Tuesday, August 14, 2012

Health care - too much and too little

kw: book reviews, nonfiction, medicine, public health, policy

When I finished six months of chemotherapy in mid-2001, I remember saying to my wife, "I am glad for modern medicine. Fifty years ago I simply would have died." As it happened, I lucked out; I hit a sweet spot in the history of colon cancer treatment. Someone today who discovers a large, Dukes' stage C tumor, will probably get care as good as I had, but they will not get identical care.

For one thing, the "gold standard" for chemo has changed. I received 5FU plus Leucovorin. At about the three month point I told the oncologist that it was getting painful to clap my hands (my son was playing basketball in a YMCA league every week). He became very grave, showed me an article about "hand-foot syndrome", and decided to adjust my dosage. He said if the syndrome was not checked, I could suffer from skin sloughing off the palms of my hands and the soles of my feet, and I might also have extensive nerve damage and numbness.

The modern regimen adds oxaliplatin (a platinum-containing cancer suppression substance) to the other two. The code word for this triple play is FOLFOX. It is much more likely to cause nerve damage, but I haven't read whether it makes the hand-foot symptoms worse or better or what. This means a larger number of people do not complete their regimen. Is it better overall? That is not yet known.

Other aspects of my good luck were a totally obsessive and incredibly skilled surgeon, at least one doctor who will talk sense without lying—I still see him every 3 years for a colonoscopy—and the oncologist all local doctors agreed was the one they would use or send family members to.

Many are less fortunate, and Otis Webb Brawley, executive VP of ACS, has encountered a great many of them. Once in a while, a book simply makes me furious. This was the case with Dr. Brawley's book How We Do Harm: A Doctor Breaks Ranks About Being Sick in America. I have reviewed at least a half dozen "anti-medical establishment" books in this blog. This one is the most revealing.

The opening scene is disturbing. A woman comes into an emergency room carrying her breast in a plastic bag. She wants it reattached. It turns out to be a large lump of tumor, so this is clearly not possible. Most doctors have never seen a breast self-amputation, and I had never heard of it before. It happens when breast cancer is untreated for a long enough time: The tumor takes over the blood supply to the point that the rest of the breast dies and just falls off, tumor and all. At the Atlanta hospital called Grady, they see about two such cases per year.

Early on, this woman had health insurance. When she first found a lump in her breast, several years previously, why didn't she see a doctor? Two kinds of fear. Firstly, like many women, she feared being disfigured. But even greater was her fear of losing her job if she took off too many sick days at work. She knew that surgical treatment might cause her to lose almost a week of work, maybe the whole week. She knew that if she had follow-up chemotherapy, she would miss one or two days a week for months. She would get fired. Once the self-amputation happened, keeping her job didn't matter, as she soon died.

Note to medical establishment: Require oncologists to work evenings and weekends. Not all of your patients are conveniently retired. Not all are allowed sufficient sick leave to take off fifty days in six months' time. When I was on chemo, I'd have been delighted to have my 5-hour session start at midnight. I could have slept through it instead of watching inane daytime TV. Ditto for dialysis centers.

This woman's story, and that of a few other patients Otis (he doesn't like to be called "Doc" or "Doctor") saw at Grady, introduce us to his first subject: Under-treatment. When I first got the book, and while I was reading the early chapters, I was expecting a polemic in favor of the PPACA, usually called Obamacare. Actually, this bill is mentioned only once, late in the book, and only in reference to the provision requiring insurers to accept people with "preexisting conditions". A deeper problem he sees is that, whether someone is insured or not, many poorer people are discouraged from getting routine medical care by job restrictions or a bullying culture at work. As a result, they only get "care" by visiting an emergency room, and frequently when it is too late.

The axis of the book is simple. Poor people are under-treated, and the rich and well-insured are over-treated. Both are evils. The middle of the book is about evidence-based medicine. There is precious little of it. Otis writes, "I don't know how you can practice medicine without measuring the effectiveness of the therapies you are administering." (p 166) Yet most doctors operate primarily by feel and supposition. They do what they might have seen in medical school or heard at a conference or read about in a journal, but very few take the time to dig in and find the facts behind it.

I know from my own study, and from a number of things I have read, that articles which report on clinical trials that actually tell us something useful are extremely rare. Many of those few have been gathered and summarized by the Cochrane Collaboration. It seems they have a substantial database, until you learn that there are thousands of clinical trials going on at any time, and tens of thousands that have been published, but a larger number that have not been published because they didn't prove what the company (usually a drug company) paying the bills wanted to prove, and finally that only a few percent are considered reliable enough for CC to recommend!

The over-treatment stories are, if anything, even more horrifying than those of under-treatment. One of the most disturbing is that of a 70-year-old man whom Otis calls Ralph, who was badgered by his wife into getting a PSA test. The ads for PSA testing for "prostate health" are targeted at women, pushing all their worry buttons; confirmed bachelors and unpartnered widowers almost never get screening of any kind, particularly for their prostate. Ralph's PSA measured 4.3, where "normal" is 4 or less. To many doctors, PSA in the range 4-8 means "watch and wait and check, using a finger, periodically." Ralph's doctor sent him for a biopsy, which was actually 12 painful needle sticks. Two showed low-grade cancer. Prostate cancer is typically slow and self-contained. One would think, "OK, let's check it yearly for a few years." Not Ralph's doctor. Ralph was "advised" to get the prostate removed, and eventually he did.

I won't go through the whole story of incontinence and impotence, radiation, eventually a bowel bag and a bladder bag, and death at age 77. Left alone, he had a good change of living into his 80s and dying of something else, never knowing he had cancer. I know only one man who died of prostate cancer, and he was 92. Ralph probably died early, and he sure suffered during those seven years. His death certificate doesn't mention prostate cancer, and because there is no category for iatrogenic over-zealousness, the recorded cause is septicemia.

Otis makes a good case in this chapter that the most likely reason prostate cancer "mortality" has been going down is that more prostate patients are dying of things like hormone treatments and other complications of over-treatment.

The USPSTF is one (so far) entirely honest reporter of well-analyzed clinical and epidemiological data. They do not recommend PSA testing for anyone, any time. The PSA level is very poorly correlated with cancer incidence or severity. It misses half the cancers. The more aggressive tumors get found by finger probing or by symptoms like having a hard time urinating anyway, so PSA is medically useless. It is, however, very useful fattening the wallets of quite a range of medical specialties, not to mention the makers of Depend® undergarments. A single PSA blood test costs between $70 and $240. The annual cost of roughly 20 million of these unnecessary tests is $3 billion, mostly from Medicare. The follow-up treatments, also mostly unneeded, cost billions more. No wonder there is a huge lobby working against setting standards for establishing risk before recommending PSA testing.

That is just one example. Not all screenings are bogus. Colonoscopy, for example, is the one way to prove whether or not you have a polyp or a tumor in the colon. When a polyp is found, a quick snip on the spot will prevent a possible cancer. When a tumor is found, a life may be saved, as mine was. Mammography is also worthwhile for older women. There is a recent flap over whether women 40-49 ought to have a mammograph. I think of it this way. The benefit is very small in this age range, and ten years less radiation exposure means fewer 70-year-old women would develop cancer from the radiation. Mammography is less definitive than colonoscopy, but it is a great deal more useful than a PSA blood test.

The closing chapter is a call to all of us to use our minds, to question our doctors. We all need to ask, "How can we know that (this dangerous condition) exists?"; KNOW, not just suppose. And to ask, "Supposing it exists, what are the effective treatment options?"; EFFECTIVE, not "sounds like a good idea" or "what my grandfather's doctor did". And to ask, "Are you afraid to say 'I don't know' when you don't know?" If the doctor hesitates, you probably have the wrong doctor.

On p 280: "The system is not failing. It's functioning exactly as designed. It's designed to run up health-care costs." In America in 2009, $2.53 trillion changed hands for medical "care". We only spend $1 trillion on food! It really ought to be the other way around: pay a bit more for better food, and a bit for a gym membership, and less for medical intervention. Otis's final call to us: Demand a health care system that can prove it, and when it can't, say "Enough!"

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