Figuring out your own health care: Mom’s last trip

“I trust you to figure out your own health care.” Pete Buttigieg’s recent comment about personal responsibility and health care has generated outrage for its failure to grasp how patients and their families and loved ones struggle to navigate the time-consuming and often inadequate delivery of health care in the United States.

It has been two and a half years since what my sisters and I have come to call “Mom’s last trip.” This was the day my sister Andrea, who is a medical doctor, discovered our mother, Francyne Diedrich, on the floor of a small half bath in her home, wedged between the toilet and the wall. She was conscious but unable to move. Andrea could not move her so she called 911. The Charlotte Fire Department arrived first followed by an ambulance. Our mother was transported to the hospital and admitted as an in-patient.  Her lab results obtained from her bloodwork while she was at the emergency room indicated that she was in acute kidney failure.  After several days of treatment, doctors released her to a rehabilitation facility. Shortly after her arrival there, she collapsed and, no longer conscious, was taken back to the hospital. She passed away that evening, just eight days after leaving her home for the last time.

Long after her death, our mother continued to receive a bill for the ambulance. We disputed the bill for well over a year after her death. Our mother had been diagnosed with and treated for lung and breast cancer in 2004, and had long suffered from severe COPD. She had been ill in the week prior to her collapse and Andrea was visiting her daily to check on her. The culmination of her illness and her overall weakness due to her COPD resulted in her being too weak to get up when she fell.

My other sister Dawn, a lawyer and executor of the estate, spoke with the ambulance company that transported our mother. She explained our mother’s condition at the time of the fall and that she passed away shortly after the transport. The person she spoke to was sympathetic, but read the report prepared by the EMTs who transported her. Significantly, this report noted “patient denies any pain complaint” and that the patient’s daughter had requested transport for evaluation. Based on this information, Medicare denied payment because transport was deemed not medically necessary.

We three sisters laughed at this. There in the midst of the bureaucratic language of emergency medicine and insurance coverage was our mother, insisting she was fine and determined to remain at home. Our mother ALWAYS said she was fine when confronted with the prospect of going to the hospital. She was determined until the end to be at home and as independent as she possibly could be. “Patient denies any pain complaint” was our mom in a nutshell.

 When Dawn requested and received the report from the ambulance company and the results of the medical examination upon admission to the hospital, we discovered additional details. The report noted that our mother said “that she does not remember falling” or even more significantly, “why she was even in the bathroom.” This is an accurate account of the fact that our mother was confused and not fully comprehending what was happening to her. Yet, the report also stated, “Patient is CAOx4 and reports feeling lethargic over the past two days.” CAOx4 stands for conscious, alert, and oriented, and the x4 indicates she would have known who she was, where she was, the time of day and date, and that she would have understood her present situation. Andrea, the doctor who was there at the time, has no recollection of the EMTs asking our mother any orientation questions and is confident that, had she been asked these questions, she would not have been able to answer them.  Moreover these two statements are inherently inconsistent. The denial by Medicare focuses on two “facts” – CAOx4 and no pain, and ignores the confusion. And what is completely omitted from the report is the fact that our mother could not walk and it required two firemen and the two EMTs to get her upright and moved onto a gurney to be rolled into the ambulance.

We tell this story about our mother’s last trip not to elicit sympathy for the fact that we had to fight with the system about an ambulance bill while grieving. We are our mother’s daughters after all. We offer this story not as a complaint about our particular situation, but as just one example that we think reflects a broken system. We add this to the growing number of stories of people not calling ambulances, sometimes calling Uber instead, for fear of bills they cannot afford to pay. There are other horror stories of people being transported by ambulance and then receiving enormous bills for things completely outside their control, such as being transported by the ambulance to an out-of-network hospital. Finally, there are stories of insurance coverage being denied because it is decided after examination in the emergency room that the situation was not an emergency, even in cases like ours where the patient is admitted to the hospital.

In the end, we paid the ambulance bill out of pocket. Despite our conviction that the inaccurate documentation of our mother’s condition led to the denial of coverage, we sisters chose to make payment despite the estate having closed and, thus, there was no legal liability. We did this out of respect for our mom’s strong ethic about paying bills and managing money carefully. We had the financial resources to make the payment—many families do not.

We have resources that most people don’t have. With a doctor, lawyer, and professor who studies illness and disability in our family, we have far greater medical, legal, economic, and social capital than most Americans. And yet even our combined expertise and social capital was unable to correct what was clearly a flawed rationale for denying coverage. More than a flawed rationale, however, we believe this is flawed system of care. Everyone’s mother deserves better.