A case of ... what?

Recently I was staying with relatives, which gave me the chance to read the New York Times in print. It felt old-timey. I chanced upon an article in Lisa Sanders's Cases series, whose tropes can be summarized as follows:

1. Woman faints.

2. The doctors can't figure out what's wrong with her.

3. Bad Doctor says it's all in her head:

A neurologist in New York carefully examined her and her now thick chart and pronounced definitively that there was nothing wrong with her and that she should try to relax and maybe take up yoga.

4. Good Doctor notices a few key features and makes the diagnosis:

Ledereich watched as the patient calmly sat up. “I know what you’ve got!” he told her excitedly. Her sudden collapse looked as if a switch had been thrown and all her muscles just turned off. Ledereich realized that although it looked like syncope, it wasn’t; she hadn’t actually lost consciousness. What she probably had, Ledereich told her, was something called cataplexy, and that meant that she also had narcolepsy.

So far so good. But the treatment didn't cure the attacks:

But for reasons that neither the patient nor her doctors understand, after about six weeks, [the fainting spells] returned. At first, just occasionally. Then almost daily.

Thereafter she is left to do (more or less) what the Bad Doctor suggested: integrate her new diagnosis into her life.

The patient has learned to cope with her unusual condition; she no longer drives. And when she feels the warning signs, she tries to alert those around her to tell them not to worry. She’s part of a small community, andby now, most know her well enough not to call 911.

There are implications left unexplored here. First: that diagnoses can be partially but not entirely therapeutic. As Up To Date says about cataplexy, "these symptoms are often improved by medications." Often, but not always.

Second, that so much hinges on how the diagnosis is conveyed. Bad Doctor indicated that the woman affected with cataplexy "should just relax" - an abrupt and unhelpful direction, but not, for all that, unfounded. There is a connection between anxiety and cataplexy (and other sleep disorders) remarked upon in the literature.

Finally, a question is left unanswered (and unasked) at the end of the piece. What does the patient know that she has? Does she identify with her diagnosis of cataplexy in a way in which she wouldn't identify with a diagnosis of anxiety or other psychiatric disorder? Does the partial failure of GBH to treat her cataplexy at all detract from her trust/confidence in the diagnosis? In short, what does the patient think of all this?

Evidence based medicine: pragmatic, objective, or authoritarian?

In the spring issue of Perspectives in Biology and Medicine, Maya Goldenberg dissects the contradictions of evidence-based medicine (EBM). (I found the article through philpapers.org, which I didn't know about before.) On the one hand, EBM's commitments to pragmatism

are readily apparent in EBM’s clear allegiance to experimental methods of inquiry that set aside past habitual thinking in favor of purely empirical investigation. Indeed, EBM’s promise of “the application of the best research evidence to medical decision-making” (EBMWG 1992) could have been achieved by strictly pragmatic scientific methodology.

On the other hand, EBM lays claim to the marble statuary of objectivism, which is problematic.

[The] objectivist ontology,where the evidence “speaks” and reliable knowledge follows, presents an occupational hazard to (actual) medical practice. Subjective content muddies up even the most rigorous evidence-based practice by the inescapable layers of interpretation and sociocultural influence that enter in the setting of research agendas (including what projects get funded and why), the production of evidence in primary research, and the selection of which evidence is chosen to inform policy and practice.

But EBM's hierarchy of evidence, with the randomized controlled trial (RCT) at the top, rests on shaky grounds itself:

From a pragmatist perspective, the problem is not so much that the gold standard status is tenuous, but that the RCT’s placement of at the top of the hierarchy is so insistently maintained. It is largely in the interest of avoiding dogmatic theoretical commitments that pragmatists endorse a bottom-up approach to theory construction, where localized beliefs must pass the test of experience in order to be elevated to generalizable knowledge claims.There are numerous experimental scenarios in health research where the RCT would not be the methodology of choice,which suggests that the hierarchy of evidence would not pass the rigors of the bottom-up approach to theory building.

EBM's certainty in its own objectivism leads to a blindness: "[t]he hierarchy of evidence is the point at which evidence-based methodology can be charged with authoritarianism." There are some juicy accusations in this article, which I didn't know before, about the financial relationship between EBM "producers" and the editorial boards of certain journals, e.g., BMJ.

However, in her conclusions, Goldenberg is fittingly pragmatic:

In the interest of better science, I propose that EBM’s pragmatic features are worth keeping. By this, I mean that the open-ended critical inquiry should be encouraged, as should comparative clinical research and problem-specific methodology (which may include uncontrolled methods and even reliance on clinical judgment).The rigid hierarchy of evidence, as we have seen, leads to considerable problems for EBM and should be dismantled.The EBM critics,writing from the post-positivist philosophy of science tradition, have amply demonstrated these problems. But the constructive project of revisioning or perhaps recasting the evidence-based approach to medicine requires that the worthwhile aspects of EBM not be discarded along with its flawed features.

Dr. Faust, meet Dr. Dewey: constructing a philosophy of medicine for the 21st century

Ultimately, because of vast historical and social forces, physicians by and large remain oriented towards an unattainable and inappropriate positivist ideal, and thereby severely compromise the deeper values of their own moral agenda. This choice—encouraged by the professionalization process—largely explains why medical ethics serves such a minor role in medical education; why complaints of medicine’s dehumanization are rampant; and why myriad studies, surveys, and testimonies attest to the lack of physician empathy. Indeed, if medicine aspires to an objective ideal at the expense of its unique value-laden agenda, the profession will be hounded by complaints that it has forsaken its ancient calling for a Faustian pact.

A self-conscious moral epistemology—an epistemology that remains aware of its ongoing negotiation of competing values and construction of its interpretative knowledge—provides a philosophy of medicine for the doctor’s diverse roles and activities. On this view, a philosophy for medicine must acknowledge the multidimensional character of medical thinking that utilizes values spanning the ideals of laboratory science to the empathetic response of humane care. But more, this philosophy must recognize a fundamental difference between the scientist’s search for the real and the physician’s pursuit of the therapeutic.

Medicine requires more than “true” outcomes (as in scientific truth-seeking); physicians embrace “best” results for the care of their patients. While seeking the “true,” patients and their caregivers are often satisfied with something else (for example, the effective intervention may be a sham treatment or a placebo). “Truth” directs clinical science, and clinical science directs itself to good outcomes, but in the hierarchy of medicine’s philosophy, it is ethics of care that directs the physician’s science and ultimately determines clinical choices.

--Alfred I. Tauber, Medicine and the Call for a Moral Epistemology, Part II: Constructing a Synthesis of Values. Perspectives in Biology & Medicine Summer 2008; 51(3).

Saving a life - according to the doctors

A conversation in the bikur cholim room:

"Doctor, if a man had chest pain, can he walk home for two hours [on Shabbos]?"

"It depends what kind of pain."

"The doctors said it wasn't heart pain. Can he walk home? I don't think it's safe to walk home. The rabbi said he could take a car home."

From this conversation (which went on for some time) I learned a number of things. One of them was that the guy in question (who got to ride back to Borough Park on late Friday night via car service - I wonder if he got dropped off a couple of blocks from home?) has 11 kids in his house. No wonder he's having chest pain.

The other was that the Satmar rebbe (the recently deceased one? one or more of his quarreling heirs?) apparently was of the opinion that presenting to the hospital with chest pain was enough of a sofek pikuach nefesh to make riding in a car on the Shabbat permissible.

This raises all sorts of questions, predominant among which (as usual) is whether this opinion as relayed to me by Some Random Satmar Guy is faithfully rendered at all. Maybe the Satmar rebbe (or various present-day quarreling rebbes) holds nothing of the sort. If that's the case, never mind.

However, let's assume that the above rendering is true. Then two questions: (a) is a doctor the right person to ask for the definition of sofek pikuach nefesh? (b) if a doctor is the right person to ask, how would she judge?

A doctor might not be the right person to ask because one might hold (I don't, but one might) that halachic categories are to be determined by halachic authorities. Just as pikuach nefesh has a halachic cutoff (several, actually, but "a dangerously ill person" being the most prominent among them), so does sofek pikuach nefesh. The problem is that while there are intricate discussions about the precise definition and interpretation of safek sfeika, the issue of sofek itself is something I'm not aware of any conclusive opinions about. Is doubt probabilistic, intuitive, psychological?Thus even the strict constructionists - which I am not - who believe in immutable and exactly specified halachic categories would have great difficulty specifying a sofek pikuach nefesh, let alone a pikuach nefesh, without the help of health workers.  

The question is, how are we to translate halachic categories into medical ones? There are sick people who look terribly ill to the layperson but a doctor knows (or is said to know!) that these people will get better. The converse is true. 

Then it is not rabbis alone to whom we need to have recourse in the definition of sofek pikuach nefesh (as I write this I more and more realize that pikuach nefesh itself has the same definitional complexities), but health care professionals (most often doctors) together with rabbis. 

I don't think doctors can make the definitions; that's for halachah to work out with their help. But doctors do need to figure out some way to translate their thoughts into lay-cum-halachic language. And that is difficult, for epistemologic, not just lexical reasons.

In the next post I consider how a doctor might answer the question, "Will I die with this chest pain, doctor?" In the interim, though, consider the possibility that the doctor is not the right person after all, but the community. 

An example of this position is found in an interesting article by a Rabbi M. M. Farbshtein (I don't know if I'm transliterating his name correctly) in the journal Assia (my translation):

[T]he question up to what level of possibility [doubt, sofek] something is considered sofek pikuach nefesh does not have an objective answer, but rather [is according to] the assessment of the community that the activity was done for the sake of saving a life [pikuach nefesh]. The situation in which such an activity is required is considered to be "sofek pikuach nefesh."

The question then becomes: what community are we talking about, and how does it decide?

That's too big for now. We'll return to the doctors in the next post. What does "risk of death" mean for a doctor contemplating a patient with chest pain?

What do you know and when do you know it?

Doctors and patients think differently. One way to understand this difference is to ask the question: how do doctors and patients know? If we try to understand our own ways of knowledge (epistemology), how our patients might know, and how the two differ, this might be productive for our practice of medicine and our patients' health.

See my poster on the topic. When you're done looking, check out the thought-provoking companion exercises. Lastly, make yourself a cup of tea (Lapsang Souchong), sit down, take a minute, and write down your epistemology on a piece of paper. Please e-mail that epistemology to me; I'd like to start a database of such statements-of-epistemology. So far I have an N
of ... 1.

Bits of work, or: Passover primary-care cleaning

Yesterday I taught a class to (better: had a discussion with) my colleagues in the Primary Care program about risk perception.

Today I gave a presentation about some ongoing research: (to what extent) do patients and the medical chart differently report the doctors' reason for their hospital admission?

You can attend the talk too!

Medical epistemology
Or: why doctors and patients think so differently.

I gave a talk yesterday on this topic at NYU's primary care residency program. The outline (together with a bibliography) is here. More later if interest.