This is a response to "In reporting symptoms, do patients know best?", a piece in the New York Times April 13, 2010.
Note: Of course, I don't even discuss the fact that "symptoms", as opposed to "signs" are by definition the subjective experiences of the patients, regardless what factual or biomedical basis they have.
My comments
The two most egregious incidents I can recall were these. (1) my wife and I, after several years of being very healthy, got Swine Flu shots in 1976. We both got violently ill, but when we reported this to the doctor, his reply was "That's never been reported as an effect, it must be a coincidence." We asked, then, was he going to report our case? No, of course not, because... it's not a reported effect.
Once, my wife, a field biologist and excellent observer, went to see the doctor of the day at our health system, and reported that "this is what I experience..." and described her symptoms. The doctor's dismissive response was "No you don't."
That said, and anecdotes aside, solid data show that doctors report an abysmally low fraction of diseases they are required by law to report, so it's not too surprising that they report few of ones they are not required to report.
The reasons, as described in so many posts are many, ranging from abusive arrogance to lack of motivation to a rational decision not to do something that detracts from time with the next patient, etc. Some are good reasons, some not so good.
The kernel of truth that matters is that doctors in the US "health" system, by and large, are simply not a good detection mechanism for mindful detection and reporting of issues that seem minor locally, but statistically, in an broad overview, have serious public health consequences. It's not one's "fault", it's how that "system" functions, and will continue to function.
Drug companies have little motivation to encourage a change in the system. Hospitals are not motivated to detect downstream problems in patients that have been treated and released.
All of this presents a very serious risk, not only to individual patients, but to the length of time it takes "Homeland Security" to detect a silent attack with biomedical consequences. While DHS is spending billions of dollars, literally, to create high-tech biosensors to put on rooftops in all major cities, they are spending, um, zero? dollars on figuring out how to simply ASK people to report unexpected conditions into some national database, bypassing hospitals, doctors, etc., and figuring out how to make sense of the result flood of noisy data, including those who intentionally try to "game the system" or use it to create its own panic.
Still, if you want to know what safety issues are with doctors in hospitals, it would make sense to simply ask the nurses. You think they don't know?
Similarly, if you really want to know that the actual side-effects are of medications and procedures, ask the patients. Individual anecdotes will appear as variable as UFO reports, but collectively, patterns will emerge to solid statistical analysis that will find problems long, long before they are found by our current "don't ask, don't tell" patient safety "system".
A basic principle of scientific cosmology is that "we are not special." In other words, Earth is not at the center of the universe, man (or woman) is not the greatest creation of God (er ... of nature), etc.
While the first premise, about Earth's location, has achieved wide acceptance, the second premise has lagged behind, even in the most scientific of circles.
I perceive in the justifiable rational reflexive rejection of "religion" and of an infinite, omnipotent God a tad too much of convenient and unjustified rejection as well of a much more finite and not necessarily powerful or wise level of consciousness and life above that of individual human beings. This must be addressed and fixed if rationality is to achieve its potential.
The arguments against doing so strike me more as "we wouldn't give those idiots an inch of pleasure or encouragement" than anything else. By basic scientific cosmology, the assumption must be that there ARE life forms "higher" (in any and every sense) than humans and humanity, and the burden of proof on anyone who wishes to assert, instead, that "Humans are the greatest accepted creation of ... er... humans."
This subject is timely, because for the first time there is a growing and incontrovertible evidence that humans are not the fragmented, discrete, separated pieces our rationality and medicine and justice systems have assumed, rising above the unmentionable and inconvenient "body" as well as the body of the unclean "others", but that we are instead connected in powerful ways to each other's moods, health, and mental models, among other things.
This would, by a purely rational science, call into question our definitions of "life" and "beings" and consider such entities as "corporations" or "cultures" as potentially living beings of their own, were it not for a huge but mostly invisible bias against acceptance of their being "higher" forms that we are embedded within. The resistance strikes me as irrational but similar to the resistance at Pasteur's time to believing that our "body" had within it millions of "other organisms" that were not "us". it challenges our implicit world view of being unitary, self-contained, self-sufficient, and "whole".
Now we find instead, whether in social intelligence or behavior of bacteria, that group cohesive behavior is the norm, that human "decisions" and "actions" are almost entirely predictable based on the social context in which they are made, etc. We are way, WAY more akin to "slime mold" than billiard balls in that regard. Inconveniently akin. Emotionally frighteningly akin. Unacceptably akin.
Unacceptably to what? To the egoistic conceit that humans are the greatest life form that exists in this immediate location in space and time. That, even though, our cells are alive and happy (I presume) to find their life within and amid a much larger life form (namely US), that SURELY symmetry is broken here, at this apex of existence, and we are not, in turn, small parts of a much larger life form, such as Gaia, or a corporation, or a culture.
Yet, if you look in any biology textbook, a corporation or culture satisfies every condition ascribed to something that is "alive."
This, to me is the frontier, the unspeakable horror that rational scientists must face, that, despite our best efforts, white males are not the supreme beings of the universe.
Forget carrying that principle forward additional scales in space and time, for now, and just let's all focus on this stage. IS a corporation "alive" and "conscious"? IS a culture, or a, gasp, "religion" "alive" and "conscious", in the same sense (but not necessarily the same way) that humans are conscious at a level above and beyond yet encompassing the lives of their constituent cells. ?
Why is THAT not the core questions of the search for life in the universe? This is my challenge to Science, to explain why this is not more central to good scientific research.
Or is it pure ego, and envy, and anxiety that religions might, in fact, despite having the details wrong, have the big picture right?
If rational scientists were to discover that each galaxy in the universe was, in fact "alive" and "conscious", would they be ecstatic or somehow saddened by the news?
And, to be fair, would the average religious person be in new awe at the scope of life and the universe, or would they also be saddened by the news, and possible explanation of the phenomena that their collective social intelligence had dimly perceived and attempted to give shape and form to?
Isn't that interesting? Perhaps Science and Religion have more in common than either side of the family feud would care to admit, lest they make up and join hands in exploring the universe that is, not the one that they wish would be.