Category: Bioethics

“Any moral dispute is already situated in the needs of the people.”

My notes for Glenn’s lecture are all over the place, quite literally. I’ve got several pages nearly sheer purple for the effort to squeeze every thought, both his and my own, down. I’m not entirely certain how coherent I’m going to be able to make this… We’re talking pragmatism and constructivism today, and the differences between the two. I think Glenn wanted to get much further into what pragmatism is, but we keep being held up by the LIM students and their unfamiliarity with most philosophical terms.

Anyhow, pragmatism! From Hegel and company, names I never thought I’d be happy to encounter! Still, it’s home, even if it’s a home I never particularly wanted to have, and thus, comfort. So if I’m understanding Glenn correctly, he’s saying that the arguments around constructivism, especially when misreading Nussbaum’s misreading of Hellenistic experiential relationships, are formed around pragmatic means. Which, of course, leads back to money, which is what our NICU attending was focusing on during the visit yesterday.

Constructivism is a way of talking about the realities we construct to function, regardless of the Lacanian notion of The Real. You have the populist, which is the expansion of psychiatric disease, often referred to as the Worried Well, but also the broader idea that this, the medicalization of society, is okay. We then have the rich and contextual model, which is comprised of three models we didn’t really have a chance to discuss, as the class got itself thoroughly stuck on the populist model of care, and trying to — well, I’m really not sure what they were trying to do. We again come back to LIM students not, it seems, having the necessary background to understand the philosophical concepts being discussed, and holding up the class because they want to argue something that is an established field of concept (I don’t think a class on pragmatism, for example, is necessarily the place to argue the validity of either pragmatisim or constructivism.) These three models, however, function to produce health in relation to the experience of the ill, to look at whether or not the issue is medical, and the expansion of health and disease as a product of the recognition that our technology (tools) can save human suffering. (Of course, you must commit to the first two premises of the rich and contextual model for this to be true.) I wonder how we construct (heh) a proper form of this?

It occurs to me at this point that Nussbaum is not taking on Descartes, but is instead agreeing to a ghost in the machine conception of mind and body — mind deciding about body, rather than mind and body working holistically.

So, we eventually get off the populist model and quickly through the rich and contextual constructivist point of view, which allows up to wind up wth Zaher’s pragmatic ven-diagram of being, which moves away from a constructivist view to a more social model. The thing that interests me is that I think Glenn is using a very wrong, or at least very limited, model here. The ven-diagram, as was so exceedingly highlighted by the multiple questions and comments the class had about it, is confusing and, in my mind, limited. If Glenn really is trying to root phenomenologists and pragmatists together via a misreading of Nussbaum, why not go the distance and move to a pure autopoietic system? It is Merleau-Ponty’s tree,

When through the water’s thickness I see the tiling at the bottom of a pool, I do not see is despite the water and the reflections there, I see it through them and because of them. If there were no distortions, no ripples of sunlight, if it were without this flesh that I saw the geometry of the tiles, then I would cease to see it as it is and where it is — which is to say, beyond any identical, specific place. I cannot say that the water itself — the aqeous power, the syrupy and shimmering element — is in space; all this is not somewhere else, either, but it is not in the pool. It inhabits it, it materializes itself there, yet it is not contained there; and if I raise my eyes toward the screen of cypresses where the web of reflections is playing, I cannot gainsay the fact that the water visits it, too, or at least sends into it, upon it, its active and living essence.

That is to say, it is only because of the water we see both reflection of the tree and the tile below. Without that water, we would see tile, but not tree. (Windows are another great example: we must have the window to see the tree outside.) What is this to say, then, in relation to Zaher’s ven-diagram? Simply that Glenn, via Zaher, was trying to illustrate the connectivity that exists between us all — this same connectivity that Merleau-Ponty is speaking of, and more neatly can be wrapped into an autopoietic system, a system that continually creates itself. Nesting Russian dolls, we live within systems upon systems.

If we see the ven-diagram like this, an onion-like, layers upon layers of consideration:
(graphic missing because I’m lazy)

We can see an autopoietic system to look more like this, circles within circles:
(graphic missing because I’m too damned lazy)

Circular systems with systems inside, each potentially touching the other systems they’re with, as well as those outside them. It’s the classic functional model of a cell, as described by and expanded to social cultural models, by Maturana and Varela.

Anyhow, I’ve probably gone on further tangent than I should even consider, given that we’re not in philosophy, we’re in bioethics. But I’m certainly going to need to sit down with Glenn and talk about this stuff, not to mention argue the difference between autonomy and autonomous! Should be fun.

Sitting in the cafeteria is an interesting experience. Attendings and residents mix with patients and the still obviously nervous interns; the intern nervously asks for permission to do a procedure and gets the okay, while only two feet away a doc asks how a woman in a wheelchair and on a drip is doing, and obviously delighted to see her eating. Pocketed here and there are the numerous support staff that are necessary for the hospital to run, and sitting in the middle of this swirl of talk and activity, I sit and watch.

There has been an emphasis on bioethicists as mediators, listeners, but also watchers. People in the background, looming quiet but a promise that should there be a need, they’ll step in. To wear my geek-hat for a moment, sort of like the Organians in the original Star Trek. Keeping the peace. Negotiating borders and boundaries between the Klingons and the Romulans and the ever-expanding Federation. The lightbulb-heads. They were a better constant threat than Q ever was for The Next Generation; or at least more beneficent.

But the question, asked nearly 30 years ago, remains valid: who watches the watchers?

~*~

Lying in bed right now. I borrowed a book from the AMBI conference room on my way home today, along with the last issue of AJOB. I was planning on catching up on AJOB, then review the Dax literature I have before tomorrow’s lectures by Dax (something I’m still amazed by), but have instead been reading John Lantos’s book The Lazarus Effect, the aforementioned borrowed book. I like reading books like this; the “true crime” novels of medicine, I guess. They remind me of why it is I want to do what I want to do (convoluted sentence), and keep my humanity grounded. And the subject, the NICU and theories of agency and life and death, seemed fitting with my NICU visit today.

I was quite impressed with the AMC NICU. Dr. Harndon (whose name I’m probably spelling wrong) was more than willing to answer any questions we had, and to let us get very up close in looking at both the infants and the equipment. I feel quite privileged to have been able to spend as much time as we did with him. NICU has certainly advanced, technologically, since the last time I was in one, and there were quite a few wee ones in there. Which, of course, brings about its own questions and concerns. The big one, of course, is how young is too young to save — something that Lantos is addressing in this book. At what point do we decide that the life is too hard, too little a life, or not a life at all, just a biological machine running on autopilot? And who has the right to make that decision? We see, at St. Margaret’s, the volume of children and young adults in these depleted if not completely absent states, some no more than biological machines, and yet they’re nurtured and cared for and kept alive for — what? Do we truly place that much value on life, that it has to occur at all cost? (And if we do, why do we show such hypocritical behaviour with the death penalty?)

A friend of mine when I was much younger was a preemie. She was tiny, and always would be tiny. Born two months early, in the early 1980s, she had remarkably little damage from being a preemie. But, like I said, she was tiny — short and petite. Her bones were fragile, and she had some minor neurological issues; suffered from seizures, if I recall correctly. She was a happy person, and lived a largely full life. Couldn’t drive because of the neurological issues, but otherwise was fine. And, as her parents would tell us, lucky. They’d had a preemie before her who hadn’t lived.

I wonder how much of our current attitude towards premature infants is because, of all things, Xavier Roberts, the Cabbage Patch Kids, and that particular line of dolls: the preemies. Dolls that were wee, that you had to take special care of. I wonder what sort of subtle psychological effect it would have, to play with dolls called preemies when you’re a kid, and then go to have a premature infant as an adult — do you link the two together in your mind, and push cuteness and delicate, doll-like features first, and ignore medical ramifications of being born very early?

~*~

A little later now. I was comfortably reading, cats at my side, nodding off in that warm haze that comes when you’re tucked in and ready for a day to end, when my winding down mind drifted to UW, and I realized with a start that only comes in that half-sleeping stage that I couldn’t instinctively trace, mentally, my route to Padelford B103 — the CHID office. It actually took a moment to recreate the steps past Mary Gates, under the arch connecting the Allen Library to Suzzallo, across the top of the HUB lawn, curving around Communications before crossing the street into the comfortable maze of PDL. Panic, sheer and sudden — what was wrong with my brain? In bed, had I had a stroke?

The weather is cool, right now, and a light breeze is blowing in my window, and across my skin. Cats, bed, light, breeze — everything constructed in such a way that my closed eyes and befuddled brain didn’t remember, for that fear-causing moment, that I was no longer in my Seattle apartment, tucked on the Hill and just out of noise of the nightlife. Sleepiness robbed me of the memory that it’s been three months since I walked that path, smelled the particular tarragon-sage scent of the bushes or dodged bold squirrels.

I sat alone at lunch today, tucked into the corner of the AMBI front office. I had to talk with Lisa, to schedule a meeting, and then stayed to use the wireless network; Sheila and someone had been in the conference room. It was around 10am Pacific, and I was able to talk, via AIM, with several friends I’ve not spoken to in real-time since I moved. Although my sister has lived in Philly for seven years now, it never really occurred to me how different the time difference is. I wake up when many of my night-owl friends are just getting to sleep; I’m home before they’ve finished lunch, I’m in bed before they get home from work. Keeping in touch is not as easy as I had hoped.

So I sat alone, and on my computer — not working away hard, as Bob had thought, on something important for the ProSeminar, but something important for my own sense of self and wellbeing: catching up with someone who means a lot to me, someone I’ve not been able to talk to. One of my closest friends, and someone I do miss.

I mentioned last week that homesickness had not kicked in, except perhaps for CHID. Today, it sunk in the rest of the way. I’ve been on edge all day, and near tears. Not for any reason related to NICU — I’ve been there before, and it was nothing too new or surprising; if anything, the babies were healthier than I was expecting. But because I’m tired, I’m exhausted, I’ve had little break. My house is an unpacked mess, I can’t find anything, I can’t even eat at home — I’ve not had a home-cooked meal since July 27th, and I haven’t cooked for myself since June 5th. I’m frustrated with people, I want to say things I know I shouldn’t, and I’m starting to behave irrationally. And the underlining emphasis of that is that I want to sit down, in a dark corner, and cry and cry, until I can’t anymore. And this, Bob, is the big difference between knowing people here in Albany, and knowing people in Seattle — in Seattle, the moment I felt that need to cry, I would have been able to find one of several close friends, via some contact medium, and talked out what is bothering me.

In Albany, it took nearly seven hours and the forgetfulness of sleep to realize I don’t instinctively remember the steps to a dance I made for 2.5 years, and that for all my wishes otherwise, Seattle is becoming nothing but a memory.

This morning we’re starting out with Bob Baker and the Hippocratic Oath. Again, on the oath, but from a different perspective this time, which should be interesting to hear. My education has largely conformed to what Bob Veatch taught the prior week, which I suppose makes sense when you consider who my teachers were. Stepping outside that lineage for a differing point of view is very CHID, and should be educational, at the very least, if not also entertaining.

Baker is talking about why we should still pay attention to the Hippocratic Oath, and why the history of medical ethics is important; which I’m not sure I understood Bob Veatch to say was not important, last week, but he gave us a lot of information, so I might have missed it. Or simply discounted it; as a history person (albeit a weird one), the idea of discounting the history of anything seems asinine and rather ludicrous; history provides both the narrative for our lives, as well as creates a Nietzschean genealogy that we construct ourselves from. (It’s times like these I wish my entire library was unpacked and sorted properly — wasn’t it Deleuze who gave us the more current reading of Nietzschean genealogy, illustrating the never-ending, never-beginning stories our lives are pieced from?)

Anyhow, Juanna’s book is coming up today, of course — this is the book Shapiro recommended I read, and I never got around to. It’s interesting that they’re going back to Eidelstein’s Oath, as I actually rejected using in my thesis, instead opting for Francis Adams’ version of the Oath. They are almost identical, but there are a couple of key differences, the sorts of differences that come up when you’re doing lit crit and interpreting individual words, as well as the words paired up and their meaning. This comes up with Larry having us read through the Oath, as well — something that quite tickles me, since Jon Moreno and I got into it last year, over how many people had read the Oath and how many versions. It was sort of sad that in a conference room full of people, he, Shapiro and I were the only ones who’d read it, let alone read several copies of it. For that reason alone, I’m glad that we’re covering it — even if it seems that we’re covering it in depth. I will prove Moreno wrong! (Even if it’s slowly and over a succession of years.)

So, Baker is saying that Bob Veatch wanted to discard the Hippocratic Oath and start over with something else, and that part of his tactic of doing so is to link Hippocrates to Aesclepeus, a religious cult pre-dating the Hippocratics. The supposed argument is that religion and religious cults should be written off, therefore so should the Hippocratic Oath. This doesn’t work for me, primarily because the first time I ever encountered the link between the Aesclepians and Hippocratics was in a comparative religions class, and something that stayed rather constant during all my time in the field. Quite obviously, the most evident link would be the caduceus, a twined snake around a staff. Snakes were the sacred symbol of Aesclepeus, able to heal and harm, depending on how they were used. Not only snakes, but twined snakes — the same twining snakes we see in our modern medical sigil.

Because I think genealogy is so important, that the narratives and history we encounter matters, I don’t think writing off the connection between these two groups as wishful thinking on the part of someone who’d like to go “bah, religion” (which I’m not terribly convinced of, either) is necessarily valid. It seems to me that it’s instructive to look at the origins of the Hippocratic Oath in conjunction and connection with Aesclepeus, and how the cult did what Karen Armstrong argues all successful religious offspring have done: co-opt some important pieces of the religion, but change it to your own needs. We can of course see the caduceus as co-opting, a way of taking legitimacy with them, while expanding broadly upon the Aesclepeans. For example, there was a general prohibition against touching patients, especially women, at that time. Yet now we know that touch in and of itself is incredibly therapeutic, and something that the Hippocratics did.

Philosophically and historically, I also have issue with the concept that Hippocratic medicine is successful because it endured. I don’t think endurance works well as an argument; it seems more like a conclusion constructed out of desire to support the Oath, rather than historically mandated. For, how long does something have to “endure” to be successful and working? Slavery existed until 100-odd years ago; it endured for longer than the Oath. Does this mean slavery worked? Galenic medicine was the norm for hundreds upon hundreds of years; it’s only been the last few centuries that we move away from it, and really took the advent of modern medicine (specifically concepts of cleanliness and antibiotics) to create a big change in how we practice medicine. Does this mean Galenic medicine was successful and should be kept around because it endured so long? I don’t think so — change, progress happens.

In this case, I think that’s exactly what happened — change happened. It’s not that medicine found itself screwed up and wrong in the 1970s, so much as medicine changed. Suddenly medicine, in a very, very short period of time (especially when you put it on the timeline of humans) changed rapidly and dramatically. We went, in a few short years, from being able to do nothing to being able to prescribe antibiotics to God Squading people and their lives. Medicine desperately needed help negotiating the new terrain of technology, because technology rapidly got ahead of medicine — and the Hippocratic Oath. It’s not a screw-up of medicine; it’s the confluence of medicine, technology and a culture that suddenly valued freedom and independence above all else. Things that medicine was not equipped to deal with; and like any doctor when faced with something s/he is not trained in, medicine did the only thing it could: it referred to outside help.

I do agree that it’s necessary to familiarize yourself with history, know your genealogy, and what is influencing the narrative you construct. I just don’t think that necessarily means holding on to the Oath; I think Bob Veatch still has it right, and while we should keep the baby, the bathwater has got to go.

~*~

Larry McCullough is, in no uncertain terms, a Texas gentleman. That is, he’s charming, funny, and has very sharp teeth. I found myself taking copious notes about the Texas act that I’ve to present on later this week, but otherwise simply listening to him talk and crack jokes. It was a nice downtime, and a chance to simply have the words wash over and rest upon me. I did find his conversion about Gregory particularly interesting when he loops both Bacon and Hume into it. Gregory uses Bacon because that’s the closest there is to an underlying concept of medicine (which doesn’t exist at the time — George Ingel being a bit away yet). Gregory defends the dignity of medicine because it was under attack, being ridiculed. And he did this using Hume’s idea of engaged concern and sympathy; this notion of experiential pain might very well be one of the earliest examples of an actual, engaged action of affect. Unfortunately, I don’t have a net connection at the moment; I’d love to do a quick Google and confirm my memory of Hume, through the Scots, having light exposure to Spinoza. This could be an interesting direction to trace the Anglicized notions of affect through, a sort of sideways and decidedly not postmodern history. Which, you know, if I can step away from Deleuze for a while, I’m all for it. Well, for that matter, do we even need to go through Hume for the Scottish influence? Gregory himself was in Edinburgh during the Scottish Enlightenment, which is about when Spinoza was brought over. Interesting — although I suppose this space is not the appropriate one for chasing my preoccupation with Spinozan affect.

Anyhow, McCullough is simply talking about early evidence-based medicine, and the virtues of giving attention to the patient as well as providing care and candor. Doing this, and conforming your practice to standards of evidence — of being a professional, in a way Glenn would probably approve the use of (since he did ask us to think about what a professional is) — is good medicine.

~*~

It’s towards the end of the day, now, for Liva’s lecture, which is a shame. I’m hurting, pretty badly, and having to ration out my medications. I can’t see anyone here until September, so I’ve to very carefully control my pain medication. Unfortunately, this means pain towards the end of the day, which significantly impacts my interest in anything at all. Add to that empiricism never being my forte, and it’s hard to concentrate. I prefer “pure” research, if you will — read and dream research. So far, this is reminding me of the last conference I presented at, on my thesis, where the psych students all asked me, after my presentation, what my research was. Where were my numbers? What was my p value? Where were my controls?

Sorry, can’t control Spinoza…

I’m finding it hard to keep up with the constant shifts, too, between whether or not we should or should not be considering law. I feel like, if we’re just looking at ethics, we get the law thrown at us (terrifically confusing for me, too, since I’m from states with radically different laws), and if we consider the law, we’re told to think in pure ethical terms. I feel like there’s got to be some signal, some switchsign, that I’m missing.

I’m tired and ready for today to be over.

It’s been a long week. I was supposed to go out this weekend with some people I’ve recently met, but opted instead to spend most of the day at Borders, using the wireless connection and trying to find my roots. Trying to laugh.

I know it’s cliché, but wow — people are different back here. I’ve always thought that the idea of the abrasive, confrontational New Yorker was, well, fiction. Something that might have been a relic from an earlier time, taken by writers and comedians and ran with. I would be wrong in that assumption. I fit the West Coast — laid back, relaxed, not terribly concerned with protocol. Although I think I’ve surfed maybe three times in my life, I feel like the out of place surfer moved somewhere strange and landlocked, sticking out like a sore thumb, wanting to go back where everything is familiar. Where I know the rules of the game, how it’s played, how to play it.

But I’m stuck here, in this confrontational and blunt world, and going to instead suck it up and work on my CV, and try to focus on the bright points of the prior week. I just wish they weren’t so much like lightning bugs, fleeting and impossible to hold for long.

Sue’s lecture today comes at a timely period, when we begin to discuss the idea of testing pharmaceuticals on captured populations, quite literally: prison populations. Of course, AJOB itself, in its most recent issue, has an article discussing equipoise in research, and the idea of testing on indigenous populations being ethical because it would do them good to get at least the established, beneficial drug. I’ll spare you my thoughts on that AJOB article’s argument at the moment, and instead focus back on what Sue talked about, which was drug trials, and specifically (of course) Nazi experimentation.

Of course everyone knows that the results of the Nazi experimentation was the trial of 25 Nazi personnel, and the establishment of the Nuremburg Code — a code that, somewhat ironically, was first adopted in the United States by the US military (I believe the Navy first, although they were so quickly in succession of one another it really doesn’t matter, unless you’re a military brat looking for bragging rights).

The interesting question behind Nuremburg is the idea of the trial itself. What standards do you use to try someone for something that you recognize is a crime, yet there are no laws or regulations explicating the crime? How do you go about a fair trial without imposing one culture’s standards on another, yet not going the way of moral relativity, either?

Of course, on top of that, with the Nazi’s you have the question of what to do with the entire German medical population, as well as the data culled from the experiments the Nazi’s conducted. Some people adamantly want the data locked away and never seen, while others think that some good should come from the horror — both opinions held by actual survivors of the experimenters.

On the side of how to you judge, I don’t fall into Kant’s ideals of a universal morality, so I think you’ve to be careful about imposing others cultural standards on a culture that is not their own. So, I suppose I think that Rawls offers us the easiest out, in his veil of ignorance. I’m sure it’s an inaccurate perception, but I do feel like that gives us at least a slightly more neutral answer.

What to do with the doctors? Well, post-WW2, we regulated and watched Japan’s military — seems that regulating and watching Germany’s medical professions is the equal answer. Simply run oversight until you’re convinced they can do it on their own, when a generation not participating in the war has been raised. Is that too simplistic? It feels as thought it must be.

So far as what to do with the Nazi data… I have always fallen in the camp that something useful should be done with the data. That it should be clearly acknowledged where the data came from, the horror of the methodology (if you opt to be so generous as to call it methodology), but the value that can be extracted for fellow man. Don’t let the pain and suffering go to waste! I realize, though, that this is a controversial view, and as I’ve gotten older, and perhaps more enmeshed in the bioethical field, see the other point of view as well.

~*~*~*~

I took a break during Sue’s lecture today to use the restroom. Instead of returning to the classroom, I sat on a window ledge and leaned back into the sun. The temperature was finally near perfect — cool, but the warmth of the rays of sunlight bathing me, taking the knife-edge off the chill.

I watched a large, white cloud, fluffy and cottony, breeze slowly across the impossibly blue sky, the green of the tree leaves outside the window standing in stark, rich contrast against the yellow-y orange brick of the building across from me.

Tension melted under the light, and there was just this moment of rich synergy and rightness with the world. A week later, and when I have the chance to quietly reflect on, not necessarily the class, but the opportunity being given to me, I remain in complete awe.