What can we learn from the death of Terri Schiavo?

Terri Schiavo died on March 31, 2005, at the age of 41. Virtually thousands of others died or lay dying on that day throughout the world, yet the death of Terri Schiavo gripped not only the attention of the media throughout the United States and much of the world, but the attention of the U.S. Congress, the U.S. President, the Vatican, and millions in the United States and around the world. Why? Well, in the words of U.S. President George Bush, “The case of Terri Schiavo raises complex issues. . . . Those who live at the mercy of others deserve our special care and concern. It should be our goal as a nation to build a culture of life, where all Americans are valued, welcomed, and protected—and that culture of life must extend to individuals with disabilities” ~The New York Times, March 31, 2005!. Terri Schiavo, in her persistent vegetative state of 15 years duration, was being kept alive, in her Florida hospice bed, with the help of a feeding tube that artificially delivered f luids and nutrition. The attempts of her husband over the last 7 years, in opposition to the wishes of his wife’s parents, to remove the feeding tube and allow his wife to die have created a firestorm of controversy and debate in judicial, medical, political, ethical, moral, and religious arenas. When Terri Schiavo died, some 13 days after the feeding tube was removed, the noted civil rights activist Reverend Jesse Jackson said, “She was starved and dehydrated to death!” ~The New York Times, March 31, 2005!. A Vatican spokesman said “Exceptions cannot be allowed to the principle of the sacredness of life from conception to its natural death” ~The New York Times, March 31, 2005!. Clearly, the death of Terri Schiavo rekindled a variety of debates that were perhaps dormant but unresolved. The political debate in the United States and the appropriateness of steps taken by the U.S. President and Congress will likely continue through the next cycle of elections and the process of selecting and approving judicial nominations. They will also, undoubtedly, inf luence several aspects of medical research and practice including end-of-life care. The religious and moral debates regarding the sanctity of life will continue and also significantly impact on medical research and medical practice. For those interested in reading more about these particular issues I refer you to two excellent pieces in the April 21, 2005, issue of the New England Journal of Medicine ~i.e., Annas, 2005; Quill, 2005!. For clinicians and researchers in palliative care, however, the death of Terri Schiavo has raised some rather specific clinical and research issues that must be addressed. These issues pertain primarily to the experience of suffering in the dying process. Let me brief ly recount the medical facts related to the saga of Terri Schiavo’s dying and death. On February 25, 1990, Terri Schiavo had a cardiac arrest due to hypokalemia that resulted from an eating disorder ~i.e., bulimia and self-induced vomiting!. As a result of sever hypoxia and ischemic damage to her brain, Ms. Schiavo fell into a persistent vegetative state and exhibited no evidence of higher cortical functioning. Computed tomographic scans of her brain showed severe atrophy of her cerebral cortex. Electroencephalograms indicated no activity of the cerebral cortex. Her neurologic examination indicated that she had intact brain stem function, but no cortical function. This was all consistent with a diagnosis of persistent vegetative state. Ms. Schiavo required artificially delivered f luids and nutrition, through the use of a feeding tube, to remain alive. The issue of whether Ms. Schiavo could experience “suffering” during the period of time when she was being “kept alive artificially in a persistent vegetative state” has been raised, particularly by proponents of the right to have medical treatments such as a feeding tube removed in situations where they only prolong the dying process ~perhaps also prolonging suffering!. As Timothy Quill wrote in his essay entitled, “Terri Schiavo—A Tragedy ComPalliative and Supportive Care ~2005!, 3, 1–3. Printed in the USA. Copyright © 2005 Cambridge University Press 1478-9515005 $16.00 DOI: 10.10170S1478951505050017