Respectful Insolence

The deadly power of denial, part 2

i-e7a12c3d2598161273c9ed31d61fe694-ClassicInsolence.jpgAs I pointed out yesterday before stirring things up a bit, I was up most of the night Sunday night working on a grant (two, actually), and I went full tilt all day yesterday to get it done. Consequently, last night I was in no shape to blog. I chilled. I copied. I picked a rerun. Interestingly, I remembered this post, which was something I did way back in early 2005. the last time I reran it was in 2006; so if you’ve been reading less than four years, it’s new to you, and I’ll be back for sure tumorrow. It’s also interesting because this post is of a style and subject matter that I don’t write about much anymore. It’s also part 2 in one of the very first series of posts I ever did.

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?

Comments

  1. #1 Alison Cummins
    May 4, 2010

    I’m thinking of something a Catholic priest said to a woman distressed at becoming a burden and no longer being able to contribute.

    He told her that what she was contributing to her children was the opportunity to care for her so that they would have the experience of doing it gladly. That when they too became old and were being cared for by their own children, they would be able to accept the care because they would remember that they hadn’t minded when it was them doing the caring.

  2. #2 Finn
    May 4, 2010

    I think a big, unacknowledged problem with the vast number of breast cancer “awareness” campaigns is that women have become all too “aware” of breast cancer–to the point where believe that it is far more common and causes a far higher proportion of deaths than is actually the case, and therefore have come to dread it so much that, perhaps, this provokes an extreme level of denial in some women.

  3. #3 Scrabcake
    May 4, 2010

    See, there’s one of the good things religion does for society–it gives people someone like a priest that they can confide these things in and get meaningful reassurance. Now if priests would only stick to reassuring people about getting old instead of molesting children and covering it up…

  4. #4 DonZilla
    May 4, 2010

    I think a big, unacknowledged problem with the vast number of breast cancer “awareness” campaigns is that women have become all too “aware” of breast cancer–

    And I think there’s more money, time and effort being spent creating pink “awareness” products than there is on actual research. This shop is just the tip of the iceberg:

    http://www.pinkribbonshop.com/

    PS: Having children is no guarantee of care in old age, as my good friend who’s been working hospice for over 15 years can attest . . .

  5. #5 LovleAnjel
    May 4, 2010

    “PS: Having children is no guarantee of care in old age, as my good friend who’s been working hospice for over 15 years can attest . . .”

    It is extremely difficult to care for a older, debilitated/dying relative. Aside from whatever family baggage already exists, you are faced with not only the decline & death of your parent, but an hourly reminder of your own mortality/vision of your future. This certainly doesn’t excuse popping someone into a nursing home & hospice and visiting on Xmas, but there needs to be more info out there about the emotional/psychological stresses of elder caregiving (and not just the legal/medical/financial issues).

    That said, I helped care for my grandmother for several years before she went to hospice (the whole family did a tag-team effort). I was away at grad school and did not get back in time to see her before she died (calls went out when she started to go). At the funeral I expressed my regret to a cousin that had been there, and he expressed his regret that his last and most vivid memory of her was her death.

    If a family member wiped my butt when it was in diapers, I will wipe theirs when it’s in diapers (but my dad never changed any, so he’s out of luck).

  6. #6 BillyJoe
    May 5, 2010

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

    At least in Australia there is no financial burden.
    Everyone is insured either through private health insurance or through medicare.
    The situation in America is actually scandalous in my opinion.

  7. #7 ebohlman
    May 5, 2010

    Finn, DonZilla: Barbara Ehrenreich has written a good deal about those concerns, particularly in her latest book Bright-Sided.

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