One year after passage of the Patient Protection and Affordable Care Act, the debate roars on, in Congress and everywhere else. And these debates often revolve around a big question, even when it is left unspoken or implied: Is health care a basic human right?
In 1990 I made a quantum leap from practicing in the Navy's single-payer, universal-coverage health care system into civilian pediatrics. Having been insulated from the profit end of health care for almost a decade, the move to the U.S. healthcare system of haves and have-nots turned out to be a culture shock.
My first civilian job was at Wood River Community Health Center in Rhode Island, and one of my first patients was Jennie, a 3 month-old who had been placed in foster care because of her mother's drug addiction. Being in foster care meant being on Medicaid. Poor children on Medicaid have several strikes against them. Not only will a provider often lose money by seeing them, but these children are on Medicaid because they are special needs patients, or in foster care because of abuse and neglect, or from impoverished circumstances that have put them at risk of malnourishment, or exposure to lead or smoke. These are the most labor-intensive patients in a pediatric practice. How well they are cared for is the measure not only of a pediatrician, but also of a society.
By the foster mother's description, Jennie had a generalized seizure -- a convulsion -- at home. Her physical exam was completely normal. I called the only pediatric neurologist in the state at that time and faster than I could say "foster care" he understood the kind of reimbursement he could expect. He insisted he did not need to see the child or do any tests. I was shocked. No EEG? No imaging studies? This was the same doctor who routinely performed unnecessary but very expensive EEG's on every insured headache patient he saw.
"What's the point?" he challenged. "The mother is a drug addict; this was a withdrawal seizure. You don't need to rule anything else out. Load her up on phenobarbital."
Phenobarbital is a sedating drug that back then was commonly used to treat seizures in children, but we usually looked harder to document and find a cause for the seizure before we settled into therapy -- especially in a 3 month-old.
I was angry and backed into a corner. I told Dr. Do-Little that if he would not see her then I would refer her to the ER at the Rhode Island Hospital, and let them contact him. He was on the staff there and would have no choice but to respond. Do-Little begrudgingly relented but got his way in the end. He was rude to the foster mother, and did only the most cursory exam on the child. He started medication without doing any tests.
Practicing pediatrics in the Navy meant I always had the resources to deliver state-of-the-art care -- and no excuses not to. But here, no matter how strongly I felt that my patient should receive a certain service, I might not be able to get it for her because of her inability to pay. It was the first time in my medical career that I knew what a patient needed, and had to settle for something less.
Did Jennie deserve better? Did she have the right to the same health care as, say, my daughter? These are awfully solemn questions for public discourse, and are likely to keep us running in circles through a haze of abstractions and ideology. We need to think less like judge and jury over who deserves health care, and more like stewards.
As a nation, even in this recession, we can claim remarkable prosperity relative to the rest of the world. (Nowhere is this truer, incidentally, than in the highly profitable private health care industries.) More inspiring, however, are the brilliant medical advances that continue to emerge from our academic centers and teaching hospitals. This drive for new knowledge and innovation in the pursuit of health and healing is our real treasure -- America at its finest. It has always been the best in people, not greed or profit, that has driven meaningful medical progress.
Yet the system isn't working for us. We are spending too much, and getting too little. We need to be better stewards of our medical riches. We need to see ourselves as stewards, and ask questions from that perspective, rather than who deserves what slice of the pie.
So let's redirect: Given our considerable medical resources, what moral responsibility do we all share in the fair, prudent, and just allocation of these resources. From this position of stewardship, we are likely to ask more practical questions: What would a smart, compassionate, affordable health care system, released from the stranglehold of special interest, look like? What preventative and therapeutic services should it deliver? What responsibility does the individual hold? Once we have a clearer picture of what we expect of ourselves and the system, we can turn to how we can make it affordable.
Stewardship gives us direction and purpose. If we can tune out the noisy rabble-rousers, reframe our questions, and commit to responsible conversation that is grounded in our own common sense and decency, I believe we would find much common ground, and make a lot more progress towards a just and cost-effective health care system.