I won’t lie and say the moment was transformative. I’d always had compassion for my patients, even the less sympathetic ones. On my psychiatry rotation, I received a tongue lashing from my resident for being disorganized–spending extra time with the retired subway driver who’d attempted suicide after secretly battling depression, and now wanted to talk to someone. I objected mentally if not aloud when my attending stood over the alcoholic lying in the ER in an encephalopathic daze, and poked and prodded her with grim harshness. He was “teaching” me the signs of endstage liver disease, and he was also showing me his position of power and contempt. But my own paternalistic sympathy had given way to fraternal empathy. I had something in common with my patients, even the “charity cases” who showed up on clinic days, an inkling at least about their helplessness and shame.
In our country, more than ever, illness is stigma, and the more dread the disease, the more profound the ostracism. A patient becomes his condition, and someone with a serious one like cancer is often beyond help and so beyond redemption. You are uninsurable and of abridged longevity. You are undesirable, a liability. In a culture of youth and innovation, infirmity disfigures you socially and psychologically. You must keep your leprosy hidden. You don’t have to be poor or “lower” middle class to suffer this fate, though for them ruin is swifter and more certain. The guy who works in the hardware department at Walmart married to the part-time secretary in a small office—neither of them gets insurance as a “benny,” and neither of them can afford it out of pocket. One of them gets sick and it’s catastrophic for both of them and for their children. They borrow thousands from family and friends. They lose their car, their house, if they have one. They get chased by creditors or declare bankruptcy, and the cost of health care for the rest of us gets ratcheted up one more notch.
Even if you have insurance, you shouldn’t be complacent. Even from a “me first” perspective there is much that’s alarming about the current state of health care in America. Much of what is broken affects everyone. There is an illusion of choice in our current system, but it’s only an illusion. Most people get their insurance at work, and most employers have only one or two “plans” from which to choose when offering insurance to their employees, and most employees have just one choice, the plan they’re offered, whose costs have risen dramatically and will keep doing so. There is no choice between what we have and a “government” alternative. Insurance companies currently use Medicare as a guide (excuse) for what they cover (do not cover). And what we have now will shortly be gone, replaced by grossly inadequate care for an increasingly uninsured fraction of our population (with the rest of us shouldering the social and direct costs), and the remaining fraction spending more and more of their money on insurance that covers less and less. If you think the economy has nose-dived recently, just wait until the pervasive effects of bloat and neglect in our health care system really kick in.
Even at the personal level, most patients make arbitrary decisions with enormous consequences about the care they receive. They assume that care they will be superior or at least adequate, because they’re in America after all, and we have the best, no? But in fact our system of physicians and hospitals and the insurance companies which control what these providers do, is highly uneven in quality. The primary motivations of the participants are less and less patient care and more and more pecuniary concerns or are heavily distorted by pecuniary concerns. Reimbursements and coding have crowded out the “art” in medicine. As a doctor, you don’t have time to see patients as individuals, to listen to them long enough to make wise decisions about what to do for them. You don’t even want to be judicious about what you “do” since insurance only pays you for what you do and not for what you say, or how long you listen. Patients have become their conditions, their broken parts, the procedures that repair them. How many knees does the orthopod have on his schedule in the morning, how many colonoscopies can the gasteroenterologist squeeze into his busy calendar on Friday? The hospital down the street, the one that’s convenient and where your primary (who’s local and has privileges there) wants to send you? Your hospital is competing for patients with the university hospital downtown, so now you have cardiac bypass close to home, and renal transplant, though the physicians performing those procedures in these redundant programs perform fewer of them and are less expert than the physicians downtown, and you are less likely to have a good outcome, no matter how “good” your insurance.
I’ve practiced medicine for most of my adult life, and I’ve also lain on the other end of the stethoscope. I’ve benefited directly and personally both as a doctor and as a patient from a health care system that at its best leads the world in know-how, technology, and personnel. And I’ve witnessed first hand medical practice so repugnant I believe it rivals for squalor that of the worst back waters on the planet. All this within a few square miles in the same city.
Let’s consider my own disease as an example of the difference who, how, and where make on outcome. There was a study published a number of years ago in which the outcomes for stage one and two Hodgkin’s disease were compared at Stanford, a major tertiary care center, with those at a large community hospital in the same area. The Stanford patients had around a 95% cure rate, which is what one expects for the early stages of this curable cancer. The community hospital patients had a 75% cure rate, substantially lower. Why? In spite of treating the same kind of patients with the same methods, the community hospital failed in many small ways. Cancer is a disease whose treatment requires the collaborative skill of numerous people. A good cancer center has good radiologists to read the CT scans and x-rays, good pathologists to examine tissue specimens, good radiation therapists to properly define the treatment portals, and excellence among the other non-physician staff who play active roles in cancer care, the nurses and technicians who are so essential.
There is redundancy in the cancer center “market.” There are cancer centers of lesser quality selling themselves to the public, and other similar complex care programs doing the same: cardiac bypass, organ transplant, trauma—it’s a long list. The health care system’s problems are mostly not about the haves and the have-nots, though having so many uninsured people does insidiously aggravate the other issues. Ultimately, these individuals turn up in emergency rooms in the later stages of their illnesses and must receive care, often ineffective and a good deal more expensive than that of timely intervention. And it is a travesty that among the European nations and Japan we are near bottom of the list in measures such as life expectancy and infant mortality. The best care is available here, but you have to look carefully to find it. And you need to be a physician or a quick study as a lay person to know what you’re looking for.
Three doctors saved me from cancer. But that was years ago. I no longer trust the health care system they personified and to which I owe my life, and have devoted that life as a practitioner. I’m dubious of the diagnostic strategies used and procedures ordered in the care of friends and family, and for myself. As a user I’ve become a minimalist, and then only after a thorough researching of the medical circumstances and the available literature. There is too much shoddy care, too little choice for me as a “consumer” to do otherwise…to be continued