Life, at What Price?

Canada does not have universal health care, but it could. The secret might lie in the Oregon experiment, a radical and life-promoting solution

Photograph by Lynne Cohen

Five years ago, an American internist and health-care researcher named Peter Ubel wrote a book called Pricing Life: Why It’s Time for Health Care Rationing. His thesis was this: someone has to put the brakes on the rising cost of medical treatment, and that someone is the ordinary physician. Doctors, Ubel argued, should think about cost even as they consider their patients’ welfare, and should somehow balance these two responsibilities. The book never hit a best-seller list, and it was largely ignored by reviewers.

These days, though, its author occasionally gets invitations to speak outside the University of Michigan at Ann Arbor, where he teaches. Here is Dr. Ubel now, speaking on the wrong side of the Great Lakes, as a guest lecturer in a respectably filled auditorium of the University of Toronto. He begins his presentation with a straw poll. “How many here,” he asks, “think health care needs rationing?”

Sixty or seventy hands go up. Just one man — in his sixties, perhaps the oldest person in the room, and the only one wearing a suit — votes no. Ubel smiles, then asks, “How many think physicians should ration care at the bedside? ” The yesses are fewer now but they still, hugely, outnumber the handful of noes. “Freaky crowd,” Ubel says.

Certainly, it’s a self-selecting one, composed of students and teachers in the university’s Department of Health Policy, Management and Evaluation. For people like this, and a slowly growing number of others mostly of the genus policy wonk, rationing is no bogeyman. Rather, it’s an unsavoury reality, a necessary response to a notion that is inching its way into popular consciousness: the “unsustainability” of health care as we know it. This idea is closely linked to another reality: our ageing population (the proportion of Canadians aged fifty-five or over is expected to rise from 22 percent in 2001 to 32 percent by the year 2020). An older citizenry means higher costs: already, people over sixty-five, who comprise just 12.6 percent of the population, incur nearly half of all hospital costs. Ongoing advances in treatments and medical technology ensure that another death-defying cure will always be around the corner. And it will always cost money.

Meanwhile, the cost of existing treatments keeps going up. Peter Ubel flashes a series of PowerPoint slides to make his case. Cost of cholesterol drugs: up 63 percent in one year. Cost of analgesics: up 16 percent. Antidepressants: up 32 percent. Proliferation of mri machines: 61 percent in two years. Of pet scanners: 88 percent. The figures are American, but as he reminds the audience, Canada, too, is one of the top spenders in the world when it comes to health care.

For every dollar in the Canadian economy, a dime is spent on health care. Last year, under the heading of health, a total of $121.4 billion was spent by federal and provincial governments — an increase of 4.6 percent over the previous year, according to the Canadian Institute for Health Information (cihi). And, while governments spent $3,839 annually on health care for the average Canadian, the figure rose to over $17,000 for people aged eighty-five and over. The Conference Board of Canada worries that the overall health bill is currently growing 25 per-cent faster than the economy, though if you look at the trend line since the Eighties—rather than just during the past five years, which saw an injection of government funds after several years of cutbacks—the average growth is just 2.5 percent a year.

Whatever the final tally, it’s a lot of money. Money that won’t be going to schools, roads, sewers, peacekeeping, or aids aid to Africa. Money that we’ll all be paying in taxes, rather than on clothes, computers, or camp fees for the kids.

Unless we start thinking differently about health care.

Peter Ubel says we have to start doing just that. Doctors, he says, should check the price tag before ordering drugs and tests. Take fetal ultrasounds. “My wife had two thankfully normal pregnancies,” he tells the crowd at U of T. “Of course we had ultrasounds done, even though no study has ever shown it does any good . . . . With insurance, it’s a subsidized baby picture. [But] if we’d had to pay for it, I’d have said, ‘Give me a dvd player.’” Similarly, a routine pap smear every three years is enough to catch almost all potential cervical cancers; an annual smear costs $600,000 for each year of life saved through all those additional tests. That, Ubel suggests, is pricing a single human life too high.

But is it? The very idea of pricing life strikes most of us as a moral road that leads straight to hell—as perhaps it should. What doctor, knowing that she might cure a dying patient, wouldn’t do everything she can? What patient, offered that cure, wouldn’t jump at the chance?

A few years ago, I started wondering if questions such as these are as self-answering as they appear. It wasn’t anything to do with money that launched me on this track. It was the dying of three fathers.

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.”

Zero. A low number, but still a number. It seemed to suggest that we human beings are capable of comparing life to death and, sometimes, finding death preferable. It seemed to suggest that there is a place — definable in mathematical terms—where living is worse than dying. In light of the dying I had been witnessing, this possibility no longer seemed far-fetched.

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.”

And that’s where Oregon starteddown its new trail. The legislators, by nine votes to seven, said no to the transplant funds. The leading voice on the “no” side was Dr. John Kitzhaber, the president of the state’s Senate, whose day job was as an emergency-room physician. The $700,000 might save a few lives, Kitzhaber said, but would be better spent elsewhere — for instance, on primary health care for the more than fifty thousand kids in Oregon who had no health insurance at all, kids whose parents waited until they got really sick and then took them—sometimes too late—to emergency rooms such as Kitzhaber’s.

So, the doctor said, let’s do something different here in Oregon. Let’s provide less health care, but for more people. Let’s ration — yes, ration —health coverage. And when the post-Coby debate ended, he started putting flesh on the bones of his big idea. Roving the state in blue jeans and cowboy boots, he assembled a small group of health-policy advocates and lobbyists to frame a plan based on a simple notion: Oregon should move toward basic health coverage, not just for the poorest of the poor—a family of four earning $7,260 (U.S.) a year or less, according to the state’s Medicaid guidelines—but for every resident of the state.

Universal health care. It was a radical notion in Kitzhaber’s country, but it could be achieved, Kitzhaber said, without raising taxes. How? By reallocating health-care resources. Kitzhaber’s plan would first limit Medicaid coverage to “basic” services, including those that prevent illness and those that fight it most effectively. The dollars saved would be used to offer the same set of basic services to everyone living below the federal poverty level, which was then $12,100 a year.

Meanwhile, a law would be passed mandating every employer in the state to provide health insurance covering, at minimum, the same package of basic services. And, to keep premiums affordable, the state would help take care of people with especially expensive medical needs. Since self-employed middle-class people and the independently wealthy could be expected to buy their own basic coverage, the dream of health care for all suddenly seemed within reach.

It was a highly original idea, and thousands hated it. Right away, the idea of covering only “basic” services under Medicaid sparked fury across the United States. Oregon was rationing health for the poor! aids treatments would go first! Care would be denied to those who needed it most! Senator Al Gore was reported as saying the plan offended “fundamental fairness and decency.” The Catholic Health Association, the Epilepsy Foundation of America, the Gray Panthers, and The Children’s Defense Fund (board member: Hillary Clinton) voiced outrage.

But within Oregon, Kitzhaber quietly won — apparently by cold logic — the support of his fellow Democrats, many Republicans, doctors, hospitals, big business, small employers, and health insurers. By May 1989, he and his followers had pushed through the Oregon Basic Health Care Act. The law required Oregon to create a Health Services Commission that would rank all known health treatments in priority order. On this List, the Legislature could then draw the line between basic — that is, affordable — services, and the rest.

Above the rationing line, there would be health care for everyone. Below the line, the state would say no, and the law of the Wild West would rule: it would be everyone for himself.

I don’t remember exactly when I first heard about Oregon’s experiment: an ethicist friend mentioned it perhaps a decade ago, near the beginning of the adventure. Only much more recently did I cotton on to the broader story about rationing—that its existence is by no means confined to a 96,000-square-mile slab of Pacific Northwest.

The truth is, health care is rationed daily, and everywhere. It’s simply the only way there is to match the supply of medical miracles to the demands of sick citizens. The rationing criteria vary, as do the logistics, but the principle is the same: we can’t pay for all people to get everything, so we find ways to say no to some people, or some things. The biggest question raised by Oregon, and being explored by some policy wonks, is whether the process should be strategic and explicit, or ad hoc and hidden from the public eye.

Almost everywhere in the world, it’s the latter. The United States, for example, rations by income level, age, and disability. If you’re comfortably employed or endowed, you get private health insurance; if you’re poor enough, old enough, or disabled enough, you may get federally subsidized Medicaid and/or its senior-citizen partner, Medicare. Otherwise, you get the emergency room or, if you’re lucky, a crowded, resource-starved, community health centre.

In Canada, on the other hand, we ration in two distinct ways. First, we ration by the profession of the provider: nationally, we cover doctors and hospital services, leaving most of the country’s nurse practitioners, dentists, physiotherapists, chiropodists, and mid-wives to bill privately. And second, we ration by means of waiting lists. Need an mri or radiation therapy or a specialist appointment? Take a number.

This system has both strengths and weaknesses. Prime Minister Paul Martin campaigned for re-election in June by playing (with arguable success) on the widespread belief that waiting lists are inherently evil, and his government continued to trumpet that cause during health-care negotiations with the provinces, into the fall. But a well-managed waiting list need do no harm. Dr. Michael Rachlis, Canada’s leading health-policy guru, writes in his new book, Prescription for Excellence: How Innovation Is Saving Canada’s Health Care System, that transplant and cardiac-care waiting lists match priority to urgency with life-saving results. Many other wait times, he says, could be cut, without additional cost, by fixing inefficiencies in the way queues are managed.

As for selecting among providers’ professions, the case for drawing a line somewhere seems obvious. If chiropractors and psychologists get billing numbers, why not registered massage practitioners and hypnotherapists? Rachlis, for one, argues that the line is artificial and arbitrary. Science often favours non-MDs, he says; routine optometry has been proven to prevent vision problems, and chiropractors do best at managing low-back pain.

Logic suggests, then, that a less arbitrary approach to rationing would not only cost less, but also improve the quality of patients’ care. But logic rarely wins votes, and in Canada, reason brushes up against an amorphous but powerful force: our national identity. Canadians believe in their health-care system. It’s one of the things that distinguish us from our neighbours to the south, and from much of the world. To have been caught tinkering with the Canada Health Act would have spelled death to any party in the federal election last spring, and so no one proposed doing so (beyond, perhaps, suggesting adjustments to the role played by for-profit operations). Rather than facing up bravely to the reality of rationing, we may prefer the lie that our Canada includes universal, comprehensive health care.

It is — no question — a lie. Health care in Canada is a compromise arrangement between political reality and the vision of Justice Emmett Hall’s Royal Commission report in 1964. Hall had proposed comprehensive coverage for medical services, drugs, and home care, and for dental and optical services for kids. The Trudeau government sawed it off at medical services, and some (not a lot) of the rest gets covered (sort of) by some provinces. The 1984 Canada Health Act made it official: to get federal funding, provinces need only cover physicians’ and hospitals’ services—and only those deemed “medically necessary.”

“But what the heck does that mean? ” asks Colleen Flood, the chair of health law research at the University of Toronto. It’s Flood’s job, right now, to untangle that knot: she and two colleagues have received grants from the federal and Ontario governments to lead a three-year research project called “Defining the Medicare Basket.” The idea is to investigate which health-care services should be publicly funded, as well as consider who decides about that funding, and how.

Flood’s project is just one sign of a quiet momentum that is building toward restocking what health professionals call the “basket” in a more strategic, less accidental, way. In the wake of the reports of Royal Commissioner Roy Romanow and Senator Michael Kirby last year, Ottawa and the provinces agreed to move toward national coverage for home care and drugs. Whatever deal is finally struck, it’s either going to cost serious money or force cuts to existing services. Over the years, provinces have, with relatively little fuss, denied funding to items such as cosmetic surgery and in vitro fertilization. But what’s next? Hip replacements? Knee surgery?

Flood’s point is that if we’re going to take up costly new initiatives such as home care, and keep pace with new medical innovations, some things have got to go. “Like what?” I asked. Like annual general checkups, Flood answered. “There’s no evidence that there’s any health benefit at all from an annual general checkup,” she said. But we fund that while we don’t, across the board, fund childhood vaccinations. “Some provinces fund chiropractic pediatric neck manipulations,” she said, “which some people think is actually dangerous. But we don’t have universal access to insulin.” She paused. “So we have a pretty weird system.”

Weird, in part, because the system is hidden and mysterious to practically everyone involved. The federal government stays out of the business of defining “medical necessity,” leaving the provinces to determine (by a process few understand) the list of services for which physicians can bill. Within that framework, it’s left up to the nation’s doctors to decide what’s “necessary” for individual patients.

Is this a bad thing? You decide. A landmark study known as the Dartmouth Atlas found stunning variations in treatments ordered by U.S. physicians. Doctors in some regions were six times more likely than elsewhere to prescribe surgery for chronic back pain. Differences were almost as large for lumpectomy and mastectomy. Overall, spending on traditional, fee-for-service Medicare in Miami was twice Minneapolis’s, after adjusting for age, race, and sex. Variations appeared to have nothing to do with the incidence of illness or with patients’ socio-economic status.

So, what’s medically necessary? If doctors disagree so much, what hope is there for prioritizing health care? The answer, again, may lie in Oregon.

The State House in Salem is topped by a rippled marble fez that’s nothing like any other legislature’s dome — an architectural signal, perhaps, that Oregon likes being different. “Oregon is not really in the United States,” Peter Ubel told me when I asked him about the state’s nervy health-rationing move, which is a funny thing, when you consider that the Oregon Trail was, at one time, a potent symbol of the American spirit: for years, the image of tens of thousands of pioneers setting out in their wagons from Independence, Missouri, headed for the great Northwest, defined America’s can-do individualism, its notion of manifest destiny.

The Oregon of today is much changed, of course, but it does retain its frontier identity: the state was first in the U.S. to legislate bottle refunds for beer and pop, first to see same-sex couples married legally, among the first to allow medical use of marijuana, and first (and only) to allow physician-assisted suicide. Toward the end of a day’s drive down from Vancouver to Salem, I explored the state’s beaches and coastal hills; on a previous visit, in winter, I had breathed the mossy air of the Columbia Gorge’s vertical forests. But the thing I had really come here to see was on the fifth floor of the Human Services Building, just east of the great fez: a filing cabinet that would offer me a glimpse of the way the Health Services Commission set out to prioritize medical treatments.

This record is less dreary than you might expect. Filed the way they came off the old continuous-feed printers, each page inverted to the next, the minutes at times evoke the drama of ordinary people (five physicians, a nurse, a social worker, and four mere citizens) tackling something unprecedented. I asked Commissioner Ellen Lowe, a grandmotherly, Lutheran, social-services activist who drinks her martinis dry, to tell me what that was like. “It was a time of great optimism,” she said. “We had a sense that we were building a road map rather than following [one]. I looked at it as an opportunity to be a pioneer in health care.”

The commission started work in September 1989, beginning a year-long series of public meetings to which hundreds of citizens flocked in order to give testimony, their concerns and suggestions covering aids and prenatal care, dentures and kids’ cavities, naturopathy and transplants. While all this was going on, the commissioners ordered up what must surely be one of the more quirky public-opinion polls in history. Students from Oregon State University took to phone banks to ask one thousand citizens how they felt about a long list of conditions — seizures, burns, reliance on a wheelchair, problems with hearing or sex, itchy rashes. “If you feel the situation describes good health,” the pollsters said, “give it a score of a hundred. If you feel it is as bad as death, give it a score of zero. If the situation is about halfway…,” and so on. The results provided made-in-Oregon “quality of well being” weights (called qwb) for symptoms and side-effects.

Meanwhile, a subcommittee was taking testimony from specialists in every medical discipline, teasing out a list of symptoms for each known medical condition, side effects of each treatment, the probability of a treatment’s delaying death, and the length of that delay. Finally, the staff collected rudimentary cost estimates. The cost of an appendectomy, for instance, would need to include the bills from the surgeon, the anaesthetist and the hospital, plus drugs, outpatient care, and so on.

Fitting all this information into a common template for all conditions and treatments was hit-and-miss, but eventually, the commission’s computer had the data it needed. The machine took a cost-effectiveness formula that looked like this: