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When I wrote a commentary for Home Healthcare Nurse in the August 2004 issue, "Helping Patients Make Their Wishes Known," I never imagined I would be writing a follow-up 18 months later. Those of us living in St. Petersburg, Florida were at ground zero for the publicity surrounding the case of Terri Schiavo, a Florida woman who, in February of 1990, experienced cardiac arrest and lapsed into what medical experts called a "persistent vegetative state" (Levesque, 2003). Newspapers throughout the country, and especially here in Florida, were filled with the legal maneuvers and other details of the situation as it slowly unfolded. The very first article on Terri Schiavo appeared 15 years ago, on November 15, 1990 (Wilson, 2005). As the Schiavo case was bounced back and forth between the judicial and legislative branches of our government, I couldn't help but wonder, "What if Terri actually had written a living will?" When she lapsed into a coma on the morning of February 25, 1990, Congress was still in the process of writing what became the "Patient Self-Determination Act" of 1991, and few people had ever heard of a living will.


During the 1960s, modern medicine introduced a number of technologies that we take for granted today. This new technology included cardiopulmonary resuscitation, mechanical ventilation, and renal dialysis, which for the first time were capable of prolonging life in critically ill patients. The excitement over these "miracles of modern medicine" initially overshadowed concerns about the negative impact these technologies could have on patient autonomy, or about balancing the value of life's quality with its quantity (National Institute of Health [NIH], 1995).


The field of biomedical ethics expanded greatly between 1970 and 1985, in an attempt to keep pace with rapidly expanding technological advances. Early biomedical ethics focused on the rights of the competent patient to choose or to refuse various forms of medical care, which for the first time included life-prolonging therapies. There was much discussion regarding the value of patient autonomy.


Around 1970, the earliest form of the living will was introduced (NIH, 1995). Then in 1983, the President's Commission for the "Study of Ethical and Legal Problems in Medicine and Biomedical and Behavioral Research" issued a highly influential report entitled Deciding to Forego Life-Sustaining Treatment. This was the first time the generic term advance directives was used. In 1987, as technology continued to advance, Congress issued two more reports, and these reports outlined ethical concerns regarding the use of life-sustaining technologies (NIH, 1995).


The development of the policies regarding advance directives can be traced back to two precedent-setting court cases. The first and most famous was the case of Karen Ann Quinlan, who, in 1975, ceased breathing and was placed on a respirator. The New Jersey Supreme Court allowed Ms. Quinlan's parents to discontinue the use of a respirator to sustain her life. It was felt that this was a choice she would have made for herself (Meisel, 2002).


The second, much lesser-known case is that of Nancy Cruzan, who was in a persistent vegetative state following a 1983 automobile accident. Ms. Cruzan's husband initially requested that a feeding tube be placed in her. In 1988, Ms. Cruzan's parents requested that the feeding tube be removed, because they had heard her state verbally that she would not want her life sustained if she were ever in a vegetative condition. In a 5-4 ruling, the U.S. Supreme Court upheld the Missouri Supreme Court's decision that prevented the removal of her feeding tube. The Missouri Supreme Court did not think that Ms. Cruzan's verbal message was adequate. This was the first time the Supreme Court heard a "right-to-die" case. This decision was overturned in December of 1990, when the state of Missouri withdrew from the case, stating the family had produced "clear evidence" that Nancy would have wanted to be taken off the tube feedings (Taub, 2001).


In 1990, Congress, prompted by concerns similar to those expressed by the President's Commission report of 1983, and by the low rates of execution of directives among the population, passed the Patient Self-Determination Act as part of the Omnibus Budget Reconciliation Act of 1990 (NIH, 1995). This law became effective on December 1, 1991, and directs that all patients admitted to Medicare- and Medicaid-certified providers, including hospitals, nursing facilities, hospices, home health agencies, and prepaid health plans, must receive some form of counseling regarding their right to refuse medical treatment and their right to complete an advance directive under the laws of their state. Patients must be asked whether they already have an advance directive, and if they do, the directive must be made part of the medical record in a manner that ensures easy retrieval in a later emergency. Institutions are also required to perform some type of public outreach and education about advance directives. A study conducted by the General Accounting Office in 1995 concluded that overall, the law was being implemented, but the response was low-at that time, only 10% to 25% of Americans had documented advance directives (NIH, 1995).


The name of Terri Schiavo will be remembered, as is the name of Karen Ann Quinlan, for raising the consciousness of the entire world regarding end-of-life decisions. No matter which side of the moral, ethical, or political fence you sit on, this case raises profound and deeply personal questions for everyone. It has opened a dialogue across the nation, which has prompted people to discuss their wishes with family members and to take the steps necessary to formulate advance directives. "We were overwhelmed," Dr. Joseph Barmakian, founder of the U.S. Living Will Registry, reported to a local newspaper. Dr. Barmakian, an orthopedic surgeon, said the registry's Web site traditionally receives about 500 hits a day, but with the publicity surrounding the Schiavo case, some days it had more than 30,000 inquiries (Sadler, 2005).


The end-of-life care decisions we make today will assist the medical community, our family members, and ourselves for years to come. This issue is particularly important to baby boomers, just beginning to enter their advanced years, who will want to maintain as much dignity and personal autonomy as possible. With increasingly longer life spans and medical advances and the increasing attention to AIDS and Alzheimer's, diseases that today are believed to be treatable but incurable, the question of having our final wishes honored becomes more relevant for everyone.




Levesque, W. (2003, November 11). Schiavo's wishes recalled in records. St Petersburg Times. Retrieved January 14, 2005 at:[Context Link]


Meisel, A. (2002). Quality of life and end-of-life decision-making. Center of Bioethics & Health Law, University of Pittsburgh. Retrieved September 15, 2005 from EBSCO Host Research Databases:[Context Link]


National Institute of Health. (1995). Health services research on advance directives, NIH Guide (Vol. 24, No. 9, March 10, 1995). RFA: HS-95-004. Retrieved March 25, 2005 at: [Context Link]


Sadler, M. (2005, March 26). The Terri Schiavo case has created sudden interest in living wills. St Petersburg Times. Retrieved March 28, 2005 at:[Context Link]


Taub, S. (2001). Departed 1983; at peace 1990. American Medical Association, 3 (11). Retrieved March 28, 2005 at:[Context Link]


Wilson, M. (2005, November 24). 15 years ago, Terri Schiavo's 'last hope.' Series: Word for Word. St. Petersburg Times. Retrieved March 25, 2005 at:[Context Link]