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He Knew What He Wanted --but His HMO Disagreed

As one determined prostate cancer patient found, having the specialist of his choice wasn't an option under his health plan.


Whose hand will be on the knife?

That's all Don Pugh wanted to know, and his dogged insistence on an answer has produced an extraordinary concession from the nation's second-largest HMO.

In early August, doctors at Kaiser Permanente found that Pugh, 55, a software consultant in Silicon Valley, had cancer of the prostate, a prune-sized gland just behind the genitals. After carefully researching his options for treatment, Pugh decided he wanted the gland cut out--a procedure called radical prostatectomy--as long as he could minimize the risk of its most morbid side effects: incontinence and impotence.

"I wanted a doctor," said Pugh, "who had a lot of experience doing the surgery. Someone who had a proven track record and could tell me what my chances were of a successful surgery."

So Pugh, of Woodside, asked Kaiser doctors: Who is your most experienced surgeon?

And no one had a good answer.

Kaiser's patient services department spent a couple of days tallying prostate surgeries its doctors had done in the previous year, Pugh said, and the figures did not reassure him. Doctors at Kaiser-Redwood City, Pugh's local hospital, had done only four such operations, according to the report; and it appeared that no Kaiser center in Northern California had done more than 60.

"That's simply not enough," he said. Researchers have found that the patients who recover best from prostate surgery tend to be those who go to clinics that do hundreds of the procedures a year.

"I don't mean any slight to Kaiser doctors," Pugh said. "I'm saying this is a specialty in which you need to do a lot of operations to do it well. This is my life we're talking about here. These side effects will last the rest of my life."

On Sept. 5, Pugh filed a grievance demanding that the health plan pay for a specialist who was not in the Kaiser system, a highly experienced surgeon with a documented success rate. About three weeks later, Pugh received a letter from a Kaiser member services representative informing him that his request had been denied. The letter said, in essence, that Kaiser specialists were well-trained and able to perform the prostatectomy procedure.

The standoff might have become another David and Goliath story about managed care, except that Don Pugh is no average David and Kaiser no ordinary giant. Kaiser is considered by many health experts to be one of the nation's premier HMOs--often ranking high in national ratings for medical quality. And Pugh is a consumer's consumer, the kind of self-informed, demanding patient whose numbers are increasing in this Internet era.

Pugh concedes that Kaiser had provided top-notch care to his family for 30 years. His wife, Sandie, delivered both of their children, now in their 20s, at Kaiser hospitals, and she had received excellent treatment for an ulcer there. Pugh is convinced that Kaiser spared no expense along the way.

And with his prostate cancer, he said, Kaiser doctors were "very thorough, very clear in their diagnosis."

Deciding how to treat the cancer was less clear-cut. Like some 180,000 men each year who receive the same diagnosis, Pugh had one of three choices. He could have the prostate surgically removed, a major operation with real risks; he could have it treated with radiation, a less invasive option with fewer side effects but less certain long-term success; or he could do nothing and hope the cancer didn't spread.

For someone who's just received terrible news, it was a whole lot to digest. Pugh, a Vietnam veteran who made his own way in Silicon Valley, was voracious. He interviewed radiologists and surgeons. He pored over research papers. He lingered on Internet sites. And he decided that he was an excellent candidate for surgery.

"I expect to live another 30 years, at least," he said. "The advantage of the surgery is that you've got the thing out and it's sitting there on the pathologist's table. It's done." His brother, Bob, an electrical engineer in Boston who'd had prostate surgery last January, stressed one piece of advice: Find the most experienced surgeon you can.

Few doctors would dispute that. As a general rule, it applies to most surgical procedures; more experienced doctors get better results, whether they are operating on the heart, the brain or a knee.

In prostate surgery, eliminating the cancer is just the first battle. Most qualified surgeons report fairly consistent cure rates--about 90% or better.

It's the rate of surgical side effects that varies greatly. Anywhere from 20% to 80% of men walk away impotent, and between 3% and 10% end up incontinent. The variation is attributed, in part, to the range of patients being treated; as a rule, for instance, men in their early 50s do much better than those in their late 60s.

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