Elegy for Terri Schiavo: The Culture of Life?

April 3, 2005
Rev. Victoria Weinstein

It has been described as a circus. It was most definitely a media frenzy and communal experience of rage, grief, outrage, disgust and judgment. Most of America had an opinion, and some people even left their homes and packed themselves and their children into cars to go to Florida where it was all playing itself out. They tried to bring bread and water to the woman they believed was being starved to death by a cruel and disloyal husband, and by a legal system that honored the selfish wishes of the living over the moral imperative to protect the innocent, voiceless hospice patient. Other said, "This is no life. Let her go. For the love of mercy, let her go already!" By the time it was over, no less than the Florida governor, the Vatican, the Supreme Court of the United States, the House and Senate had gotten involved.

And all this time, the center of all this furor had no awareness of what was going on around her; no idea what her sad predicament would come to mean to both right-to-life and right-to-die advocates in this country. She had been living in almost every medical expert who examined her called a "persistent vegetative state" for fifteen years, and she died on March 31 after her feeding tube was removed.

Her name was Terri Schindler Schiavo. She grew up in the suburbs of Philadelphia and was an awkward, overweight teenager. She met Michael Schiavo in college and became engaged to him after five months. They wed in 1984 and Terri made a beautiful bride. She had lost well over 100 lbs., but what no one knew was that she was in the grips of an eating disorder called bulimia, where the sufferer binges on food and then vomits it up, or uses laxatives to expel it from the body. Abusing herself with these compulsive, secret patterns of bingeing and purging, Terri Schiavo suffered cardiac arrest in 1990, at the age of 26.

At first, her husband and parents held out hope for her recovery. They cared for her together in a series of nursing homes and hospitals for the first years, trying every therapy they heard about, and calling in expert after expert. One nursing home was so frustrated by Michael Schiavo' s aggressive advocacy for his wife' s care that they took out a restraining order against him. He dressed her and kept vigil by her, and enrolled in nursing school in order to learn how to better care for her physical needs as she lay bedridden, her cerebral cortex so irreversibly damaged that she could be truly said to be on auto-pilot. The relational Terri was gone. In her place was a body whose only remaining brain functions were related to what neurologists call primitive functions: blinking, coughing, swallowing, elimination, sleeping and waking.

Around 1993 Michael Schiavo was awarded a $700,000 judgment in a law suit against the obstetrician who had treated Terri for infertility; the accusation being that the doctor should have detected the severe potassium imbalance that led to her heart attack. The money was put into a trust fund for her medical care, and Michael got $300,000. Because of this, there has been a lot of speculation that Michael Schiavo' s eventual decision – beginning in 1994-- to give up hope and to enter a "do not resuscitate" order in her nursing file – was based on financial gain. Michael, who had spent many years by Terri' s side, finally petitioned the courts in 1998 to remove Terri' s feeding tube and to let his wife die. After lengthy court proceedings, the tube was removed in 2001, only to be restored after her parents appealed. Although there are an estimated 19,000 Americans in persistent vegetative states, this particular case came to national attention when "Catholic, evangelical and anti-abortion groups seized on the parent' s cause, hoping to publicize, and more importantly; fund it. " Arian Campo-Flores of Newsweek magazine continues that "pressure from such activists also helped catch the attention of politicians eager to burnish their own pro-life credentials." (Newsweek, "The Legacy of Terri Schiavo," April 4, 2005).

It is easy enough to see this as a right-wing, left-wing partisan political struggle, but it is so much more than that.

We are invited this morning to go reflect on this case together as religious people. I' d like to do this on two levels, the practical and the spiritual.

First, the practical.

We should all have advance medical directives: (1) the Living Will – which specifies our treatment preferences should we become incapacitated – and (2) the durable power of attorney form (known in the Commonwealth of MA as "Health Care Proxy") which specifies which person(s) should inform doctors of our wishes should we be mentally or physically unable to speak on our own behalf.

The Massachusetts Health Care Proxy form is easy to obtain on-line at www.masmed.org. You should have one on file with your own proxy, your family, a copy in your medical file, one on file with your attorney, and we can keep one at the church. Terri Schiavo was 26 years old when she suffered her heart attack, so it' s never too early to fill one of these forms out, which can always be updated later. Please do not fill one out and file it in a place that could not be easily found if you were unconscious in a hospital somewhere. Our church office has printed out 30 copies or so for those who want them today. Let me know if I can be of any help in filling it out.

My next reflections are less practical and more spiritual and theological. I want to get us to think a little bit differently about how to regard all the media hype and extraordinary political intervention surrounding this case. Part of thinking about issues in a religious way is to be willing to sit with the tension of different moral perspectives, and to stay in conversation with various points of view even when we vociferously disagree. This is hard work. It' s especially hard when an issue seems to us to have a fairly obvious most fair and sensible resolution: we are tempted to say "that' s that. It would be silly to think otherwise." It is going to be hard for Americans to remain civil with each other over legislative issues that have arisen in conjunction with this case, but as yesterday' s headlines show, they are not going away.

My first response in the Terri Schiavo case was very impatient – I have worked in hospice chaplaincy and I have kept vigil with several families through the decisions to remove life support or feeding tubes, and to companion people and their families through the dying process. I respect the privacy of this difficult business and believe that the Schiavos and the Schindlers should have been left to deal with this privately. I thought that every possible measure had been taken to keep Terri alive for fifteen long years, and if her husband (who I believed could be forgiven for moving on to another relationship after many years caring for Terri) believed that she would not have wanted to live like this, we would have to allow him the spousal privilege of making that statement on her behalf. A feeding tube, while not an extraordinary measure, is a measure to prolong life. In 1984 the American Medical Association made an official statement that, in the case of patients who are in a persistent vegetative state, it is ethically acceptable to remove all medical interventions, including artificial nutrition and fluids.

Having made my decision, it was easy enough in the first days of the media storm to nurture a sense of my own personal superiority in the matter, and to develop a consistently offended reaction to those who publicly and angrily advocated to prolong Terri' s twilight existence even longer.

And then I remembered that I have a personal and professional commitment to having a compassionate, rather than a judgmental and condemnatory, orientation to human struggle. So I watched and read the news trying to see beyond my own anger and to understand and maybe even appreciate where other people are coming from. When I first read, for instance, that House Majority Leader Tom DeLay had been present during a family decision to remove his own father from life support sixteen years ago, I climbed up onto a very high horse, morally speaking. I climbed up so high I got a nose bleed up there. I assumed Mr. DeLay to be a hypocrite and opportunist in refusing to Terri Schiavo what he had granted to his own father: a peaceful slipping from an untenable life into the rest of death.

Eventually, though, it occurred to me that Mr. DeLay may be a man who suffers a residual sense of sorrow, grief or regret about the decision he helped make on behalf of his own father, who had been badly injured in an accident at the age of 65, subsequently suffering organ damage and requiring life support. Perhaps Mr. DeLay hooked into this case emotionally because he had unresolved guilt about that earlier act, and he saw this as an opportunity to remedy something. We will never know. Maybe, as in many situations, there is a complicated mixture of motivators.

Reflecting on Mr. DeLay' s interesting history with life support in his own family led me to try to think more kindly about those people who gathered in throngs to chant for Terri, to beg legislators to intervene on behalf of keeping in her feeding tube, and even those who sent their children into the hospice with bread and water in the mistaken assumption that Terri took her nourishment in the normal fashion, which of course she did not. These people, who so thoughtlessly disturbed the other dying patients receiving hospice care – an insensitivity I find inexcusable– might have a need for this kind of communal catharsis of grieving. Perhaps they feel that our culture truly does regard life cheaply, or they have their own past experience with a difficult loss that this case re-activated for them emotionally, and perhaps the figure of Terri Schiavo represents something much larger for them than one individual family' s painful and private struggle.

Once I got beyond my self-righteousness, I was able to come to at least one clear recognition: Ah-ha. These people and I really and truly have a different definition of life. We have a very different sense of what it means to cultivate and uphold a "culture of life."

To some, life is life. It involves breathing in and out, or in the case of a fetus (because, of course, the abortion debate is morally related to this debate about Terri Schiavo), the potential to breathe outside the mother' s body. For me, a meaningful definition of life requires sentience, or consciousness, and along with that, a measure of autonomy of the mind and senses – the ability to know that one is alive. My commitment to a culture of life involves helping those who are so-to-speak "alive and kicking" a fair opportunity to live free from poverty, clean air to breathe and clean water to drink, access to health care and to jobs and to education. This is not to say that we have no moral obligation to consider the reality of unborn children, or those in vegetative states, it' s that when questions of life arise, I am willing to admit that I support a hierarchy of obligation favoring those who are alive and sentient. In cases of total dependency and contingency, as was true for Terri Schiavo, I believe those who knew her personally should be trusted to make important decisions on her behalf, yes, even unto life and death. Such decisions may be terrible and conflicted, but they are the business of the family, not to be decided in the court of public opinion, or even the court, for that matter.

I was surprised by disability activists who claimed Terri Schiavo as being "disabled." This was a much broader definition of the term than I had ever heard before. So I wrote two weeks ago to the leader of a disability advocacy group and I asked for some help in understanding this. I wrote in an e-mail, "Can you help me understand how you come to include an unconscious person, whose cognitive ability is non-existent and whose life is reliant on a feeding tube, in the ranks of the disabled? Also, could you help me to consider the ontological value of Terri Schiavo' s life, a value entirely independent of the emotional role she fills to grieving parents who want to care for her?"

I did not get a response to my e-mail and I am still struggling with that question. "Ontology" is a branch of metaphysics that deals with the nature of being itself. When we ask about ontological meaning we are asking, "what is its very being, its ultimate essence?"

What do you think is the ontological value of Terri Schiavo' s life, outside of providing an object for the emotional needs of others who either personally love her or who are projecting onto her their own unresolved griefs, or making her a symbol for their own moral crusades?

I will be thinking about this for a long time.

I turn in this question to my faith in the God of creation, which I understand partly as an animating energy in the universe, an energy that en-souls all life. I believe that Terri Schiavo, even in a state of suspended animation, is …was … an ensouled being, and is therefore part of creation, and therefore not to be regarded as worthless, or of negative value. I believe the God of love is present in a human being in a persistent vegetative state. What this means for me morally is that while I would never say that such an unfortunate person should die, it doesn' t preclude my conviction that they should be allowed to die. And in this moral discernment, I come to the conclusion that only other humans can affect that release of death when nature does not provide it.* We must trust those who love us to make this decision as best as they can.

(*Had we not had the benefits of modern medicine, of course, nature would have indeed have released to death Terri years and years ago.)

I was persuaded by the truth of Jesuit bioethicist, the Reverend John Paris' , stark and very sad response to the interviewer who suggested that people just don' t want Terri Schiavo to die unnecessarily. Paris said, "It' s not happening unnecessarily. It' s happening because her heart attack has rendered her utterly incapable of any future human relationships."

It' s happening because her heart attack has rendered her utterly incapable of any future human relationships.

Which reminds me that for me, a meaningful definition of life also means that one has the capacity for some form of human relationship, even if an extremely limited one. I am aware, of course, that Mr. and Mrs. Schindler would make the claim that they did indeed have a relationship with Terri. This is the tragedy of the thing.

Neurologists say that Terri the part of Terri' s brain that would allow her to be aware of her parents at any level degenerated long ago into spinal fluid. She could not possibly be responding to them in the common understanding of the term. Science says, "We' re terribly sorry but the cerebral cortex, it' s all spinal fluid now. Believe us; no one' s home anymore."

And this is where science and religion sit across from the kitchen table from each other and cry. Religion responds, "How do you know? If Terri is not really ‘there,' where is she? What is the essence of Terri, anyway, and if that essence is synonymous with having a working brain, are we saying that humans are merely machines, and that when the central computer of that machine no longer functions, we are no longer persons? Have we no other, ineffable and eternal essence that survives the break-down of our central computer?"

I think we would agree, you and I, that there is something ineffable and eternal about us that might not be contingent on a working cerebral cortex. It is that part of us that partakes most closely of eternity, it is what the old hymn calls "Immortal, Invisible."

The story of Terri Schiavo, then, which raises many complicated questions of the hierarchy of moral obligation, at least accomplishes two clear things for us which we have cause to receive with profound respect and even awe: first, we hold our own heads up as individual, autonomous human beings who have free will, to leave instructions with those who love us as to what we wish done in the event that we are left as helpless as Terri Schiavo. Second, and finally, we have cause to bow our own heads in reverent acknowledgement that there is much about our ultimate being that we do not know, and which we shall probably never know.

So let us share a moment of silent support of, and recognition of our sister Terri, so recently translated from body to spirit, whose soul resides we know not exactly where, but which we know is joined in immortal and invisible mystery with our very own, and with all of creation.

Rest eternal grant to her, Spirit of Compassion,

And let light perpetual shine upon her.
And may the peace which passeth understanding
come to the hearts of all who made her struggle their own.