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November 5, 2000

Arbitrary Life and Death Decisions

by Reynolds Holding

EVERY CASE is different, but for some reason Don Pugh has gotten lucky and Sharon Mussen hasn't.

Pugh and Mussen are patients of Kaiser Permanente's Redwood City hospital. Both have life-threatening medical conditions -- he a cancerous prostate and she a brain tumor. Both sought treatment by doctors outside the HMO's professional stable. But that is where their stories diverge.

You may remember Mussen from a column in this space two months ago. A 28-year-old social worker in Oakland, she and her family refused to accept Kaiser's judgment that brain surgery was out of the question, that chemotherapy and radiation were her only hope.

After canvassing brain-tumor specialists, they found a strong consensus that as much of Mussen's tumor as possible should be removed, and that the University of California at San Francisco was the place to have it done. But Kaiser refused to pay for the procedure, so Mussen's family scraped together the $65,000 for the operation at UCSF.

The doctor removed more than 90 percent of the tumor, apparently with no ill effects on Mussen. She is receiving chemotherapy once a month to shrink the remaining mass, and her prognosis so far is good.

But Kaiser has stood fast on refusing to pay the Mussens a dime. Despite the outstanding results, the HMO insists there was no reason to authorize treatment by a non-Kaiser doctor, and Sharon Mussen's health benefits `'are in effect only if . . . authorized." The Mussens are appealing Kaiser's decision.

It was much the same story for Pugh, a 55-year-old software consultant in Woodside. In August, Kaiser doctors said he had prostate cancer and asked him whether he preferred surgery or radiation.

Pugh said, not surprisingly, "I don't know."

But it didn't take him long to find out. He threw himself into a research effort that would do any scientist proud. He searched the Internet, poured over studies and talked to "probably a hundred people,' he says.

Convinced that surgery was the answer, Pugh was nonetheless concerned about side effects. In many cases, he discovered, men suffer impotence and incontinence after prostate surgery. His best bet: Find a vastly experienced doctor.

Pugh found Dr. James Brooks at Stanford University Medical Center, a urologist who had done about 500 prostatectomies. Pugh asked a 47- year-old former patient of Brooks what he thought of the doctor's work. "He said that six weeks after the operation, he was continent and making love to his wife," Pugh recalls, "I said, `That's the guy I want.' "

Unfortunately, Kaiser was of a different mind. The HMO insisted that any of its doctors could perform the surgery and that it would not pay for an outsider. But when pressed for statistics, Kaiser came up empty, insisting that "numbers are not the issue."

But Pugh says numbers are a good way to judge the experience and "quality of the surgeon."

Kaiser held firm, and Pugh fought back with uncommon persistence and knowledge.

In September, Kaiser turned down his grievance. About the same time, the Department of Managed Health Care, a newly created state agency that advocates for the rights of patients in HMOs, began negotiating with Kaiser on Pugh's behalf. Pugh gave his story to a newspaper and hired an attorney to make his case.

He then appealed Kaiser's decision, and the HMO turned him down again.

"It was stressful dealing with Kaiser and at the same time trying to figure out whether I was going to live and how long I was going to live," Pugh says. "But I'm a stubborn old cuss, and I wasn't just going to cave in."

He, his attorney and his wife got on the phone with a Kaiser doctor and vice president. They haggled for an hour and a half. And the next day, a message from the VP appeared on Pugh's answering machine.

Given the circumstances, the Kaiser vice president said, it would be difficult for Pugh "to establish what needs to be a very sound and good relationship" with a Kaiser doctor. So it was in Pugh's "best interest" to go to Dr. Brooks. Pugh had the surgery on Tuesday.

Kaiser spokesman Jim Anderson stresses that Pugh's case was an exception and that Sharon Mussen's case is not yet resolved. He also says "each case needs to be judged individually," and no two can be compared. But the Mussen and Pugh cases raise important questions, not only about Kaiser but managed medical care.

To control costs, HMOs limit patients to doctors within the system. No fancy specialists performing creative surgery that might save a life but break the bank.

There are, though, exceptions. Kaiser sometimes refers patients it can't handle to other doctors. For heart transplants or emergency treatment, for example.

Or when a "stubborn old cuss" like Pugh makes a big enough stink.

This seems an odd way to deal with issues of life or death. A less arbitrary method is in the offing Jan. 1, when the Department of Managed Health Care gains authority to order medical review of cases like Pugh's and Mussen's.

A panel of independent experts will decide whether an HMO like Kaiser offers the necessary care at a level that meets high standards. So if the preferred treatment is to excise a tumor and a Kaiser doctor can't do it, the patient gets a surgeon who can.

How this all works in practice remains to be seen. But the fact is, when survival's at stake, no one wants to be told he or she can't have the best care available. And who gets it should never be a matter of luck.

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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