Monday, April 18, 2005

Meeting archive cleanout: Cancer center bashing

Note: I wrote this a few days ago, but hadn't decided whether or not to post it. But since I'm still in Anaheim, I decided, what the heck.

Last week, I was perusing my usual way too large collection of medblogs, when I came across this post by Medpundit from Wednesday. I just had to respond, given that I happen to be faculty at one of those big NCI-designated tertiary care cancer centers she seems to be taking to task, apparently for abandoning "failures" to be "dumped" back on their primary care doctors or community hospitals.

In the post, entitled If the Cancer's Gone, Why is Death Knocking at the Door?, Dr. Smith takes issue with tertiary care centers. She starts:
Practicing medicine within easy reach of a renowned tertiary care center has its advantages. Patients can get highly specialized care, such as bone marrow transplants or epilepsy surgery, without completely uprooting the lives of their loved ones. It also has its disadvantages.
OK, so far, no problem, although I sensed she was building up to something.

She continues:
Aggressive public relations campaigns often leave people with the impression that the specialty center can work miracles, even for run of the mill diseases. And so, once in a while, you'll find someone who has landed in the hospital with a routine illness, such as pneumonia or emphysema, who asks to be transferred to miracle-worker hospital with the expectation that they'll get better faster there - even though there's nothing different to be done. The antibiotics don't work faster at a tertiary care center, and they can't transform old, smoke-damaged lungs into pristine healthy ones.
Still no problem.

Indeed, it's hard to disagree with this too much. I myself live and practice (and do my research) near a "big market," where I am subjected to radio, TV, and print ads for huge tertiary care medical centers (one cancer center in particular) all the time. These centers are older, larger, and more established than the cancer center where I practice, and their ads all too often sound as though they are promising the moon to patients. I occasionally even end up accepting patients with routine cancers that could be treated by any competent general surgeon because they wish to be treated at our cancer center. On the other hand, just as frequently patients head to the big city to be treated, because our cancer center, although rapidly growing and gaining a strong national reputation, is still not as well-established or large as the Meccas in the big city. (We hope to remedy that situation within the next 5-10 years.) Patients also go there sometimes to enroll in clinical trials, even though sometimes we have exactly the same clinical trial open at our institution. There's not much I can do about it except keep working to provide the best care and do the best research possible, thus doing my small part to fuel the growth of our institution, so that one day its reputation will be such that patients will feel the pull of the cancer Mecca much less, because we ourselves will be a cancer Mecca on the same order. (Of course, one unfortunate byproduct of that effort is that we ourselves will be forced to join the advertising; I still get an odd feeling when I see ads for our own institution, just as I did when I was in Chicago and Cleveland.)

Dr. Smith continues:
But even worse, is the tendency of the tertiary care centers to leave their failures on the doorsteps of others. They've done such a good job of selling themselves to the public that people do really expect miracles. Go to them with cancer, and you'll be cured, just like the guy in the newspaper or on the television special. I don't know what kind of conversations take place in the privacy of the consultant's office. Maybe they do honestly lay out the odds for patients, and the patient (and their family), blinded by hope, doesn't hear the bad mixed with the good. But, I do know that all too often, when the treatment has been exhausted and the patient ends up in the closer hospital in extremis, the miracle-working specialists are nowhere to be found.
Problem.

Dr. Smith is basically accusing us at the "Meccas" of making unrealistic promises of a "cure" to patients, treating them, and then dumping our "failures" back on the primary doctors and hospitals when they have complications or turn out to be incurable. I take issue with that. She is also implying (see below and note the title of her post) that we at tertiary care cancer routinely tell patients that their cancer is gone when it is not. (It is true that some oncologists will give chemotherapy even when it is unlikely to do any good, but I've yet to see one tell a patient his tumor is gone when it is not.) In every big tertiary care center I've ever worked at as a resident or attending (and I've worked at them in four states now), once we accept a patient from a smaller or less tertiary facility, we own that patient. If the patient is admitted to their original hospital, even for a routine problem like an uncomplicated pneumonia, we get a call wanting to transfer the patient, and we rarely refuse. If that patient shows up at his or her original facility with a hangnail, we get a call. (OK, I admit that I'm exaggerating here, but I think you get the idea.) In fact, if I were to refuse to accept a transfer, I have no doubt that I would end up having a conversation with one of my bosses, who would nicely (but in reality not so nicely) ask why I didn't accept the patient. Telling them it was a routine case that could just as well be handled at the local hospital won't wash, which is why I almost never refuse a transfer that I have the capability of caring for. Also, it is almost absolutely verbotten to refuse a transfer of an existing patient who has recently been under my care. It's an unwritten rule here and pretty much at every other major center where I've worked. It's the culture of the place. (It's also just the way most surgeons are anyway.) Our oncologists also lay out the odds and the clinical situation in great detail to our patients.

Just as I was starting to get worked up into a fine lather going, I kept reading:
As one of the oncology nurses told me yesterday, when neither my patient's miracle working oncologist nor his miracle working gastroenterologist would accept a patient transfer because there was nothing else they could do - "Don't you get the feeling they want us to take the blame for anything that goes wrong?" Then she added, bitterly, "They do this all the time, you know."
Say what?

Believe me, when something goes wrong after a patient is treated at a cancer center, it is not the referring doctors or institutions that take the heat. We get it all the time: "If your cancer center is so fantastic, then why can't you save my father/mother/wife/sister/uncle/aunt?"

To her credit, Dr. Smith didn't quite swallow it, but she bought enough of it:
Well, I didn't know that, but I certainly did get the impression they were reluctant to take responsibility for the complications of their treatment, or to admit to the patient that all was not as well as he had been led to believe. Meanwhile, my patient can't understand why he isn't feeling better. He's been told by better doctors than me that his cancer is "gone," his treatments "successful." And as far as the tertiary care center's records and statistics go - he is one of their success stories. But not because they cured him, only because they won't let him be anything but a success.
Uh oh.

I'm sorry. I really don't like to take fellow medbloggers to task, particularly ones whose blogs I happen to like, but I can't let that go unanswered. I'm guessing that, when she wrote the above, she probably didn't even realize that she was in essence throwing down the gauntlet to docs at cancer centers, like me. It doesn't bother me so much that she has the impression that some docs at tertiary care centers seem reluctant to accept back their complications, as there probably are occasional doctors out there who are like that. Perhaps she could imagine my reaction if she were to think about how she would react it if I were to start complaining about private doctors and community hospitals that send us patients they never should have tried to treat--but only after the patients' management has been made much more difficult by their attempts to manage what they were not equipped to handle.

What does bother me is Dr. Smith's apparent implication that tertiary care cancer centers do this sort of thing in order to protect their statistics, because such an implication relies on a misconception, the misconception that it is feasible to manipulate a cancer center's statistics that way. Her implication is wrong not because of my own experience working in cancer centers that says our patients rarely go elsewhere once they start treatment with us. No, it's because of a little thing called a tumor or a cancer registry. These registries are detailed databases that every NCI-designated cancer center must maintain about every cancer patient they treat and must include survival and incidence statistics by stage. A great deal of effort must be devoted to maintaining these databases, and, depending upon the size of the cancer center, the index may or may not be regional. There are rigorous criteria for these databases, with various bodies that monitor various cancer registries (such as the American College of Surgeons, the Centers for Disease Control and Prevention/National Program of Cancer Registries, or the North American Association of Cancer Registries), all of which require a followup success rate of at least 90% (preferably 95% or better), along with no evidence of bias in the lost-to-followup cases if the cancer center is to be allowed to use its data for survival statistics for publication. Cancer registries often follow state and county death registries, supplemented with a variety of other databases, in order to locate patients lost to followup. If a cancer center's lost-to-followup rate is too high or shows signs of bias in stage or types of cancers, its registry could lose its certification by one of the aforementioned bodies, which could be a big red flag at the next NCI site visit, never mind that a database that could be manipulated that easily would be useless to the cancer center's researchers. Also, because cancer centers are big contributors to state and regional tumor registries, many of these lost to followup patients will be picked up by the bigger registries and reported back to the cancer center that treated them.

Fortunately, it would be quite difficult to make a cancer center's statistics look any more than marginally better by "dumping" its "failures" back on the primary care system and community hospitals. First off, if its lost-to-followup rate is less than 5%, as it should be, then that's a pretty small percentage of patients. Diluting the pool even further, these patients will have a variety of cancers. At most, by pulling the sort of "dumping" Dr. Smith implies, a cancer center might change its statistics for any single cancer by a fraction of a percent. In any case, a patient like the one discussed above would not be considered a "success story" for purposes of the statistics of a major cancer center. Unless the patient moved out of state and did not get captured by a state or regional database, chances are that his relapse and eventual death would still get captured and assigned to the statistics cancer center where he was being treated.

The bottom line is that, while it is certainly possible that some individual doctors at large tertiary cancer centers might be reluctant to take back their complications or patients for whom they can no longer do much, the vast majority are not like that, nor can a cancer center so easily refuse to let a cancer patient it has treated be "anything but a success." It just doesn't work that way.

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