Europeans Grapple with Right-To-Die Issue

ROME, 15 May 07: When Pope John Paul II was dying of complications of Parkinson's disease in 2005, he ultimately refused to return to a hospital from his Vatican quarters, rejecting interventions like breathing machines and kidney dialysis; he was dead a day later.

Despite high-profile cases like his, and other tragedies that can dominate the news, ordinary Italians do not have the clear right to reject aggressive medical treatment. Decades after the U.S. adopted living wills and health proxies, Europe is slowly moving in that direction. But resistance is also mounting from place to place, where the question of legal rights for the gravely ill get mixed up in a melee of other socially contentious issues, from euthanasia to gay marriage.

Here in Italy procedures are muddled, as they are in many other nations. The Constitution supports that right - but the medical code does not require doctors to respect it, and in fact instructs doctors to try to keep patients alive.

A new law is being debated in the Italian Senate that would affirm the right to reject aggressive treatment, but it is unlikely to have enough votes for passage any time soon. Other countries have adopted legislation only lately. France, Spain and Britain have passed "living will" laws only in the last two years.

For nearly two decades, the right to refuse medical treatment has been entrenched in U.S. law, and hospital patients must fill out forms indicating their wishes, called advanced directives. Many states were spurred on by landmark cases like those of Karen Ann Quinlan and Nancy Cruzan.

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Many Europeans still do not have legal rights in this field, which religious lobbies, political divides and a more ideological political climate have made contentious. Instead of being seen as part of a patient's right to have "informed consent" for medical procedures - as they generally were in the United States - living-will laws here are perceived as part of a constellation of issues like abortion, euthanasia and gay marriage.

"There is nothing here that protects you - it's a wasteland," said Beppino Englaro, whose daughter has been hospitalized in a deep coma and undergone many types of unwanted treatments here since an auto accident in 1992. "Eluana had been very explicit about her wishes and our request to the doctors was always the same. But they told us, 'No, here in Italy we have a culture of life.' "

The family has been to court seven times to try to get life support stopped, and judges concluded that "stopping treatment is against the law."

There are two types of advanced directives: living wills, in which patients indicate which procedures and treatments they would reject, if they fell into a hopeless, life-threatening situation. A second type, called a "medical power of attorney" or "health care proxy," allows the patient to choose a person with the legal right to make such decisions on the patient's behalf should he be incapacitated.

"There are so many inconsistencies and so much conceptual confusion here in Italy," said Cristiano Vezzoni, an expert in European health care law at the University of Milan.

"Theoretically everyone recognizes the right to informed consent, and the theoretical right to refuse futile treatment," Vezzoni said. "But then they say, 'Oh you can not stop treatment if it would cause death.' Or they argue that tube feedings should not count as medical treatment - even though it is internationally accepted that it is medical treatment in this case."

Last year, Italy was galvanized by the case of Piergiorgio Welby, a poet with a progressive neurological disorder who had petitioned repeatedly to be disconnected from the ventilator that kept him alive. A doctor complied with the request and Welby died. No one has been prosecuted, although there were calls for the physician to be charged with murder.

In Italy, as in many Catholic countries, there have been loudly voiced fears that allowing patients to refuse treatment could readily lapse into euthanasia. "We worry that the new law will introduce a form of euthanasia," or assisted suicide, said Luisa Capitanio Santolini, of the Union of Christian Democrats. She worried, too, that the law would turn doctors into bureaucrats. "You can not bypass the judgment of the medical class to respect the desires of a sick person," he said.

Only three European countries - Denmark, Belgium and Netherlands - have long had strong laws protecting the right to refuse treatment, said Penney Lewis, a reader in law at University College London.

Courts in some others, like Britain, have for the last decade generally supported the notion that people could refuse treatments that forestalls their death, including refusing artificial feeding. But they did not uniformly respect those wishes, unless a patient was gravely ill. And patients had no right to appoint proxies.

Britain passed a law in 2005 that takes effect in November. "As of November the practice will become codified in law, which is important," Lewis said. "In Italy it's been and remains very unclear for doctors and patients what you could and couldn't do."

Even new laws have been laced with religious politics and ambivalence. In Britain, at the urging of conservative policy makers and Anglican Bishops, lawmakers added a clause that patients could refuse treatment but "could not be motivated by a positive decision to cause death."

France's law protects the right to refuse lifesaving treatment, but only for the terminally ill.

Here in Rome, Senator Ignazio Marino, a transplant surgeon who practiced in the United States for many years, said the lack of clarity on the subject meant that doctors make life-or-death decisions in a hushed manner, afraid to consult patients for fear of prosecution.

"Most physicians in the ICU will decrease the intensity of treatment, but they do it in a way that is not declared or discussed - it's all foggy," he said, using the abbreviation for intensive care unit. "It's like New Jersey in '76: We cannot say enough is enough, this person cannot get back to consciousness or meaningful existence. We cannot say, comfort measures only. We know it's against the law."

The Vatican's own mixed messages on the subject have given ammunition to both sides of the debate. Pope Benedict XVI once wrote, "The stopping of medical procedures that are dangerous or extraordinary or disproportionate compared to the results you can expect could be legal and accepted."

But terms like "extraordinary" and "disproportionate" are open to broad interpretation, and the Church deems food and water, even if through a tube, not to be a medical procedure.

Eluana Englaro has been in a deep coma in a hospital for more than 15 years, but during that time but has never needed dramatic life-support machines like a ventilator or a kidney dialysis. She has been given artificial feeding, liquids, seizure medicines and antibiotics for infections. Like Terri Schiavo, the Florida woman whose husband sued successfully to remove a feeding tube in 2005, she has been a magnet for controversy.

Her father says his daughter's treatment should be withdrawn. His daughter understood the choices, he says, since a close friend of hers had been left comatose after a car crash the year before her own accident.

"We spoke openly about this - she had very direct knowledge about intensive care units and said this is not for me," he said. "She trusted her parents to enact her wishes, but we couldn't. It's been 15 years that we've lived with this guilt."

By Elisabeth Rosenthal, International Herald Tribune