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A Brief History of the R Word

Joseph Stalin

Princeton ethicist Peter Singer’s article in this week’s NY Times Sunday Magazine is creating lots of buzz. It is a classic utilitarian description of the case for rationing – QALYs and all – and a plea for a mature national dialogue about the dreaded R-word.Don’t hold your breath. To understand why, remember the words of Joseph Stalin: “A single death is a tragedy, a million deaths is a statistic.”

A society of grown-ups would read Singer’s article and say,

“Gosh, he’s absolutely right. If we don’t make some hard choices about whether to cover $50,000 palliative chemotherapy to extend a life of an 80-year-old by a few months, then we are choosing not to have enough money to provide universal health insurance, or to ensure that everybody has their pap smears and generic Lipitor (or, while we’re at it, to house the homeless, provide decent public education, or have viable auto companies).”
Rationing is inevitable – as I recently mentioned, talking about whether we should ration is like talking about whether we should obey the laws of gravity. The only question is how we do it. And what better time than now to have this difficult national conversation, being that we’re in the middle of retooling our entire healthcare economy, the fundamental obstacle is finding the money to pay the bill, and we have a president who truly understands the dilemma and is smart and mature enough to lead the discussion.

Yet rationing remains a political Third Rail, the Lord Voldemort of the healthcare policy debate.

The issue is not new, nor are its political trappings. It’s worth understanding a bit of this history to frame today’s debate – and lack thereof.

In 1984, Colorado Governor Richard Lamm famously opined that the elderly had a “duty to die” in order to free up resources for the young. He was vilified.

In 1987, Oregon stepped into the mess that is healthcare rationing, and spent much of the next decade scraping off its metaphorical shoe. In the face of exploding Medicaid costs, the state legislature decided not to fund transplants (including bone marrow transplants) in order to preserve limited funds to cover other services.

This was in the early years of bone marrow transplant, when BMT had a 50-50 success rate for certain types of childhood leukemias (it’s better now), and cost about $100,000. The state did the math, and found that for the same $100K, several lives could be saved by plowing the money into other healthcare needs, including prenatal care. And so BMT became an uncovered service. A perfectly rational decision if you live in Utilitarian, Most-Good-for-the-Most-People, World.

But that’s not the world we live in.

What happened next was utterly predictable. A 7-year-old boy named Coby Howard developed acute leukemia, Oregon denied his BMT coverage under Medicaid, and his mom went ballistic (any parent, including this one, would have done precisely the same thing). The only question was which megaphone she would grab first to make her case: the media, her local congressman, or a lawyer (ultimately, of course, she used all three). Here’s how it sounded on ABC’s Nightline:

[Ted Koppel] began the program with footage of Coby Howard and said: “When the State of Oregon decided to stop funding organ transplants, it allowed this boy to die.” Koppel later asked: “Is the cost of modern medical technology forcing public officials to play God?”

In the end, Coby received his BMT, paid for by private donations, but sadly died later that year. Under the leadership of state senate president (later governor) John Kitzhaber, a former ER doc, and in the face of withering post-Coby criticism, Oregon developed a more explicit rationing plan – of course, it covered BMT. Kitzhaber and his staff later described the pressures they felt after they took on healthcare rationing,

“Our detractors consist mainly of uninformed members of threatened interest groups who delight in comparing the Oregon plan to a perfect world.”

Stalin could have predicted this, of course. The Oregon rationing plan (both the ad hoc decision to deny BMTs and the more explicit “prioritized list” that followed) depended on a hard-boiled tradeoff between a single identifiable life – in this case, a cute child with a determined mother – and many unidentified lives. We’ll never know which kids were saved by better prenatal care, or whose strokes were averted by primary care and hypertension control. These statistical lives make for a pretty dull interview on Nightline – and they don’t blog.

Where do docs fit into all of this? Our ethical model is to do everything we can for the patient in front of us – we are socialized from the first day of med school to believe that the single death is indeed a tragedy (the late Norman Levinsky made this point in a wonderful piece in the NEJM called “The Doctor’s Master”). Although as responsible citizens, we care about society and the unidentified lives outside our office or our ICU, it is not our job to weigh the impact of our choices on them. And, of course, we won’t be sued by society for plundering its resources, but might well be sued by the family of an individual patient who feels that we didn’t do everything possible to save their loved one.

I just finished a couple of weeks on the wards, and once again cared for several patients – cachectic, bedbound, sometimes stuck on ventilators – in the late stages of severe and unfixable chronic illnesses whose families wanted to “do everything.” As I wrote last year, there are limits (like chest compressions) on what I am willing to do in these circumstances, but they are mostly symbolic – basically, I am a bit player in this crazy house, with no choice but to flog the helpless patient at a cost of $10,000 a day in a system that is nearly broke and whose burn rate threatens to ruin our country. Go figure.

Is there anything we can do? The favored solution, a board resembling the UK’s National Institute for Health and Clinical Excellence (NICE) with the teeth to limit certain new drugs and technologies, is hard enough. But even if we were able to get a NICE-like organization in place (doubtful), that doesn’t really address the brutally tough issue: is our ethical model one in which we do everything possible, irrespective of cost, for every patient when there is any chance of benefit, or one in which we place limits on what we’ll do in order to do the most good for the most people. An American “NICE” isn’t going to limit ICU care for 80-year-olds with metastatic cancer. That will require a much broader public discussion, and even harder choices – since they will need to be made at the bedside.

As Singer notes, every society that rations provides a safety valve for the wealthy disaffected. In the UK, you can buy private insurance that allows you to jump the queue for your hip replacement. Canada’s safety valve is called the Cleveland Clinic. We don’t talk about the percent of our GNP we are spending on Starbucks lattes, or on iPods, or on vacations. People pay for these things out of pocket, and receive no tax advantages when doing so. Given the American ethos of self-determination and consumerism, any rationing plan will need to allow people who can afford care that isn’t covered by standard insurance to buy it with their own money (with absolutely no tax advantage). Two-tiered medicine, sure, but I see little problem with this as long as we are using the money in the communal pool to provide a reasonable set of benefits to the entire population.

How might a thoughtful structure to support rationing be organized in the U.S.? When considering new technologies and drugs, it will probably entail an independent board empowered to make coverage recommendations based on cost-effectiveness, just as NICE has done in the UK. But just as importantly, at the level of individual hospitals or healthcare organizations, there will need to be committees of providers, administrators, and patient advocates that can set and defend limits on care. Such decisions would not automatically mean that grandpa can’t stay on the ventilator, but would mean that ongoing care would no longer be fully covered by insurance. Of course, these decisions would have to be all-but-immune from litigation threat.

Will this happen? Probably not. Twenty years ago, the great Princeton healthcare economist Uwe Reinhardt observed that there are two kinds of rationing: “civics lesson rationing” and “muddling through elegantly.” In the former, a NICE-like federal board, or local panels such as the one I’ve described above, weighs the evidence and makes these tough rationing decisions algorithmically and prospectively. The muddling through option, which Reinhardt felt was far more likely, involves limiting the resources available – the number of ICU beds, or MRI scanners, or CT surgeons – and allowing docs, patients and administrators to duke it out at the bedside. The evidence is that they do a decent job at triaging to provide the most good for the most people.

Of course, these limits are naturally present when resources are truly scarce – like livers for transplantation – and in these circumstances we have developed thoughtful rationing approaches. The point is that health care dollars increasingly resemble livers.

I’m pleased Peter Singer and others have dared to speak of the R-word in public, because it is so central to today’s healthcare policy debate. But will the society that brings you Rush Limbaugh and Glenn Beck (or, I’m beginning to think, some of our Democratic representatives) deal with it in an effective, mature way? I truly doubt it.

Why not?

Joseph Stalin would know.

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