"I walked in a person, and out a cancer patient," my dad said as we filed home. Crossing this threshold, we found ourselves on the other side of medicine – the side on the exam table or gurney, as opposed to the one standing over it. As a physician I was used to the latter. This is my family's story in our new position and how the cost of medical care has impacted us.
My father – an engineer – worked furiously. His "free time" was consumed with jogging, fixing household items, doing yard work – essentially anything to keep busy. As an American employed overseas at diagnosis, he did not have U.S. medical insurance, but rather an annual cap of $500,000 for health care. While this amount is generous in Europe, we accepted the exorbitant cost of care in the U.S. so my dad could be near his family during his battle with non-Hodgkin lymphoma.
My dad's care was transferred to the academic institution where I trained. As his advocate, my first task was to schedule a PET-CT. After bouncing between central scheduling and radiology, I was instructed to speak to billing. Exasperated, I explained our situation and inquired how much this test may cost: "$12,000," I was informed, "is the price for patients without U.S. insurance." (This was my first encounter with the "charge master," a list of services and prices conjured by hospital administration. Hospitals set the price and then expect payment to be negotiated down by insurance companies. Uninsured patients, however, are quoted prices and charged according to this list.) My body tightened as my eyes watered.
This test cost only a few hundred dollars in Europe and I knew it wasn't "worth" the price quoted. How could we get through the year in need of multiple tests, medications and chemotherapy according to this list? I negotiated: "My dad really needs this test and we only have a limited about of money." Silence. "I went to medical school and residency here," I pleaded. "Is there anything you can do?" After discussing with superiors, I reduced our charge by several thousand dollars. I paused, as I couldn't believe I had to resort to such assertions. My small sense of triumph was clouded in an overwhelming sense of unfairness and anxiety.
That was just the beginning. My dad went on to need a stem cell transplant, necessitating several weeks in the hospital as well as re-hospitalization for graft-versus-host disease, a complication of his transplant. This disease has been the only thing to keep my dad from constantly moving; it has been hard for us to see him become weak, lethargic and sallow. We were not in control of his disease or its corresponding medical bills.
We asked about cost frequently and kept an informal and approximate record when available: filgrastim, $14,000; echocardiography, $7,000; office visits, $300 and so on. Providers often expressed polite concern, replied with something to the extent of "I don't deal with that," then referred us to billing. Billing representatives never met my dad or understood his medical condition or need. Providers continued with treatment plans without regard for cost; my family controlled what we could, namely using warehouse pharmacies and doing as much self-care as possible. We found little compassion for our concern.
In time, it became clear we were running out of money. My parents contemplated selling their home or having my mom return to work (something she had not done in 20 years); my siblings and I made plans to subsidize health care costs. As my dad fought physically, we all faced this enormous financial worry. This worry has been intertwined with my dad's struggle with cancer. Providers cannot separate financial aspects from the esteemed patient-centered care of medical conditions.
Fortunately, my family recently learned of our successful bargain for my dad's insurance cap to be increased through 2013, after which we are embracing Obamacare to access health services without financial fear. My dad continues to battle on.
We feel lucky for this. We are grateful that all Americans – despite resources, expertise or knowledge of our health care system – now have the opportunity to receive equitable and affordable health care. As my family is experiencing, the vulnerable position of illness is stressful enough.
This post originally appeared on the Costs of Care blog on March 24, 2014.