Wednesday, February 02, 2005

The deadly power of denial, part 2: it's not always 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."

Leaving aside the issue of how our health care system sometimes imposes grim choices on the working poor who are unfortunate enough to be stricken with serious disease, I still have to wonder how such a young woman could come to such a decision and then have the fortitude to stick with it as her disease progressed. Personally, to some extent, I can understand not wanting to be a burden on anyone. My grandmother died a few months ago, after a prolonged decline. Her last three years or so were painful to watch, as a once-vital woman, who was a tennis and badminton champion in her youth and still played well into her late 70's (even after valve replacement surgery 12 years ago), slowly lost her ability to walk (due to spinal stenosis) and her short-term memory (due to mild dementia). Were it not for her husband's financial means, she would certainly have ended up in a nursing home or living at my mother's house. Certainly I can understand not wanting to live out one's old age like that. I certainly don't. I doubt anyone does.

On the other hand, breast cancer is not the same as slowly degenerative diseases of age. For such degenerative diseases of old age, there is little or no hope of significant improvement, only of either halting or slowing the progression (particularly given that my grandmother was considered too high risk to operate on her spinal stenosis and that her mild dementia was from multiple mild strokes). Unless it is metastatic to bone or other organs, breast cancer is treatable, with a relatively high probability of success after surgery, chemotherapy, and radiation if the tumor is discovered early enough. And, after treatment, her chances of living a normal life would have been quite good. If only her fear of "being a burden" upon those she loved hadn't kept her from seeking medical help much sooner, it is very likely that she would have lived. I can't help but wonder how much of her fear of becoming a "burden" on her family was due to the financial aspect of the problem and how much might have been due to ignorance of how treatable breast cancer can be. If only she could have encountered someone who could have shown her that breast cancer treatment is usually only a temporary (albeit relatively long-term, several months to five or more years) thing. If only there were a way to cover catastrophic illness for the working poor that didn't put the fear of huge, unpayable medical bills into the hearts of so many. If only...

But, then, none of it matters anymore, does it?

12 example(s) of insolence returned:


At 2/01/2005 11:48 PM, Blogger Dreaming again said...

But, then, none of it matters anymore, does it?

Unless someone reads this and is doing this, or contemplating not telling. If the realization that the burden of their death is the biggest burden they could place on someone ... then it matters. You never know who you might be helping by posting this.

 

At 2/02/2005 2:30 AM, Anonymous Anonymous said...

I still have to wonder how such a young woman could come to such a decision and then have the fortitude to stick with it as her disease progressed.Depression is one possibility. When I suffered from it, I lived in a mindset that could have accommodated dying slowly rather than being a burden. My sense of utter worthlessness would wash over me in tsunamis many times a day. And, although I was quite depressed, only my husband and my best friend knew about it. I successfully hid it from my parents, coworkers, and other friends.

To all those people who discount simple (non-bipolar) depression, who scorn the use of meds, who think that it's no big deal, I say: you have obviously not walked in that Valley of Shadow. (Not suggesting you do, Orac, just that some people do.)

Karen

 

At 2/02/2005 3:51 AM, Anonymous Anonymous said...

It might matter to people who have told themselves they'll commit suicide as soon as they learn that they have this disease, and not try to fight it.

 

At 2/02/2005 7:31 AM, Blogger Robin said...

Leaving aside the issue of how our health care system sometimes imposes grim choices on the working poor who are unfortunate enough to be stricken with serious disease, I still have to wonder how such a young woman could come to such a decision and then have the fortitude to stick with it as her disease progressed.Don't you think, though, that the issue you leave aside is vital? If the state had provided for her care, as it does in my country, isn't it more likely that she would have gone to hospital?

Of course nothing is certain. But I believe it would be more likely.

As a right-winger, how can you defend a system which, in one of the wealthiest countries in the world, leaves so many working poor uninsured, and not just uninsured, in the worst cases - but unable to even afford proper food, much less proper health care coverage!

 

At 2/02/2005 8:09 AM, Blogger Orac said...

First off, perhaps I was overly sad when I wrote that last sentence. What I meant is that the reasons don't matter anymore because it's too late to save her. She's gone. Of course it matters to the family and friends left behind. It matters a whole lot. Given how relatively few people read this blog, I have no illusions that this piece will prevent anyone from doing the same thing, but you never know.

Second, yes, depression is a possibility that I should probably have mentioned. I have some experience in this area in my wife's family. However, as far as I can tell from the patient's account, her sister was not depressed. I could be wrong. She may have been hiding depression along with her cancer.

Finally, I don't know where Robin got the idea that I am a "right winger." Certainly, my politics tend to lean conservative, but certainly not as much as they did ten years ago. Perhaps she hasn't seen my comments on Inauguration Day. I've contemplated the issue of a single-payer plan. I had a conversation with a good friend of mine about this very issue the other day. He's far more "right-wing" than I ever was. Believe it or not, we both expressed the opinion that perhaps a single-payer system couldn't be worse than the current system. In fact, we both agreed that the current system has many of the drawbacks of a single-payer system (plus a host of other drawbacks) without the benefit of full coverage for all. It shocked me to hear him echo my half-flippant comment that we might as well go all the way to a single-payer plan. But, perhaps that's a topic for another post.

 

At 2/02/2005 3:24 PM, Blogger Joseph said...

A single-payer program could give you the choice between voting for a program run by Earth First and voting for a program run by the Institute for Creation Research.

Even if you can decide which to back, you will have to live under a system chosen by people who were probably voting on other issues.

The cancer victim might also be unwilling to be a burden on taxpayers.

 

At 2/02/2005 4:01 PM, Blogger janeslogin said...

When I read the original blog about denial a few days ago it occurred to me that a possibility other than denial could be suicide by procrastination. This may be something like depression I suppose. I am not entirely convinced that voluntary euthanasia and assisted suicide are options which we Americans should oppose so passionately.

 

At 2/03/2005 7:50 AM, Blogger Robin said...

Sorry if I insulted you, Orac. To me, the term "right-winger" includes "conservative" as a subset. I'm glad to hear you support a single-payer system.

P.S. I'm a guy. :)

 

At 2/03/2005 9:28 AM, Blogger Orac said...

Robin,

Sorry for the gender confusion. I'll try not to let it happen again.

Actually, I'm not sure you could really say that I now support a single-payer system. It's more that, given how screwed up our present system is and how many patients I deal with who are uninsured (I work for a state institution), I'm presently rethinking my previous opposition to it, thinking that our present system has most of the flaws of a single-payer system while lacking the one big benefit, universal coverage.

 

At 2/08/2005 3:40 PM, Anonymous Anonymous said...

It saddens me to no end that this woman died without seeking treatment for a treatable disease. The healthcare system I work for wrote off more than million dollars in indigent care last year. We may gripe about it in finance meetings, but we never turn away patients who need care because we know we won't get paid for it. I'm not sure either that a single payer system would be terrible, but I'm sure that if it looks like Medicaid or Medicare it could never support the whole population of the U.S. Mel

 

At 2/15/2005 1:02 PM, Blogger Carrie said...

This was an eye opening post.

One of my sister's died at 46, under different circumstances. But still, I know for a fact she was tired of illness. And more kept cropping up. I don't know, I just think she knew she didnt' have the energy to fight and she wouldnt' win anyway.

It sounds incomprehensible to most people. But until a person has been in that situation, nobody knows what it's like.

Thanks for sharing this story. :-)

 

At 2/22/2005 10:22 AM, Anonymous Rickard Helde said...

"Even if you can decide which to back, you will have to live under a system chosen by people who were probably voting on other issues.

The cancer victim might also be unwilling to be a burden on taxpayers."

I'm not sure what Joseph is trying to say here. I am myself a doctor in a european country which has had a single-payer system for decades. While I myself sometimes gripe about the flaws of the system, I would never under any circumstances want a change back to the way it was. Neither would, in fact, even the most reactionary right wing party represented in our parliament. Having to turn down someone needing care (for a deadly or nonlethal disease) is something I fortunately have never had to do. Believe me, it's a better way. And, surprisingly, cheaper, too.

 

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