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October 23, 2000

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.

By Benedict Carey, Times Health Writer

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.

Don Pugh
Don Pugh and Sierra
"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.

But a surgeon's skill and experience are also a big factor, doctors say. To spare a man's potency, the surgeon must separate from the prostate two dense, climbing vines of nerves critical for erection. Specialists say that doing it well, and reliably, takes one thing above all--practice, and lots of it.

"The difference between success and failure is so slight that you really need to know what you're doing," said Dr. Patrick Walsh, the Johns Hopkins University School of Medicine surgeon who pioneered such nerve-sparing techniques and has done nearly 3,000 surgeries using them. The best results come from large teaching and research hospitals that allow a doctor to specialize in a surgery, and "where doctors are dedicated to improving their technique and carefully follow up with their patients."

No one knows exactly how to quantify such artistry. Dr. Claus Roehrborn, a surgeon at the University of Texas Southwestern Medical School in Dallas, said there are usually significant differences in outcome between the doctor who does one prostate operation a month, and the one who does closer to one a week.

"Speaking generally," Roehrborn said, "the person who does only 10 a year or so cannot very well predict the outcome. A person who does more like 50 a year can say, 'I have a potency rate of 60%,' for example."

Finding a Surgeon With Experience

Pugh found one, James Brooks, a urologist at Stanford University Medical Center in Palo Alto, who has done prostatectomies in about 500 men and reports that 69% remain potent and 95% are still continent.

In late August, Pugh wrote a letter to Dr. David Lawrence, Kaiser's chief executive: "I understand that Kaiser has 66 urologists. Are there any of them that specialize in radical prostatectomy to this degree and achieve these results? Kaiser is well regarded in statistical analysis of procedures and outcomes, and this information should be available, but no one seems to know how to access it."

For weeks, Pugh waited anxiously for an answer, and contacted the Los Angeles Times. On Oct. 13, in response to questions from a Times reporter, the health plan conceded that it doesn't keep close track of nerve-sparing surgery outcomes. "Our database is not set up to capture the nerve-sparing portion of these procedures," said Dr. Robert Klein, a urologist and associate executive director of the Permanente Medical Group, adding that the numbers Kaiser originally gave Pugh were incorrect. "We simply don't have that level of detail."

Comparing Kaiser's outcomes with Stanford's is like comparing apples and oranges, according to Klein. While most Kaiser urologists do a variety of procedures in a variety of patients--some healthy, some very sick--an academic institution can allow doctors to focus exclusively on one type of operation. "I can tell you there are several very experienced Kaiser surgeons I would go to myself," Klein said.

Patient advocates say it's hard to believe that a plan as sophisticated as Kaiser's doesn't have some kind of surgeon report cards more readily at hand. Yet, some note that a lack of data about medical outcomes at hospitals or for individual doctors is a problem throughout the health care system.

"We simply don't have good standards set for how to report outcomes," said Peter Lee, president of the Pacific Business Group on Health, a San Francisco-based coalition of large employers working on health quality issues. The result, said John Metz, chairman of the California Consumers Health Care Council, a nonprofit patient advocacy group based in Oakland, is that "people wonder in their guts whether they're being treated right, even if they're afraid to challenge their doctor, or don't educate themselves about their treatment."

In this environment of uncertainty, many patients facing high-risk surgery, like Pugh, would rather choose a doctor themselves.

Paul Fronstin, a senior researcher at the Employee Benefit Research Institute in Washington, D.C., says that in some areas of the country those doubts have helped fuel a move away from HMOs into so-called PPOs (preferred-provider organizations), which are usually more expensive but allow more freedom to choose a doctor. "In this good economy, people have more money," he said, "and I think they're more willing to pay a little more for coverage."

HMO enrollment has plateaued in the last few years, at about 30% of all insured people in the United States, according to William M. Mercer Inc., an employee benefits consultant. During the same period, 1997-99, enrollment in PPOs has risen from 30% to 43% nationally.

"One factor," Fronstin said, "is that people realize, 'Hey, when the time comes, I might not be able to see the doctor I want to see.' "

Kaiser Turns Down Request

As the weeks passed, Don Pugh only became more firm in his decision: He wanted the Stanford surgeon, Brooks. Kaiser wasn't budging. In a letter to Pugh dated Oct. 13, Lisa Koltun, a Kaiser vice president, wrote, "We believe that the training and experience of the surgeons that are available within the Plan is at least comparable with physicians in the community and that there is no reason for this procedure to be performed by someone other than a Plan physician."

The case seemed destined to be decided by Daniel Zingale, director of the California Department of Managed Health Care, a new state agency charged with regulating HMOs. As part of a reform package signed last year by Gov. Gray Davis, his department has the power to refer Pugh's case for independent medical review. An outside panel of doctors would then rule on the case, and its decision would be binding on Kaiser and Pugh.

"The independent medical review statute doesn't take effect until January of next year, which would be too late for this patient," Zingale said in early October. "But we would consider asking the health plan to grant the review in the spirit of the law."

By then, Pugh had had enough of waiting. He began donating blood in preparation for surgery, scheduled with Brooks on Oct. 31. And he was making arrangements to come up with the $30,000 that he would have to pay himself because Kaiser wouldn't cover the surgery.

Then, on Wednesday afternoon, the Pughs got a phone call. It was Lisa Koltun, the Kaiser vice president who several days earlier had written Pugh denying the referral to a non-Kaiser doctor. She left a message on their answering machine, saying that Kaiser had reconsidered--the plan would pay for Pugh's surgery at Stanford, after all.

After listening to the message several times, Pugh excitedly called his wife. "We won," he said.

Why did Kaiser change its mind? Jim Anderson, a Kaiser spokesman, said only, "There are some unique circumstances which contributed to this decision. But they involve matters of the doctor-patient relationship that we will not discuss." He described Pugh's case as an exception, not a rule, and said that Kaiser doctors will take care of men who want nerve-sparing prostatectomies in the future.

That's something Sandie Pugh has already thought about. "It's awful to have to go through all this to get treatment," she said. "But I keep thinking that, in one sense, we are lucky. We could pay for it. I wonder what happens to other people in this situation. You know, not everyone's like Don."

If you want to talk to Don about his experiences with prostate cancer, surgery and Kaiser, you can email him at or call him at 650-851-8343.

Click here for more stories about Don Pugh's fight



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