The Reality of Health Care Rationing
A pill could cure your cancer -- or, at least, give you a few extra months of life. But it costs tens of thousands of dollars. And you don’t have it. Does an enlightened society find a way to make sure you get the drug? Or are you out of luck? That’s the important and complicated question posed by a story in the New York Times this week, about a crop of new cancer drugs with price tags as high as $100,000 a year.
I was glad to see that story because it points to (one of) the obvious flaws in the arguments that critics of universal health care frequently make: That a universal health care system will lead to rationing. Well, I have news for them. We ration care now – all the time. And the most obvious way we ration care is by income.
You can see it in virtually any big city, where...
...people without insurance are dependent upon public and private “charity” care to meet their medical needs. It’s a common myth that people without health insurance can always get needed medical care because federal law requires hospitals to treat people with life-threatening emergencies. The trouble is that people can’t get care until they have that life threatening emergency. And the bad stuff usually happens beforehand.
(You think the waits for some elective procedures is bad in some parts of Canada? Try getting a colonoscopy at County Hospital in Los Angeles if you have no insurance.)
Of course, most of the American public is probably willing to live with rationing if it affects only poor people. But that’s increasingly not the case. There are a lot of reasons why (I’m writing a book on that now, as a matter of fact), but one of the most important is the ever-rising cost of medical care – and the likelihood that insurance won’t keep up with it.
The trend in private insurance, which conservatives in government and their allies in the business community wholeheartedly support, is to transfer more of the burden for medical expenses onto individuals through high-deductible insurance (with or without HSAs). Our insurance system has traditionally had “cross-subsidies” built into it: The healthy would subsidize the sick and, to some extent, the wealthy would subsidize the non-wealthy. But the system to where we are heading will have far fewer cross-subsidies.
That will make access to care ever more dependent upon one’s personal financial resources. And as technology produces ever more cures like the cancer drugs in that Times story, that will inevitably leave more people incapable of affording life-saving treatment.
Moving to a universal health care program doesn’t end rationing, of course. (Henry Aaron has co-written a new and -- I'm told -- excellent book on this very subject.) There’s only so much money to go around. Even if the U.S. managed to realize certain efficiencies from changing to, say, a single-payer system rather than the fractured mess we have now, at some point somebody would have to make a decision about what level of care the government wants to guarantee everybody – and for what cost. And, as blogger Joseph Paduda notes in a superb post, making those decisions is not always a comfortable exercise.
But in a universal health care system, you make those decisions in a more rational, democratically accountable way. You make decisions about what to cover based on cost-effectiveness. You put some pressure for cost containment on the providers and producers of health care, rather than exclusively on the consumers (which is basically what high-deductible insurance seeks to do). And, when you're done with that, you make sure that everybody pays what they can to support this system, through premiums and taxes linked to income.
The alternative is to keep doing what we’re doing now, to pretend we don’t ration when we really do, allowing the market to decide who gets health care – and who doesn’t.
Edit: Headline spelling. Thanks, gonzone.















Great post. It would appear that what many Americans fear right now is not "rationing," but "rationing by the government."
For the moneyed-and-insured, at least, the fear is that in a universal system, class privilege will not longer get you better care; I think many Americans are very afraid of what the availability of care will be if they don't have the opportunity to use money to get more care.
Two pieces of news for people that should respond to such fears:
(1) even in a "universal" health care system -- whether universal insurance, or an actual massive government program employing doctors, as in Britain -- you can always "go private." There is no need to outlaw private care (as Canada has done in the past). The two questions are separate! And in America, we obviously will never outlaw private care.
(2) For most middle-class to upper-class Americans, single-payer government "rationing" will probably be more rational, and less likely to result in arbitrary denials of care for you personally, than our current HMO system. (Would anyone seriously argue with that?)
So, with that, can we get universal health care already?
Jonathan - I wonder whether you would agree that people's class fears are as irrational as they seem to me.
February 17, 2006 8:43 AM | Reply | Permalink
Very well made point Jonathan.
(You need to fix the headline of the post if you can - typo spelling reality)
February 17, 2006 8:54 AM | Reply | Permalink
You point is well taken but we live in a capitalist system in which those with more money can buy more things and services. The question is whether as a society we want some people getting no healthcare and others who work getting inadequate care.
Without turning to police state tactics a universal healthcare system will be supplemented by those with money. The universal system will provide a floor of care not a ceiling.
Daniel A. Greenbaum
February 17, 2006 8:55 AM | Reply | Permalink
Excellent points. To answer your question, I think those concerns are *somewhat* irrational, but not entirely.
The irrational part is the extent to which even middle-class people now face rationing -- or the potential for rationing -- only they don't know it. Managed care run properly can be a great thing, but the way it is frequently practiced in this country it makes life very difficult for people with serious medical issues, sometimes (though not always) to the detriment to their health. And that's true even if you're relatively affluent.
Besides, if you can't get group insurance through a large employer, then you're basically screwed if you have any pre-existing medical conditions -- even ones that are not life-threatening. (If you've been diagnosed with severe allergies, good luck getting coverage for your shots and/or antihistimanies in the individual market.) Again, this is true even if you have a fair amount of money.
Universal coverage would basically solve these problems. Even a regulated consumer-choice model -- like, say the old Clinton plan -- would theoretically set rules for how insurance companies could operate, so that they couldn't arbitrarily limit care for people with serious illness.
I also think many Americans have an unrealistic sense of their economic vulnerability. Falling out of the middle class is a lot easier than it can seem. Jacob Hacker has done some great work on this. (And you can read more about when his new book comes out this fall.)
That said, the fear is rational in the sense that the line between the priveleged and non-priveleged would probably get drawn in a different place. Yes, you could opt out -- and, personally, I think it's essential any universal system we have retain that option for people. But in reality only the very, very wealthy are going to be able to do that. If you're middle class, it's virtually certain you'll end up in the main, public system.
Of course, that's not such a bad thing. Middle class people have the power to vote. If the universal insurance program, whatever it looks like, serves them, chances are their political power will guarantee that it works pretty well. The problem with these programs crops up when they only serve the poor. See, for example, the difference between Medicare and Medicaid.
Jonathan Cohn, the New Republic
February 17, 2006 9:15 AM | Reply | Permalink
I think that's precisely the right analogy: Universal care is the floor, not the ceiling.
Of course, that floor can be quite high. (See, for example, France -- or any of the other extremely successful universal health care systems.)
The key is making the health care system efficient. And then committing the financial resources necessary to run it.
Jonathan Cohn, the New Republic
February 17, 2006 9:19 AM | Reply | Permalink
J. McCutchen "JmacSF"
San Francisco. CA
A bit off topic but this the answer to Bush's latest "answer" from the Center for Budget and Policy Priorities.
WOW Jonathan Cohn's here..we are in high blogospheric indeed!!!
A Big Fan I am
.
February 17, 2006 10:36 AM | Reply | Permalink
J. McCutchen "JmacSF"
San Francisco. CA
For the wonkish in search of the definitive
February 17, 2006 10:50 AM | Reply | Permalink
I think people also don't take into account the many ancillary problems universal coverage would solve.
There would be no need for a complicated, expensive system of workers' compensation that in the main, screws workers over and cripples our workforce.
There would be less litigation over small tort cases, because people's medical bills would be paid in a no-fault manner and they wouldn't need to sue each other to get money to stuff into the maw of hospital debt collectors.
There would be fewer personal bankruptcies, which would save middle-class people from being forced into the debt peonage system current bankruptcy law facilitates.
There would be less strained relations between management and unions. Unions wouldn't have to bargain away all their benefits plus wage increases just to hang on to health care coverage that costs more and covers less with every year, disappearing like water into sand.
Non-profit organizations would be able to employ more people to do the essential work of holding our society together, work the government doesn't want to do anymore.
February 17, 2006 10:52 AM | Reply | Permalink
There was quite a high profile case decided in the UK this week on this exact topic. A woman with early-stage (but aggressive) breast cancer petitioned the government for access to Herceptin, an extremely expensive drug (I've seen anywhere from $40,000-$70,000 per year) usually used to treat late stage or secondary cancer. NICE (the rough equivalent to the drug-approval system of the FDA) hasn't approved Herceptin for early-stage use, largely on the basis of cost concerns. And, while individual local health trusts are empowered to purchase non-approved drugs, they have to pay for it out of pocket - in other words, richer districts can afford it, while poorer districts can't. The case was decided against the petitioning woman, on largely technical grounds (the judge ruled that the correct procedures had been followed, but didn't rule on the quality of the policy itself).
There are class divisions in a host of other ways as well (someone has already alluded to the opt-out ability of wealthier Brits, and even on the NHS the service is far better in wealthier areas), and in my experience the quality and aggressiveness of care is better on American HMOs than it is on the UK's national health service.
None of this should be taken as an argument against universal care - indeed, I have always supported it. But adopting a rosy-eyed perception of other countries' health services is no way to ensure Americans get the care they need. Reference them, certainly, but by simply importing another country's system we risk repeating their failures on a much larger scale.
February 17, 2006 10:52 AM | Reply | Permalink
Not to mention that large, struggling businesses (think GM, United Airlines, etc etc etc) would lose a tremendous financial burden. Think how many jobs would no longer be at risk if Ford, GM, Chrysler, United, American, and Delta were all relieved of the need to pay for health care.
February 17, 2006 10:55 AM | Reply | Permalink
Yes, but do you like green eggs and ham?
Thanks for the kind words. It's a fun place to hang out -- and a great way to procrastinate when I'm supposed to be writing a book chapter.
Jonathan Cohn, the New Republic
February 17, 2006 11:19 AM | Reply | Permalink
It isn't that we ration care (and I'm thinking of things like the donor match system for organs)... it's that we auction care. Frame it like that and everyone will understand.
February 17, 2006 11:20 AM | Reply | Permalink
J. McCutchen "JmacSF"
San Francisco. CA
On the matter of class interests, I half listened to a discussion of the BUsh HSA pro/con on NewsHour last inght. The Bush adminstration is unabashedly about selling the middle class on the notion that HSA/more privatization is the way for them to go, thus further isolating the poor/lower incomes.
Jonathan - Granted that Bush's proposals are likely DOA in an election year, but assuming for the sake of discussion not, how real is the threat to universal coverage, politically speaking, from programs such as Bush has introduced in this new budget?
February 17, 2006 11:21 AM | Reply | Permalink
Very well put. I've always said that a good universal health care system requires adequate funding. Otherwise, the floor -- as another commentor put it -- is way too low.
I think that's the problem with Britain, which is at the low end of the per capita spending scale. Again, in countries like France, Switzerland, and Japan -- where they spend more than the UK but still lless than the U.S. -- you don't have this problem as much, if at all.
Of course, there are values and cultural differences between the UK and the US that help explain these decisions.
FYI, for more on this very issue see here. Or you might want to check out that Henry Aaron book, which is about the UK and the US. I haven't read it yet -- so maybe you can tell me what it says!
(edit: commentor? commentator? i clearly need some sleep...)
Jonathan Cohn, the New Republic
February 17, 2006 11:27 AM | Reply | Permalink
it's that we auction care. Frame it like that and everyone will understand.
Excellent idea. If care is to be rationed, it should be in a way that is fair to all our citizens and not limited to giving second- or third-class treatment to those with few resources.
As other commenters have reminded us, it's increasingly the middle-class, along with the poor, who fall through the cracks.
February 17, 2006 11:30 AM | Reply | Permalink
OK, last response, then I need to go back to work.
Some folks (like my friend and fellow blogger Ezra Klein) think HSAs/high deductible insurance hasten the arrival of universal care by marginalizing even more people, expanding the constituency for change. I'm not so certain.
I think it could simply create a bigger constituency for another patchwork answer.
On the other hand, those patchworks seem increaisngly inadequate, too. The right spends a lot of time talking up high-risk pools, which sound ok in theory but are absoultely lousy in practice. We can keep expanding Medicaid, I guess, but it's getting awfully expensive -- and inefficient.
Jonathan Cohn, the New Republic
February 17, 2006 11:31 AM | Reply | Permalink
Since Labour came to power in '97, the NHS budget has increased by 100% without a terribly noticeable improvement in care, so I think there's more going on here than just a shortage of money. Incentive structures are poorly designed (I read one article in which a doctor was discouraged from preventing waiting lists) and the bureaucracy is truly overwhelming.
Be that as it may, my (Brit) boyfriend asked a really perceptive question a few weeks ago. He noted that the US spends far more per capita on health care than the UK does, and the US doesn't have a national health service. "Where on earth," he asked, "is that money going??"
Thanks for the rec on the book - I'll check it out. :)
February 17, 2006 11:32 AM | Reply | Permalink
Until there's people in government that can (or will) think beyond patchwork solutions, patchwork is what we'll get, irrespective of the public demand.
*sigh* It's sad, really - I can't remember when I got this cynical.
February 17, 2006 11:35 AM | Reply | Permalink
Then there is the Rx side of the health care expenditure equation. Economist Dean Baker has outlined a plan to create a network of taxpayer funded Rx research centers. They would be competitive with each other. Could fail and be replaced by others.
The upshot is that taxpayer funding of Rx research will put Rx patents in the public domain. Then pharma manufacturers could compete with one another to actually produce the meds at cost plus competitive profits. Without being able to charge the rents from ownership of intellectual property via patents.
February 17, 2006 11:44 AM | Reply | Permalink
Wonderful post - and your comment about the ill-conceived sense of financial security many Americans have was spot on.
My father was diagnosed with chronic myeloid leukemia in 1995. Shortly after he started treatment with interferon (the standard treatment for CML at the time), the company for whom he had been a loyal worker for more than 25 years relieved him of his position, citing the need to "downsize". Fortunately, my mother was also working full time and was able to cover him under her insurance, allowing his treatment to continue.
Several years later, my father's doctor (a wonderful man) was able to enlist him in a clinical trial of a new drug that had supposedly had an incredible success rate with his particular kind of cancer in earlier trials. The new drug was called Gleevec, and it saved my father's life.
My father had his blood tested just before Christmas last year. The doctors couldn't find so much as a trace - not even a single cell - of the cancer in his body. He is in remission now, and his doctors say that as long as he has access to the Gleevec he will essentially be cured and should be able to live to a ripe old age.
Right now, my father's life is costing upwards of $100,000 a year. I think it is worth every penny - but my family never could afforded to pay that kind of money out of pocket. Had my mother not had the insurance coverage she did, or had my dad not had my mom, he would have slipped through the cracks and would almost certainly not be alive today.
I wish more middle class Americans would realize just how easily the right combination of unfortunate occurances can change your life. More of us are one pink slip, one car accident, one death in the family away from poverty than we realize. That's just one reason why we should all be concerned at all times about just how low that "floor" is...
February 17, 2006 11:58 AM | Reply | Permalink
Jonathan, a few years ago a study was done on single-payer health care systems. The high-light of the article: A single-payer plan financed in the same way as social security. That is, everybody pays. Presently, the study showed, people between roughly 20 and 35 years old do not subscribe to a health-care plan because they don't think they'll need it, and they probably won't. Setting up a system like social security would bring that large group of people into the system, reducing the co/pay cost to an individual dramatically. I should have saved the article, hopefully it's still out there.
February 17, 2006 12:01 PM | Reply | Permalink
The Texas Health and Safety Code is a real example of overt rationing of medical care. Please see:
Chapter 166 Advance Directives- Subchapter 166.050 "Mercy Killing not Condoned."
(Compare 166.050 to 166.052)
Chapter 166 Advanced Directives - Subchapter 166.052 "Disagreement About Medical Treatment: Physician Recommends Against Life Sustaining Treament That You Wish to Continue.
Then consider: Chapter 313 "Consent to Medical Treatment"
Subchapter 313.003 -"Exceptions and Application."
A reading of the Texas Health and Safety Code that governs medical care in that state is well worth reading.
February 17, 2006 12:12 PM | Reply | Permalink
The U.S. is the only first-world country that does not provide for its citizens health care.
U.S. unions made an error, 40 years ago, by insisting upon health coverage through employers – rather than national health insurance, which is what European unions demanded.
Now our companies are hobbled by huge health care costs (or they foist those costs on taxpayers, as Wal-Mart has done, by providing little or no health care to employees). Those costs put us at a tremendous disadvantage – and people who are employed dare not retire or leave their jobs, because they can’t get health care!
We do ration health care here – both by the cost that limits good care to rich people, and by the machinations of insurers, who demand authorizations and co-pays that take time and money before the patient is finally treated (if treatment is agreed-to).
The bottom line is, unfortunately, the financial welfare of the insurance companies. It should be the physical welfare of our citizens.
February 17, 2006 12:12 PM | Reply | Permalink
If I recall correctly, HillaryCare would have made it a crime for a doctor to provide medical services privately for a fee, outside of the State system. So it's a little hard to take seriously the claim that "in America, we obviously will never outlaw private care."
The interesting question is why health care, unlike housing, clothing, entertainment, communication, food, transportation, etc. should be a government funded right. This is not at all obvious as a matter of principle, although there may well be substantial public support for it.
February 17, 2006 2:35 PM | Reply | Permalink
The $100,000 drug, Avastin, was developed with government support. Judah Folkman was funded by government grants for over 25 years during the basic research and development of angiogenesis inhibitors (the class of drug to which Avastin belongs). The reward for this support is pricing the drug higher than the median and average income in the U.S.
It is ironic that the medication does not appear to cure disease but may improve survival in selected cases by a few months.
Taking advantage of the sick and desperate appears to be standard operating procedure for our so called system.
We need a better way to pay for new development as well as basic access to care.
February 17, 2006 2:54 PM | Reply | Permalink
DBL says:
"If I recall correctly, HillaryCare would have made it a crime for a doctor to provide medical services privately for a fee, outside of the State system."
If I recall correctly, you're wrong about that. There is a lot of misinformation out there about HillaryCare which was modelled on the German plan. Canada is the only country that I know of where some -- but not all -- types of medical services can not legally be provided privately.
My parents are pretty well off and when my father retired in his late 50s, my parents needed private health insurance. My mother was unable to get medical coverage without excluding her right leg. She had had a fall (spectacular and not very good judgement, but not indicative of any sort of medical problem other than excessive enjoyment of competitive sports) and a fracture with complete recovery, however no insurance company would insure that leg for any reason whether or not it was related to the "pre-existing condition". At 64 she had a freak pneumonia with sepsis, multi-organ failure, disseminated intravascular coagulopathy, need for multiple pressors, and 2 weeks in the ICU in a coma. Although her prognosis for survival was less than 10%, she recovered completely (exercise is really, really important for health and a phase III drug trial didn't hurt) and lost her insurance a few months before becoming eligible for Medicare. Although people like to believe that other people get sick because of poor judgement, the truth of the matter is that freak things just happen and people do get sick for no good reason.
February 17, 2006 4:18 PM | Reply | Permalink
You recall erroneously. You either believed someone's lie, or you made it up. This is disinformation on the order of the old claim that the ERA would have made separate men's and women's bathrooms illegal.
Notably, you did not list "education" amongst the goods to which citizens do not necessarily have a right. That's because in the US, we have believed for well over a century that education is in fact a right. But this is no more "obvious as a matter of principle" than that health care should be government funded as a matter of right. The government provides a basic education as a matter of right because we in America believe that the rights of citizenship are meaningless if you can't read, and also that a country whose citizens are ignorant and ill-trained will be a poor and weak country. That the same arguments apply to health care is obvious: the rights of citizenship mean precious little to people who are suffering from untreated asthma or ulcers because they can't afford health insurance, or who are afraid to open their mouths because their teeth have rotted away after too many skipped dentists' visits. And if you like living in countries where working-class people are ugly, stunted, and scarred - well, I was about to say "move to the Philippines", but these days you just have to move to central Pennsylvania.
Also, food is a right. You may have noticed that when there is a risk of people starving in the US, we fly in MREs. We also used to consider proper nutrition for children to be an appropriate government concern; since we've stopped paying much attention to that, American children have become the most obese in the world, and they are now significantly shorter than children in countries like the Netherlands and Germany, who they used to be taller than.
February 17, 2006 8:37 PM | Reply | Permalink
I have learned that whenever one discusses what was in the Clinton Health Care Reform Bill it is useful to remember why it failed. It failed not due to its monumental overhaul of health insurance. It failed for two fundamental reasons, one political the other financial:
1. In Bill Kristol's words, if this bill passes Democrats will be reassured of re-election for generations. Republicans will remain a permanent minority.
2. The financial services industry likes the cottage industry that is our medical care delivery system just the way it is. This includes insurance, investment banking, durable medical equipment makers, Phrma, venture capitalists and IT.
The Clinton reform bill would not have hastened the consolidation of either the health insurance industry nor the managed care industry beyond what has occurred to date. It would have opened drug and medical device manufacturers to greater price pressure as a result of unified purchasing power (monopsony) and much of what AmberJane discusses in her posts on single payer would have been in play.
On the whole, the Clinton plan provided a public-private partnership in both the financing and the delivery of health care. It included longterm care coverage and reduced the number of uninsured. It did not exclude private insurance or medical care. Lastly, there was plenty of opportunity for political maneuvering within the political heirarchy of the bureaurcracy that it established. But that is hardly different from the corporate bureaucracy we endure today in the delivery and financing of health care in the U.S.
February 18, 2006 7:31 AM | Reply | Permalink
The government provides numerous subsidies for all of those except perhaps entertainment. But a number of things distinguish health care from any of them. One of them is the same thing that distinguishes education, at least with regards to children's health care--it's an investment in a future healthy workforce. But there are numerous things that further distinguish health care:
- costs vary tremendously from person to person
- costs are unpredictable
- people are not in a bargaining state of mind when they make health care purchasing decisions
- diseases are communicable
- prevention is cheaper than cure
Private health insurance sort of covers the second and third. Public health care is necessary to cover the first, fourth, and fifth. Employer provided health care is a malfunctioning kludge to provide for the first, fourth and fifth in a system lacking universal health care. So while the right is correct that linking health care to employment is horribly inefficient, simply ending it without providing some floor of universal coverage would be a disaster.February 18, 2006 9:20 AM | Reply | Permalink
Just a small piece of pedantry: the fact that hospitals can't deny care based on the ability to pay doesn't mean -- thanks to our current patchwork system -- that you'll necessarily get the care you'll need. If definitive treatment (as opposed to palliative care) for your condition requires the services of a surgical team and a bunch of specialized therapists, consultants and diagnosticians, all of whom bill separately, and all of whom (depending on their contracts with the hospital) may be able to avoid or delay dealing with your case.
February 18, 2006 12:27 PM | Reply | Permalink
While I don't want to be pollyannaish here, I think you're overstaing the possible need for rationing in the US under a universal system.
We spend terribly inefficently, beyond the administrative issues. It's my understanding that we are more aggressive about end-of-life care than most other nations. That's often not a patient preference issue--it's a physician practice issue. Given that end of life spending is so huge a chunk of the healthcare bill, there's an opportunity here to find some real savings by making a medical culture that focuses less on "winning" and more on maintaining the quality of life patients and their families want for as long as it's possible. Obviously, we don't want to go too far and end up in "euthanasia! yay!" territory, but I think we can make reasonable changes here that are a win-win in terms of both quality and cost.
Again, not a magic bullet, but it's one of many areas in which there is reason to believe we can get savings without sacrificing quality, and to believe we can actually get it done (as opposed to the "everyone lives healther!" pipe dream of HSAs).
I'm just saying that given what we already spend per capita, I don't see any justification for rationing. And frankly, it's not a point I'm willing to concede. I'd much rather see the pressure on the medical profession to find savings by changing the way they do business, than on the patients to find savings by suffering and dying.
February 18, 2006 7:57 PM | Reply | Permalink
Hmn. Third attempt to send this. So instead of previewing I will post a no doubt illiterate and ungrammatical comment. Lindsay commented the increased NHS spending didn't improve care. Two responses 1.It was absorbed in the extra
staff required to shrink the outrageous waiting lists which Maggie
created , perhaps in attempt to disparage the NHS.2. My daughter who resides in the UK but frequently visits here sees
no need to "take advantage of the US medical system"-in fact the exact opposite is true.
February 19, 2006 6:33 PM | Reply | Permalink
There have been dramatic improvements in the waiting list situation, but given the tremendous increase in funding I was expecting quite a bit more. And even those improvements have been extremely patchy, with some local trusts in greater debt and farther behind than ever, while others have been far more successful. I think your daughter and I, in fact, may be experiencing opposite sides of the improvement coin. My local trust is tiny but serves a huge number of people; routine test results take months to get back, the staff is harried (especially the doctors), and the place is not reassuringly clean.
Two anecdotes do not paint a full picture, however, and I'm by no means an expert on the subject. Suffice to say that, despite all its failings, I'd still rather be an NHS patient than an uninsured patient.
February 20, 2006 12:20 AM | Reply | Permalink
Excellent point about quality of care. One of my medical areas of interest is pain management. I'm constantly amazed how many clinicians don't understand the mechanisms of pain, and either how to treat moderately complex pain, or at least when to refer to a pain management team.
I emphasize "team", as it's not just in hospice care that a patient may need an interdisciplinary approach to return quality of life in chronic, nonterminal disease. Dramatic and even cost-effective interventions are possible. Perhaps the most striking case I ever encountered was a woman who, when I first met, seemed infinitely old, hesitant, and miserable. I guessed she was in her sixties. She had a complex case of sickle cell disease.
With interdisciplinary management, both of the blood disease itself and often should be regarded as the separate disease of chronic pain, some of the lines went out of her face. I didn't see her for several months, and then had to be reintroduced.
Given that the patient now was a vibrant woman in her early thirties, fully returned to demanding work as a chemical engineer, not content to be merely a soccer mom but playing league soccer, singing beautifully in her church choir, and doing an all-around impression of Superwoman, I think I have some excuse for recognizing her. One of the keys to her treatment was an implanted pump that delivered a huge -- but clinically justified -- constant dose of morphine into her spinal fluid. There were other pain management techniques involved, both in her rehabilitation, and continued support of quality of life. Given the professional level at which she functioned, the expense probably was quite justifiable.
There still needs to be a lot of education of medical personnel about quality of life, pain management being a part of it. Perhaps this is too much of a specialized reference, but it's amazed a great many people working with pain managment that Melzack and Wall, who discovered the fundamental mechanism ("gate control theory") about the way the explicit sensation of pain does, or does not, cause discomfort, have never been in consideration for the Nobel Prize in Medicine or Physiology. Their fundamental insights were at that level.
Melzack and Wall were the greatest theoreticians. While her work was hospice-oriented, there's still too little understanding of the clinical methods developed by Dame Cicely Saunders. While she is considered the founder of modern hospice, she pioneered dosing schedules, nursing interventions, and other techniques for improving quality of life, techniques that are often inexpensive and simple.
February 22, 2006 8:17 AM | Reply | Permalink
Might I suggest we do both? Yes, there's a money-dependent auction for services. Part of the complexity is that the end user, in an employer-based system, doesn't even get to bid. Even if that end user were willing to pay more in premiums than the company's standard plan(s), it's not an option.
There are other, subtle, ways in which there is rationing. I suspect all rationing systems have control feedback that causes a reduction in demand. If one thinks of rationing in general, there will always be a certain number of people that decide not to stand in line. If it's a concert with a line stretching for blocks, someone may decide not to attend, hire someone to stand in line, or pay a scalper.
Going off into an odd but relevant technology that actually does apply to a wide range of problems, telephone traffic engineering has several statistical models to determine the number of lines serving a location. It's perfectly reasonable engineering to use a lesser number than there are potential users, given that it's unlikely everyone will try to call at once. There are three basic models:
Applying this to waiting lines in an emergency room (assume no triage), someone may decide they don't need the treatment, will go for it elsewhere, will get alternative treatment, or perhaps die. We see a different model when managed care has extensive preauthorization procedures.
I've been told by people inside managed care organizations that some actually measure how many insured patients give up if the preapproval process increases in time or general hassle factor. As with many fields where some people have extra information, it's sometimes possible to game the system by finding ways, for example, to get some sort of preauthorization. For other cases, the hassle may drive patients to go to an ER for nonemergent care.
February 22, 2006 10:07 AM | Reply | Permalink
I'm familiar with the mode of action of angiogenesis inhibitors, but not how the pricing is derived. Do you know the basis of this price? Factors that might be involved, depending on how much of the research and clinical testing was done under research grants, include:
Sometimes, it's a valid strategy to release a first drug in a class, if wider experience is likely to lead soon to better drugs, or even relevant research data. In other cases, there has to be an ethical question, especially when the drug will give only marginal and/or short-term improvement in a fatal disease, when is it an essential futile treatment and waste of resources?
Quality of life is an issue, and it's fair to ask both how much quality of life improvement will be provided. Various medical economic studies look variously at numbers of years of life saved per unit of cost, and, in some, numbers of years of quality life saved per unit of cost. Quality, of course, can be quite subjective. I can easily picture being in demented states where a drug might extend life for twenty years -- and I hope my advance directives are clear enough that I would absolutely not want such therapy. Indeed, my directives call for comfort measures only if I have irreversible dementia -- no antibiotics, for example.
I've known cases where a given therapy, technically lifesaving, was rejected because it would not give the patient an acceptable quality of life -- by the patient's standards. Jack Kevorkian's circus-like activities caused much controversy, but, in a different way, the antithesis of Kevorkian's approach, a very thoughtful and caring case of assisted suicide, first presented in a scholarly journal by Dr. Timothy Quill, caused even more controversy in medical circles. Quill's long-time patient had a potentially treatable disease, but she found the treatment unacceptable to her, and asked for assistance in suicide. See Quill, TE, "Death and dignity. A case of individualized decision making", New England Journal of Medicine 324:691(1991).
Assume Avastin's price is a fair reflection of its cost, and that we have a single-payor universal system with a national health budget. Under what circumstances would Avastin therapy be a reasonable allocation of resources?
"Paging King Solomon...King Solomon, please come to the bioethics conference room. Bring your sword."
February 22, 2006 10:41 AM | Reply | Permalink