a woman's response to the Schiavo case: “I am not a cabbage, an onion, nor a cob of corn”)Google Scholar

Hershey, Laura, Killed by Prejudice, The Nation, May 2, 2005, available athttp://thenation.com/doc/20050502/hershey (claiming that describing feeding tubes and ventilators as “life support,” disabled people get put in a different legal category “with less reason to live”)Google Scholar

Johnson, Mary, After Terri Schiavo: Why the Disability Rights Movement Spoke Out, Why Some of Us Worried, and Where Do We Go from Here?, Ragged Edge Mag., Apr. 2, 2005, at 4, available athttp://www.ragged-edge-mag.com/focus/postschiavo0405.html (describing the bigotry of the “better dead than disabled” school)Google Scholar

Morris, Jenny, Tyrannies of Perfection, New Internationalist, July 1992, at 16, available athttp://live.newint.org/issue233/tyrannies.htm (arguing that the explicit motivation for court rulings that allow a severely disabled person to choose death over life with disability “is the notion that physical and intellectual impairment inevitably means a life which is not worth living”)Google Scholar