Life as an Extreme Sport

Dax [August 16]

“No doctor is skilled enough to treat a man without his consent.”

This is an amazing experience. I’m not sure how else to categorize it. And for me, it’s intensely personal, as well. Pain management was nearly non-existent when Dax was injured, and has come forward leaps and bounds since the 1970s. And it is in large part through the activism of Dax and people like him that this has happened; awareness has increased to the point that those of us who suffer debilitating pain can receive the treatment we need, and can live relatively normal lives. I can’t imagine being asked to endure what Dax did, even for a day, and yet not only did he do it, but he emerged from it strong enough to continue arguing for the benefit of others.

I wondered in my last entry if Dax still felt the way he did the last time I’d read anything; that he still wished the doctors would have allowed him to die. After all, he has a successful life, a legal practice, a wife, friends. It took seven years for him to regain a quality of life he thought was worth living for, and that was simply too high a price to pay.

I can’t say I blame him. Sulfamonolode and wet to dry bandages aren’t used any more, considered too barbaric. And no wonder! A topical antiseptic across raw wounds that felt like pouring alcohol on or allowing bandages to dry and adhere to the wound to yank it off again. Debridement in a tank full of chlorox and water doesn’t sound fun, either; I wonder if they still use that? My one experience on a burn ward, during my pre-med days, there was actually a severely burned boy there; about 75% 3rd degree burns from a frat party gone wrong. He, at least, was being kept sedated and under wet wraps and this sort of…goop, for lack of better word, was covering his open wounds. Last I’d heard, he’d made a decent recovery.

Listening to what Dax had to go through, I am struck by the thought that, so often, what is done in medicine is not done with the best interest of the patient in mind. It’s done with the best interest of the health care professionals in mind, or the lawyers, or the hospital itself — but not the patient. The patient is simply there to endure whatever is being done to him or her, and even in this day and age there is so often no choice in what’s being done — being dismissed AMA is much harder than people make it sound like it is.

It also strikes me that Dax simply was not given the opportunity to communicate. Communication has been a recurrent theme this course, and this case is a consummate illustration of miscommunication.

Interestingly, Dax doesn’t think autonomy is a one-way street. He does feel that it’s two way, and that doc’s do not have a right to force treatment, just as patients don’t have the right to force doctors to perform procedures they don’t believe in. While, when I’m arguing for autonomy, I often find myself making similar argument, things like the controversy over the Plan B pill make me hesitate to throw my lot full in. If a woman desperately needs an abortion for, say, medical reasons, but the only person with any training for 100 miles has opted to no longer perform abortions, who is right? Whose autonomy reigns supreme? Autonomy might be a two-way street, but it’s still one where head-on collisions can and so often do occur. We really have got to move beyond autonomy as an answer; there is simply too much, too many situations, where it is not feasible, where it does not solve conflict.

He who controls the knowledge has power, and because of this Dax rather adamantly believes that doctors should not be the only ones with authority to perform certain procedures; they should not, in fact, control the knowledge. (And around here I’ve got scribbled in the margin that he has an excellent understanding of JS Mill, although of course I didn’t write down precisely what prompted that note.) It was, however, around here that Dax told his feeding tube story, and the joy in his voice as he talks about this, to this day, is amazing — and it’s because he had control.

Control is often an important issue for patients. They are in a situation without knowledge, where their body is out of their control, with doc’s operating on esoteric knowledge that, informed consent dreams aside, no patient can hope to immediately understand. As patient, you begin fighting for whatever you can control, in these situations — even if it is a small and simple thing. Not eating. Not having a feeding tube inserted.

As a person, then, in a place of both power and negotiating ability, it must be exceedingly important to remember to cede as much control as possible to the party who feels they are without (which, I would wager, is the patient the majority of the time).

The entire Dax case brings me back to wondering if informed consent is truly possible, and the old saw of whether or not you can truly give consent without having a medical degree? These days, especially, it seems like many doctors will just throw every possible amount of information and option at you, and leave you to figure out what to do — often with the aide of the ever-unreliable internet. I’m hearing more and more arguments against the idea, and that it’s simply a cop-out for doctors; I don’t know if I would go this far, but I do think it’s the sign of a litigious society that it’s such a major issue. Well, and I wonder if we shouldn’t coach it in terms of informed consent so much as proper information for consent.

I’m thankful I was able to thank Dax in person; as I’ve said, he’s someone who, stranger to me, has had a huge impact in the quality of my own life. I’m also glad I was able to clear up the misconception that I was Colleen; rather unpleasant to be confused for her, although given I was sitting behind her I understand why. But since I actually agree with most of what Dax says, and find myself squabbling over minutiae and splitting hairs (well, I’d argue that discussions of autonomy aren’t minutiae, but I will conceded that they are highly esoteric and not important to the everyday person), it was good to not have the association of “person with RSD” and “handicapped person” together.

Unfortunately, there are not a lot of answers in Dax’s presentation, as there are not in his case. The questions of autonomy, consent, and medical knowledge — they are still as much up in the air now as they ever were. Perhaps the difference is simply that they are indeed out in the air, being discussed and thought about, instead of not questioned at all.

The End [August 17-18]

Unfortunately, at this point in the week my pain issue kicked up to the point that I have few notes. Dr. Thompson, the intensivist, was exceedingly kind to us, in both our excessive questioning and tour of MICU/SICU. His offer to share his recent book was also kind, and something I plan on taking him up on.

The extreme cold in our classroom chased me away from AMC shortly later, and I went home to nap. Against my better judgment, I did join everyone for dinner — and am glad that I did. Sitting with Alicia, Glenn, and Sean at dinner was an amazing treat, and a lot of fun. It reawakened a bit of the passion that I was starting to miss, under bad sleep, stress, and pain. Unfortunately, it took its effect on me, and I spent the night with pain keeping me up, Lunesta be damned. When I did finally wake Friday morning, my right arm, shoulder to wrist, was locked firm against my body, and any attempt to move sent shattering, lightning pain through my body.

I was able to eventually get it under control, with judicious use of hot water and pain medication, and made it to campus barely in time for our presentation, which went as badly as I thought it would. I’ve kept most of my thoughts about the LIM students to myself, as well as project preparation, but I was exceedingly frustrated with the students I had to work with. They had no concept of time, no idea how to manage their presentation, and wouldn’t shorten what they had for anything; when I shortened their slides, they simply put them back in, or talked as though the slides were there anyhow. You simply cannot read 10 slides in 2 minutes, I don’t care how fast you speak. So of course, the end result was that both Peter and I had to shorten, or fully stop, what we were saying.

The audience critique of the presentation felt rough, too. Having Larry there was not easy, and I didn’t like feeling responsible for the misunderstandings of my team members — especially when they were misunderstandings that we’d argued over for nearly two weeks, and they simply would not listen.

Of course, when you’re in pain, everything is blue and cranky, which is definitely where I am right now. I’m sure, in a few days or weeks, when I’m back under proper pain management, I’ll have much fonder memories of the whole thing!

The Stillness of Morning [August 16]

I’ve always found something magical at hospitals during the break of morning. There is a stillness, a limit of movement, the sparse and necessary only. Silence reigns, punctuated only by the passing of clogs or the squeak of wheels. Voices are low, the cheesy music has run of the speaker system, and the hushed hospital seems to be waiting for the burst of activity precipitated by the morning staff. It resembles nothing more strongly than the piercing GLOSS of the gloaming. I love it — I’ve always loved it, from all my time in hospitals, as patient, as visitor, as student. There are not many things I will get up at 5am for, and this is one of them.

We get to listen to, if not meet, Dax Cowart today. When I finish my breakfast, I’m going to head over to the library and do some refreshing — I couldn’t find Jecker and Jonsen’s textbook with it as case example last night, the curses of not being unpacked. Still, details of the case will probably stay with me as long as my memory lasts. Dr.’s Jecker and Dudzinski both used this case in their courses, as well as the video “Please Let Me Die” that Sue opted not to show us last week. I remember that, with Dr. Jecker’s course, it was a class required of medical students, and most took it in their last year. One of the things that stuck with me was their reactions to the video; I didn’t know quite as much about medicine then, and I knew that if it was something that the to-be doc’s were shocked over, it was definitely an appropriate (as opposed to squeamish) response from me.

I’m really interested to hear what he has to say to us. I know he went on to get his law degree; what I wonder is what Lantos mentioned in his book, that I came across last night: people who survive the ICU most often say they would go through the experience again, even though they felt like they were being tortured. In fact, I should have brought the book, instead of leaving it on my bed, so I could reference the study he quoted, and ask Dax that with specifics and citations, should he not mention it himself. Is he grateful to be alive, blind and impaired, or would he have rather died? He suffered so greatly; I can’t even begin to imagine. Even at the depths of my despair and inability to move or get out of bed, shrieking pain raging through my body, I’m not sure a serious wish to die crossed my mind. Of course, maybe that’s part of Lantos’s point: I don’t recall it, but I know the people who cared for me do. Endorphins at that level are mysterious beasties, full of magical erasing power…

A group of medical students just walked in. Clumped together in an uncertain herd, starched and gleaming white coats, without any stains, standing out compared to the doc’s scattered here and there in the dining hall. They’re trying so hard not to make eye contact with anyone in scrubs or dingy grey long coats, and in return the people in the worn coats and rumpled scrubs are giving them long, knowing looks, and occasional kind smiles.

I don’t remember when I first realized that coat length could actually mean something, or how to spot the difference between a medical student and a resident, or what the hierarchy was in a hospital. Given how often I was in them as a kid, it was probably not a long time coming. I do, however, remember the first time I was with someone who was figuring the system out. I had been at a holiday party this past Christmas, and horsing around with a couple of the people I’d just finished teaching with. Despite the fact I was cold sober (and admittedly the only one), I managed to get drawn into duct taping a colleague to the floor — and kicked across the room for my effort. The long story short, I ended up in the ER about 6 hours later, admitting that my self-diagnosis appeared wrong. Mostly because I was in so much pain I couldn’t stand it; the intern nicely put me on a morphine drip the minute he heard my chronic pain history. A while later, when I wasn’t screaming and trying to physically harm anyone touching my wrist, the intern returned with his cadre — and my friend who’d accompanied me to the hospital, largely from guilt, as he was the one who’d caused the damage, jumped up and hovered over my bed protectively. He looked straight at the medical student in the group and told him, in no uncertain terms, to get out. The intern looked at me, while the med student turned white and didn’t even wait for my assent before he left. Seems that the two of them had taken a class together the previous year, and the med student was, in my friend’s terminology “a complete pothead loser” — and he didn’t want the student touching me or causing any more pain. Flattering, of course — but I felt a bit weird about it, too. After all, UW is a teaching hospital… A little later, when I was resting comfortably, sedated and full of enough morphine to hold up my end of a conversation, he told me he’d never realized that there are different white coat lengths.
I’ve had a lot of procedures done, and I do try to pull whatever charm I can to make sure the attending does as many as possible. My last nerve block, my attending sweetly asked if his star resident could do the procedure, and I consented… and had the terrifying experience of hearing my doc tell the resident to go further with the needle, and the resident saying “I can’t, I’m hitting her spine.” Nevermind the fact that, due to how I was positioned, I could see every detail on the fluoroscope (partially out of request — my doc’s always got a kick out of the fact that I wanted to understand what was going on). Not the most fun thing in the world to hear!

Still, even though it took him a dozen sticks, and I was bruised and sore for weeks, nothing truly bad came of it. I got my nerve block, the resident got his experience, and he got it on someone who was willing to tease him about it, rather than yell. Isn’t that the point?

And yet, the more I learn about medicine, the more inclined I am to find the best. The most experienced. The one who’ll cause the least pain while maximizing my own benefits. And I wonder if that’s fair? In a very short while, I’m going to be the one reading charts and weighing in on contentious issues. No matter how much experience I have analyzing case studies, doing four-boxes in my sleep, and running through practice exercises, it’s different in actual practice, and I’ll be a novice. A supervised novice, but a novice nonetheless. By coming to a teaching institution, people are implicitly, although I’d argue largely unknowingly, agreeing to be learned upon — and that learning is going to include my own. Shouldn’t I acknowledge that and offer myself as a learning agent when possible, as gratitude to those I’ll be learning on? Isn’t that the morally right thing to do, rather than see an intern and nicely ask to see the resident or attending, instead?

Through Water’s Thickness [August 15]

“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.

The Watcher Eternally Watching [August 15]

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.