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Waiting for ‘the green one’
Treating a patient with little medical history and no insurance is a challenge.
My second patient in clinic the other day was a pleasant, middle-aged Hispanic woman, Ms. R, tanned and tired from a life lived longer than her years on earth. With her was her daughter, worried, anxious and looking to me for help. Two years ago, Ms. R had been diagnosed with a lymphoma in Mexico, her native country, where she was a field laborer by day. Publicly provided health care offered her a diagnosis and treatment, which I struggled to read in the Spanish “treatment summary” that she had carefully preserved and carried with her over the last two years. She was there to see me that day because two months ago, she’d started to feel unwell again — drenching night sweats, weight loss, back pain and leg swelling — and had been found to have large intra-abdominal and intrapelvic masses on CT imaging. A small needle biopsy showed that the lymphoma was back. She didn’t have insurance or legal documentation of citizenship, and her local oncology office apologized to her that they would not treat her because of insufficient funds. So she was referred to see me instead.
I had so many questions that afternoon, and very few answers. I didn’t have a clear sense of the original diagnosis, or how much treatment she’d received and with which drugs, or what kind of response she’d had, or whether her relapse represented the original disease or something else that had subsequently evolved. I could make out a few things on the ‘treatment summary,’ which as it turned out only summarized the most recent treatment — ESHAP — and not the entire course. Ironically, this made the case for treatment summaries in general — if only this document had been filled with useful information, my patient’s diligence in keeping this on her person at all times would have enabled the complete transfer of information from a public hospital in Mexico to my clinic, in the absence of a shared electronic medical record system.
Transfer of information
Ms. R struggled to tell me much beyond what was on the sheet in front of me. She was told that she was cured and had subsequently decided to come to the United States to start a new life after cancer, where she could be closer to her daughter and her sons. She couldn’t — or maybe didn’t want to — remember too much about what had happened before. Finally, she volunteered, her original treatment included “the blue chemotherapy.” Ah, this was helpful — probably mitoxantrone then. I countered, “How about any red chemotherapy?” wondering about the receipt of doxorubicin. “No,” she answered, and then in a helpful and inspired addition, she offered, “Not even the green one!” I smiled.
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Later that morning, I talked about Ms. R’s case with several of my colleagues, and the story came up for further discussion during our multidisciplinary tumor board. I imagined the same story played out under different circumstances. A 50-year-old U.S.-born woman with employer-sponsored health insurance is diagnosed with diffuse large B-cell lymphoma, successfully treated with six cycles of R-CHOP and enters remission. Sometime later, she relapses. She still lives in the area where she was initially treated and, in fact, reconnects with the same oncologist. Her earlier records are accessed, and she is immediately started on appropriate salvage therapy. She demonstrates chemosensitive disease and enters some sort of remission. She undergoes autologous stem cell transplant and is cured.
There are so many possible breakdowns in this best-case scenario, even for U.S. citizens who are employed. Not all employers offer insurance, and some benefits are better than others. Not all with insurance can access timely treatment or have appropriate therapies covered. There is no national shared electronic medical record system, and information may be missed or tests may be duplicated when patients present to places where they were not initially treated. There may be delays or barriers to accessing expensive but available and potentially curative therapies such as stem cell transplant.
Difficult situation
Ms. R is even different. She not only lacks insurance but doesn’t appear to have citizenship. Both of these issues have significantly affected her diagnosis and treatment. Now what should I do? Should I send her away? Tell her that she is not welcome in my clinic? This is hard to do when a patient with a life-threatening disease sits in the examining room in front of me, frightened, her young daughter beseeching me for help.
We have decided to treat Ms. R, with the best treatments and supportive care that we can devise and offer to her. But we know that our treatment will likely not be curative. She will not be a candidate for a transplant.
Instead, after whatever results we can achieve with our therapy, Ms. R will likely return to her hometown in Mexico. There, she will wait for “the green one,” for when her lymphoma does come back.