Elizabeth Edwards died recently of breast cancer at 61, leaving behind three children, Cate (28), Emma Claire (12), and Jack (10). Described by her eldest daughter as intelligent, humorous, and witty, I'm fairly certain that she would not have wanted to leave her children at such a young age. Yet, in November 2004, shortly after the presidential election, she announced to the public that she had discovered a breast lump, which ultimately was diagnosed as cancer. She admitted shortly after her diagnosis that at age 55 that she had not been screened for breast cancer with a mammogram for about four years.Which is why the recent report from the San Antonio Breast Cancer Symposium, done annually in December, is particularly worrisome. The study period between 2006 to 2009 found these screening rates to be lower rates than the past. Only 50 percent of women eligible to be screened for breast cancer actually did so. That number improved slightly to 60 percent with women receiving two mammograms over a four year period.
In other words, 40 percent of women, who should get mammograms, aren't getting them.
Just like Elizabeth Edwards.
Is it personal choice? A cost issue? Or lack of time? Lack of understanding? While experts debate, I'll tell you.
It's a lack of time and lack of understanding. Everyone is incredibly busy. Given a choice, patients will do the right thing if they are nudged to do so. In fact, they want doctors to help guide them to the correct choice. Elizabeth Edwards certainly as a mother and professional woman had the financial resources and intelligence to know the importance of annual mammograms starting at age 40, yet didn't do so. Perhaps she didn't think she was at risk. Maybe she was focused on her children and husband and didn't care for herself as much as she should have, a common trait for many mothers.
The question is was she reminded of her options? If she was a patient in my practice, she would have benefited from a team effort that constantly worked to keep her healthy. At every office visit, whether with a primary care doctor or a specialist, every patient at every check-in received a personalized checklist that is age appropriate. Ms. Edwards would have seen on her checklist that she was overdue for her mammogram.
To make it incredibly easy to get it done, all of the medical offices that her doctors work at have a radiology department with mammogram machines. To make it even easier, patients can walk-in to have them done. No appointments needed. No paper work required. She simply would have finished up with her doctor, checked in with radiology, and had her mammogram.
If by chance she was busy and otherwise healthy and hadn't seen a doctor face to face, but was overdue then she would have been notified by mail at least three times to remind her of that fact. A team of healthcare providers use the electronic medical record to find which women are overdue, contact them, and then check again to see if the mammogram was done. If after a few attempts if there still was no response, her primary care doctor would get a message to call her, just to make sure she fully understood the choice she was making. If she still declined, while that would not be the medically advisable, her decision would be respected. After all, she is an adult and would have been fully informed about the pros and cons of her decisions.
It's likely, however, that instead of a four year absence, she would have opted for a mammogram. It would have shown an abnormality months before she actually felt a lump. Chance of recurrence is much less when breast cancer is caught at a non-palpable stage.
Despite all of the advances in oncology and chemotherapy treatments, the biggest decline in breast cancer deaths over the past 25 years was due to mammogram screening. Though the new healthcare reform bill which make preventative services like screening for cancer free, that isn't enough. If people are too busy to remember, much like doing the right thing for retirement planning, they won't do what is in their best interest, even if it is what they would have done if they only had time.
In other words, it isn't about the individual as much as enabling the individual to do the best for herself by designing the system to get the best outcome. It is true in retirement planning and automotive and road design as it is in healthcare.
I don't believe that if she had such a healthcare system in place to help her stay healthy and well that her life would have ended this way. While the system I describe exists today in California, where I work, and our breast cancer screening rates are far far better than the study quoted at the San Antonio Breast Symposium, any death that was too soon and preventable in my mind is a failure. A failure not of the individual patient, but of the healthcare system.
Perhaps that is why she was a health care activist.
Although I've never met her, I am certain that given a choice had she had the healthcare system around her which optimized her chances for the right decision, she would have never wanted to leave her children at such a young age. The absence of such a system is the true tragedy.
My thoughts are with her family, friends, and most especially her children, Cate, Emma Claire, and Jack.
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