Il New York Times in home page pubblica la lotta di Piergiorgio Welby

New York Times online

December 20, 2006


A Poet Crusades for the Right to Die His Way



ROME, Dec. 19 — Many patients on respirators are not conscious and so cannot say whether they want to live or die. But Piergiorgio Welby is still full of words, hard and touching ones, that may be changing the way Italy thinks about euthanasia and other choices for the sick to end their own lives.

“I love life, Mr. President,” Mr. Welby, 60, who has battled muscular dystrophy for 40 years, wrote to Italy’s president, Giorgio Napolitano, in September. “Life is the woman who loves you, the wind through your hair, the sun on your face, an evening stroll with a friend.

“Life is also a woman who leaves you, a rainy day, a friend who deceives you. I am neither melancholic nor manic-depressive. I find the idea of dying horrible. But what is left to me is no longer a life.”

Now Mr. Welby’s long drama appears to be nearing its final act. Last weekend, an Italian court denied legal permission for a doctor to sedate him and remove him from his respirator. Fully lucid but losing his capacity to speak and eat, he is deciding whether to appeal or to perform an act of civil disobedience that will kill him.

He is doing so in a very public way. Until a recent steep decline in his condition, he used a little stick to rapidly peck out blog entries with one hand. His book, “Let Me Die,” was just released. Near daily front-page stories chronicle the political, ethical and, with the Catholic Church a vital force here, religious issues his case presents.

“Dear Welby: Wait Before Taking Yourself Off” the respirator, read a front-page headline on Tuesday in La Repubblica, written by a top Italian surgeon, Dr. Ignazio Marino, who is also a senator for the Democrats of the Left. He had visited Mr. Welby the day before.

What has given the case a particular political twist is that Mr. Welby, attached to a respirator for nine years, has long been a spokesman for euthanasia and is a central part of the Radical Party’s effort to have it legalized. In fact, members of the Radical Party have offered to personally remove his respirator if asked — and may do so any day now in a frontal challenge to Italian law.

But the Catholic Church and many of this traditionally minded nation’s politicians on the left and the right not only oppose euthanasia generally but are also not entirely sure what to do about Mr. Welby’s case. He says he is not seeking to commit suicide but to remove himself from medical treatment he does not want.

“It is an unbearable torture,” he wrote two weeks ago.

To decline forced medical treatment is allowed under Italian law, experts say, but Italy has another law that makes it a crime to assist in a death, even with consent. So a doctor could not detach the respirator without risking prosecution.

The church, too, has conflicting teachings about what to do in this case, and what the Vatican thinks has a deep impact not only on the nation’s political class but also on doctors tied to the scores of Catholic-run hospitals around Italy.

The defense of life is central to the social doctrine of the church, and so it opposes abortion and capital punishment. Only last week Pope Benedict XVI reaffirmed his opposition to euthanasia, saying governments should find ways to let the terminally ill “face death with dignity.”

The church also opposes medical treatments to artificially prolong life, but several church officials have worried recently that ending artificial life support could result in de facto euthanasia.

“The problem is to know if we find ourselves truly in front of a case of an artificial prolonging of life,” Cardinal Javier Lozano Barragán, the Vatican’s top official for health, said in a recent interview with La Repubblica.

Seeing the church as one major obstacle to dying as he wants to, Mr. Welby, a poet and prolific writer, has had little patience with the Vatican’s argument for a “natural end” to life.

“What is natural about a hole in the belly and a pump that fills it with fats and proteins?” he wrote in his letter to the president. The letter was delivered with a video of Mr. Welby in his bed at his home in Rome attached in silence to the respirator, with a laptop at his bedside reading his words in a spooky synthesized voice.

“What is natural about a hole in the windpipe and a pump that blows air into the lungs?” he wrote. “What is natural about a body kept biologically functional with the help of artificial respirators, artificial feed, artificial hydration, artificial intestinal emptying, of death artificially postponed?”

The Radical Party, and to some extent Mr. Welby himself, have been criticized, largely from the political right, for turning the fight over his death into a political campaign. And certainly, experts say, scores of terminally ill patients end their lives in the way Mr. Welby wants to, though privately, and at the moment in Italy, illegally.

“If it is done privately, there would be a way to accommodate his desire to discontinue life support as a burdensome therapy,” said Dr. Myles N. Sheehan, a Jesuit priest and physician at the Loyola University Medical Center in Chicago and an expert on ethical issues surrounding euthanasia. “But if it is done publicly, it’s a big mess, because of the direct link to euthanasia.”

Mr. Welby, in fact, wants to make his legacy erasing that ambiguity. He has been pushing for a broader law on euthanasia. He also sought a court ruling for a doctor to sedate him and detach him from the respirator, which several experts said would have given Italy a legal precedent in cases involving unwanted medical treatment.

Court rulings, the latest issued on Saturday, essentially acknowledged Mr. Welby’s right to end medical treatment but did not allow a doctor to participate.

Still, his fight is having a political effect. Recent polls show a higher level of support among Italians for euthanasia. For the first time, there is a serious attempt in Parliament to pass a “living will” law that would allow Italians to declare what medical treatments they would accept.

Mr. Welby must now decide whether he wants to continue pursuing the legal track or whether he will die outside the law. Already Marco Cappato, a leader in the Radical Party and in a pro-euthanasia patients’ group, said plans were being drawn up with Mr. Welby to end his life without a legal decision.

“It’s a very difficult moment for him,” Mr. Cappato said. “The choice to die is not easy.”