Many people believe that neurologists are particularly attracted to detail. I prefer to think of the issue as one of precision rather than pointless obsessiveness. Some years ago, I was asked to discuss a case for the New England Journal of Medicine’s series of CPCs called the Cabot Cases.
In preparing the case for publication, I found myself in an argument with the editor about the placement of an apostrophe. There were two diagnoses in this case: aphasia from a cardiac source embolism to the left cerebral hemisphere and hypercoagulability as a paraneoplastic syndrome. In my view, aphasia is a Trousseau syndrome (i.e., the word “aphasia” was suggested by Trousseau), whereas hypercoagulability as a paraneoplastic syndrome was Trousseau’s syndrome, because Trousseau both described and suffered from the disease. I am very much opposed to the trend to remove eponyms from the names of diseases and syndromes as to do so strips medicine of some of its most illustrious history. But, only a handful of eponymic disorders deserve the apostrophe. Antonie van Leeuwenhoek’s disease (diaphragmatic myoclonus) is another example.
History in medicine is not a mere avocation. In addition to the old saw of helping to prevent the same errors from being repeatedly made, it provides us with the perspective needed to approach diagnostic and scientific challenges in our own era. It also combats hubris. In carefully researching my eleven New England Journal CPCs I have never encountered an idea that had not evolved from those before it.
In grand rounds, in medical journals, and particularly in the lay press, we are regaled with “revolutionary” ideas, but that they are completely new is an illusion. Throughout history, people have always been on the “cutting edge” and have repeatedly believed that they had some sort of huge advantage over prior generations.
When the Supreme Court ruled that President Obama’s sweeping overhaul of the nation’s health care system was constitutional, about the only thing critics and supporters could agree on was the historic importance of the legislation itself. But if history is any guide, there will be one other inescapable truth: The Affordable Health Care for America Act of 2010 will generate the same unintended consequences that have shaped, distorted, and even perverted so many other important pieces of legislation in our nation’s history.
Whether tackling social security, veterans’ benefits, civil rights or immigration reform, Congress has demonstrated over the past 75 years that when it addresses significant social issues with complicated legislation, the results will, more often than not, vary dramatically from what was originally intended. In some instances, as in the case of the GI Bill, the impact was broader than the original drafters could have dared to hope. More commonly, as in the case of social security or immigration reform, a small detail has ended up undermining the loftiest goals of the original bill.
A general rule of thumb for determining how likely a bill is to veer off course is to ask how ambitious the legislation is: the more far-reaching, the more likely it is to produce unanticipated consequences. As we saw with health care reform, big, complicated laws are often the product of partisan brokering and compromise that makes their “intent” ambiguous and open to interpretation. That gives enormous power to the government bureaucrats charged with enforcing the law, and to the courts that are inevitably called upon to settle the conflicts. The gap that opens between the bill’s lofty goals and its often haphazard implementation is the breeding ground for unforeseen results.
On Independence Day I thought it would be interesting to look at the causes of death of some of our famous Revolutionary era patriots. When I started researching this I anticipated early deaths from infections and untreatable chronic diseases like diabetes and hypertension. Interestingly many of the famous early Americans lived to a ripe old age, and died of causes that even today may well have been their demise.
George Washington: Washington is an exception to the comment above. Washington died at age 67, likely of a pharyngeal infection, possibly streptococcal disease. Today he would likely have received antibiotic treatment and survived this illness.
First, a word about history. We have tried cooperatives before.
During the 1930s and 1940s, the heyday of the cooperative movement in
the United States, the Farm Security Administration encouraged the
development of health cooperatives. At one point, 600,000 mainly
low-income rural Americans belonged to health cooperatives. The
movement failed. The cooperatives were small and undercapitalized.
Physicians opposed the cooperative movement and boycotted cooperatives.
When the FSA removed support in 1947, the movement collapsed. Only the
Group Health Cooperative of Puget Sound survived. Over time, moreover,
even Group Health, though nominally a cooperative, has become
indistinguishable from commercial insurers-it underwrites based on
health status, pays high executive salaries, and accumulates large
surpluses rather than lower its rates.
The Blue Cross/Blue Shield movement, which also began in the 1930s,
shared some of the characteristics of cooperatives. Although the Blue
Cross plans were initiated and long-dominated by the hospitals and the
Blue Shield plans by physicians, they did have a goal of community
service. The plans were established under special state legislation
independent from commercial plans. They were non-profit and, in many
states, exempt from premium taxes. They were exempt from reserve
requirements in some states because they were service-benefit rather
than indemnity plans and because the hospitals and physicians stood
behind the plans. They were exempt from federal income tax until the
1980s. In turn, they initially offered community-rated plans and
offered services to the community, such as health fairs. In some states
their premiums were regulated and they were generally regarded as the
insurer of last resort for the individual market.
Friday, Politico.com editor Fred Barbash posed this question to “Arena” contributors: “Does the ongoing debate about healthcare reform reflect a :”kind of culture war” that can be traced to a “fundamental difference in world views?”
Barbash then pointed to a thought-provoking piece by Bill Bishop, titled “Health Debate Runs Along Familiar Lines” which was published on Politico.com in March. Bishop, who is the co-author of “The Big Sort: Why the Clustering of Like-Minded America Is Tearing Us Apart,” argues that “The health care discussion reveals that the country is still divided along lines drawn more than 100 years ago. . . divisions in the country were never about specific issues . . .. They were about ways of looking at this world (and the next), and those century-old differences are now shaping the health care discussion.”
Bishop frames the age-old religious debate this way: “Do you get to heaven by your good works, by what you do for your brothers and sisters on Earth? Or do you find salvation by your individual relationship with God? Does the world get better through public acts or private ones?“When Sen. Jim DeMint (R-S.C.) said recently that ‘this health care issue s D-Day for freedom in America’ he was talking from one side of this division. President Barack Obama says, ‘I am my brother’s keeper.’ That’s the view from the other bank. “This isn’t a policy issue or a disagreement about strategy,” Bishop adds. “It is a fundamental difference in worldview. It’s a division in what people expect out of life, and it’s been part of this country for more than 100 years.”
“We are now contemplating, Heaven save the mark, a bill that would tax the well for the benefit of the ill.”
No, that’s not Senate Minority Leader John Boehner, Rush Limbaugh or any of the other usual suspects complaining about the cost of health care reform. Rather, it’s the beginning of an editorial in the Aug. 15, 1949 issue of The New York State Journal of Medicine denouncing attempts to provide every American with health insurance. Sure, 90 percent were uninsured then, versus around 15 percent, today. But what’s amazing is the way the overheated arguments by conservatives have changed hardly at all in six decades, as evidenced by an op-ed in the July 15, 2009 Wall Street Journal entitled “Universal Health Care Isn’t Worth Our Freedom.”
Here’s the August, 1949 New York State Journal:
Any experienced general practitioner will agree that what keeps the great majority of people well is the fact that they can’t afford to be ill. That is a harsh, stern dictum and we readily admit that under it a certain number of cases of early tuberculosis and cancer, for example, may go undetected. Is it not better that a few such should perish rather than that the majority of the population should be encouraged on every occasion to run sniveling to the doctor? That in order to get their money’s worth they should be sick at every available opportunity? They will find out in time that the services they think they get for nothing – but which the whole people of the United States would pay for – are also worth nothing.
The idea that every life is infinitely precious and therefore everyone deserves the same kind of optimal medical care is a fine religious sentiment and moral ideal. As political and economic policy, it is vainglorious delusion. Rich and educated people not only receive better goods and services in all areas of life than do poor and uneducated people, they also tend to take better care of themselves and their possessions, which in turn leads to better health….We must stop talking about “health care” as if it were some kind of collective public service, like fire protection, provided equally to everyone who needs it….If we persevere in our quixotic quest for a fetishized medical equality we will sacrifice personal freedom as its price. We will become the voluntary slaves of a “compassionate” government that will provide the same low quality health care to everyone.
Of course, there’s been some progress. Six decades ago, the kind of views expressed by Szasz and the New York Journal represented the medical mainstream. Today, even the most troglodyte are not suggesting the repeal of Medicare and Medicaid.
On the other hand, in those “pre-spin” days so long ago the health-insurance-for-all opponents of the past were forthright about the consequences of their principles for others. Today’s conservative fulminators prefer to forego mentioning the 20,000 preventable deaths each year – about 55 people each and every day – among those without insurance coverage.
The other great difference sixty years has made is the racial and ethnic composition of the uninsured. The uninsured today are disproportionately minority. Nearly one in four (36 percent) are Hispanic, 22 percent are black, 17 percent Asian/Pacific Islanders and just 13 percent white. The impact of those figures is clear. While nearly one third of Texans have no health insurance, the Republicans who dominate its Congressional delegation have shown no particular urgency to address a problem primarily affecting low-income Hispanics. (Fifty-eight 58 percent of the uninsured in the state are Hispanic, according to Kaiser Family Foundation figures.)
It’s important to remember that none of the Republican presidential candidates in either the primary or general election presented a serious plan to cover all the uninsured, nor have any of the Congressional GOP critics of Obama’s plan done so. In other words, the difference between the Democrats and the Republicans on universal access to health care, then, is not a difference on government should help accomplish this goal but whether the goal itself is worth pursuing.
Put differently, for those Americans who can’t afford medical care (or are afraid that they won’t be able to in the future), the GOP has a clear reply: drop dead.
The debate about a public health insurance option mirrors the debate
about public power in the 1920’s and 30’s. The arguments then were very
similar to the arguments we hear today.
The principal issue then was whether the federal government should
enter the public power business by investing taxpayers’ money to build
the Tennessee Valley Authority and to harness the Columbia and other
rivers for electrical energy, or whether the sites should be transferred to the
private sector. A second issue was who should build transmission lines
and set wholesale prices when the Federal government built dams.
The answer to the second question was first enunciated on the Senate
floor in the fight over the Wilson Dam in 1920 by Senator John Sharp
Williams of Tennessee. He said, “The government should have somewhere a
producer of these things that should furnish a productive element to
stop and check private profiteering.” Thus was born the yardstick
federal policy which later found its way into TVA legislation through
the efforts of Nebraska’s Senator George Norris. In a 1932 campaign
speech in Portland, Oregon, Franklin Roosevelt referred to his TVA and
other regional proposals as “yardsticks to prevent extortion against
Emory University psychologist and political consultant Drew Westen in the weekend Washington Post offers a troubling view of the public’s role in healthcare reform. While reform’s reality involves complicated technical issues like insurance exchanges, public plan governance, physician and hospital payments and who will pay higher taxes, the public’s understanding of these issues is virtually non-existent, Westen assumes.
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.