My mom passed away last December to Stage V breast cancer metastasized to her liver. During this battle she developed ascites (an accumulation of fluid in the peritoneal cavity) as her liver failure progressed. This accumulation of fluid was not only extremely uncomfortable but painful as well. In an attempt to find symptomatic relief for the last months of my mom’s life, the oncologist presented us two options: we could come in to clinic weekly and be tapped to have the fluid drained or we could implement a permanent drain in her peritoneal space.

Per the doctor’s advice, we opted for the latter option. The doctor recommended this option because my mom was on blood thinners and this plan obviated the need to continually reverse her Coumadin dose. Thus this equated to less time for her in the clinic and was less expensive for the hospital and our family… or so we all thought.

Our insurance company approved the top of the line specialty drain for this procedure. After the procedure, the hospital provided us with the first batch of drainage supplies. My dad and I learned how to properly drain my mother and change her dressings. We got into a routine of draining every night before bed. There was a dramatic improvement in my mother’s quality of life due to the release of extra of pressure in her abdomen. All was copasetic until it came time to reorder our supplies.

“Hello Ms. Ball! I understand that you are reordering the drainage and dressing kits, unfortunately they are out of plan for your insurance.”

We were dumbfounded. How could the insurance cover a system in which they did not support the supplies?

“These are non durable goods and not covered. The cost of the kit will be 600 hundred dollars monthly with a deductible of 750 for the first month.”

Our jaws dropped.

Due to my mother’s illness she was no longer working and was waiting to receive disability benefits. Six hundred dollars a month was more than a third of her entire income on disability. Our oncologist was horrified to learn that the nondurable goods associated with the drain were not covered. He had no idea that this was the case. Our doctor had recommended this plan to not only reduce chances of infection but also minimize costs for our family. This knowledge would have altered his recommendation of treatment plan for our family.

Yet it gets better, the drainage system leaked, requiring dressing changes two to three times a day. These extra dressing changes increased our out of pocket expenses by two fold. The cost of maintaining this system was extremely prohibitive. We could either afford to pay our bills or pay for the supplies of this drainage system. Thus, we resorted to using non sterile dressings instead of the prescribed dressings. Our replacement dressings included sanitary pads, urinary pads, saran wrap, and the occasional paper towel.

Although these means were clever and much more cost friendly for us, they greatly increased my mom’s chances of a peritoneal infection. A peritoneal infection would have resulted in a hospital stay and a much more costly bill for both our family and the insurance company than the sterile dressings my mom needed. My mom always joked that the solution to our financial struggles with medical care costs was for her to just hurry up and die … which much to a young daughter’s dismay was the heartbreaking truth of our situation.

Alexis Ball is a patient’s daughter.

This story was part of the Costs of Care 2011 healthcare essay contest, with the goal of expanding the national discourse on the role of doctors, nurses, and other care providers in controlling healthcare costs.  These stories from care providers and patients across the nation illustrate everyday opportunities to curb unnecessary and even harmful health care spending on a grassroots level.