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Urology Times logo

Vol. 29, No.1. January 2001

HMO greases a PCa Patient's "squeaky wheel"

California man's crusade to have non-HMO surgeon perform his RP raises eyebrows, questions

Anne Scheck

It is being called the "squeaky wheel" effect, and whether it will turn the realm of urological surgery on its axle at the nation' s managed care organizations is anybody's guess. Regardless, the story of prostate cancer patient Don Pugh's battle over who would Don Pugh perform his radical prostatectomy has raised eyebrows and a new round of questions about both patient activism and the role that surgical experience plays in performing this procedure well.

Pugh successfully argued that his HMO, Kaiser Permanente, should pay for a surgeon of his own choosing – not one of Kaiser's – to do the procedure. To the local media, Pugh, a Silicon Valley entrepreneur, may symbolize a "squeaky wheel," but to some health care experts, his actions could be a reverberating battle cry, with repercussions beyond that of the Bay Area where he lives.

'Unprecedented, unusual'

"Generally, if a (managed care organization) has people in the network that they feel can meet the patient's need, it's unprecedented – or at least unusual – to allow someone to go outside the system," said Dennis Robbins, PhD, a Westmont, IL, health care consultant and author of Putting Promises into Practice: Strategies for Empowerment and Innovation in Managing Care (Delmar Publishers, Inc., Albany, NY, 2000).

"Whether or not the issue comes back to haunt Kaiser will depend on whether an exception was made for an unusual circumstance or whether the patient was merely a squeaky wheel they wanted to quiet," he said.

Pugh was diagnosed with prostate cancer at age 55. He indefatigably researched his disease, approaching Kaiser with one primary request: he wanted to see data showing that whoever performed his radical prostatectomy had a strong record of preventing incontinence and preserving potency. When Kaiser's compiled figures didn't reassure him, Pugh went so far as to file a grievance demanding that the health plan pay for a specialist who was not in the Kaiser system – one with a documented success rate. Pugh began an effort to secure the Dr. Brooks right to have James Brooks, MD, assistant professor of urology at Stanford University Medical Center, Palo Alto, CA, perform the procedure.

The subsequent story that unfolded was likened in news reports to a David-and-Goliath saga, "except that Don Pugh is no average David and Kaiser no ordinary giant," the Los Angeles Times reported Oct. 23 on the front page of its health section. "Kaiser is considered by many health experts to be one of the nation's premier HMOs. And Pugh is a consumer's consumer, the kind of self-informed, demanding patient whose numbers are increasing in this Internet era."

Kaiser is the nation's second largest HMO. A spokesperson from the American Association of Health Plans declined to comment for this article.

Outcomes variables

In the end, Pugh was told he could have who he wanted perform his surgery, and that Kaiser would defray most of the costs. "We remain convinced that the surgeons from the Permanente Medical Group are fully qualified and experienced to perform the surgery that Mr. Pugh needed," said Jim Anderson of Pasadena, CA, a spokesman for Kaiser Permanente.

When asked why, if this is the case, Kaiser would foot the bill, Anderson said responding to such a question could violate doctor-patient confidentiality. "This is a unique situation," he said, declining to comment further. Anderson did affirm that Kaiser will be looking into the possibility of gathering outcomes data but noted that implementing such a program would be a challenge.

The challenge doesn't trouble William I. Catalona, MD, professor, division of urologic surgery at Washington University, St. Louis, who has a reassuring message about such an informational effort. Dr. Catalona "The HMOs might find themselves well advised to [gather that information]," Dr. Catalona said.

He pointed out that there are some very experienced urologic surgeons in the Kaiser system who may have performed more than 1,000 nerve-sparing radical prostatectomies with good results. But if they don't publish these results or keep track, the HMO would be unaware of these statistics. "It is also possible that, at a high-volume prostate cancer surgery center, a patient may end up being treated by a relatively less experienced surgeon who has performed many fewer operations and perhaps with less favorable results," Dr. Catalona said.

Dr. Catalona said he performs nerve-sparing radical prostatectomies at the rate of two or three daily, four days a week. He keeps a database on them and now has more than 2,700 recorded cases since 1983 – available for perusal. "It's a minority of squeaky wheels who are going to take this issue so far – say, all the way to the Supreme Court," he said.

Better info, better patients

However, patients seeking prostate cancer surgery are learning to ask better questions than ever before, Dr. Catalona said. When they need information on a physician's surgery results, Dr. Catalona recommends that they ask that physician to give them the names of some of their patients. "Then call them," he said. In a recent study authored by Dr. Catalona, he observed favorable prostate cancer surgery results occur less frequently outside of major centers, and smaller institutions seem to have more postoperative complications (CA Cancer J Clin 1999; 49:282-96).

One California HMO had 40% of patients reporting daily urinary leakage 12 to 18 months after surgery, he said. On the other hand, Michael J. Manyak, MD, wants to know if it's right to practically mandate the kind of subspecialization that changes urologists into radical prostatectomy surgeons. "Is that fair?" asked Dr. Manyak, professor and chair of the department of urology at George Washington University, Washington, DC. "It's fine to talk about track records and outcomes analyses, but the problem is, where do you stop? There has to be a middle ground."

William F. Gee MD, a urologist in private practice in Lexington, KY, concurs. He sees a lot of potential for problems in trying to use such statistics, and he is wary of widespread Dr. Gee advocacy for such information gathering programs. But he said patients ought to be able to have a choice about their medical providers. Dr. Gee "And I can tell you, I don't want to do surgery on anyone who doesn't want to be there," he said.

Experience counts

And therein lies the reason that the Kaiser Permanente case is far from clear cut. According to Anderson, Kaiser decided it was in "Mr. Pugh's best interest" to go outside the system. But might it have been better for Kaiser, too? By the time Kaiser had made their decision, Pugh had gone public with his story, so that the Los Angeles Times was preparing an article about his case (which was later picked up and distributed by other national news services).

Peter T. Scardino, MD, head of the prostate cancer program and chairman of urology, Memorial Sloan-Kettering Cancer, Center, New York, said he predicted that just such a patient would arrive on the scene – someone with a high profile, someone with the brashness to go public with his prostate cancer, someone who would crusade Dr. Scardino for the very best care – and that someone would win. He sees the development as a natural progression of current findings about radical prostatectomy, citing five separate studies suggesting that complication rates vary according to where it is performed. "We now have data from a nationwide Medicare study that the probability of major complications and or urinary problems varies widely from surgeon to surgeon as well as from hospital to hospital [1 Natl Cancerlnst 1999; 91:1906]," Dr. Scardino said. "Even more it seems to relate to the exact surgical techniques used." Dr. Catalona agreed. "Some procedures are harder to do than others, and experience is really most important," he said.

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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