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A Review By Tom Smith, Ph.D.
From April 30 – May 1, 2006, The University of Pennsylvania Center for Bioethics sponsored their 10th Anniversary Symposium: The Legacy of the Terri Schiavo Case: Why is it so hard to die in America?
“The Center for Bioethics is a leader in bioethics research and its deployment in the ethical, efficient, and compassionate practice of the life sciences and medicine. The Center has become a world-renowned educational and research enterprise that employs over 20 full and part-time faculty with appointments in a number of University of Pennsylvania schools and departments including medicine, law, nursing, business, education, philosophy, psychology, sociology, religious studies, public policy and public health.”
The 10th Anniversary Symposium covered a number of topics that are well worth viewing on the archived webcast. It opened with a moving discussion moderated by Michael Smerconish, J.D., featuring the lead speaker, Michael Schiavo, R.N., the husband of the late Terri Schiavo and Panel Members, Julia Duane Quinlan of the Karen Ann Quinlan Hospice and the mother of Karen Ann, David Cassarat, MD and Rabbi Gerald I Wolpe, both of the University of Pennsylvania. It is in this section of the Symposium that Michael Schiavo and Julia Quinlan recount their experiences with making life and death decisions regarding the treatment and care of their loved ones.
Karen Ann Quinlan was a seminal figure in the history of the “right to die/death with dignity” debate in United States. Her case was the first judicial ruling in the United States, respecting the right of the family, hers being Catholic, to permit the removal of extraordinary, life-sustaining medical treatment from a permanently incompetent patient.
When she was 21, after a night of partying with drugs and alcohol, Karen Ann Quinlan fell unconscious and went into a “persistent vegetative state”. She was kept alive on a ventilator for several months without improvement. Finally, her parents requested the hospital to discontinue active care and allow her to die. The hospital refused. Ensuing legal battles made the newspapers all over the country and set important precedents. The case opened up new lines of legal inquiry and was noted for its rare appeal to religious principles. She and her family were Catholic and so, principles of Catholic moral theology were crucial in deciding the case and influenced new developments in American law and the modern field of bioethics. Quinlan was removed from active life support in 1976, and lived on in a coma for almost a decade until her death from pneumonia in 1985. Two major outcomes of her case were the development of formal ethics committees in hospitals, nursing homes and hospices, and the establishment of advance health directives.
In 1990, Terri Schiavo, who suffered from Anorexia Nervosa, fell gravely ill and suffered respiratory and cardiac arrest and like Karen Ann Quinlan, fell into a persistent vegetative state, suffering brain damage and was dependent on a feeding tube to live. She was institutionalized for 15 years. Finally, her husband, Michael, in 1998, petitioned the court to remove her feeding tube and let her die. Her parents, who were not her legal guardians, opposed this move, asserting that she was actually conscious. The court deemed that she would not have wanted to continue the life saving measures considering the quality of her life. For seven years the battle raged between the courts agreement with Michael versus Terri’s parents, various interest groups, the local Catholic church and politicians; this resulted in national and international attention. After 14 appeals and five suits in Federal District Court, the decision was upheld and she died March 31, 2005.
This case once again opened the discussion of the importance of having a living will, advance directives and power of health attorney. Moreover, incredibly, in July of 2007, doctors were able, through a very daring and dangerous operation, to electronically stimulate the brain of a young man in a persistent vegetative state and brought him back to consciousness to the point where he could recognize people, take food by mouth and even laugh!! This certainly complicates the issue.
From the comments of Julia Quinlan and Michael Schiavo, certain points were made that come from the experience of those who “lived through it”: It is a very, very difficult, gut wrenching and life-changing decision to accept responsibility for stopping tube feeding and artificial hydration when other family members, friends, politicians or the biased media disagree with the decision. There remains the possibility that laws will be passed regulating end-of-life decisions by complete strangers that are currently the personal and private responsibility of family. Caregivers have finally understood that caring for the dying person means caring for the entire family: When death kills one person, it wounds others; and, many families feel overwhelmed by the medical establishment and are not aware of or do not understand the range of choices they have when anticipating the death of a loved one.
References
The University of Pennsylvania Center for Bioethics 10th Anniversary Symposium: The Legacy of the Terri Schiavo Case: Why is it so hard to die in America?
Quinlan, J and Quinlan, J. D. (1977). Karen Ann: The Quinlans Tell Their Story. New York: Bantam Books.
Cranford, R. (2005). “Facts, Lies, & Videotapes: The Permanent Vegetative State and the Sad Case of Terri Schiavo.” J Law Med Ethics, Summer;33(2):363-71.