What is a "death panel"?

[This is the third post in my series on “death panels”. The first post is here and contains definitions important to understanding the later posts. All posts in this series are categorized under “Death Panels”.]

What is a "death panel"? According to Sarah Palin:

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.

Is anything like that likely to happen? No. This is not a literal description of a likely outcome. Rather it is a very clever symbolic representation* of something that is a likely outcome: the government making decisions to limit the amount of health care it will pay for in certain situations. No particular person is ever going to stand in front of a panel somewhere and ask to be allowed to live - or even ask to be allowed to receive treatment. Instead a government agency is going to provide a ruling on which treatments will be provided (or not provided) under what circumstances. If there is an appeals process it’s going to consist of your doctor filling out forms.

Think even the idea of something like that happening is nonsense? Let’s consider some quotes. Here are two conservatives, one liberal, and one (probably) independent talking about this issue:

Here’s conservative TigerHawk sort of agreeing with Obama:

Barack Obama is right. It is profoundly wasteful to perform hip-replacement surgery on somebody who is probably going to die in a matter of weeks or even months, and as a conservative I am against profoundly wasteful things. The question is, what should we do about it? [snip]

The solution, the only real way out of the end-of-life cost trap, is to privatize health insurance for senior citizens, give them vouchers that subsidize their health care to some baseline, and let them negotiate the end-of-life deal they prefer (and can afford) when they would have become eligible for Medicare.

What services will the government subsidize and what services will they not? Will that subsidization vary based on the senior’s age: heart transplants and hip replacements for the young-old; hip replacements only for the middle-old; nothing but palliative care for the old-old? In other words, who defines the baseline? Seems like a job for super-panel.

Here’s conservative Ross Douthat explaining we need to tell Grandma “No”:

For liberals trying to find the money to make health insurance universal, these inefficiencies make Medicare an obvious place to wring out savings. But you can’t blame the elderly if “savings” sound a lot like “cuts.” When the president talks about shearing waste from Medicare, and empowering an independent panel to reduce the program’s long-term costs — well, he isn’t envisioning a world where seniors get worse care, but he’s certainly envisioning a world in which they receive less of it. [snip]

In this future, somebody will need to stand for the principle that Medicare can’t pay every bill and bless every procedure. Somebody will need to defend the younger generation’s promise (and its pocketbooks). Somebody will need to say “no” to retirees.

That’s supposed to be the Republicans’ job. They should stick to doing it.

Less care but not worse care. That would seem to envision a situation in which the government determines what is and is not necessary. How? Via “an independent panel” according to Douthat who is simply citing liberal Barack Obama:

THE PRESIDENT: I would have paid out of pocket for that hip replacement just because she’s my grandmother. Whether, sort of in the aggregate, society making those decisions to give my grandmother, or everybody else’s aging grandparents or parents, a hip replacement when they’re terminally ill is a sustainable model, is a very difficult question. If somebody told me that my grandmother couldn’t have a hip replacement and she had to lie there in misery in the waning days of her life — that would be pretty upsetting.

INTERVIEWER: And it’s going to be hard for people who don’t have the option of paying for it.

THE PRESIDENT: So that’s where I think you just get into some very difficult moral issues. But that’s also a huge driver of cost, right?

I mean, the chronically ill and those toward the end of their lives are accounting for potentially 80 percent of the total health care bill out here.

INTERVIEWER: So how do you — how do we deal with it?

THE PRESIDENT: Well, I think that there is going to have to be a conversation that is guided by doctors, scientists, ethicists. And then there is going to have to be a very difficult democratic conversation that takes place. It is very difficult to imagine the country making those decisions just through the normal political channels. And that’s part of why you have to have some independent group that can give you guidance. It’s not determinative, but I think has to be able to give you some guidance. And that’s part of what I suspect you’ll see emerging out of the various health care conversations that are taking place on the Hill right now.

Obama gets points here - big points. Unlike TigerHawk and Douthat, he provides an actual example of the kinds of decisions he is talking about. Even more impressive, he doesn’t hand-wave by making his example one that almost everyone would agree clearly represents waste or unnecessary care - like, say, a heart transplant for a 95-year-old with end-stage pancreatic cancer. Rather Obama’s example accurately represents the type of murky water we wade into when we consider the issue of health care and costs.

That said, the President of the United States who is - at least in theory - the driving force behind Obamacare is explicitly saying that we need a “group” to give guidance on what the government should and should not pay for in just such heart-wrenching situations. Sounds panel-ish to me.

And finally here’s (probably) independent Ed Koch in the midst of talking about falling out of love with Barack Obama:

In order to keep costs from rising, most people acknowledge the need for some kind of limitations on spending. Rationing of public monies makes sense, e.g., should public monies be used to give a kidney or heart transplant to a 90-year-old patient, when it is necessary to reduce the costs of Medicaid and Medicare to keep them solvent? Both programs are totally government funded and operated. I would say no.

Koch also gets big points. He is straightforward enough to use the word “rationing” and he talks about solvency rather than waste and unnecessary care. He is also honest enough to bring up Medicaid which - while it does fund some care for senior citizens - also funds care for junior citizens. On the other hand, Koch takes the hand-wavy route when he legitimizes his argument with the relatively easy example of transplants for 90-year-olds. (Which is not always actually that easy; there are some darn healthy 90-year-olds out there and while I almost certainly wouldn’t think giving them a new heart is a great idea I might be persuaded about that kidney.)

What Koch is avoiding with his example is the fact that someone is going to have to decide on cases that are not quite so easy. This is the same problem TigerHawk and Douthat sidestep with their references to wasteful and unnecessary care. If we turn again to Obama’s grandmother we learn:

So now she’s in the hospital, and the doctor says, Look, you’ve got about — maybe you have three months, maybe you have six months, maybe you have nine months to live. Because of the weakness of your heart, if you have an operation on your hip there are certain risks that — you know, your heart can’t take it. On the other hand, if you just sit there with your hip like this, you’re just going to waste away and your quality of life will be terrible.

So should an 85-year-old who will almost certainly be dead within the year get a hip replacement? If those who believe we must restrain spending say no, are they willing to let her spend that last year in pain and misery or to hasten her death by making her bedridden? What if she was expected to live two years? Three years? Three months? What if instead of talking about Obama’s terminally ill grandmother, we’re talking about an otherwise healthy 85-year-old, both of whose parents lived well into their 90s? Should she get a hip replacement? And that’s just the tip of the iceberg. Does the answer change if the patient is 80 instead of 85? What if she’s 75 - or 95 or 105? What if we’re talking about arthroscopic surgery to free a frozen shoulder rather than a hip replacement? Can TigerHawk, Douthat, Obama, and Koch define that magic meeting point of age, health, cost, and expected outcome that separates necessary treatments from unnecessary, that separates the wasteful from the worthwhile in all those cases where reasonable people can reasonably disagree?

Whether we claim we’re going to eliminate wasteful and unnecessary treatment or we just flat out admit we’re rationing care to keep government programs solvent, someone somewhere is going to have to sort out all the not so clear-cut cases. Enter a government panel. And if that government panel decides that no 90-year-old is going to get a kidney transplant then some people whose lives could have been saved will die. If that panel decides that no 85-year-old is going to get a hip replacement then some people who could have had several more happy, productive years are going to get painful, restricted years instead. Understanding that makes me neither ignorant nor insane, neither paranoid nor wingnut. Understanding that makes me reality-based.

Does this mean I now believe the Right is correct when it says the Left wants to pull the plug on grandma?** No. I believe each side in this fight has grasped part of the truth. I also believe neither side has helped us have the vitally important, extremely difficult discussion we should be having about the issue of health care and cost . Furthermore those on the Right - some honestly, some for political advantage - are late to the party and looking in the wrong direction: the issue of government control over health care is a ship that sailed long ago; Medicare and Medicaid are already restricting what care they pay for; and a panel to make the sorts of decisions I discuss doesn’t need Obamacare to pass in order to become a reality. I’ll look at those topics in future posts in this series.

*****

* If you’re one of the people who think Palin is dumb as a whole yard of dirt you will be horrified at my describing anything she says as “clever” - and probably even more horrified at my believing she could possibly understand symbolism. Please feel free to continue to believe that she is simply too stupid to understand the subtleties of bioethics. It won’t materially impact my line of reasoning.

** My husband is getting quite irate over the whole “pull the plug on grandma” discussion. He demands to know why we as a society aren’t equally concerned about pulling the plug on grandpa and is considering seeking some type of legal redress for this sexist dismissal of the value of male progenitors.

A remarkable resemblance

[This is the second post in my series on “death panels”. The first post is here and contains definitions important to understanding the later posts. All posts in this series are categorized under “Death Panels”.]

While wandering through the landscape of the health care blogosphere, I stumbled upon this remarkably calm, remarkably intelligent article in the Washington Post. Danielle Allen’s “Opponents Are Prejudging Health Reform’s Side Effects” explains why worries about “death panels” and rationing cannot be assuaged by quoting chapter and verse of the legislation. Do read the whole thing but I was particularly struck by these two lines about the thinking of those who oppose Obamacare:

The issue, rather, is that they recognize that the stated goals and structure of a policy may not fully capture its full range of outcomes in practice. [snip]

In asking lawmakers to consider not merely the goals of their policies but also the experiential meaning of concrete realities that those policies may bring, they have a point.

This is remarkably similar to the reasoning behind Comparative Effectivness Research:

An important component of CER is the concept of Pragmatic Trials. These clinical research trials measure effectiveness—the benefit the treatment produces in routine clinical practice. This is different than many regularly clinical trials, which measure efficacy, whether the treatment works or not.

In other words those who are concerned about rationing and “death panels” are focused on what the real-world outcomes of Obamacare will be just as those who support Comparative Effectiveness Research are focused on what the real-world outcomes of medical treatments are. It is hard to understand why the idea that what happens in the real world isn’t always what we intended is so valid a concern in medicine but so ludicrous a concern in politics. If anything, we should expect there to be far, far less discrepancy between the predicted and actual outcomes in medicine than in politics.

This is driving me nuts

[This is the first in a series of post about “death panels”. I have - as usual - created a new category for the series.]

Before I get into a discussion of “death panels” themselves I want to do a little (okay, a lot of) clean-up work. There seems to be a great confusion regarding Comparative Effectiveness Research versus Cost Effectiveness Analysis versus Cost-Utility Analysis. This confusion is driving me nuts so let’s see if we can sort them out. I freely admit that this is not my field and I’m sure I’m oversimplifying at best but I need a structure to go on with and this will have to do.

Comparative Effectiveness Research (CER) is a good thing; it’s like Consumer Reports for medical care. Let’s say you go to your doctor with a sinus infection. Should he give you one of those antibiotics where you take a few high-dose pills for a short period or would you be better off with a prescription for many lower-dose pills that you take over a longer period? If someone has done the CER on this, your doctor has information about which drug is more effective against sinus infections and - equally important - what the side effects of each are. This can help him make a decision. Or let’s say both drugs are equally effective but they have different side effects. Your doctor can decide which side effects are worse for someone with any other health problems you may have or he may ask you which side-effects you prefer. For example, if the short-term antibiotics produce horrible gastric upset but it’s over in 3 days you might prefer that to mild gastric upset for 10 days. Your choice. That’s a relatively trivial example but CER can also deal with much bigger issues like which blend of chemotherapy drugs works best against which cancer and what side-effects each blend has.

Wikipedia has a short overview of Comparative Effectiveness Research. That overview refers to The Agency for Healthcare Research and Quality (AHRQ), a government agency that runs the Effective Health Care Program. Here’s what they say about their focus:

The program focuses tightly on evidence of the relative benefits and risks of alternative interventions. It does not make treatment recommendations or include considerations of cost. Consumers, clinicians, payers, and others can make decisions and select treatments that reflect their own needs and values based on effectiveness findings as well as other considerations, including costs.

In other words, CER just figures out what medical treatment works better and what the various side-effects are; it’s up to you and your doctor to decide how to use that information.

All this is not to say CER is without problems. I’ve mentioned Megan McArdle before in this regard and it’s well worth reading her cautionary post here as well as her more personal one here. The latter is a real-life example of the problems she discusses more generally in the former. Nonetheless Comparative Effectiveness Research is not the problem behind fears of a death panel so let’s move on to Cost Effectiveness Analysis

While Comparative Effectiveness Research does not talk about money at all, Cost Effectiveness Analysis talks about money half the time. Here’s what Wikipedia says about CEA:

In the context of pharmacoeconomics, the cost-effectiveness of a therapeutic or preventive intervention is the ratio of the cost of the intervention to a relevant measure of its effect. Cost refers to the resource expended for the intervention, usually measured in monetary terms such as dollars or pounds. The measure of effects depends on the intervention being considered. Examples include the number of people cured of a disease, the mm Hg reduction in diastolic blood pressure and the number of symptom-free days experienced by a patient. The selection of the appropriate effect measure should be based on clinical judgement in the context of the intervention being considered.

If we go back to the example of which antibiotic to take, imagine that both Antibiotic A and Antibiotic B are equally effective and have identical side-effects. Now how do you decide which one to take? You do a simple CEA: you take whichever one is cheaper. This is the idea behind generic drugs. Why pay more when you can get the same result for less?

CEA doesn’t always stay this simple, however, Let’s says Antibiotic A cures 90% of sinus infections with one round while Antibiotic B cures 60% of sinus infections with one round. So we’ll have to repeat a round of treatment 10% of the time with A and 40% of the time with B. How much cheaper does Antibiotic B have to be in order to make it the better choice? (And, yes, this is like one of those “two trains are traveling toward each other at different rates of speed” word problems from math class.) Throw in different side-effects and the mind boggles.

So far this is mildly interesting but trivial. So let’s talk chemotherapy. Imagine Chemotherapy A has a 90% success rate; Chemotherapy B has a 75% success rate. (It’s CER that will tell us that.) Naturally we go for A. But now imagine B costs a third of A. For a cancer patient with unlimited resources there’s still no question: he picks A. But a cancer patient with limited resources may choose B: to him the extra cost to his family is not worth the extra 15% chance of survival. Similarly, a third-party payer with limited resources may believe B is the better choice.

Let’s say the payer has enough money to pay for 100 patients to get Chemotherapy A or for 300 patients to get Chemotherapy B. If the payer chooses A it saves 90 lives; if it chooses B it saves 225 lives. To the payer the math is both simple and ethical. To the patients involved it is terrifying. There are 100 people who would have received Chemotherapy A but will now receive inferior Chemotherapy B; to them the third-party payer making this decision looks a lot like a death panel. And, of course, for the 15 out of that 100 who will now die when they would have lived this is a deadly decision. Furthermore, the 200 people who will now get treatment with B instead of no treatment at all aren’t much happier: they think they should have gotten Chemotherapy A instead. That is, all these patients understandably want the treatment that would be available if the third-party payer had unlimited - rather than limited - resources.

I believe that if Cost Effectiveness Analysis was all people were worried about there would be no talk of “death panels”; at least none that resonated with the public. After all, the question posed by CEA is very simple: do we want unlimited medical treatment regardless of the cost to taxpayers or do we want to factor the price of a treatment into our decisions? To put it another way, do we choose to continue to ante up enough money to live in a medical universe of unlimited treatment (understanding the impact that has on taxes and on other goods and services) or do we choose to limit the resources we devote to medical treatments (understanding the impact that has on life and death for each of us). Discussing this would have been loud and ugly and heart-wrenching but it would have been possible. But this still isn’t the heart of the “death panel” issue: for that we have to consider Cost Effectiveness Analysis’ ugly sibling: Cost-Utility Analysis.

While Comparative Effectiveness Research does not talk about money at all and Comparative Cost Effectiveness Analysis talks about money half the time, Cost-Utility Analysis is all about money. Again Wikipedia has a good brief overview which helpfully explains the concept of QALY and how it relates to Cost-Utility Analysis. Briefly, QALY (Quality Adjusted Life Years) starts with how long an individual is expected to live and adjusts that length of life for the quality of life he will experience. Let’s say a healthy 50-year-old can expect to live for another 25 years. Because he is in good health, each of his chronological years is equivalent to a quality year and weighted at 1. Thus his QALY is 25 times 1 for a QALY score of 25.

On the other hand, a 50-year-old confined to a wheelchair may also expect to live for another 25 years but his quality of life is considered to be diminished due to his disability and each of his chronological years will be weighted less than 1. Exactly how the weighting is done varies but let’s say the weighting method decides being confined to a wheelchair removes a quarter of the quality of his life; each chronological year will be weighted at 0.75 and this 50-year-old’s QALY score will be 18.75 (25 times 0.75).

Why does QALY matter? Because it’s used to determine whether a medical treatment is worth the money it will cost. If a patient needs a treatment, Cost-Utility Analysis determines how much the treatment will cost and divides that cost by the patient’s QALY to get a cost per quality year. If that cost is greater than some number, the treatment is not worth doing; otherwise it is. Using this system to actually make decisions about paying for treatment means younger people are more likely to get treatment than older and healthy people more likely than those with disabilities or chronic diseases.

In the United States this is mostly theoretical: as far as I know no agency of the Federal government uses QALY and Cost-Utility Analysis to decide whether to pay for a procedure. Neither am I aware of any private insurance company that does so. Still, it is Cost-Utility Analysis that makes “death panel” sound like a possibility rather than a fantasy and it is Cost-Utility Analysis that so many Americans find abhorrent.

Most people in this country have a deep-seated aversion to attaching a numeric value to a person’s life. By whose accounting is someone in a wheelchair, someone blind, someone old of less value than a perfectly healthy 20-year-old? It’s bad enough when the life being marked down is your own; it’s even worse when that life is your aged parent’s. Even beyond that, imagine the reaction of a parent to the idea that his or her child is somehow worth less because she has cystic fibrosis or he has Down syndrome. This is why the idea of “death panels” resonates. Not because people on the Right are ignorant or Republicans are demagoguing the issue. It’s because the basic concept of Cost-Utility Analysis - the idea that there is such a thing as Quality Adjusted Life Years - is anathema to most of us.

But, you say, no one is talking about using Cost-Utility Analysis. That’s just made up out of whole cloth. Au contraire, I reply, pretty much exhausting my French. In his April interview with the New York Times, Barack Obama himself supported all three concepts: Comparative Effectiveness Research, Cost Effectiveness Analysis, and Cost-Utility Analysis.

This is Obama supporting Comparative Effectiveness Research (in bold) and Cost Effectiveness Analysis (overall):

So when Peter Orszag and I talk about the importance of using comparative-effectiveness studies as a way of reining in costs, that’s not an attempt to micromanage the doctor-patient relationship. It is an attempt to say to patients, you know what, we’ve looked at some objective studies out here, people who know about this stuff, concluding that the blue pill, which costs half as much as the red pill, is just as effective, and you might want to go ahead and get the blue one. And if a provider is pushing the red one on you, then you should at least ask some important questions.

And this is Obama supporting Cost-Utility Analysis:

THE PRESIDENT: I would have paid out of pocket for that hip replacement just because she’s my grandmother. Whether, sort of in the aggregate, society making those decisions to give my grandmother, or everybody else’s aging grandparents or parents, a hip replacement when they’re terminally ill is a sustainable model, is a very difficult question. If somebody told me that my grandmother couldn’t have a hip replacement and she had to lie there in misery in the waning days of her life — that would be pretty upsetting.

INTERVIEWER: And it’s going to be hard for people who don’t have the option of paying for it.

THE PRESIDENT: So that’s where I think you just get into some very difficult moral issues. But that’s also a huge driver of cost, right?

I mean, the chronically ill and those toward the end of their lives are accounting for potentially 80 percent of the total health care bill out here.

INTERVIEWER: So how do you — how do we deal with it?

THE PRESIDENT: Well, I think that there is going to have to be a conversation that is guided by doctors, scientists, ethicists. And then there is going to have to be a very difficult democratic conversation that takes place. It is very difficult to imagine the country making those decisions just through the normal political channels. And that’s part of why you have to have some independent group that can give you guidance. It’s not determinative, but I think has to be able to give you some guidance. And that’s part of what I suspect you’ll see emerging out of the various health care conversations that are taking place on the Hill right now.

The rhetoric of “death panels” may be over-the-top but the claim that no major backer of Obamacare is thinking in terms of Cost-Utility Analysis is, well, simply dishonest.**

*****

[Updated August 21, 2009, about 4pm: Oops. This is an orphaned footnote. I ripped out the text that referred to it but forgot to rip out the footnote. Consider it just a little bonus info.

*And where does that threshold come from? Our cousins across the Atlantic. Britain’s National Health Service openly and explicitly uses QALY and CUA to determine what treatments will be covered via the National Institute for Health and Clinical Excellence (NICE). According to Wikipedia:

NICE publishes clinical appraisals of whether particular treatments should be considered worthwhile by the NHS. These appraisals are based primarily on evaluations of efficacy and cost-effectiveness in various circumstances.]

**At his August 15 townhall in Colorado, President Obama once again spoke of his grandmother’s death but this time without any of the Cost-Utility Analysis musings he brought up in his April NYT interview. Instead, Obama attributed all the talk about “death panels” to (sigh) the end of life counseling provisions in Section 1233 of HR3200 and dismissed such talk as “dishonest”:

What you can't do -- or you can, but you shouldn't do -- is start saying things like, we want to set up death panels to pull the plug on grandma. I mean, come on. (Applause.) I mean, I just -- first of all, when you make a comment like that -- I just lost my grandmother last year. I know what it's like to watch somebody you love, who's aging, deteriorate, and have to struggle with that.

So the notion that somehow I ran for public office, or members of Congress are in this so that they can go around pulling the plug on grandma? I mean, when you start making arguments like that, that's simply dishonest, especially when I hear the arguments coming from members of Congress in the other party who, turns out, sponsored similar provisions.