The situation surrounding Terri Schiavo is replete with complex medical-ethical issues that have caused many of us who have followed the dilemma to bow our heads in frustration, consternation, and compassion. More recently, the release of Terri’s autopsy report and the inscription on her tombstone have galvanized the medical mores. As we reconsider the gyrations of the family, the legal system, and the government, we inevitably (as a mental exercise) place ourselves in Terri’s medical condition and ask of ourselves what we would want done if we were in a similar medical situation. The case of Terri Schiavo will inevitably affect our community and country. In addition, we would do well to consider the personal impact as we reflect on the medical, ethical, legal, and social implications.
The medical facts themselves are extraordinarily simple. About 15 years ago, Terri’s heart stopped beating and her brain was deprived of oxygen for an unknown length of time thereby causing permanent brain damage. Up until the time of death, Terri was able to breath on her own. The only necessary care that she received was artificial nutrition and hydration along with routine medical and standard rehabilitative care.
Over the years, there had been significant controversy regarding such issues as the authenticity of videotapes of her apparent response to various types of stimulation and the diagnosis of Persistent Vegetative State. There was also disagreement amongst medical experts regarding the neurological diagnosis and prognosis. These, as well as other peripheral issues, have elevated Terri’s case to the national level and created a cloud of confusion surrounding the primary ethical dilemma of whether or not the feeding tube should have been removed.
Perhaps the most important issue concerning medical decision-making was that no one knew exactly what Terri Schiavo wanted to have done on her behalf. Terri did not have an advance directive and she did not name a Health Care Agent. In this situation, common sense reasoning, ethics, and the legal system each allow the surviving spouse to be the spokesperson for the incapacitated patient. Florida Law (Browning Case of 1990) recognizes that—unless there is a family dispute—all legally incompetent patients can be denied artificially supplied nutrition and hydration by the guardian without a living will or a judicial hearing. Consequently, both Terri’s husband and her parents had legal standing in claiming to represent Terri’s intent and wishes. As Terri had not spoken for herself (with respect to her medical preferences in the particular medical situation), there was no “clear and convincing evidence” of what Terri would have wanted to happen. This was the simple foundation for the protracted and egregious argument that occurred between Terri’s husband and her parents. Most of the other issues are either superfluous or non-contributory.
As one ponders the disparate dynamics of this medical-ethical issue, one simply cannot avoid the continuous bombardment of terms such as “quality of life” and “dignity at the end of life.” These are especially important aspects of the life with which we are all blessed. It is of utmost importance for each of us to recognize and acknowledge who has the authority and the permission to define these terms with respect to the given life of a person. Neither the legal nor the religious communities have any jurisdiction here. Only the individual person can determine what “quality of life” means to her and what aspects of living give quality to her life. In addition, this notion of the “quality of life” may indeed take on different meaning and different representation at various points in a person’s life. Tragic accidents that happened to persons such as Christopher Reeve and Joni Erickson Tada left both despondent and embracing death. How grateful we are that both of the individuals rose above their affliction. The vision and enthusiasm of these persons is both exemplary and contagious. Is it possible that the handicap released unrecognized talents? How dare any one of us arrogantly state that we can define the “quality of life” for another human being!
The Terri Schiavo case is a tragedy. Our thoughts and prayers have been—and continue to be—with the family of this young woman. Unfortunately, this scenario occurs far too often in hospitals and nursing homes all across our country. In New York—where I do ethics consultations regarding end-of-life issues in a local hospital—dealing with these types of situations becomes extremely complex. “When there is no clear and convincing evidence of the patient’s wishes and no health care agent, nobody may authorize the withdrawal or withholding of life-sustaining treatment—not the family, not the physician or hospital, not even the court or a court-appointed guardian . . . New York law simply does not recognize the authority of third persons, other than a health care agent, to make these decisions.”[1] Because of the New York Health Care Law, my options—if there is no health care agent—are reduced to those based on medical futility criteria, which are grounded in the triad of benefits, burdens, and efficacy.[2] I intentionally elicit what the family knows of the patient’s health care preferences; in this way, I attempt to build consensus. Nevertheless, I am prohibited from following any family directives if a health care agent has not been appointed.
My heartfelt prayer and desire is that each one of us considers carefully our personal healthcare preferences and appoints a health care agent. This is indeed the best way to have our medical desires known and honored. Our life, as well as our end-of-life can be a blessing to those we love.
. . . let us not love (only) with words or tongue, but with actions and in truth (I John 3:18, paraphrase).
References
[1] New York State Bar Association, Legal Manual for New York Physicians, 2003, 337.
[2] Edmund Pellegrino, “Decisions to Withdraw Life-Sustaining Treatment,” Journal of the American Medical Association, Vol. 283, February 2000.