Wednesday, November 25, 2009

Medicine, ethics and politics


Ministerial malpractice


In 1983, at age 23, Ron Houben was involved in a car accident that left him completely paralyzed and in a coma. The young Belgian had been a martial arts expert and engineering student; now doctors diagnosed his condition as persistent vegetative state. His eyes could move; he had periods of sleep and wakefulness, but he appeared unconscious; unable to reason or respond.

In reality, Houben knew what was happening around him but had no way of signaling he was a sentient being. He could not even blink an eyelid.

His mother's intuition led her to believe that her son was not a hopeless case, and over the years she took him to the United States five times for sophisticated tests.

She eventually connected with Dr. Steven Laureys of Belgium's Coma Science Group, who put Ron through a PET scan that detects energy given off by a radioactive element injected into the patient. The exam, which was not available when Houben was first diagnosed, showed that he probably could think and reason after all, even if he was immobile and uncommunicative.

This stunning discovery, made three years ago, has only now come to light. Laureys came up with a computer-assisted touch screen that allows Houben, now 46, to use the partial mobility he has in one finger of his right hand to type out his thoughts - with the help of an aide.

"I shall never forget the day when they discovered what was truly wrong with me," he wrote afterward. "It was my second birth. I was shouting, but no one could hear me."

Houben now sits in a wheelchair, his body twisted to one side as if in suspended animation, but his eyes are open and he can now "speak" via computer. He wrote that he maintained his sanity by dreaming himself away. "I was only my consciousness and nothing else."

His mother insists he is not depressed, that he is an optimist and that he wants to get the most out of his life.

Laureys claims that "up to 43 percent of patients with disorders of consciousness are erroneously assigned a diagnosis of vegetative state."

Surely, this case will further sensitize medical ethicists, physicians and others involved in the care of similarly situated patients about when to end aggressive intervention and restrict treatment to palliative care alone until nature takes it course.

Medicine is both an art and a science. Physicians deal in probabilities. Sometimes they get it wrong; sometimes miracles happen.

Optimistically, Laureys's work may cause physicians to reevaluate the brain activity of patients who were diagnosed as being in a persistent vegetative state before PET became available. (The technology has long been available in Israel.) It's not apparent whether the failure to correct Houben's diagnosis any earlier can be attributed to medical malpractice.

WHAT'S EVEN worse than doctors getting a diagnosis wrong? Answer: A politician playing doctor.

Here at home, Deputy Health Minister Ya'acov Litzman has drawn a sharp rebuke from the head of the Israel Medical Association (IMA) for personally and repeatedly intervening in the care of a patient at Schneider Children's Medical Center.

Litzman ordered doctors to treat a lower-brain-dead baby with antibiotics. This patient's condition has nothing in common with being in a vegetative state or in a coma.

The standard protocol for lower-brain-dead cases, after evaluation by two physicians and with the approval of director-general of the Health Ministry, is to discontinue the respirator. Under Israeli law, however, the hospital must honor the wishes of the family if it insists that a lower-brain-dead patient continue to receive nourishment and stay on a respirator. But no one has a right to demand the patient receive antibiotics.

The Health portfolio is formally held by the premier. Litzman is a deputy minister because his United Torah Judaism Party is unwilling to assume responsibility for the actions of a Zionist cabinet, though it does consent to exercise governmental power.

The IMA declared that Litzman had "no right to intervene" in this case. We agree. Israel can't afford to have politicians or clergymen micro-managing medical cases any more than it can tolerate having transportation ministers supplant air-traffic controllers at Ben-Gurion Airport.

If Deputy Health Minister Litzman concludes that his fiduciary responsibilities to Israel's citizens cannot be reconciled with his deeply held religious convictions, let him draw the necessary conclusions.

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