The Agenda

A Non-Demagogic Disquisition on Death Panels

I’ve received a larger-than-usual amount of email and commentary from liberal readers, responding to my earlier thoughts on Atul Gawande’s piece in The New Yorker on end-of-life care. Most of these reflect exasperation regarding the term “death panels,” which they see as dishonest and demagogic (I objected to Gawande’s characterization of conservatives as such). This post is intended to account for the epistemological gulf between liberals and conservatives on the matter of death panels. I apologize in advance for its length, but I hope you will agree that these issues merit detailed consideration.

From the conservative point of view, liberals often tend to see an injustice or inequity in the world, pass a law to fix the inequity, and move on to the next problem. Conservatives think of themselves as approaching the same policy problems with pessimism and skepticism, because they are trying to look two moves ahead: what incentives will the new law distort? What new injustices or inequities will be triggered by these reforms?

This is not to say that liberals don’t try to think about the long-term consequences of their proposed reforms. They do. But it is to say that conservatives worry much more about this problem—the problem of what laws will be written in the future to address the unanticipated problems of laws written in the present. Liberals tend to be much less concerned about unintended consequences, and are more confident in their abilities to promulgate effective government action.

Let me try to explain another way: there is a policy problem A. Activists seek to pass a law, B, to solve injustice / policy problem A. But law B doesn’t completely solve problem A, and creates unanticipated new problems of its own. So a new law is passed, law C, to solve the problems outstanding from problem A, and the new problems caused by B. Unfortunately, law C only partially fixes the outstanding problems of A, and the new problems caused by B, and creates new problems of its own. So, now, there are calls for a new law, D, that will finally solve all the outstanding problems.

The above scenario is almost always what happens with complex new legislation, especially when that legislation substantially expands the role of government, in an unprecedented fashion, in what was previously private economic activity. In the case of Medicare, for example, official projections about the long-term costs of the program were off by a factor of 10, and various attempts to solve that problem (e.g. price controls) have created new ones (fraud).

When the British National Health Service was founded on July 5, 1948, expectations were sky-high. The NHS, in the words of one official, would be the “envy of the world.” 62 years later, by all objective measures, the NHS is the worst health-care system in the developed world. Costs have exploded. The NHS uses the most aggressive price controls and rationing procedures in the West, going so far as to assign a price to the “quality-adjusted life year” that is required to extend it. And yet, from 1996 to 2008, national health care expenditures in the U.K. have grown at 6.7% a year, compared to 5.5% in the U.S. over the same period.

Let us, at this point, recall what Sarah Palin said in her notorious Facebook note, dated August 7, 2009, that started the “death panel” brouhaha:

The Democrats promise that a government health care system will reduce the cost of health care, but as the economist Thomas Sowell has pointed out, government health care will not reduce the cost; it will simply refuse to pay the cost. And who will suffer the most when they ration care? The sick, the elderly, and the disabled, of course. The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil.

Health care by definition involves life and death decisions. Human rights and human dignity must be at the center of any health care discussion.

These comments were not made solely with end-of-life care in mind. But they were made with the NHS in mind: a system in which treatments that don’t extend life by £20,000-30,000 per quality-adjusted life year are not paid for by the government. And if you choose to buy that forbidden treatment on your own, you are kicked off the NHS for life.  Here are some other problems with the NHS, pulled from my previous post on the subject:

  • NHS doctors routinely conceal from patients information about innovative new therapies that the NHS doesn’t pay for, so as to not “distress, upset or confuse” them.

  • Terminally ill patients are incorrectly classified as “close to death” so as to allow the withdrawal of expensive life support.

  • NHS expert guidelines on the management of high cholesterol are intentionally out-of-date, putting patients at serious risk, in order to save money.

  • When the government approved an innovative new treatment for elderly blindness, the NHS initially decided to reimburse for the treatment only after patients were already blind in one eye—using the logic that a person blind in one eye can still see, and is therefore not that badly off.

  • While most NHS patients expect to wait five months for a hip operation or knee surgery, leaving them immobile and disabled in the meantime, the actual waiting times are even worse: 11 months for hips and 12 months for knees.

  • One in four Britons with cancer are denied treatment with the latest drugs proven to extend life.

  • Those who seek to pay for such drugs on their own are expelled from the NHS system, for making the government look bad, and are forced to pay for the entirety of their own care for the rest of their lives.

  • Britons diagnosed with cancer or heart attacks are more likely to die, and more quickly, than those of most other developed nations. Britain’s survival rates for these diseases are “little better than [those] of former Communist countries.”

The attack on Sarah Palin has been: “Palin is lying. There is nothing in this bill that is a death panel” (death panel being defined as a panel of bureaucrats who decides whether or not you can continue receiving care). But this is exactly what happens in Britain. Those who are in their last years of lives are expected to do their part for the national budget, which is to die inexpensively. That is to say, if Palin had been born 60 years earlier, and made the same criticisms of the NHS at its founding, she would have disparaged as a paranoid lunatic demagogue. “Sarah, old girl, there’s no death pansies, or panzers, or panels around here. The bill clearly states: ‘Her Majesty’s funds shall not be used to ration care for the sick.’ After the war, we’re done with all that rationing nonsense!”

However, Britain discovered that it wasn’t that simple. In the decades after the war, health care costs continued to rise, and inexorably, the government had to step in and do something about it.  After all, in Britain, the government owns all the hospitals, the clinics, and the insurers. So in 1999 they came up with a rationing board whose sole purpose was to identify those treatments that were medically cost-effective, and agree to reimburse for those. (Law D solving the problems originally caused by Law A.)

The Quality-Adjusted Life Year (QALY) methodology that the British use is precisely oriented at reducing care for the elderly, and steering it to younger patients, for whom effective therapies will lead to a longer, fuller life. For those in their 80s, in Britain, the NHS offers little. Recent studies have shown that Britons have the worst survival rates in the developed world after being diagnosed with a disease, like cancer, or a chronic condition, like heart disease. Britain may have the best tennis courts in the world, but it has a broken health care system. When you’re young and healthy, it’s great.  You go to do the doctor (if you can get an appointment), and you don’t have to think of any financial considerations.  But if you’re old and unhealthy, watch out.

The NHS, for American conservatives, is the paradigm of how state control of the health care system plays out. Palin’s logic is irrefutable: once the government is spending the money, the government has an obligation to the taxpayer to use those dollars as efficiently as possible. What does that entail? From the government’s point of view, that involves not wasting money on end-of-life care.

So this brings us to the issue of end-of-life counseling. What I think liberals misunderstand about the conservative position is that conservatives don’t object to end-of-life counseling per se. Indeed, as I argued in my previous piece on the subject, end-of-life counseling should long ago have been incorporated into the standard of medical care.

What conservatives are objecting to is the involvement of the state in end-of-life counseling. It comes down to this: if the government is funding health care, and simultaneously funding end-of-life counseling, the government has a conflict of interest. The government has a financial incentive to encourage people to “pull the plug on granny,” regardless of whether or not that is consistent with granny’s, or her family’s, wishes. It is, at bottom, the same reason we insist on a free, independent press (and free speech in general): when the government controls the media, it has a conflict of interest; i.e., an incentive to promote journalism that is favorable to the government.

This is not merely a theoretical concern. It has played out in the Veterans Administration health system. The VA’s guide to end-of-life planning, “Your Life, Your Choices,” was written by a prominent advocate of physician-assisted suicide, and steers veterans into feeling guilty about keeping themselves alive at others’ expense. Here is a detailed account from Jim Towey, the man who first brought this problem to public attention in the Wall Street Journal:

I discovered the existence of “Your Life, Your Choices” in September 2007 by accident. Then–VA secretary Jim Nicholson had arranged a meeting for me with officials from the VA National Center for Ethics in Health Care so that I could share with them a living will I created — “Five Wishes” — and see if the agency headquarters might be interested in using it. (A living will is written instructions on the kind of medical care  you want when you can’t speak for yourself. Together with a form designating a person who has legal authority to speak for you when you can’t speak for yourself, it constitutes an “advance directive.”)

My background as a lawyer who once lived as a full-time volunteer in Mother Teresa of Calcutta’s home for people with AIDS had enabled me to develop “Five Wishes.” In less than a decade it had become America’s most popular living will, with over 13 million copies in circulation throughout the country. It seemed like it might be of use to these top VA officials.

It wasn’t. “Five Wishes” was dead on arrival with the VA’s top advance-care-planning official, Dr. Ellen Fox, director of the Center for Ethics in Health Care. She told me that the agency had completed the regulatory review process for a different document, “Your Life, Your Choices,” and was about to unveil it as a system-wide online offering on MyHealtheVet. She handed me this 100-page document, which was marked as “Second Edition, June 11, 2007.”

My first reaction was: How in the world would senior citizens navigate a document that was nearly an inch thick and contained dozens of pages of worksheets? But after I left the meeting and carefully read “Your Life, Your Choices” for the first time, I concluded that the unmanageable size of the document was the least of its defects. Taken as a whole, “Your Life, Your Choices” seemed to subtly steer individuals toward refusing care.

Page 8 asked, “Have you ever heard anyone say, ‘If I’m a vegetable, pull the plug’? What does ‘being a vegetable’ mean to you? You can’t take care of yourself now and you’ll never be able to in the future…” Centered on the page were two photos of middle-aged men. One was of an unshaven man named Mr. Santini, with a furrowed brow and a quote next to him that read, “Life is sacred and has meaning, no matter what its quality.” The other photo was of a smiling, handsome man named Mr. Johnson, and his quote said, “I’ve lived a long and full life. I don’t want anything done just to keep me alive.”

Towey cites many more examples. It’s worth reading the whole article. The bottom line is, the American experience with state-sponsored end-of-life counseling is not reassuring.

I think the most understandable criticism of my earlier piece was that “time is money;” that if physicians aren’t reimbursed by Medicare for taking the time to discuss end-of-life issues with their patients, those discussions won’t take place.

I’d make a couple of points in response: First, this argument ignores the many ways in which end-of-life planning can take place without the involvement of physicians. Again, I refer to Atul Gawande’s citation of the practice in La Crosse, Wisc., of requiring anyone admitted to a hospital, nursing home, or assisted-living facility to fill out an end-of-life planning form. Specialists in end-of-life counseling can spend their time discussing these issues with patients and families, without placing a burden on physicians’ much more expensive time. Second, there’s little reason why an initial discussion of end-of-life issues can’t accompany the physician’s initial interview of the patient (in medical parlance, the “history and physical”). By taking all of these steps, the burden of follow-up conversations requiring the physician’s time are kept to a minimum. Third, the criticism itself calls attention to the key problem: that state funding of health care inevitably leads to calls for state-sponsored end-of-life counseling.

So, in 2,400 words, I’ve tried to explain what conservatives mean when they worry about death panels. Whether you agree or disagree with conservatives on the question, I hope we can all agree that these concerns are reasonable, and are not merely the province of frothy lunatics and demagogues.

Both liberals and conservatives value of end-of-life counseling. Where we part ways is on the degree to which government involvement in the matter is appropriate.

Avik RoyMr. Roy, the president of the Foundation for Research on Equal Opportunity, is a former policy adviser to Mitt Romney, Rick Perry, and Marco Rubio.


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