For those of you who haven’t yet heard, I have recently been diagnosed with Stage IV inflammatory breast cancer. This rare form of breast cancer is known for its rapid spread. True to form, it has metastasized to my spine. This means my time is limited. As a nurse, I knew it from the moment I saw a reddened spot on my breast and recognized it for what it was.
My recent journey through the health care system has been eye-opening. In only a few months, I have witnessed the remarkable capabilities and the stunning shortcomings of our health care system firsthand. I am writing here because in the time I have left, I hope my story and my journey can help illustrate why some of the reforms that my colleagues and I at the John A. Hartford Foundation, as well as many others, have championed are so important.
At the cancer’s earliest appearance, I consulted with a well-regarded oncologist in New York. After the tests were done she regretfully informed me that my disease was not curable. Because my cancer is hormone-receptor-positive, she recommended an evidence-based course of medications aimed at slowing the progression of the disease. Before I committed to this course of care, I wanted to get a second opinion. I secured an appointment with the pre-eminent researcher/clinician in the field of inflammatory breast cancer, at a top medical institution in Philadelphia.
Many of you know that eight months ago I was diagnosed with Stage IV inflammatory breast cancer, which has spread to my spine. My incurable diagnosis means that I live with a chronic disease, just like millions of older adults. Life continues to be fairly routine with work, play, friends, and family. One of my routines occurs on the first Monday of each month, when I visit the Maimonides Cancer Center for an infusion of drugs designed to slow the cancer’s impact on my bones. The center is cheerful. The staff greets me by name and hands me a buzzer that vibrates when I am next, the same buzzer you get at your local Olive Garden. Each month I see many of the same people receiving their treatments. I have already figured out who likes Dr. Phil, the local news channel, or a good book as they dutifully absorb their chemotherapy regimen.
One woman in particular caught my eye, perhaps because she is elderly and frail—just the kind of person that the Hartford Foundation is dedicated to helping. She appears to be in her eighties. Standing less than five feet tall, she walks in slowly and carefully, a pink crocheted cap on her head, accompanied each time by her son. Over the course of her infusion, her color fades. She leaves more frail than she came in. Each visit, she is visibly worse.
Of course I know that chemotherapy almost always causes short-term debilitation. But looking at this older woman, I can’t help but wonder. Did her clinicians talk to her and her son about her prognosis and the relative benefit of the chemotherapy? Did they understand the risks and benefits of aggressive versus palliative treatment? Maybe they do understand, and the chemotherapy will cure the cancer after months of misery, making it all worthwhile. But maybe not.
Shortly after I was diagnosed with inflammatory breast cancer a scan showed a hot spot on my lower spine. Was it the spread of cancer? My oncologist scheduled a bone biopsy at my hospital, Maimonides Medical Center, in order for us to find out.
A few days before the procedure, I went in for preadmissions testing. As part of my formal intake, in addition to collecting my insurance information and poking and prodding me a few times, the nurse asked me if I would like to fill out an advance directive. This was not because she was a miraculous oracle who knew the outcome of my biopsy, which would leave me with a Stage IV diagnosis. No, her question was merely standard procedure. I said yes, and shortly, a specially trained social worker arrived to walk me through the process.
A cheerful young woman reminiscent of camp counselor sat down next to me with papers neatly attached to her clipboard. The first step, she explained, is appointing a health care proxy, someone you trust to make health decisions for you should you become incapacitated. Being a nurse, I knew this, but it was comforting having someone there with me while I filled out the form. I chose my mother. Since my diagnosis, she and I had had numerous conversations about what I wanted should my disease progress and take away my quality of life. I trusted that she would respect my wishes, even if that meant making painful decisions as my disease progresses.
There is another form of advance directive that I haven’t completed yet—but will—with the assistance of that same social worker. It is nationally known as the POLST or Physician Orders for Life Sustaining Treatment. Developed in Oregon and disseminated by the California Healthcare Foundation, POLST turns the treatment wishes of seriously ill individuals into physician-signed medical orders that the health care team must follow.