STORY BYThe endlessly televised political, medical, religious, ethical, and legal drama that swirled around the life and death of Terri Schiavo forced us to ask, "What would I want?" More to the point, "What are my choices?"
Following a cardiac arrest and a month-long coma, Schiavo opened her eyes and slipped into what was diagnosed as persistent vegetative state (PVS). That was 15 years ago. On March 18, 2005, her feeding tube was withdrawn by court order and she died almost two weeks later.
What galvanized the nation was that Schiavo had no written living will or advance medical directive. Others were left to interpret her wishes and determine her fate. A more collective tragedy? About two-thirds of our population has no living will, yet thousands of PVS patients live in this twilight state.
The high profile cases are unusual, explains James C. Grotta, M.D., the Roy M. and Phyllis Gough Huffington Distinguished Chair in Neurology, at The University of Texas Medical School at Houston. PVS though, is not uncommon. U.S. hospital estimates show between 15,000 and 35,000 PVS patients are sustained at any given time.
Neurologists say while PVS patients have an operating brain stem (which directs functions such as breathing), the cerebral cortex (which directs thinking skills) is often damaged beyond recovery.
A bewildered public is now asking questions that only bring more questions about end-of-life issues. Chief among them are the basic differences in various levels of brain injury.
No one-size-fits-all answer exists. In fact, often, there are no concrete, clear-cut responses. So, in the absence of absolutes, experts agree that it is best to make medical decisions for oneself (within the legal parameters) based on one's own values, ethics and spiritual beliefs.
Eugene Boisaubin, M.D., a UT Medical School ethicist for Clinical Research and professor of medicine, says "If a person has a living will—which is simply a written instruction spelling out any treatments a person does or does not want in the event he is unable to speak for himself—then there is seldom a problem. I can go to the family that is worrying about what to do, and say, 'I am sorry if you are having trouble with this. But your loved one had a living will and, as her physician, I must honor those wishes.'"
If the patient does not have a living will, things become more complicated, Boisaubin admits. "But again, I shift the responsibility from the family to myself regarding such an assessment. I would say, 'As your mother’s physician I would like to recommend that such and such treatment not be continued. How do you feel about that?'"
"The recent headline news on life and death struggles—on right-to-die issues—have all the elements of a Shakespearean tragedy and touch those key components of being able to determine personal healthcare choices," Boisaubin says. "It is about having control over one's life and destiny."
Well, yes and no, says Rabbi Samuel Karff, associate director of the UT McGovern Center for Health, Humanities, and the Human Spirit and rabbi emeritus at Congregation Beth Israel. “For orthodox religionists, the principle of autonomy is not as important as adherence to the norms of the tradition which are regarded as divinely sanctioned—answering to a higher power."
Generally, Karff says, "Clergy make a distinction between active and passive euthanasia. Direct intervention to end the life of a terminal patient is normally forbidden, but when medical authorities conclude that active medical intervention is no longer extending life but prolonging the process of dying, then the journey to biological death should be allowed to take its course without the benefit of anything but comfort care. Specific texts in the various traditions support this position."
There are differences among the various religious groups, he says. "For example, Orthodox Christians and Jews would be more restrictive about removing life support systems once they were in place than Reform Judaism and more liberal Christian denominations would be."
"Ethics," says Amy O. Calvin, Ph.D., R.N., "are guided by what defines us as individuals." Certainly, something can be legal but not necessarily ethical. To determine what an unconscious patient without a medical directive might want, "the nurse is uniquely positioned at the hub of the communications process." Through careful questioning, the nurse asks family members about the unconscious person’s values. What are the individual’s religious beliefs and social customs? What makes the person who he is?
"It is crucial that the family's decision-makers understand and agree upon the definition of the terms 'irreversible' and 'terminal.'"
"A critical care nurse's primary role is that of moral mediator and advocate for the patient," Calvin says, who is assistant professor in the Department of Acute and Continuing Care at the UT School of Nursing.
UPDATED: 4-06-2005
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Dr. James Grotta holds the Roy M. and Phyllis Gough Huffington Distinguished Chair in Neurology at UT Medical School.
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