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Respectful Insolence
One of my everyday blog reads is Orac's. Who is Orac?

Orac is the nom de blog of a humble pseudonymous surgeon/scientist with an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his miscellaneous verbal meanderings, but just barely small enough to admit to himself that few will. That Orac has chosen his pseudonym based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of an old British SF television show whose special effects were renowned for their early 1980's BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction for television ever produced, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

Respectful Insolence is a repository for the ramblings of the aforementioned pseudonymous surgeon/scientist concerning medicine and quackery, science and pseudoscience, history and pseudohistory, politics, and anything else that interests him (or pushes his buttons). Orac's motto is: "A statement of fact cannot be insolent." (OK, maybe it can be just a little bit insolent.)

Orac tries to keep his insolence respectful most of the time, but admittedly sometimes fails in the cases of obvious quackery and pseudoscience, personal attacks on him, very poor critical thinking skills, bigotry or racism, and just general plain stupidity.

Finally, Orac's "real" identity is an open secret, but he nonetheless keeps using the Orac pseudonym because (1) he doesn't want his blog to be the first thing that comes up when patients Google his name; (2) he has a long history on the Internet under this particular pseudonym; and (3) he likes it.

Here are a few words from Orac on denial:

I've been thinking about denial again.

It started a couple of weeks ago, when, inspired by a couple of patients I had seen or heard about, I wrote about denial in cancer, specifically how it can lead to horrific delays in treatment. I described a couple of recent patients and a patient from my residency, all of whom presented late with locally advanced breast cancer. In one of the cases, the tumor was bleeding, necrotic, and rotting. Yet these women somehow managed to hide their conditions from their families and in one case her husband. I had thought I had seen or heard it all--until last week. When it rains, it pours, I guess.

This is a story that shows that it's not always denial that leads to a delay in diagnosis until the cancer is very advanced. The specific details have been altered a bit to try to make sure there's no patient-identifiable information, but the basic story is true.

I was in clinic with a patient. Like many patients whom I evaluate, she presented with an abnormal mammogram. While I was taking her family history, she told me her sister had had breast cancer. In evaluating patients with breast abnormalities, family history is a very important piece of information, as having a first degree relative who had breast cancer before menopause is a strong risk factor for developing cancer. When I asked her how old her sister was when she got cancer (to find out if she was premenopausal or not), she told me around 46. When I asked her what happened, she told me she had died.

Then she told me more than I really needed (or probably wanted) to know.

It turns out her sister had collapsed and been taken to the hospital. In the course of her evaluation for her collapse, the diagnosis became painfully obvious.

Breast cancer.

Further evaluation demonstrated that the patient's sister had widely metastatic disease, including brain metastases, which had led to her collapse. She lived only a couple of weeks, and then succumbed to her disease. The patient told me that, after her sister's collapse, she had gone to her home. There, she had found large quantities of bandages, many of them bloody. Her sister had been hiding a large, fungating, bleeding breast cancer for many months, if not years.

I found out more. Her sister worked a low wage job and didn't have health insurance. Not only had she managed to hide her condition from her family, but also from her coworkers. After her hospitalization, she told my patient over and over that she didn't want to be a burden.

That's right. She died what was probably an entirely preventable death at a relatively young age because she didn't want to be a "burden." No doubt she suffered from that fungating mass on her breast for many months. Very likely, once the cancer progressed to metstastic disease, she suffered other symptoms that she somehow managed to hide, perhaps bone pain, neurlogic symptoms such as weakness or dizziness, perhaps abdominal pain. Although there is no way for me to know, I speculate that denial might have played a role early on in her disease. However, given what happened and what her sister told me, I have to conclude that, at some point, she realized what was wrong with her and consciously chose to hide it from her family, friends, and coworkers. She chose death over life, all because of a desire not to be a "burden."

Posted by aalkon at August 23, 2006 11:27 AM

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Comments

Does anyone think this is motivated by religious guilt, as the breast is considered a sexual organ? Maybe they thought they were being punished for having sex.

Posted by: Canada at August 23, 2006 6:34 AM

Her sister worked a low wage job and didn't have health insurance.

Maybe if she had health insurance she wouldn't have worried about "being a burden". A serious or even not-so-serious illness can be economic ruin for a family without health insurance. No, I don't agree with her choice and wouldn't do the same thing, but we don't make choices in a vaccuum. Like many women, she was probably raised to put everyone else first.

Posted by: deja pseu at August 23, 2006 6:59 AM

I hate to sound cold, but if you don't have health insurance or the private means to pay for treatment, you ARE in fact going to be a "burden" to someone. In this situation, you either expect doctors to treat you for free, or you expect someone else to pay for your treatment. Well, do YOU work for free? Do you expect other people to pay for other things, too, like fixing your car or doing your dry-cleaning? Why should medical treatment be any different? Get freakin' health care, people, or do as Amy suggested a while back - contribute regularly to your very own "ventilator fund." But don't blow it off and then expect other people to pay for it later.

Posted by: Pirate Jo at August 23, 2006 9:13 AM

Why do women have such low self-esteem? They would be falling all over themselves nursing their husbands if they had cancer, but don't think that they are entitled to the same attention and care from their husbands or their kids. Why is that? Doe it have a religious basis?

I think the damage that religion does to women is pervasive and affects every area of their lives.

Posted by: Canada at August 23, 2006 10:52 AM

Actually, Pirate Jo, having health insurance is no guarantee of anything except minimal treatment in many cases. I have decent coverage at an exhorbitant price, since I had to purchase it privately after my COBRA coverage ran out. Suffice it to say I didn't have the absolutely 100 percent no illness ever background the insurers demand for decent rates. Then I got cancer. Trust me, the drugs that keep you from wanting to die while you're fighting for your life: No generics for those, and so they cost hundreds. Want a so-called experimental treatment that every oncologist agrees is the future: Not covered, even after the $2000 deductible and $5000 out-of-pocket maximum. Oh and forget the tooth lost to chemo -- even dental insurance doesn't cover the bone graft or implant. I just did my taxes (late, I know, but with a good excuse) and my medical bills/insurance for one year exceeded $20,000. That'd break a lot of people and a lot of households. So it's easy but wrong to say get insurance, as though that solves everything. The problem is much bigger than that.

Posted by: Elementary at August 23, 2006 11:08 AM

What a dreadful story.

Posted by: Norman at August 23, 2006 12:07 PM

Okay, so health insurance doesn't "solve everything." Maybe the idea of solving everything is an unrealistic expectation to begin with. Maybe if you get something like HIV or cancer you are just screwed - at least for the next 100 years or so, until a cure is found. Sure that's easy for me to say since I don't have HIV or cancer, but a few decades ago people were dying of polio for godssake. No, we haven't achieved immortality yet. Yes, there are still things out there that can kill us, and I know I'm going to die of something (or nothing) just like everyone else. But I have no intention of dying a million-dollar death. I'll plunk down some dough for health insurance (I'm self-employed, too, and I know what a pain it is) but beyond that I'll take my chances and spend my money enjoying life. I'll accept the consequences of that choice, because I still think my sense of entitlement ends where someone else's wallet begins.

Posted by: Pirate Jo at August 23, 2006 12:44 PM

We dont' have to pay for health insurance, but we do pay in the form of unbelievable high personal income tax. But at least you don't hear of horrible stories like the one above. What I do hear of is people going to emergency and the doctors office for something to do, especially older people who may be lonely and want attention. There are also paranoid parents who bring their kids to emegency for every runny nose their kid might have. I think there should be a nominal user charge to discouraget that kind of thing.

Posted by: Canada at August 23, 2006 1:28 PM

We dont' have to pay for health insurance, but we do pay in the form of unbelievable high personal income tax. But at least you don't hear of horrible stories like the one above. What I do hear of is people going to emergency and the doctors office for something to do, especially older people who may be lonely and want attention. There are also paranoid parents who bring their kids to emegency for every runny nose their kid might have. I think there should be a nominal user charge to discouraget that kind of thing.

Posted by: Canada at August 23, 2006 1:29 PM

Apologies to anyone who's heard this rant before, but the widely-held belief that US-based uninsured people don't pay for medical services is false. When I was uninsured, I paid my goddam bills even though I was charged way more than what an insurance company would pay for the same service. I just regarded it as retroactive insurance, and I'm certain that I came out ahead on the deal.

Posted by: Stu "El Inglés" Harris at August 23, 2006 1:55 PM

Stu's right. The insurance companies pay way less than what the hospital charges people without insurance. We didn't have insurance when hubby had to have an operation, and we paid out the butt.

I tried to play hard ball with them and tell them how much I was going to pay in cash, right there, or nothing at all, and they wouldn't bite. One person doesn't have the power to lower the bill like insurance companies do.

Posted by: Starfox5253 at August 23, 2006 3:03 PM

she would've been better off with a bullet, if that really was her choice.

that's how i'd do it anyway.

Posted by: g*mart at August 23, 2006 10:17 PM

Well, Golly Pirate Jo--lucky you!
How lucky you are to live in a state that has private health insurance that you can buy.
It isn't possible for everyone to enjoy that privilege. Some states, like Maine, don't have carriers that will insure you, so you're stuck with ripoff artists like MegaLife and Health.
Pay $6000 per year for a catastrophic hospitalization policy under which nothing qualifies as a catastrophe. The policy will bankrupt you if you're poor and there's no money left to pay for doctors' visits if you DO need them. So. . . you don't go.
That's life in America-- where access to care is based on your earnings and getting ill can ruin you.

There aren't insurers in Maine because the state mandated universal access to health insurance. Can't make untold sums of money in Maine-- so they fled. If an insurance company can count its earnings, it's not enough.
It's not about health, it's about money --and that makes me sick.

ha ha! How ironic.

Posted by: Deirdre B. at August 24, 2006 7:46 AM

What do you US folk think about the UK system, where the National Health Service (NHS) is paid for mostly out of general taxation? There are some bits where you have to hand over cash, but in general the aim is to be "free at the point of delivery." The NHS is one of the largest employers in the world.

Posted by: Norman at August 24, 2006 8:32 AM

Well, as I stated in my previous comment, personal income taxes to fund this 'free' health care are ridiculously high. (FYI, Canada has a similar system to the UK.) And since it is perceived as free, see my previous comment.

Also, because they are trying to keep the costs down, you have to fight to get better quality treatment or diagnostics. For example, I wanted an ultrasound instead of a mammogram. Since this was more expensive, my doctor tried to talk me out of it, but I insisted and I got it.

Posted by: Canada at August 24, 2006 8:39 AM

>Since this was more expensive, my doctor tried to talk me out of it,


That's good, actually. Try asking any US health service provider what the actual cost of what they're about to do to you is. They look at you like "what a dumb question" (there may be some exceptions at the senior level of surgery). And that's a large part of the problem. Since nobody in the system has a clue what the value of a given service is, the law of supply and demand is strangled at birth.


Norman: I was a big fan of the NHS when I lived in London -- but in those days there were emergency rooms at all the teaching hospitals and reasonably prompt attention to general medical needs. I don't think either is true today, and it's a shame. I'm horrified when I hear tales of UK friends finding it's cheaper and quicker to go to Thailand for surgery.

Posted by: Stu "El Inglés" Harris at August 24, 2006 9:17 AM

Deirdre, do you expect companies to do business in Maine if they aren't making a profit? Seems to me your ire should be directed toward the Maine legislature.

And why is health insurance tied to employment in America? Once again, the government is to blame.

Yet for some reason, in spite of the fact that 90% of what's wrong with the health care system in America is because of government meddling, people want to put the government in charge of the whole thing! The only people who will benefit from this are the same politicians who have screwed it up in the first place.

You can accuse me of being a knee-jerk anti-statist if you want.

Posted by: Pirate Jo at August 24, 2006 12:34 PM

First of all, thank you Amy, for turning me on to Orac a few weeks back when you mentioned him in your blog. Very educational.

As for health insurance, our system is far from perfect. There has to be a way for everyone to be insured at a decent level. Healthcare costs are exploding, health insurance companies are paying less and less. My doctor who did my hysterectomy has been in practice for 30 years. He's a very good doc, but has decided for early retirement because the insurance companies are paying so little.

Stu, I know my doctor's have no idea what the procedures they order cost. And I've had tests run just to cover a doctor's ass. I had heat exhaustion and collapsed. They did a CT scan of my head (Cost $1500). The ER doc told me that the only reason he did the test was because if he hadn't and something had been wrong I could have sued him even though he was 100% positive I collapsed due to heat exhaustion. Makes me real anxious to go back to that ER.

Posted by: SarahBeth at August 24, 2006 1:02 PM

First of all, thank you Amy, for turning me on to Orac a few weeks back when you mentioned him in your blog. Very educational.

As for health insurance, our system is far from perfect. There has to be a way for everyone to be insured at a decent level. Healthcare costs are exploding, health insurance companies are paying less and less. My doctor who did my hysterectomy has been in practice for 30 years. He's a very good doc, but has decided for early retirement because the insurance companies are paying so little.

Stu, I know my doctor's have no idea what the procedures they order cost. And I've had tests run just to cover a doctor's ass. I had heat exhaustion and collapsed. They did a CT scan of my head (Cost $1500). The ER doc told me that the only reason he did the test was because if he hadn't and something had been wrong I could have sued him even though he was 100% positive I collapsed due to heat exhaustion. Makes me real anxious to go back to that ER.

Posted by: SarahBeth at August 24, 2006 1:03 PM

I was 27 with two toddlers when I was diagnosed with cancer. I did not have health insurance, I had major surgery and a week long hospital stay. I did not have chemo, which they told me was because "they got it all". Many years later, I had a specialist tell me, that either I was a medical miracle or a time bomb.

I have no idea,but I have wondered if I would have gotten the treatment had I had the insurance.

I am a painter, and was lucky to have a wealthy patron, that paid the hospital bill. It took me 5 years to pay the surgeon, and "other" expenses related to my treatment, while going to college, painting and working as a waitress with two small children.

I guess I thought leaving two children without a mother, would be a bigger burdern, oh and then I guess I decided I wanted to live.

Yes I have insurance now, and have dedicated the last 12 years of my career working in the "industry" trying to take care of the under insured.

Isn't life grand?


Posted by: Sonja at August 25, 2006 7:56 AM

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