Lords over life?

The Courage
to “Take Care Of”
The testimony of the Director of a ward of patients in a vegetative state, with twenty-five “Terri Schiavos.” The awareness of the absolute value of each person, no matter what his condition

edited by Paola Ronconi

It certainly isn’t for the money or career advancement that Dr. Giovanni Battista Guizzetti works among patients in a vegetative state. Yet his eyes shine when he talks about the past ten years as Director of the ward that hosts these patients in the Fr. Orione Center in Bergamo. “Ten years ago, when this ward was created, a director was needed, but none of my colleagues made themselves available. The work didn’t seem interesting. I ended up taking the position and, after ten years, I can tell you that it has been, and continues to be, a splendid adventure.”

Doctor Guizzetti, the patients you deal with come from situations of grave trauma. After reanimation, they either recover or remain in this state of unconsciousness.
Yes, my ward hosts 25 “Terri Schiavos”–patients in a vegetative state. This condition is the result of grave damage to the central nervous system, in particular to the cerebral cortex or its connections, most of the times from trauma or anoxia, as in the case of cardiac infarction. The problems posed by these patients don’t demand great technical expertise, but they do require a strong commitment in assistance and human contact. They’re not connected to any machines, just a simple little tube in their stomach attached to a flask with nutrition; their respiratory, cardiac, and digestive functions are autonomous, and they have waking and sleeping periods like us, but are incapable of swallowing, and seem to have no content of consciousness. First, they were in a coma, and then, at a certain point, they opened their eyes, and from that moment on they have been in a vegetative state.
Mobilizing one of these patients, that is, lifting him from the bed, bathing, dressing and putting him in a wheelchair, takes two nurses 50 minutes every morning. This is the care they need, people who have a passion for them. In a ward like mine, 90% of the work is done by nurses. When you wash and dress a person, if you don’t treat him like a chair but caress him, talk to him, and stimulate him, you send him messages that are perceived by his central nervous system. However, it is necessary for the paramedical staff to discover the beauty of this work, and to become passionate about the people (and, thanks be to heaven, the staff who work in this ward are this way, with a passion and dedication that are truly moving). The reality before them is usually very hard, like the case of a woman who has been in a vegetative state since childbirth: her husband visits her every week, bringing their three-year-old child. Out of 69 patients we’ve followed during these years, 12 have recovered consciousness. I believe that this is partly due to the way they are followed and cared for, which becomes a therapeutic and rehabilitative act.

Today, many people do not consider these needs worthy of being lived. Think of Terri Schiavo.
Thank God, I come from a Christian culture in which nobody ever questioned the absolute value of each human being, regardless of the person’s condition. But I had to “get equipped” to flesh out the reasons for this awareness. The encounter with these patients has been revolutionary for me. Coming from a university that teaches that the medical act is essentially to heal, I had to radically change the way I conceived of my work. Here, healing is not an issue. The only thing you can do is take care of a great and inexpressible need. So you do all you can, going to meet those who can help, organizing conferences, or working with the Region to get funding for these patients.
Today, the reigning culture says a person is defined by her or his qualities, among them consciousness, and thus those who do not possess it (and I’m not just thinking of my patients, but also of the demented, psychiatric patients, embryos, or fetuses) are not considered people. Undoubtedly, consciousness is a very important function, but it is only a function, and can’t define the human being. And in any case, now we’re beginning to reconsider the assumption that these patients don’t have any consciousness; no one can state with absolute certainty that they always entirely lack it, and no one can say with absolute certainty that they don’t experience pain. Dying like Terri Schiavo, that is, dying of thirst, is something absolutely atrocious.

What does working with them mean for you?
These patients continually remind you of our limitations. Technological medicine cannot accept this limitation, and always seeks to overcome it, but isn’t able to do so. Maybe it can nudge it a bit, but you get to a certain point and you can go no farther. Medicine can’t ignore these patients. It can’t propose death by dehydration as a solution to the problem they pose. It would be absolutely inhuman, and the next step would be refusing care to all the gravely, chronically ill. For me, a society that calls itself civil must find the resources to give them assistance. We must also keep in mind that these patients are the “product” of progress in medical science, because forty years ago we didn’t have these patients–they died. Places for these patients must be created. Fifty years ago, there were no places for AIDS patients, and now there are. There were places for tuberculosis patients, and now they aren’t needed any longer.

You also deal with the relatives…
The relationship with them is not always easy, because they always harbor an enormous hope for healing. When you have a twenty-year-old son there… But they are indispensable figures. It often happens that a mother, a husband, or a wife will tell you, “When he hears my voice he smiles; when I enter the room he turns his eyes toward me,” and the doctor or nurse can’t catch these things. Someone who’s lived twenty or thirty years with them has a completely different ability to relate with them. Catching a smile, a movement of the lips, which for them is familiar, is very important.
In our ward, we organize monthly meetings with all the relatives, and this helps them grow, judge the condition of their own loved one, and live the situation more serenely. They tell their stories and talk about their difficulties.
Last time, for example, three people spoke: a mother who told about her feelings of guilt for not having done enough for her son; one who was angry with the world, with destiny, and with the doctors; and, finally, one who initially was implacable in demanding exams and rehabilitation treatments (which, beyond a certain point, are useless), who said, “After many years, finding myself with you, I have come to understand that I have to take my daughter just as she is, to love her, to take her for a stroll in the wheelchair, and to chat with her. It’s not fatalism; it’s acceptance.”

CHARITY is LAW
by Giancarlo Cesana
Much has been said and written on the case of poor Terri Schiavo, but perhaps it’s worthwhile to draw attention to one consideration that hasn’t been discussed enough. Terri Schiavo was not only killed, barbarously, by hunger and thirst (even though she was given sedatives), but she was denied any form of charity. Her room was guarded by police officers charged with blocking anyone from entering to nourish her or give her water. They even stopped children, sent by their parents in the hope that the law would not be so merciless with them.
The law! The law dominated, excluding any gesture of love, even the simplest: giving food and drink to those in need. Don’t object that adults or children with bottles of water can’t appropriately hydrate a person in a vegetative state–I know that, too. What’s significant here is that the gesture was attempted by common people, and impeded by the “keepers of public order.” They tried to make manifest with a symbolic act what the authorities, for the first time in a free society, denied by force: love.
The parents would have taken their daughter Terri, but the State did not want this. The parents could have appealed for funds to support assistance for their daughter. The most powerful man in the world, President Bush, was on their side, as was the Pope, as were many throughout the world. A great many would have been happy to contribute. Not only would Terri’s assistance have cost the State nothing, but also her story would have created an occasion for collecting a mountain of money to help other unfortunate people like her.
No! The law prohibited gratuitousness. Terri’s life was taken, not by exerting violence on life (she wasn’t shot or injected with a dose of poison), but by annulling its source. The law was allowed to win over love; a cold and objective abstention won out. Thus, Terri’s small world exited from two thousand years of Christianity, in a country created as the Promised Land for persecuted Christians, amidst a people who put God in the center of their social construct, and even stamp His name on their money.
Never has it been so clear that exiting from Christianity means saying death, the death of life, of what gives rise to life, what sustains and reconstitutes it. The whole world has perceived this death; this death is the reason newspapers and television have given such great emphasis to Terri’s case; against this death millions of people have looked with hope to the testimony of John Paul II. The more the shadow of death tries to darken everything, the more the fascination of life shows itself as powerful, even if confused. With Christ’s Resurrection and the testimony of His Church, He placed a seed of certainty in the confusion. We are not afraid to love, and we don’t let others stop us.