Princeton ethicist Peter Singer’s article in this week’s NY Times Sunday Magazine is creating lots of buzz. It is a classic utilitarian description of the case for rationing – QALYs and all – and a plea for a mature national dialogue about the dreaded R-word.Don’t hold your breath. To understand why, remember the words of Joseph Stalin: “A single death is a tragedy, a million deaths is a statistic.”
A society of grown-ups would read Singer’s article and say,
“Gosh, he’s absolutely right. If we don’t make some hard choices about whether to cover $50,000 palliative chemotherapy to extend a life of an 80-year-old by a few months, then we are choosing not to have enough money to provide universal health insurance, or to ensure that everybody has their pap smears and generic Lipitor (or, while we’re at it, to house the homeless, provide decent public education, or have viable auto companies).”
Rationing is inevitable – as I recently mentioned, talking about whether we should ration is like talking about whether we should obey the laws of gravity. The only question is how we do it. And what better time than now to have this difficult national conversation, being that we’re in the middle of retooling our entire healthcare economy, the fundamental obstacle is finding the money to pay the bill, and we have a president who truly understands the dilemma and is smart and mature enough to lead the discussion.
Yet rationing remains a political Third Rail, the Lord Voldemort of the healthcare policy debate.
The issue is not new, nor are its political trappings. It’s worth understanding a bit of this history to frame today’s debate – and lack thereof.
In 1984, Colorado Governor Richard Lamm famously opined that the elderly had a “duty to die” in order to free up resources for the young. He was vilified.
In 1987, Oregon stepped into the mess that is healthcare rationing, and spent much of the next decade scraping off its metaphorical shoe. In the face of exploding Medicaid costs, the state legislature decided not to fund transplants (including bone marrow transplants) in order to preserve limited funds to cover other services.
This was in the early years of bone marrow transplant, when BMT had a 50-50 success rate for certain types of childhood leukemias (it’s better now), and cost about $100,000. The state did the math, and found that for the same $100K, several lives could be saved by plowing the money into other healthcare needs, including prenatal care. And so BMT became an uncovered service. A perfectly rational decision if you live in Utilitarian, Most-Good-for-the-Most-People, World.
But that’s not the world we live in.
What happened next was utterly predictable. A 7-year-old boy named Coby Howard developed acute leukemia, Oregon denied his BMT coverage under Medicaid, and his mom went ballistic (any parent, including this one, would have done precisely the same thing). The only question was which megaphone she would grab first to make her case: the media, her local congressman, or a lawyer (ultimately, of course, she used all three). Here’s how it sounded on ABC’s Nightline:
[Ted Koppel] began the program with footage of Coby Howard and said: “When the State of Oregon decided to stop funding organ transplants, it allowed this boy to die.” Koppel later asked: “Is the cost of modern medical technology forcing public officials to play God?”
In the end, Coby received his BMT, paid for by private donations, but sadly died later that year. Under the leadership of state senate president (later governor) John Kitzhaber, a former ER doc, and in the face of withering post-Coby criticism, Oregon developed a more explicit rationing plan – of course, it covered BMT. Kitzhaber and his staff later described the pressures they felt after they took on healthcare rationing,
“Our detractors consist mainly of uninformed members of threatened interest groups who delight in comparing the Oregon plan to a perfect world.”
Stalin could have predicted this, of course. The Oregon rationing plan (both the ad hoc decision to deny BMTs and the more explicit “prioritized list” that followed) depended on a hard-boiled tradeoff between a single identifiable life – in this case, a cute child with a determined mother – and many unidentified lives. We’ll never know which kids were saved by better prenatal care, or whose strokes were averted by primary care and hypertension control. These statistical lives make for a pretty dull interview on Nightline – and they don’t blog.
Where do docs fit into all of this? Our ethical model is to do everything we can for the patient in front of us – we are socialized from the first day of med school to believe that the single death is indeed a tragedy (the late Norman Levinsky made this point in a wonderful piece in the NEJM called “The Doctor’s Master”). Although as responsible citizens, we care about society and the unidentified lives outside our office or our ICU, it is not our job to weigh the impact of our choices on them. And, of course, we won’t be sued by society for plundering its resources, but might well be sued by the family of an individual patient who feels that we didn’t do everything possible to save their loved one.
I just finished a couple of weeks on the wards, and once again cared for several patients – cachectic, bedbound, sometimes stuck on ventilators – in the late stages of severe and unfixable chronic illnesses whose families wanted to “do everything.” As I wrote last year, there are limits (like chest compressions) on what I am willing to do in these circumstances, but they are mostly symbolic – basically, I am a bit player in this crazy house, with no choice but to flog the helpless patient at a cost of $10,000 a day in a system that is nearly broke and whose burn rate threatens to ruin our country. Go figure.
Is there anything we can do? The favored solution, a board resembling the UK’s National Institute for Health and Clinical Excellence (NICE) with the teeth to limit certain new drugs and technologies, is hard enough. But even if we were able to get a NICE-like organization in place (doubtful), that doesn’t really address the brutally tough issue: is our ethical model one in which we do everything possible, irrespective of cost, for every patient when there is any chance of benefit, or one in which we place limits on what we’ll do in order to do the most good for the most people. An American “NICE” isn’t going to limit ICU care for 80-year-olds with metastatic cancer. That will require a much broader public discussion, and even harder choices – since they will need to be made at the bedside.
As Singer notes, every society that rations provides a safety valve for the wealthy disaffected. In the UK, you can buy private insurance that allows you to jump the queue for your hip replacement. Canada’s safety valve is called the Cleveland Clinic. We don’t talk about the percent of our GNP we are spending on Starbucks lattes, or on iPods, or on vacations. People pay for these things out of pocket, and receive no tax advantages when doing so. Given the American ethos of self-determination and consumerism, any rationing plan will need to allow people who can afford care that isn’t covered by standard insurance to buy it with their own money (with absolutely no tax advantage). Two-tiered medicine, sure, but I see little problem with this as long as we are using the money in the communal pool to provide a reasonable set of benefits to the entire population.
How might a thoughtful structure to support rationing be organized in the U.S.? When considering new technologies and drugs, it will probably entail an independent board empowered to make coverage recommendations based on cost-effectiveness, just as NICE has done in the UK. But just as importantly, at the level of individual hospitals or healthcare organizations, there will need to be committees of providers, administrators, and patient advocates that can set and defend limits on care. Such decisions would not automatically mean that grandpa can’t stay on the ventilator, but would mean that ongoing care would no longer be fully covered by insurance. Of course, these decisions would have to be all-but-immune from litigation threat.
Will this happen? Probably not. Twenty years ago, the great Princeton healthcare economist Uwe Reinhardt observed that there are two kinds of rationing: “civics lesson rationing” and “muddling through elegantly.” In the former, a NICE-like federal board, or local panels such as the one I’ve described above, weighs the evidence and makes these tough rationing decisions algorithmically and prospectively. The muddling through option, which Reinhardt felt was far more likely, involves limiting the resources available – the number of ICU beds, or MRI scanners, or CT surgeons – and allowing docs, patients and administrators to duke it out at the bedside. The evidence is that they do a decent job at triaging to provide the most good for the most people.
Of course, these limits are naturally present when resources are truly scarce – like livers for transplantation – and in these circumstances we have developed thoughtful rationing approaches. The point is that health care dollars increasingly resemble livers.
I’m pleased Peter Singer and others have dared to speak of the R-word in public, because it is so central to today’s healthcare policy debate. But will the society that brings you Rush Limbaugh and Glenn Beck (or, I’m beginning to think, some of our Democratic representatives) deal with it in an effective, mature way? I truly doubt it.
Why not?
Joseph Stalin would know.
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Tagged: Bob Wachter, History, Media, New York Times, Rationing Feb 1, 2009
Of course, we all know that computerized decision support and computer guided CER will make this simply effective and a barackraticly efficient component of budget neutral health care reform.
We all do rationing….based on our budget. The question becomes difficult when it comes to life. As you know, people put everything they have for the sake of saving lives of family members. And they when do you know when to give up.
Under such circumstances and emotions, it becomes difficult. Now the people who can help reduction in the waste are physicians. By using expensive care even in no-odds to survive situation, providers benefit. Are they telling the patient to do the right thing.
The case of Teri Schavo (sp) was an example in FL. The lady was vegetative for about a decade. The cost must have been enormous. And I bet she was in the pain to. I am not sure if keeping her onlife was a medical or personal decision.
One has the right to spend money as much as they want even if it may be silly. The question is how much should be covered through insurance… And should we really let someone play god?
It then have to be opinion of 2-3 peers to decide that a person identified not as a candidate to receive reatment should be further treated or not!
It is emotional issue… The decision has to be based on logic, empathy, care, and by very competent.
rgds
ravi
blogs.biproinc.com/healthcare
http://www.biproinc.com
Dr. Wachter,
Congratulations on a terrific post. This is a subject that cries out for a more robust and honest discussion.
I wonder about two things. First, how much would it cost to provide an adequate series of palliative care consultations for the families of patients in end of life situations? Do most hospitals offer palliative care and how much pushback is there from doctors, especially oncologists? Second, how common is it for very sick patients to have living wills or advance medical directives that outline their wishes with respect to end of life care and is the information readily available to the doctors and hospitals when it’s needed?
I agree that a NICE-like organization is fine for determining whether or not to pay for new drugs, devices or other medical technologies. For the other situations you describe, however, we need a redefinition of what constitutes good sound medical practice coupled with appropriate legal protections if we expect doctors to adhere to it.
The use of expensive therapies are further fueling the runaway costs of the health care system. Cancer patients will face rationing of care if costs continue to rise under an unabated private market system. Comparative research has the potential to tell us which drugs and treatments are safe, and which ones work. This is not information that the private market system will generate on its own, or that the industry wants to share. The “industry” wants to continue to control the data, how it is reviewed, evaluated, and whether the public and government find out about it and use it.
Many oncologists are “doing” things (chemo-therapists) more than listening to patients and discussing important issues with them. If they were paid for their thinking skills rather than for selling medications, the use of these very expensive drugs just may fall. Patients and families would receive what they want and need thoughtful discourse and expertise in helping them through some very tough times. But these measures alone are far from sufficient to change the culture of chemotherapy practice where it is emotionally easier and financially more lucrative to administer more chmotherapy than to have the tough discussions.
I came across a great line a few weeks back that bears repeating.
Q. Why do coffins have nails?
A. To keep the oncologists out.
Thanks for the thoughtful comments. Re: Barry Carol’s questions above: at UCSF Medical Center, where I practice, we have a spectacular palliative care service. Without question, there are times when getting them involved makes all the difference, since patients and families can be offered a humane and tangible alternative to the full-court press. I’ve blogged on this previously:
http://community.the-hospitalist.org/blogs/wachters_world/archive/2008/11/27/my-patients-are-dying-and-i-ve-never-been-prouder.aspx
But most of the time, this tension stems less from a knowledge or compassion gap (which could be filled by strong palliative care) than from the emotional/psychological/spiritual/religious forces that often consume the families of sick and dying patients. The family wants their loved one to live and cannot handle the guilt they feel by endorsing limits on care. And we physicians are unable to say with 1000% certainty that mom can’t possibly survive the hospitalization and live another month or two at home — it is very unlikely, but not impossible. Mix all of that together, and what you frequently get is, “we want you to do everything, doctor.”
In my experience, the economic influences in these situations are more on the patient than the provider side. Even in the McAllen, Texas’s of our great country, I doubt there are many providers who promote ongoing intensive care in these circumstances just to be reimbursed for another day of near-futile care. But I’ve often mused about whether some of these decisions would be different if patients or families had a co-pay of as little as 2% for each extra day in the ICU — ie, a couple of hundred dollars — once the patient’s prognosis fell below a certain level. I think many patients and families would make different choices if ongoing care were no longer “free.”
Living wills? Fine but surprisingly unhelpful. Some patients have thought about these issues prospectively and have made it clear that they “want to die peacefully.” But you’d be amazed at the number of times that patients have a living will that endorses setting limits on care, but, at the moment of truth, this is interpreted by the family as “not wanting to live as a vegetable” or “what mom meant was she only wanted to limit care if things were truly hopeless.” In many cases, it is not hopeless — it is simply that ongoing care is breathtakingly expensive and the probability of benefit is vanishingly low, but not zero.
Without a new social contract about how to deal with these situations, doctors’ hands are tied, and the best palliative care in the world can’t undo that knot.
The Liberal case against the R word
One of the major drivers behind health care reform is providing care to the uninsured and under insured, thus alleviating the de facto rationing of care based on ability to pay. That of course is on a perfect collision course with the other major driver of health care reform, cost containment. In the NYT article, Peter Singer is suggesting that we replace the ability to pay rationing with a system based on a-priori valuation of human life based on physical attributes. Basically a “blue book” for what a year of life is worth for any given circumstance.
I found a certain “nobility” in allowing disabled people to evaluate their lives in comparison to able people. If they valuate to high, then we will not pursue a cure for their medical condition. If they valuate low, they will be denied life extending treatments by the appropriate ratio. Damn if you do, damn if you don’t.
Of course, if you are rich, this entire life worth valuation is null and void. Wealth automatically valuates your life at the maximum blue book value.
So we maintain this nifty accounting system, for poor and ever dwindling, middle class folks, democratically based on surveys of the masses and assign a dollar value for each year of life. For example, if you live in abject poverty and would prefer to have a life of riches, albeit a shorter one by X number of years, the calculator will kick in and reduce the dollar value of your current life by the appropriate ratio. This value will decide how many dollars we will spend on trying to extend your life in case of, say, a serious accident. If you have a problem with that, you will need to hire Daniel Webster, who made a very successful argument in the very similar case of Jabez Stone vs. The Devil.
I submit that this accounting system for human life flies in the face of the basic values this country was founded upon.
“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”
It doesn’t say anything about physical and socio-economic status.
I would really like to understand the motivation for the sudden need to formalize policy on care rationing. Is it because it is easier then taking on the corporations that are bringing the health care system to its knees by extracting profits for no apparent value contribution? How about rationing the dollar amount that these folks, who provide no care, are allowed to extort? Make it zero. Am I ignoring the well established “political realities” again? Political realities that dictate that powerful lobbies will always trump regular folks, particularly ones with low “blue book” value.
Disclaimer: I am now, and always have been, a bleeding heart Democrat. I abhor discrimination of any kind and this one seems to be worse than anything so far. With all due respect to Plumber Joe, spreading the wealth seems a very good idea to me. The rich have gotten richer in the last decade by an unprecedented rate. I think we can find the resources to avoid dishing out more misery to those already afflicted by disease, poverty and plain old age.
I agree with you regarding rationing. No Democrat will want to have their fingerprints on any sort of rationing. No Extra-ordinary Committee will issue guidelines that have the force of law. Perhaps they will issue guidelines that allow you to be paid, if you follow the quideline, but not paid if you go beyond them. That would leave the individual doctor to be the bad guy who pulls the plug in the ICU, with little blame attaching to the New Men. No guideline will be issued that will afford you protection if the family comes after the Doctor for (blood) money. Thus nothing will change.
The only really solution is a two tiered system. Reformers don’t like it because …surprise the rich get more than the poor. Where was the outrage when Ted Kennedy got experimental surgery out of state for a tumor that MGH routinely treats with radiation and an admonition to not buy any green fruit or long novels. Where was the outrage for the thousands of patients that MGH treated with radiation when they might have benefitted from a trip to North Caroline (or Cleveland, for that matter)?
A multi=tiered system would include basic care is the stuff that actually works, and more aggressive plans qualify you for more aggressive treatment. This offends wealthy liberals who like to think they have the interests of the downtrodden in the US at heart, while they live off the virtual slavery of the downtrodden of the third world. It would also involve rewriting tort laws. Liberals still live in a bygone world where lawyers extend civil rights instead of lining their pockets with millions of insurance company dollars.
As is pointed out in Covert Rationing, many things we think primary care does well..treating hypertension for example are less cost effective than the now discredited as too expensive Crestor for elevated cholesterol. If hypertensive treatment is a poor investment, just imagine how many other common practices are marginal.
Comparitive effectiveness will not provide a roadmap. It will raise more questions than it answers.
Current reform proposals don’t seem to break the stranglehold of employer based insurance, don’t eliminate the uninsured and do not address utilization. The principle objective seem to be control of physicians. Lower income and the destruction of fee for service medicine are promoted by academics that already have this business model. Academics stand to gain a competitive advantage from its more universal adoption. Simply a special interest pressing for a government policy which gives them an advantage. Really this is the kind of thing that Republicans are usually caught doing.
This will not improve healthcare
(Why do we constantly quote statistics like life span and infant mortality which we KNOW are unrealated to our medical system. Will repeating this make it true? And if our system is so bad, why would anyone want it. )
The bottom line is that only be radically decreasing the standard of care for the basic plan will we actually be able to afford healthcare for all.
Great article Bob, and reflective of the American reality, but I do have to remind you all that there is a way out. And that this is the wrong debate…
The way out:
No one in the UK ever talked about rationing health care when I grew up. There was a global budget that the medical profession (in general) managed, and they allocated the money in a rational and UNEXPLAINED way.
When Aaron & Schwartz wrote “The Painful Prescription” and accused British doctors of rationing in the case of ESRD, the Brits said, no “we’re doing the best medicine….you shouldn’t keep 75 yr olds on dialysis”
This is partly cultural and partly financial. But it can be done–but only in the context of a global budget for a population.
The wrong debate
But and this is the huge BUT, the Dartmouth stuff shows us that we can cover everyone and spend less with no “rationing” (at least in the end of life stuff) so long as we cut out the unnecessary stuff. (McAllen, Tx, etc) That requires too a change in payment and medical culture but not one that can be so easily opposed.
Margalit this is not true at all!
“I abhor discrimination of any kind”
You openly advocate for me paying greater taxes then someone who doesn’t work or has a crappy job. You demand all sorts of progressive concessions from those “making more”. That is the definition of discrimination. Why should I pay more taxes then someone who chose to have kids? Why do I pay more taxes then someone living in CA or MA? Why do I have to work 12 hours a day to pay welfare, housing, food stamps, and Medicaid for some idiot that had kids they can’t care for? You are a huge fan of discrimination as long as it benefits those you consider less fortunate. Even when this lack of fortune came solely as the fault of their actions.
Just as the rich have gotten richer the poor have gotten poorer by an unprecedented lack of effort to do otherwise. My HS graduating class had over 1200 students of which 700-800 graduated. There where kids that rode the bus to school everyday, studied their ass off, went home and studied more, got jobs and have decent lives. Then there were the bangers and clowns who made no effort. When a larger and larger percent of the population CHOOSES to be uneducated morons then a greater percentage of the population is going to end up poor. All people might not have an equal chance but the thing that makes America the greatest country ever is EVERYONE has a chance. I have never in my life meet someone that failed to have a decent life when they tried. This country is so full of opportunity and compassion for each other that with even modest effort you can make something out of your life. As long as you bleeding hearts fail to recognize this reality you will continue to doom generations to poverty. Your “compassion” has ruined million more lives then you would ever have saved.
You deny me liberty, life, and pursuit of happiness when you require me to labor to support those that CHOOSE not to labor.
The only fair way to ration is to allow people to freeing purchase what their labor will buy and it is the only sustainable way to ration. politics, greed, and lazyness will destroy any other method.
Matt, I don’t know if this is the wrong debate, but I do agree that there is a way out. The system is laden with opportunities for savings, be it uneven practices of providers or any other corporate profit. However, weeding those out, requires determination and a will to stand up to mighty interest groups. I cannot believe that with all the money in the system today, we need to consider rationing ala Peter Singer.
These decisions are best left to the patient/provider/family combo. I guess, we shall see…
Nate, I have no idea what you are talking about. A lot of people are working 12 hours a day, with very different results. The top 1% are able to make such enormous strides exactly because of the existence of all the rest of us who work 12 hours a day and don’t have combined household incomes of $1MM and above, and never will.
Those “idiots” you refer to are indispensable to an economy of greed. Someone has to clean the toilets at 5 stars resorts. The least the rich can do is subsidize their health care.
It’s not discrimination. It’s social equity.
I think at a conceptual level, most people are willing to pay taxes and/or contribute to charity in order to help people who were simply dealt a bad hand in life. For people, including many from middle class and upper income backgrounds, who were irresponsible or made bad choices or fell in with the wrong crowd, there is understandably less sympathy. The problem is that it is not always so easy to separate one from the other and, even if we could, we are not going to just let them die at the hospital’s door when they show up at the ER.
That all said, I think there are ways to develop incentives, both positive and negative, to encourage responsible behavior around smoking, weight control, blood pressure and cholesterol levels. At the end of the day, personal responsibility counts for something or at least it should. We need financial carrots and sticks to encourage the behavior we want and discourage what we don’t want in order to help control healthcare cost growth.
Dr. Wachter’s answers to my questions suggest that end of life care is an extremely tough issue. I would like to throw out a couple of other ideas for dealing with it.
First, I think the palliative care team could be brought in considerably earlier, especially for elderly patients with cancer, Alzheimer’s, dementia and ESRD. For younger cancer patients, maybe the palliative care discussion can wait until the disease is more advanced. I also think it would be useful if all sessions were at least audio recorded in order to deal with any later disputes as to what treatments the patient or family members previously indicated they wanted and didn’t want. Recording of conversations is common practice in other industries from call centers to Wall Street trading desks to insurance claims adjusters.
Second, I think we need to attack the issue through changes in payment policy. The various medical specialty societies could evolve a consensus definition of a reasonable and appropriate standard of care for late stage cancer, ESRD, CHF, advanced Alzheimer’s, dementia, and other end of life conditions. That standard should take costs vs. potential benefits into account. If the patient or family members want treatment beyond the standard of care, they should be exposed to enough of a co-payment obligation to get their attention. If the patient can’t pay, Medicare or other insurance should be able to make a claim against the estate. If the patient is on Medicaid, a family member who insists on treatment beyond the standard of care should be deemed a financially responsible party. Hopefully, in the end, we could reach the point where families could satisfy themselves that they did everything they could for mom or dad WITHIN THE SYSTEM. People need to get the message that resources are finite, we can’t afford to give everything to everyone, and there aren’t enough rich people to be the “someone else” who pay for it all.
Whether we admit it or not, we are doing it in some areas already either through insurance (or the lack there of), through denial of care by insurance companies etc. We know we have to change the system. Go ahead and make the necessary change.
Margalit Gur-Arie,
What I believe Nate is trying to say is that this country was founded on equal opportunity – not equality of outcomes. Yes, the top earners made a lot of money the last 10 years. They also have just lost just about all of it back to the market correction. I find it really hard to swallow that the “rich” don’t pay their fare share when 40% of our citizens pay nothing in income taxes – 60% pay less than 5% of their income in taxes and the top 1% shoulders the vast majority of the bill. Obama and the Dem’s in congress are looking for the top earners to pay in combined Federal and State taxes almost 60% of their income. How do you take risks, work hard and then hand over almost two thirds of the results to someone else?
Frankly, this kind of confiscatory policy is ultimatly self-defeating. Citizens will hide their earnings – or simply stop working so hard. History has shown that tax revenue never materializes when rates are this high.
Back to health care. Bottom line is this. Both you and Nate agree that Rationing has to occur. The difference is that you’d like the government elites to decide who get’s what and Nate would rather self determination based on ability to pay decide. I’d rather have the opportunity to succeed and own my own destiny than leave it to those in D.C.. After all, they can’t run Amtrack, the Post Office or Medicaid – what makes you think they can do any better for the rest of us?
Matt,
Do you really think it would save money to go to a salaried model like at Partners? McAllen on the Charles?
Social equity is what you call discrimination you support in order to justify it, the new name doesn’t change the fact you are a HUGE advocate of discrimination. Not that it is a bad thing; I wholly support discrimination in all sorts of scenarios.
“I think there are ways to develop incentives, both positive and negative, to encourage responsible behavior”
After almost 20 years in insurance I know for certain society has evolved far past responding to incentives. When a large part of the population refuses to pay more for health insurance then they expect to have in medical claims we need to look for another method. While 11 million people have bought individual policies we also know 40 million of the uninsured are either entitled to free insurance and won’t invest the time to sign up or can afford it and choose not to. That is a 4 to 1 ratio. You don’t overcome that with a spiffy presidential speech or couple years of PSAs. Nothing short of dire and severe consequences will get those 40 million to do the right thing. How much freer do you want to make free to get them to take it?
Thank you Charlie, exactly what I was trying to say. I at least want the freedom in life to be able to go work my ass off to get something I want or need. The rationing Margalit desires removes all freedom of self determination. Our forefathers didn’t die so a simple majority could vote ourselves into slavery and servitude, that the constitution is very clear about. Viva La Electoral College!!!!!!
Bob,
Your prose is eloquent. There are, however, internal inconsistencies in your comment.
There are unequivocal cases of futility. Knowing that a case is futile and aligning it with advanced directives empowers the healer to appropriately advise and recommend letting nature take its course and to shorten the needless suffering of the loved one. To state that “we physicians are unable to say with 1000% certainty that mom can’t possibly survive the hospitalization ….it is very unlikely, but not impossible” is a cop out. That is futility. If there is a living will directing this scenario, there would not be any basis to continue the full court press. That is the attending healer’s responsibility. More often than not, time constraints limit these conversations. As an aside, the less Medicare pays, the less likely these conversations will take place.
For those healers unwilling (or incapable) to acknowledge the limits of medical care, there should be remedial education in medical futility.
I cannot see this country ever accepting explicit global rationing imposed by an external force such as NICE. Rationing should be performed on an individual basis based on the patient’s medical circumstances by the provider, patient and family, and can be encouraged by the proper “incentives”, for lack of a nicer word. One idea for simplification of end of life care could be standardization of the living will (e.g. by having a checkbox type of form where explicit treatments are accepted or refused ahead of time by the signee), and by giving this will the force of law when the time comes. This would relieve the family of guilt and the provider of dealing with treatments which they know are 98% futile.
Cancer treatment is considerably more difficult. Many drugs which prolong life by only a few months are succeeded by modified ones which do better, and the history of oncology over time has been a very positive one. Progress can only be made in incremental steps. In addition, genomics is showing that treatment response rate varies by genetic profile and thus is not completely predictable individually.
I do not yet have an answer for this problem, but there has got to be a better way than our current system where profit is made by trying more and more therapies.
Last, I think our national dialysis policy needs to be revisited ASAP. The taxpayers paying for dialysis for a 90 year old man with Alzheimer’s disease is unjustifiable. Nephrologists have gone out and established dialysis centers which rake in millions. Here is one area where I think rationing could be explicitly defined.
What muddies the waters here somewhat is the compelling evidence of huge amounts of medical care provided largely for economic reasons (self referral, etc.). Eliminating that care harms no patients; it merely reduces excessive incomes of greedy docs. Marcia Angell made this argument a number of years ago in a NEJM editorial: let’s eliminate a lot of unnecessary and inappropriate care before we talk about rationing needed care.
Also, perhaps rather than prohibiting physicians from rendering care of debatable value or with weak evidence, why not ask patients to pay more of the cost (including your ICU patients’ families) for these services and initiate an honest discussion with their docs about the likely benefits?
If we do not revert to the system where ‘YOU GET WHAT YOU PAY FOR’ and you ‘GET WHAT YOU EARN’ with the ability to DONATE as we see fit, we are all doomed.
Giving away ‘FREE’ anything is a prescription for total disaster. Nothing is FREE. Nothing.
And if we make it free, then it will be madness. Special clinics will pop up for the wealthy, and the rest of the population will go to the VA. Ever been to the VA ?
Jay
Excellent post and discussion. Two comments. First, it may be a mistake to assume that anyone using the word “rationing” in this context is acting in good faith with regard to any kind of reform. Second, in my experience, UCSF, where Dr. Wachter practices, is doing something right. The key would seem to be a genuine and near instantaneous patient feedback loop, so actual dialogue takes place. This has something to do with institutional culture. Attitude. An intangible.
Jeff,
I think your last comment was right on target. Let’s first reduce the waste and inappropriate expenses, and there might be more than just providers’ greed.
I don’t think we’re at a point where we must legislate death. Not yet…..
Let me try to boil this down.
This is a sub-debate regarding who should suffer for the sake of healthcare, the rich or the poor. The conversation discussing whether the best solution is sourced from the Top Down or the Bottom Up is merely an opportunity to soapbox personal political agendas.
We would soon ALL discover that there is enough money to fund healthcare in this country if only we started debating the sources of waste and improper spending, but this is an impossible problem to fix…right??? Wrong, it is hard not impossible, and the process will step on the toes of the established and those protecting their political ideology. (“They” always struggle the most near the end).
To the others spending their thoughts on how money is being spent, thank you for continuing the conversation. We need more public discussions on the Quality of Life and our interpretations of death. Death is feared, and nothing sells like fear.
“Let’s first reduce the waste and inappropriate expenses,”
There is where liberal ideology always fails, this is why socialism and communism doesn’t work, and it is why governments always destroy that which they claim to protect.
Margalit, despite all your best intentions and what I am sure are the sincerest of desires you have no ability to make this happen. Just because you want something to be does not mean it will be, this is why your orthodoxy kills millions of people. You, Obama, Congress, no one has the ability to legislate the elimination of waste and inappropriate expenses. It has never happened in history and it will never happen as long as humans are human. The closest you can get is 100% free market and that is the EXACT opposite of what you propose. Waste and inappropriate expenses exist because Congress passed Medicare, because of HIPAA, ADA, and State Insurance regulation we have waste and inappropriate expenses. Passing laws in an attempt to regulate is agreeing to accept a perceived amount of waste and inefficiency for a desired amount of uniformity and predictability. The fact that politicians almost always underestimate waste and overestimate benefits is another issue.
As a clear example of what I am saying you need only look at catastrophic insurance. A high deductible, 50K deductible lets say, insurance policy can be purchased that has razor thin margins, carriers compete to the penny. You could not design or buy a more efficient policy; it is illegal to sell to consumers in almost all instances.
The consumer, supposedly through their representatives, have decided that these policies must have certain provisions, be guaranteed renewal, use community rating, etc etc. Every time you add a layer of regulation and requirements you increase the waste and inefficiency. I don’t think there is a more regulated segment of the economy out there then healthcare/insurance. That is why it is so full of waste and abuse. You don’t solve this by heaping more regulation and requirements on it.
Regulation is imposing one person’s desires or beliefs onto others, any time you do this you are going to have resentment manifested through waste, fraud, neglect, etc. The only way to limit these outcomes is when the parties are all representing their own goals and beliefs. That is why this country flourished for so many decades before the New Deal and our infection of L/S/C. Welfare, public housing, Medicare, SS all unsustainable failures because of waste and abuse.
Nate, explain why it’s OK for a doctor to own his own CT scanner, and just shovel patients into it, and bill all of us for it? Physicians who own their own scanners order 3-8x as many scans as physicians who don’t. Explain why it’s OK for a drug company to pay a doctor who is a heavy prescriber of their drug thousands of dollars a moth to give speeches to his colleagues to talk the drug up in his town, at drug company subsidized “educational” dinners? Explain why it’s OK for doctors who do research on drugs receiving huge grants from the same companies whose drugs they are studying, for the obvious purpose of influencing their findings (as happened recently at Emory)?
Explain why it’s OK for a company that makes artificial hips to pay hundreds of thousands of dollars to their best surgeon customers to keep them from switching to another manufacturer, and to prevent their local hospital from negotiating a better deal? (Recent consent decrees forbid this practice, but I’ll bet you the companies have found another way). Explain why it’s OK for a hospital to pay a doctor a bogus “director’s fee”- like $10 thousand a month- for moving all his admissions from a neighboring hospital to their hospital?
It used to be called “fee splitting”. Now, it’s an entire mini-industry. Reread the Atul Gawande article and tell me you think that type of behavior is appropriate, particularly given that we are running a $1.8 trillion budget deficit paying for it. . . .
It is exactly the same is you sending a corporate HR director to Las Vegas all expenses paid for giving you their TPA business, or sending an escort to their hotel room after a party. Conflict of interest is a huge issue in medicine, particularly given the lucrative fees earned from using high technology medical procedures. Medicare fraud and abuse laws are riddled with loopholes created by fancy lobbyists and $800 an hour lawyers. Reaganesque speeches about the evils of regulation such as your above comments are actually helping in perpetuating what is, in fact, theft from taxpayers and patients.
I’m no fan of government regulation, believe me. But the government does have an obligation, once it has confiscated our tax dollars, to make prudent use of them.
Jeff – Your wasting your time talking to Nate. In between his more coherent points that are grounded somewhat in facts, he will rant and rave about broad evils like “regulation” like any generic second-rate, right-wing pundit would do.
Nate,
I am afraid absolutizing creative powers of free market over its destructive ones is a bit farfetched. Let’s recall what the un-regulated market of credit derivatives did to our financial system and to the entire economy. Under pressure from major financial institutions, credit defaults swaps (CDS) were explicitly excluded from being considered either securities or insurance contracts. I don’t want to hijack this thread and push the discussion into “public” vs. “private”, I’m just making a point…
We are having this discussion about health care rationing because of health care costs. When that discussion becomes conflated with issues of social equity, the conversation becomes confused and ideologically polluted.
As many have said, let us take a look at how we can control health care costs that do not accrue any health benefit. There are so many that we should be prepared for the shock and awe of the resultant savings.
As for issues of social equity, we are born into this world unequal, and we will die in this world unequal. Those who are bemoaning the ability of “the rich” to value their QALYs at a higher level are pointing out a phenomenon that plays itself out in many theaters outside of direct health related cost-effectiveness analysis.
The rich have more control over their workdays, they take off when their children are ill, they may have large amounts of passive income, they face less stress due to uncertainty with work and finances, they buy what they want when they want it, they have access to personal trainers to motivate them, they tend to live in low pollution environments with less environmental contamination … and the list goes on.
In other words, in many different ways, the rich often extract higher health QALYs due to conveniences afforded by wealth. I’ve never heard anybody complain about this simple fact of life.
To suddenly fret that cost-effectiveness frameworks break down for the rich points out the obvious: cost-effectiveness frameworks are not meant for resources where there is effectively no resource limitation. If the rich want to pay for executive physicals that raise their QALYs at $10,000,000 per QALY, who are we to say no to this folly? We all should be allowed the freedom to make low value and even poor decisions.
“explain why it’s OK for a doctor to own his own CT scanner”
Jeff who said it was OK? The problem is you can not stop people from buying CT scanners and trying to use them. We need some and no one has the perfect ability to gauge the exact right number, who should own them, and who should get the test done. The failure came when the person receiving the CT scan was no longer the person paying for the CT Scan. That came about when Ted Kennedy passed the HMO Act of 1973 and moved us from a reimbursement type of insurance to pre-paid. Ted Kennedy thought he could regulate the payment and delivery of healthcare and failed miserably.
“Explain why it’s OK for a drug company to pay a doctor who is a heavy prescriber of their drug thousands of dollars a moth to give speeches”
Because our first amendment and our right to control our own labor allows for it. Again a person paying the bill would be wise to ask their doctor why they are suggesting Drug A and not much cheaper drug B.
Your failure comes because you have already accepted the confiscation of your tax dollars. As long as your tax dollars are gone you have lost, there will be waste and fraud. The only way to minimize waste is to not give up your tax dollars in the first place, that is my entire point. For how many years has government been regulating narcotics? Are we any closer to having them contained. We have regulated the financial markets for hundreds of years is the waste and fraud gone from there? Regulation gives people a false sense of security they are safe and don’t need to be as worried. Regulation at best does a poor job of stopping them from doing it again. It has never stopped them from doing it the first time.
MG I would welcome you to the debate but you apparently lack either the back bone or intelligence to join. If you want to comment why not try attacking an argument or statement? If you can’t argue on why regulation can be successful then my point must be better then generic and second rate, or your third rate and that’s why you can’t rebut any of it.
Alexander,
Derivatives where from unregulated. There are thousands of laws that applied to them in their inglorious glory. If these where in fact such risky unregulated instruments why in the world did anyone buy them and how did so many regulated entities get stuck with them? In our HIGHLY regulated financial markets there is a false assumption that everything is above board. How in the world does Madoff steal that many billions over that many years and no one suspect a thing? Regulation, what he did was illegal, the thought of him doing it was not possible. The extensive regulation actually allowed him to hide what he was doing. There was so many different points of regulation, waste, none knew what was going on.
By no means do I pretend to think if we had freer markets no one would ever be ripped off, people would not go uninsured, or bad things would happen. I am arguing though that if we had freer markets and people took responsibility for themselves we would have less waste, fewer people ripped off, and better aggregate results.
Lets take Medicare for example. This is how it was sold to the public;
“Senator Allen Ellender (D., La.) stated on the Senate floor that “many sons and daughters whose mothers and fathers are growing old are of the belief that under the pending bill they will be able to get the Government to take care of their older parents, in the event they become ill for long periods of time” (U.S. Cong. Rec.-Senate 9 July 1965: 16072).”
“Despite their limited coverage, the bills came to be known as “Medicare,” a term coined by a reporter to describe a previously established comprehensive health care program for military dependents. Many people therefore assumed that the bills before Congress would cover all forms of medical care, including outpatient physician fees and extended illnesses. When Rep. Albert Ullman (D., Ore.) cited allegations that the “public is somehow being hoodwinked” and “being misled” and asked HEW’s Wilbur Cohen about the degree to which the public misunderstood the program, Cohen stated that “we do recognize this problem and I think it has been complicated by the use of the term ‘medicare’ which is an erroneous term when applied to this program” (U.S. House Hearings 1965: 104). Although government officials sometimes expressed dismay about this public misimpression, the misinformation nonetheless fueled support for passage of a bill they strongly supported. “
What we got of course was a limited plan that only covered a minimial number of days in the hospital, no outpatient services etc.
Prior to all the regulation of Medicare;
Rep. Curtis questioned whether it was appropriate to “change the basic system” when 80 to 85 percent of the aged were able to take care of themselves under the existing system, recommending instead that we “direct our attention to the problems of the 15 percent, rather than this compulsory program that would cover everybody” (U.S. House Hearings 1963-64: 31, 392).
Where are we today? Far less then 80-85% of seniors are able to take care of themselves. Instead of addressing the need at the time, catastrophic coverage and assistance for the poor they over regulated the entire system and destroyed it. 3-4 generations of seniors would have been better off had Medicare never passed. The finances of the nation would have been considerably better off.
In the long term these regulations have done far more harm then good. Instead of the needed discussion on how we get government out of healthcare the left wants to hand it all over and regulate it more. This has no chance of succeeding.
MG,
I believe in the sanctity of the free market as much as I believe that the Constitution was chiseled in stone on a mountaintop and intended for strict interpretation in perpetuity without a temporal context. Jefferson never intended it this way either (reference: Jefferson Memorial inscriptions).
Having said that, I think it is unfair to characterize Nate’s posts as rants. There are very few clinicians of ANY political bent who would argue that our medical system wouldn’t benefit from a hefty dose of personal responsibility for one’s own health and consumption of those resources. At its core, this is Nate’s message.
Ultimately, I think Nate’s argument is simple and direct: much of our regulation and public financing has created market distortions, moral hazards, and unfunded mandates. All of these result in waste and inefficiency.
When I don’t pay my taxes, black helicopters land in my fields . . .
Ram, social equity is by definition part of the health care reform conversation. Otherwise why are we attempting to insure the uninsured? Surely, this will only add to health care costs.
If we have to ration health care somehow, it would stand to reason that the same social equity consideration should be applied. If social equity was not a consideration, I believe we could cut costs in a hurry. Pay-to-play and all Medicaid costs are “reduced”.
As to the inevitable “the rich have more of everything”, that is indeed a fact of life. I’m sure they can get better health care and they would continue to do so with or without QALYs. The thing we need to avoid, in my opinion, is legislating resources allocation based on wealth.
We all know that rich neighborhoods have better roads, better education, better fire departments and better police protection. However, nowhere do we write into law that the number of fire trucks should be proportional to the average per capita income of the residents.
I am not convinced that the scarcity of health care resources is so insurmountable that we need to resort to formal rationing beyond voluntary patient/provider/family discussions at the bedside.
I know Nate disagrees, but most of the practices enumerated by Jeff need to be terminated and there is good indication that the savings will be significant.
Some “markets” do need regulation or people will get hurt.
My spin on rationing is a positive one even though no sane politician will touch it-
- “every US citizen DESERVES as dignified and as pain free a death as is humanly possible”
SOMEDAY OUR NATION WILL GROW UP AROUND THIS ISSUE
Dr. Rick Lippin
Southampton,Pa
http://medicalcrises.blogspot.com
This is a wonderful discussion for us to be having. My only wish is that the President and members of Congress take to heart that cost containment means saying “no”, and that they allow this to occur as part of an informed dialogue between doctor and patient/family.
Yes, Dr. Lippin.
Every US citizen deserves the RIGHT to make that decision.
The government DOES NOT.
There is a confusion about the concept of rationing in health care. The typical cases that call out for rationing (when insurance pays for it) occur when a treatment costs a lot for (a) a small likelihood of an improved outcome, or (b) a high likelihood of a very small improvement in outcome, or (c) no clear evidence of an improved outcome, or (d) evidence of an improvement in the condition treated but also evidence that other things are made worse by it.
These are all cases in which there is a continuum of cost and benefit/harm and the point is to find an algorithm and a cutting off point to determine when the costs do not justify the benefits for a particular treatment in a particular type of patient.
So, Jeff’s comment that “let’s eliminate a lot of unnecessary and inappropriate care before we talk about rationing needed care” doesn’t really make sense. The whole point in most of these cases is to reject the idea that “need” is a bivalent variable. It isn’t that some treatment is needed or that it isn’t, but that statistically the benefit of the treatment falls on some point on a continuum relative to cost.
I’d also say as an aside that “need” is something felt by the individual, not a concept that should be used for policy analysis. Some people feel a “need” for experimental treatments in stage 4 pancreatic cancer, and others do not.
Charlie,
You say above regarding taxes, “this kind of confiscatory policy is ultimatly self-defeating. Citizens will hide their earnings – or simply stop working so hard.”
Why do you believe this? Norway, for example, has high taxes, hard workers, and very a high quality of life. “All Norwegian citizens and individuals working in Norway are automatically qualified for membership of the Norwegian National Insurance Scheme, a government insurance scheme entitling members to pensions (e.g. old age, survivors, disability) as well as benefits in connection with industrial accidents, accidents and illness, pregnancy, birth, single parent families and funerals.” <“>http://www.norway.org.uk/facts/living/insurance/insurance.htm> Norway publically posts individual income and taxes paid. I want to move to Norway!
Margarit, I have no idea what you were trying to say with your last post.
Rick Lippin: – “every US citizen DESERVES as dignified and as pain free a death as is humanly possible”
Margarit Gur-Arie: “Every US citizen deserves the RIGHT to make that decision. The government DOES NOT.”
Literally, you seem to be saying that the government does not have the right to make the decision for someone to have a dignified and pain free death irrespective of that person’s wishes. In other words, if they want to continue chemo they can, no matter what the odds of success.
First, no one is proposing that the government forbid people from pursuing vain efforts to extend their lives through expensive, untested means, or through expensive well-tested means that have proven to have a very low success rate. The proposal is only that government should not have to pay for it in some cases, or that private insurance should not have to pay for it.
Whether it is private insurance or government refusing to pay for certain treatments, the whole point is that I as a premium-payer or tax-payer should not be forced to pay for whatever idiotic and vain treatment you want. We have standards. Standards are already in effect all over medicine limiting what gets funded by insurance. Are you saying do away with those?
Or is it that you are OK with government (or private insurers) being able to deny paying for certain treatments on so-called clinical grounds only, but not when cost is factored into the assessment as well? Do you not realize that when treatments are denied reimbursement on clinical grounds there is often a chance they will work in a particular individual, given how little we know of individual genetic and phenotypic differences? Why is paternalism OK here? If it isn’t OK here, then how do we have any standards at all?
Finally, there is a competing right and responsibility you do not mention.
Don’t I have a right as someone who pays into the pool not to have my money wasted? In a democracy, I should have a say in how my money is spent. Also, those charged with administering the money for care have a responsibility to waste as little as possible, and that will mean prioritizing between expensive treatments based on measured outcomes.
Nate,
just a quick comment on your post, again to avoid distracting everyone else from the main topic of the thread. There is a difference between having no meaningful regulations (the derivatives market), and applying them when they do exist (Bernard Madoff). How 150 years in prison compare to AIG bonuses?
jd, what I meant to say is that the government should not have the right to decide that a treatment, which is clinically proven to be successful in prolonging life, is to be denied to a particular individual based on some QALY measure that says that his/her life is not worth as much as another patient, therefore the money is not well spent.
This all goes back to Peter Singer’s article in the NYT, suggesting that a disabled person’s year of life is somehow less worthy than that of a non disabled person based on some peculiar measurement of quality of life. Same would apply to chronically ill and more.
I am having issues with the method of quantifying quality of life as proposed in that article and with the notion that the government would somehow end up in a position of deciding who lives another year and who dies today.
I don’t think life can be, or should be, evaluated that way and I am petrified of the consequences of embarking on the long road of human life valuation based on disability or other factors.
All that said, of course I agree with the fact that unproven, redundant and sometimes harmful treatments should not be paid for. I think that is the same thing Jeff was saying.
Rationing, on the other hand, refers to something that is beneficial, but scarcity of resources dictates that some will have to go without. The question is who are those “some”.
My question is why not eliminate those unnecessary costs first. I don’t believe we need to start rationing beneficial treatments just yet.
As to Dr. Lippin’s remark, I believe every person should have the right to a dignified and painless death and I think that they should have the right to also decide how and when that should occur and I also think that physicians should be allowed to be there for their patients all the way to the end. But it must be, it just must be, the patient’s own decision.
Bev MD writes:
> The taxpayers paying for dialysis for a 90 year old
> man with Alzheimer’s disease is unjustifiable.
Bev — why the qualifier “with Alzheimer’s disease”? Where does this come from? Why should presence or absence of other disabilities enter into the medical decision? How about something like this: “The purposes of medicine are to cure disease, heal injury, and mitigate suffering. The man’s kidneys are failing from complications of advanced age. Dialysis won’t reverse this failure. He is not a transplant candidate due to advanced age. He should therefore not be dialyzed”.
t
>”let’s eliminate a lot of unnecessary and inappropriate care before we talk about rationing needed care” doesn’t really make sense. The whole point in most of these cases is to reject the idea that “need” is a bivalent variable. It isn’t that some .treatment is needed or that it isn’t, but that>statistically the benefit of the treatment falls on some point on a continuum relative to cost. ———————–
jd,
I think this is an important point. A lot of talk among those supporting current reform proposals sidesteps the rationing issue with the claim that all the money we need to save can come from the “low hanging fruit” of unnecessary care. No necessary care need be eliminated!
How wonderful. Of course everyone is for necessary care, especially when we apparently can afford it all if we just passed health care reform. What’s not to like?
The inevitable cost/benefit analysis you point out will come later, of course.
One man’s low hanging fruit is another man’s hope for a cure.
“Otherwise why are we attempting to insure the uninsured?”
Sorry Margalit but we aren’t. Those wishing to take over the money involved in healthcare are telling you that so you will support them but no one is talking about covering the uninsured. If this was really about covering the uninsured, there are only 5 million that can’t afford insurance; we could have done that 10 years ago for pennies.
Since 1906 when the left first proposed nationalizing healthcare it has NEVER been about healthcare, it always has been and always will be about the power.
Tom;
You bring up an interesting question, and I get your drift. Yes, I am making a value judgment by adding the Alzheimer’s disease. I recently saw a previous neighbor for the first time in many years who is 92 years old, exceptionally fit, plays tennis 3x a week, contributes to his community, etc. Would I as a taxpayer refuse to dialyze him for the reasons you mentioned? Probably not – but then, he would probably reject it anyway because he values his quality of life. When I was in medical school (too many years ago), I used to think this dialysis thing should be cut off at 80 – but now there are healthy 90 year olds. Where does it stop??!!
Actually, I wonder why the taxpayers are forced to pay for everyone’s dialysis at all – they don’t pay for the ventricular-assisted devices in patients awaiting heart transplant, for instance. This must have been a political decision – and therefore, I am in the most uncomfortable position of partially agreeing with Nate!!
Sorry, it should have read “ventricular-assist” devices in my previous comment. Nate will be proofreading. (:
bev M.D., other than agreeing with Nate, which is not all that bad really
, the thought process you describe regarding the 92 year old active person is exactly how it should be. It’s up to him and up to you to make that decision. I don’t see why any third party should have a say in this and after paying taxes and premiums for all those years, his dialysis, if he chooses to receive it, should be covered.
pcb, you are correct. That was a “slip of the pen” so to speak. Substitute “clinically proven to be beneficial” for “needed”.
Your use of Stalin is unintentionally appropriate.
“Rationing” seems so necessary, but it contains an erroneous presumption (!).
The presumption is that such choices should be made by the system or some knowledgeable entity, due to costs.
This is an error. It violates the old standby idea of individuals placing value. We can’t accurately choose the value of something for someone else. Remember this idea? It’s an old standby in why individuals should be free to choose for themselves, to maximize utility, etc.
So…in the situation where the Public Insurer has to choose whether to cover a chancy and expensive proceedure….the Public Insurer should *not* choose!
Instead, to control costs, do as in the 3rd method of cost inflation control here:
http://findingourdream.blogspot.com/2009/07/reforms-to-control-health-care-cost.html