A Nurse’s View of Health Reform

The New York Times

By Theresa Brown, R.N.

Oncology nurse Theresa Brown is a regular contributor to Well.

I saw a bumper sticker a few days ago that said, “I used up all my sick days so I called in dead.” I liked it because it was absurd, but also because it seemed so apt to the battle raging right now over reforming health care in America.

I could offer a tableau of stories, but instead I will tell just one. A patient we had several months ago was admitted for leukemia treatment. In his 60s, kind and immensely likable, he went through three different rounds of what we call “induction chemo” — the regimen and dose designed to cure. But in trying to cure his leukemia we’d weakened his immune system to such an extent that he no longer had any reserve, and fluids and intravenous antibiotics could not save him from the infection growing in his lungs.

I took care of this patient fairly often, and I got pretty attached to him. I had the privilege of being in his room when he told me, with tears in his eyes, that his first granddaughter had been born that day in a different hospital across town. A Pittsburgh Steelers fan, he hung a “terrible towel” from the TV in his room and grumbled whenever we dislodged it with the I.V. pole. One of his chemo regimens included the drug Topetecan, and the name of this drug led to many jokes: about drinks with little umbrellas called Topetecans, an entire island paradise named Topetecan, even the walks he and his gentle wife took prompted the question, “Are you dancing . . . the Topetecan?”

The dark side of this patient’s visit, in addition to his fight for his life against a very aggressive disease, was that he did not have good health insurance. We talked about it. He was in business for himself selling insurance, but his own personal health insurance was inadequate and didn’t cover all the care he was getting. They were a solidly middle-class family, and he explained that if he had any medical bills in the past he just paid for them out of pocket. Getting leukemia was not part of the plan, and neither was an unexpected six week hospital stay that included thousands of dollars of chemotherapy.

Six weeks is a standard amount of time for new leukemia patients going through their first round of induction chemo. We make them so vulnerable to infection that we keep them in the hospital to ensure quick action if they do get sick. This patient’s six weeks turned into two months, and then three months, as one chemo regimen after another made no headway against his disease.

During periods when he was feeling sort of O.K., he was constantly on the phone and the Internet trying to find a way to pay his mounting hospital bills. He told me, “I know there’s money out there; I just have to find it.” He was confident that he could locate money for his care and that he would “beat” the cancer.

And then I came to work one day, and he was dead as a result of pneumonia. During the fraught and too quick final three months of his life, the cost of his care weighed on him as heavily as his possible death. His wife lost her husband. In addition to mourning him, is she also saddled with a medical debt that will burden her for years to come?

Can we all agree that the worry provoked by any kind of serious illness should not be compounded with the concern that we cannot afford the treatment we need?

I’m a nurse so I’m focused on need, and the treatment required to save someone’s life represents a profound need. It is also a need that is always unanticipated. My patient thought he had planned well for his health care needs. He just never thought he would wake up one day with a diagnosis of leukemia.

But which of us does? And that’s why we need health care reform. My patient was savvy about the business side of health insurance, but not about how cruel and unfair life can be. He was suddenly confronted with an illness, and treatment costs, outside the realm of his imagination. Any of us could wake up tomorrow and find ourselves in the same terrible predicament: really sick, needing treatment we can’t afford.

So I ask the people who oppose health care reform to consider what they would do if they found themselves in my patient’s situation — because they very well could, sooner than they know. Any of us could wake up sick, without the coverage we need, in danger of losing the very job that gives us health insurance. Our lifetime cap on insurance, which we never thought we would approach, can be brought so near that the question of costs cannot be separated from the treatment needed to stay alive.

I have no statistics to support the need for reform; I can only describe what I have seen, because what I have seen brings the discussion of health care reform down to the level of individuals. What do you do when you’ve used up all your sick days and you’re still too sick to go to work? And what if you’ve reached the cap on your health insurance, need a drug that isn’t covered by your plan, or require a scan that you can’t possibly pay for?