Right now, my whole generation is watching its parents die, but they don’t all die as hard as three octogenarians in my family. My own father has been dying for years, depressed, incontinent, and in seemingly untreatable pain. None of his specific ailments is fatal; I guess he’s dying of “old age.” My wife’s father died with Alzheimer’s disease; I like to remember him as a tall, kind-eyed, wide-smiling man, the sort of person about whom people use the word “dignified,” but a more recent memory is of visiting him in a locked chronic-care ward where I found him wandering the hall, clothed in bewilderment, a diaper, and an open-backed gown. A year or so later, my brother-in-law Joe’s dad had a massive stroke that crippled his limbs, erased his memory, and eventually rendered him comatose, with antibiotics, food, and air pumping into him through tubes.
By the time he died, he had, in Joe’s words, “zero quality of life.”
And then I started thinking something else, and I’ll admit that at this point my thoughts made me feel queasy, a little like a hungry castaway catching himself eyeing a companion’s corpse. What I found myself wondering was this: might the notion of zero quality help us as we think about health-care costs? Every patient “cured” will die another day, probably not before getting older and sicker and consuming yet more money on hospital beds and drugs and medical fees. What will happen when silver-bullet cures are found for cancer and the flu? Will we then all die even later and longer and harder, of “old age,” adding to the national debt, stealing tax money from our grand-children’s education and from the safety of our children’s roads in order to slow down — that is, lengthen — our own wasting away?
But what’s the alternative? Rationing? The word has never in history rung a pleasing note; applied to health care, it’s positively discordant. Today, the R-word shrieks like a scorned soprano whenever governments trim health costs. Last spring, when Ontario’s Liberals buried within their budget speech two sentences cutting universal coverage for routine eye exams and what remained of physiotherapy and chiropractic benefits, the opposition, of left and right stripes, united to attack the cuts in the legislature every day for a week. Voters want more medical attention, not less: no one wants to think of health science the way we think of road repairs or even schools. Could the idea of placing limits on medical care ever, ever, get kosher enough to hit the political agenda?
Well, there was one time, one place, that it did. The place was the state of Oregon, and its unique story, a story of unspeakable questions being asked and answered in the most public way, starts with the cruel death of a little boy.
His name was Coby Howard. He was seven, he had leukemia, he had a cute, telegenic smile, he lived in the town of Rockwood, and he was poor enough to get government health coverage within the Medicaid system.
Except Oregon had, in June of the year of Coby’s death, joined a handful of other states — and many private insurance schemes — in withdrawing funding for most high-end transplant services. That included the bone-marrow transplant that might, just possibly, have saved the boy’s life. Heart-wrenching TV appearances, citizens’ petitions, and a massive fundraising effort followed his diagnosis, all to no avail. He died in June 1987. And then, something new happened.
In politics the world over, there is a template for matters of this kind, and it runs like this: 1. Government makes a controversial decision. 2. Tragedy results. 3. Public is outraged. 4. Government backs down. Shortly after Coby’s death, the Oregon legislature’s emergency board assembled to debate a motion to restore $700,000 (U.S.) for transplants — enough for eight or nine Medicaid patients. The charged debate took place under the gaze of the U.S. national press, which reported that while the politicians mulled, transplant patients were begging for their lives or crossing the Columbia River for surgery in Washington. Coby’s aunt Susan appeared before the emergency board and said (according to The Washington Post), “I asked him to smile for the cameras, when not thirty minutes before he had been vomiting…. I had to turn Coby Howard into a product so the public would buy him his life.”
Comments