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The Name of Terri Schiavo Will Be Remembered,As Is the Name Of Advance-Directive Planning: Not Just for Patients Anymore… LYNN YETMAN, RN, MA, HCS-D, COS-C, LNC hen I wrote a commentary for Home Early biomedical ethics focused on the rights of the Healthcare Nurse in the August 2004 competent patient to choose or to refuse various Wissue, “Helping Patients Make Their forms of medical care, which for the first time in- Wishes Known,” I never imagined I would be writ- cluded life-prolonging therapies. There was much ing a follow-up 18 months later. Those of us living discussion regarding the value of patient autonomy. in St. Petersburg, Florida were at ground zero for Around 1970, the earliest form of the living will the publicity surrounding the case of Terri Schi- was introduced (NIH, 1995). Then in 1983, the avo, a Florida woman who, in February of 1990, ex- President’s Commission for the “Study of Ethical perienced cardiac arrest and lapsed into what and Legal Problems in Medicine and Biomedical medical experts called a “persistent vegetative and Behavioral Research” issued a highly influen- state” (Levesque, 2003). Newspapers throughout tial report entitled Deciding to Forego Life-Sustain- the country, and especially here in Florida, were ing Treatment. This was the first time the generic filled with the legal maneuvers and other details term advance directives was used. In 1987, as tech- of the situation as it slowly un- folded. The very first article on Terri Schiavo appeared 15 years ago, on November 15, 1990 (Wil- son, 2005). As the Schiavo case The name of Terri Schiavo will be remembered,as is the was bounced back and forth be- tween the judicial and legislative name of Karen Ann Quinlan,for raising the consciousness branches of our government, I couldn’t help but wonder, “What if of the entire world regarding end-of-life decisions. 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 nology continued to advance, Congress issued what became the “Patient Self-Determination Act” two more reports, and these reports outlined eth- of 1991, and few people had ever heard of a living ical concerns regarding the use of life-sustaining will. technologies (NIH, 1995). During the 1960s, modern medicine introduced The development of the policies regarding ad- a number of technologies that we take for granted vance directives can be traced back to two prece- today. This new technology included cardiopul- dent-setting court cases. The first and most famous monary resuscitation, mechanical ventilation, and was the case of Karen Ann Quinlan, who, in 1975, renal dialysis, which for the first time were capa- ceased breathing and was placed on a respirator. ble of prolonging life in critically ill patients. The The New Jersey Supreme Court allowed Ms. Quin- excitement over these “miracles of modern medi- lan’s parents to discontinue the use of a respirator to cine” initially overshadowed concerns about the sustain her life. It was felt that this was a choice she negative impact these technologies could have on would have made for herself (Meisel, 2002). patient autonomy, or about balancing the value of The second, much lesser-known case is that of life’s quality with its quantity (National Institute of Nancy Cruzan, who was in a persistent vegetative Health [NIH], 1995). state following a 1983 automobile accident. Ms. The field of biomedical ethics expanded greatly Cruzan’s husband initially requested that a feed- between 1970 and 1985, in an attempt to keep pace ing tube be placed in her. In 1988, Ms. Cruzan’s with rapidly expanding technological advances. parents requested that the feeding tube be re- vol. 23 • no. 11 • November 2005 Home Healthcare Nurse 751 moved, because they had heard her state verbally surgeon, said the registry’s Web site traditionally that she would not want her life sustained if she receives about 500 hits a day, but with the public- were ever in a vegetative condition. In a 5–4 ruling, ity surrounding the Schiavo case, some days it had the U.S. Supreme Court upheld the Missouri more than 30,000 inquiries (Sadler, 2005). Supreme Court’s decision that prevented the re- The end-of-life care decisions we make today moval of her feeding tube. The Missouri Supreme will assist the medical community, our family Court did not think that Ms. Cruzan’s verbal mes- members, and ourselves for years to come. This sage was adequate. This was the first time the issue is particularly important to baby boomers, Supreme Court heard a “right-to-die” case. This just beginning to enter their advanced years, who decision was overturned in December of 1990, will want to maintain as much dignity and per- when the state of Missouri withdrew from the sonal autonomy as possible. With increasingly case, stating the family had produced “clear evi- longer life spans and medical advances and the in- dence” that Nancy would have wanted to be taken creasing attention to AIDS and Alzheimer’s, dis- off the tube feedings (Taub, 2001). eases that today are believed to be treatable but In 1990, Congress, prompted by concerns simi- incurable, the question of having our final wishes lar to those expressed by the President’s Commis- honored becomes more relevant for everyone. sion report of 1983, and by the low rates of execu- tion of directives among the population, passed Lynn Yetman, RN, MA, HCS-D, COS-C, LNC is a Senior the Patient Self-Determination Act as part of the Healthcare Consultant with Reingruber & Company, a Omnibus Budget Reconciliation Act of 1990 (NIH, CPA and Healthcare Consulting Firm in St Petersburg, 1995). This law became effective on December 1, Florida. Lynn has more than 25 years of nursing ex- 1991, and directs that all patients admitted to perience, specializing in all aspects of home care, Medicare- and Medicaid-certified providers, in- and is certified by both the Board for Advanced Med- cluding hospitals, nursing facilities, hospices, ical coding and the OASIS Certification and Compe- home health agencies, and pre-paid health plans, tence Board. Address for correspondence: Reingruber must receive some form of counseling regarding & Company, P.A., 100 Second Avenue South, Suite their right to refuse medical treatment and their 1200, St. Petersburg, FL 33701 (e-mail: lyetman@re- right to complete an advance directive under the ingruber.com). laws of their state. Patients must be asked whether they already have an advance directive, and if they REFERENCES do, the directive must be made part of the medical Levesque, W. (2003, November 11). Schiavo’s wishes re- record in a manner that ensures easy retrieval in a called in records. St Petersburg Times. Retrieved later emergency. Institutions are also required to January 14, 2005 at: http://pqasb.pqarchiver.com/sp- perform some type of public outreach and educa- times/index.html?ts=1074631420 tion about advance directives. A study conducted Meisel, A. (2002). Quality of life and end-of-life decision- by the General Accounting Office in 1995 con- making. Center of Bioethics & Health Law, University cluded that overall, the law was being imple- of Pittsburgh. Retrieved September 15, 2005 from mented, but the response was low—at that time, EBSCO Host Research Databases: http://web9.epnet. com/resultlist.asp only 10% to 25% of Americans had documented ad- National Institute of Health. (1995). Health services re- vance directives (NIH, 1995). search on advance directives, NIH Guide (Vol. 24, No. The name of Terri Schiavo will be remembered, 9, March 10, 1995). RFA: HS-95-004. Retrieved March as is the name of Karen Ann Quinlan, for raising 25, 2005 at: http:// www.nih.gov/grants/guide/rfa-f... the consciousness of the entire world regarding Sadler, M. (2005, March 26). The Terri Schiavo case has end-of-life decisions. No matter which side of the created sudden interest in living wills. St Petersburg moral, ethical, or political fence you sit on, this Times. Retrieved March 28, 2005 at: http://www.spti- case raises profound and deeply personal ques- mes.com/2005/03/26/Tampabay/Case_has_cre- tions for everyone. It has opened a dialogue across ated_sudd.shtml the nation, which has prompted people to discuss Taub, S. (2001). Departed 1983; at peace 1990. American their wishes with family members and to take the Medical Association, 3(11). Retrieved March 28, 2005 at: http://www.ama-assn.org/ama/pub/category/6803.html steps necessary to formulate advance directives. Wilson, M. (2005, November 24). 15 years ago, Terri “We were overwhelmed,” Dr. Joseph Barmakian, Schiavo’s ‘last hope.’ Series: Word for Word. St. Pe- founder of the U.S. Living Will Registry, reported to tersburg Times. Retrieved March 25, 2005 at: http:// a local newspaper. Dr. Barmakian, an orthopedic pqasb.pqarchiver.com/sptimes/812182441.html 752 Home Healthcare Nurse www.homehealthcarenurseonline.com.
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