Tuesday, April 23, 2013

The slow work of healing

I just finished reading "Tattoos on the Heart" by Gregory Boyle. I came to it partly via Krista Tippett's conversation with him last summer at the Chautauqua Institute, and partly through other sources. It is a far-ranging account of his work over the last 20 years with the members of toughest Latino gangs in LA through his non-profit Homeboy Industries. The book is suffused with love for these societal outcasts and peppered with wisdom, some in the Christian and some in other traditions, including secular.

What does a book like this have to do with healthcare? Well, a lot. There are many points that might help rehumanize clinical medicine. But this passage on page 179 really made me stop in my tracks:
Funders sometimes say, "We don't fund efforts; we fund outcomes." We all hear this and think how sensible, practical, realistic, hard-nosed, and clear-eyed it is. But maybe Jesus doesn't know why we are nodding so vigorously. Without wanting to, we sometimes allow our preference for the poor to morph into a preference for the well-behaved and the most likely to succeed, even if you get better outcomes when you work with those folks. If success is our engine, we sidestep the difficult and belligerent and eventually abandon "the slow work of God."
Now, I am not Christian or even particularly religious. I am, however, a fan of the Jesus persona who merged with the poor and the hungry and the downtrodden, who became the change he wanted to see. And I had to re-read this paragraph several times, particularly the last sentence. Is this not exactly what we are seeing in medicine? We have told ourselves a lie that by chasing only those outcomes that are quantifiable we are pursuing only that which is important. But wasn't it Einstein who said that not everything that counts can be counted, and not everything that can be counted counts?

Is this gaming of the system that Father Boyle talks about in the paragraph above not exactly what we are seeing as the end-result of the perversion of the idea of evidence-based medicine? What if we change a few of the words in the above paragraph (and stick to secular language)? Will it fit what is happening in medicine today?
Payors Funders sometimes say, "We don't fund efforts; we fund outcomes." We all hear this and think how sensible, practical, realistic, hard-nosed, and clear-eyed it is. But maybe Jesus doesn't know why we are nodding so vigorously. Without wanting to, we sometimes allow our preference to help the sick for the poor to morph into a preference to take care of for the well-behaved and the most likely to succeed, even if you get better outcomes when you work with those folks. If success is our engine, we sidestep the difficult and belligerent and sickest and eventually abandon "the slow work of healing God."
I don't have the answers to how to solve our fiscal and quality crises in medicine. Well, I do, but they involve a cultural overhaul of the entire US of A. But this paragraph sure is making me think.

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Friday, March 15, 2013

The New York Times, aspirin and melanoma, oh my!

One of the reasons my blogging has fallen off lately is because I hate sounding like a broken record. Yet here I am again calling this time the New York Times Well blog on its reporting of, yes, you guessed it, another cancer study.

The story this time is about a paper coming out of the humongous Women's Health Initiative study that examines the relationship between aspirin and melanoma development, hypothesizing that aspirin may help prevent this skin cancer. The paper was published in the journal Cancer and is, of course, behind a paywall. And the abstract, as always, tells me very little.

So I did a little guessing and left this comment on the blog:
So, an absolute risk reduction would have been a much more helpful number to cite, and because the full paper is behind a paywall I cannot get that number. But I can do a little educated estimating:
There were 548 incident melanomas among 59,806 women, amounting to a 0.9% risk of developing this cancer over 12 years. Let's just call it 1%, shall we? Understanding that this 1% is a hybrid of the risk with and the risk without aspirin, the baseline risk must be a little bit higher. Let's give aspirin a huge break and assign the risk without it to the entire group -- let's call it 1.25% over 12 years. Reducing this 1.25% risk by 21% relatively give us roughly 1% risk of melanoma in 12 years in this age group. So, really we are going from 1.25% to 1% risk by using aspirin. This means that 400 women need to take aspirin regularly to avoid 1 case of melanoma (if we believe that this relationship is causal). Mind you, we are not talking about death from melanoma, but just a diagnosis of melanoma. And let's remember that early melanomas are just excised without further treatment. 
Now, among these 400 women daily aspirin can be expected to cause roughly 1 major bleeding event per year. So, over 12 years there would be up to 12 major bleeds. All to save 1 person from a melanoma diagnosis. Why not report the full story?
We'll see if it gets accepted. And by the way the aspirin and bleeding numbers came from a recent large study published in JAMA and covered here at Forbes.

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Thursday, March 14, 2013

Healing medicine's moral injuries and spiritual violations

This, from the On Being blog:
Dr. Shay has his own name for the thing the clinical definition of PTSD leaves out. He calls it “moral injury” — and the term is catching on with both the VA and the Department of Defense.
[...] 

“Whether it breaks the bone or not,” he says, “that wound is the uncomplicated — or primary — injury. That doesn’t kill the soldier; what kills him are the complications — infection or hemorrhage.”

Post-traumatic stress disorder, Dr. Shay explains, is the primary injury, the “uncomplicated injury.” Moral injury is the infection; it’s the hemorrhaging.
And a parallel quote from Abe Verghese's The Tennis Partner:
It's important that you realize that every illness, whether a broken bone, or a bad pneumonia, comes with a spiritual violation that parallels the physical ailment.
As I was commenting on the Facebook page of On Being, I started to think about our constant pursuit of precision medicine, which just misleads us into a delusion of certainty, and how far we have drifted from the humanistic goals of medicine -- healing the soul along with the body.

Yesterday I listened to a podcast of Krista Tippett's conversation with Natalie Batalha, an astronomer who discovered the first rock planet outside of our solar system. Dr. Batalha, the ultimate scientist, reminded me that poetry and imagination are essential ingredients of science. She said something like "I am the universe looking at myself through the eyes of this sentient being." This is poetry and spirituality, and every component of this statement is grounded in scientific fact.

The science of medicine needs to regain its soul. It can do this only through the admission of our great uncertainties at the intersection of the "uncomplicated injury" and "moral injury." And even more than admit, we need to embrace and revel in these uncertainties -- this is where poetry and imagination reside. If we fail to do this, we risk compounding this "spiritual violation" instead of easing it. I know this isn't anywhere in the PPACA, and it is not a quality metric that anyone will monitor so as to reward/punish. And it's uncharted territory to boot. Yet this is precisely what is needed to heal medicine.

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Tuesday, September 18, 2012

ACOG's dysmenorrhea FAQs: Evidence of propaganda?

I have been looking up information on endometriosis for a friend of mine, and came upon this from the American College of Obstetricians and Gynecologists:

So I bit and started reading. And about half way through my reading it I realized that this really reminds me of how they taught literature in the my native USSR. The teaching consisted of stock interpretations of the great authors' works through the prism of Communist Party propaganda. In this interpretation all of the writers' messages railed against the monarchy, and all exhortations were for the purpose of freeing the proletariat. No teacher ever dared to disagree, and no student was expected to question.

Why, you ask, do these ACOG FAQs on dysmenorrhea remind me of my schooling in the old country? Well, glad you asked. Check out this gem, for example:
That's it. No follow-up questions? Good!

But really let's take it from the top. So, OK, there is the pelvic exam. I can deal with that because I am used to that as the default for anything going on "down there." Then there is the ultrasounds exam. I guess I can deal with that too because there has been so much in the news about pelvic ultrasound, and that seems to be what is done to get a better look at what is down there. A laparoscopy? Wait, isn't that a surgical procedure? Yeah, they even say it's a surgery, and it's done to get a "look inside the pelvic region." Hmmm, this sounds pretty serious. How come they don't say anything here, in these FAQs, about what they are looking for, how good this surgery is at finding it, what the chances that what they find is responsible for my dysmenorrhea, what is the treatment and how successful it is at alleviating my symptoms of dysmenorrhea, and whether or not there are alternative interventions?

(Does anyone really ask the patients what their FAQs are or are they generated by the clinicians based on what they think should be important to the patient? Or even worse, based on what they think they can give a perfunctory answer to? Just from reading these Qs and As I think it's the latter.)

You get my point. This formulation of information is beyond useless. It seems paternalistic in its "there there, dear, we will take care of everything" attitude. Perhaps I am out of touch. Perhaps women, patients in general, don't want to go beyond what their doctor tells them to do. But I happen to think that it is these FAQs that are out of touch. Granted, I am a "difficult" patient, as even a pelvic exam, let alone ultrasound and surgery, meets with questions around the evidence of its effectiveness. But even if you have only completed ePatient 101, you should know enough to ask about something as serious as a laparoscopy! How can anyone be expected to just acquiesce and, sighing, say "yes, I guess I have to have surgery." This "FAQ" is completely absurd in its willful lack of useful information. And if you read the rest of the document, you will find many places where this is true as well.

I know that some of you will read this and click away saying "oh, there she goes again." But I think you need to rethink your apathy. After all, there are well over 200,000 deaths (and possibly even more than 400,000) annually in the US that happen unnecessarily just from contact with our "healthcare" system. If you can avoid the avoidable, is it not incumbent upon you to be fully informed? You may think that all these recommendations are evidence-based, and there is not a whole lot of wiggle room in how to proceed. Well you are wrong if you think so, since the evidence, even when it is available, is rarely, if ever, unequivocal. And furthermore, in medicine no benefit comes without a risk. Are you sure you want your doctor to make these decisions for you? How is it that people who are not even willing to take wardrobe advice from their mothers wade so enthusiastically into these high-risk medical adventures with their eyes and ears closed?

I wrote Between the Lines to show just how imprecise and uncertain the science of clinical medicine is. But beyond that, I wanted to provide you with tools at least to ask the right questions. So, please, go and ask. And insist that you be included in the FAQ processes. Otherwise, we are just wasting terabytes on propaganda.            

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Friday, September 7, 2012

What does $750 billion in wasted spending look like?

Here is an infographic (I know) from the Institute of Medicine who just released this report. According to it, we are wasting $750 billion annually in unnecessary healthcare costs, and here is the breakdown. Note the ~$250 billion on overdiagnosis and overtreatment. Now,what are we going to do about it?




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Tuesday, August 14, 2012

BTL reader question: How do you get to 2%?

I have started a FAQ page on the BTL book web site here, and I will cross-post the discussion here on the blog. This will give us an opportunity to have a more interactive discussion, if necessary, with additional comments and questions.

Here is the inaugural installment.

On August 13, 2012, this question came in via Twitter:




Well, here is the answer (and thank you for the question, Tia!)

First the problem. At the bottom of page 74 and going on to the top of page 75 I discuss the question posed in a 1978 New England Journal of Medicine paper by Casscells and colleagues to 60 physicians and physicians-in-training at Harvard Medical School. The problem went like this:
 
"If a test to detect a disease whose prevalence is 1/1000 has a false positive rate of 5 per cent, what is the chance that a person found to have a positive result actually has the disease, assuming that you know nothing about the person's symptoms or signs?"

The question clearly mimics a disease screening situation. The answer is simple yet elusive. Let us assume that 1,000 people are tested. Among them only 1 person has the actual disease. However, given that the false positive rate is 5%, we also know that out of the 1,000 people tested, 50 will have a false positive test. Assuming that the single person with the disease also has a positive test, we can expect 51 people to test positive. But since only 1 out of these 51 people with a positive test has the disease, the answer to the question above is 1/51=2%. This is a pretty shocking realization, given that a large plurality of the Harvard doctors and trainees chose 95% as their answer. 

So, be careful not to let your intuition override the data when making medical decisions!


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Wednesday, July 25, 2012

Medicine as the trolley problem

Are you familiar with the trolley problem? It is an ethics dilemma first formulated by the great Philippa Foot as a part of a series of such dilemmas. Her formulation goes roughly like this. Imagine there is a tram hurtling down a track. If it keeps going straight, it will hit and kill 5 people who are working on that track. The conductor is able to throw a switch and divert the train to another part of the track, where 1 single worker will be killed by the trolley. The question is what should the conductor do? Most people when asked respond that yes, he should throw the switch and sacrifice 1 life to save 5. After all, the net benefit is n=4.

There are literally thousands of alternative formulations of this problem, but one of them from the philosopher Judith Jarvis Thomson merits special consideration. The problem starts out similarly, with 5 lives on a track in potential peril. The vantage point and the solution are quite different, though. Now there is a bridge over the rail track, and a very large man is looking at the tracks from the bridge. One way to stop the train is to throw a heavy object in its path, like this large man, for example. You are on the bridge standing behind the man. Would you be justified in pushing him off the bridge in front of the tram to meet his death in order to spare the 5 workers down the tracks? Most people when faced with this formulation say an emphatic "no." This is somehow puzzling, since the net benefit is the same, n=4, as in the original Foot formulation.

Philosophy professors have puzzled over this difference for decades, and there are several potential explanations for why we respond differently to the two scenarios. One explanation has to do with the proximity of the operator (conductor in the first case and the person doing the pushing in the second) to the sacrificial lamb -- in the first case one is enough removed from the action of killing by merely redirecting the tram, whereas in the second the action is, well, more active, and the operator is actually pushing an innocent person to his death.

Though in some ways the scenarios seem to bear no practical distinction from one another, we see the morals and ethics of each differently. This difference in the view point is instructive to the field of medicine, where it has implications to how policy relates to the individual patient encounter. Here is what I mean.

Suppose you are a policy maker, and you recommend that every woman at age 40 start to receive an annual screening mammogram to reduce deaths from breast cancer. At the population level, if we screen 1,000 women for about 30 years, we will save approximately 8 of them from a breast cancer death. (Yes, it's 8, not 80, and not 800). At the same time, among these 1,000 women, there will be over 2,000 false alarms, and over 150 of these will result in an unnecessary biopsy. Some of these biopsies will incur further complications, though currently we  do not seem to have the data to quantify this risk. But what if even one of these biopsies were to lead to death of or another dire lasting complication in a woman who turned out not to have cancer? And by the way the accounting is not all that different when applying the new USPSTF mammography screening recommendations. Well, then we have the trolley problem, don't we? We are potentially sacrificing 1 individual to save 8. And who does the sacrificing is where the variations of the trolley problem come in.

Payers levy financial penalties on primary care physicians when they fail to comply with screening recommendations in their patient panels. The payer certainly sees this issue as the original formulation of the problem: Why not throw this financial switch to achieve net life savings? But for a clinician who deals with the individual patient this may be akin to pushing her over the bridge toward a potentially fatal event. Because we don't have a crystal ball, we cannot say which woman will die or incur a terrible complication. But the same population data that tell us about benefits must also give us pause when reflecting on the risks. Add the ubiquitous uncertainty (and lack of data) into this equation, and the implications are even more shocking. So, while making policy recommendations based on population data is sensible, policing uniform application of these recommendations to individual patients is fraught: of course, clinicians and patients need to be cautious about making individual decisions even when in population data benefits outweigh risks.

On the surface risk-benefit equations for many interventions may appear favorable, leading to blanket policy recommendations to employ them on everyone who qualifies. In the office, the clinician, caught in a tug of war between mountains of new literature and the ever-shrinking appointment times, is hard-pressed to take the time to consider these recommendations in the context of the individual patient. And furthermore, financial incentives from payers act as a short-hand justification, a "nudge," for doing as recommended rather than for giving it thought. So, who must look out for the patient's interest? The patient, that's who. Who understands the patient's attitude toward the risks and the benefits? The patient, that's who. Who now has to be responsible for making the ultimate informed decision about which track to stand on? The patient, that's who.

For me the trolley problem gives clarity to the reservations that I walk around with every day. I have done a lot of soul searching about why it is that, even if the benefits seem to outweigh the risks, I am still more often than not skeptical about whether a particular intervention is right for me. And since every intervention in medicine has a real risk, though mostly quite low, of going terribly awry, my skepticism is justified. This is my approach to evaluating these risks and benefits, based on my values and my understanding of the data as it is today.

What's the answer to this ethical conundrum in medicine? I cannot see that policy makers will stop throwing the switch in the near future, and so as a society we will be forced to accept the tram's collateral damage. And while this may make sense in an area such as vaccination, where thousands of lives can be saved by sacrificing a very few by throwing the switch, in most everyday less clear-cut medical decisions the answer is less clear-cut. Will doctors rebel against being forced to throw some patients on the tracks in order to save some marginally larger number of others? I don't think that they have the time or the energy or the incentive to do this, since the framing of the switch-throwing is through the rhetoric of "evidence." Right or wrong, doctors are shackled by the stigma of ignorance that comes with not following evidence-based guidelines, and this may act to perpetuate blind compliance. This leaves the patients, for some of whom the right thing will be just to get themselves off the tracks altogether, far away from the hurtling trolley until its brakes are fixed.                        

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