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ProSeminar 2006 – Page 3 – Life as an Extreme Sport
Life as an Extreme Sport

I’ll Be Your Phenomenologist* [August 10]

Today we deviated for a while on the idea of consequentialism and non-consequentialism; I wonder why some philosophy hasn’t been required for the LIM students, at least, or having a glossary of terms available in the Giant Book of Doom? Might have saved us a lot of debate on whether or not these terms are actually in existence, real, true, etc and so forth (to list three of the basic arguments offered). Lisa Newton has a great, three or four page explanation of the terms, in a basic ethics book, that would work really well as a simple explanation and catching up document for people. That’d be today’s suggestion for improvement.

Anyhow, this comes up because Bob wants to look at actions we can use, aside from the guidelines of the Hippocratic Oath, to practice medicine. What is there aside from beneficence/non-maleficence? I’m looking forward to this, because I find the Hippocratic Oath limiting. I think not enough people take enough consideration in the restrictions about deadly drugs, abortions, and surgery — these things are there, and I’ve read several explanations as to why, but few people seem to acknowledge it. My favourite pet theory is that the Hippocratic Oath was the oath for one variety of doc, and there was likely oaths available for people who provided abortions, performed surgery and were apothecaries. But, I am also very indoctrinated into the idea of there being four principles to the ethics of medicine, and I feel like the Hippocratic is missing the principle of autonomy (in fact, it’s heavily paternalistic) and justice. Of course, if you have a theory of medicine that doesn’t recognize autonomy, you have no concept of informed consent.

Another issue I do have with the Hippocratic Oath is that gender stereotyping is built in to our early medicine, and because of that, it is also built into the Oath. How useful is something written in heavily gendered language? Yes, we can understand the culture and the time and say “this was the norm” — but the norm was to treat women as a second class, and that’s in the language itself; should we continue to respect that language? (The AMA certainly doesn’t. While you might argue that it’s a Hippocratic-derived oath, it’s nothing like the Oath itself, and in fact seems to drift away from Bob’s quadrant of individual consequentialist on his diagram and towards a more middling social non-consequentialist oath.)

Bob left us with the first of four distinctions to avoiding killing, and in our conversation after I jumped the gun to the third distinction, which is the doctrine of double effect, an idea I still find extremely interesting — I wish we had been able to spend more time on it, especially time reflecting on the ethics of double effect.

“There is, I assure you, a medical art for the soul. It is philosophy.” —Cicero

Aaah, Cicero, Epicurus, and laughter — it must be time for Glenn to lecture again. The amount of off-the-cuff quotes I have in my notebook are amusing, but I’ll spare you those and just add them to my signature file.

Today Glenn passed out Martha Nussbaum, bringing me back, once again, to my undergraduate education. Of course, I’ve never read this particular Nussbaum, but I’ve read enough and I’m not terribly fond of her. It was hard to not visibly groan and roll my eyes at the idea of a two hour lecture on Nussbaum; hearing that it was going to be a dramatic misreading was, at least, a cheery note.

The misreading itself is very interesting, and based on the Cicero quote above: medicine is just a philosophy, and that ultimately, medicine is philosophy. You must treat the holistic body, and in order to truly heal the body, you must treat the soul. Chrysippus, whose name I’m undoubtedly misspelling, says that “philosophy is supranumerary to medicine in therapeutic treatment.” The person who seeks to assuage suffering, then, must understand philosophy — an argument I suspect that Eric Cassell would strongly agree with. Suffering, after all, is distinct and separate from pain. Pain is a physical response, something that echoes through-out the body, in the nociceptive system. Suffering, on the other hand, is a non-corporeal concept, something that depends on several non-tangible and non-physical criteria. You must have enough consciousness to be aware of time, of past and present, as well as future, because you must be able to apply an experience of pain to the future, anticipating further pain. This anticipation is suffering.

Treating suffering, then, is not the same as treating pain. I think we most clearly see this in the treatment of chronic pain diseases, or painful terminal illnesses. It’s been shown, time and again, that simply the knowledge that adequate pain relief is available is enough to reduce the suffering of those in pain — without having to take any medications. So you can treat pain all you want, but still have a sick, suffering patient. The patient needs to be assured that their fears of future pain have been addressed, and are not valid. To do that takes more than just psychology, I think it does take the techne of philosophy.

I do have to wonder if the most difficult thing in this world really is being trustworthy. A quote from Buffy the Vampire Slayer says that the hardest thing in this life is simply to live, which rings a lot truer and broader than ‘simple’ trust.

* This must, of course, be said as Val Kilmer’s Doc Holliday (Tombstone) would say it, for maximum humour.

In Which I Become Cranky [August 09]

To be perfectly honest, this entry starts with a few random thoughts accumulated Tuesday afternoon, which I found a bit latter in my book — well, latter being that it was after my notes from Nurse Otto, and I neglected to turn that far when I was typing things up for Journal 4.

This is the point during the week where I first began to get exasperated, and the reason for it is the near constant refrain on disability. To quote exactly what I wrote down:

It pisses me off when people try to pull “only the disabled” and then focus only on physical — who’re we to judge another based on how they look? I know that this pisses me off, and I’m trying to keep quiet, but her attitude just really irritates me — she sleeps through class, asks questions that have already been asked and answered that she missed because she was sleeping, and makes points that were already made and talked about for 45 minutes. Then she brings her attitude about disability as though that grants her some position!

I am the first to admit that part of the reason this so irritates me is that I am disabled, but just invisibly so. While I can certainly “pass” in the normal world, I do so at an effort, and it’s one that takes drugs and patience, and knowing my limits. I don’t take classes at times of day where I know I’m likely to fall asleep in a hot lecture room, I don’t commit to doing things I know will end up leaving me in bed for a week. I live as normally as I can, and I expect very little sympathy for what is ultimately my own problem. Yes, I am incredibly grateful for the love and support of my family and friends, but they’re family and friends — there’s a bit of obligation to give a damn built into our relationship. I don’t, however, think that obligation extends to my classmates and professors.

I do think that it’s incredibly important to know where you come from, how you colour the narrative you construct. The observer is not just biased, but that bias impacts everything the observers is involved in. There are times appropriate for your narrative, but it’s not every time you speak!

That said, I do think one of the more provocative questions brought up last week is what does it mean to have life? What does it mean to live? How do we define it? At least in part, that definition is based on a Cartesian inheritance of a notion of the split between body and soul, the machine and the ghost within. But what about the view that there is no ghost in the machine, that we are an embodied being, and that, as is said in Buddhist texts, I exist in my finger, I exist in my hand, I exist in my arm and leg and chest and… where do I stop, and where do I begin? What can you remove to still retain I, and what must go away for I to be lost?

Like many people, I suppose I look to a mix of science and religion for my answer. Scientifically, I understand what happens to the higher brain while someone is in a PVS. An so I suppose, that even on that level, I do not subscribe to the view that death is only a whole brain activity — that death happens when the higher brain ceases to function on a permanent basis. This, thankfully, or perhaps not coincidentally, is also similar to what His Holiness the Dalai Lama espouses: that when the conscious brain is gone, it is permissible to remove life support and (most importantly) donate the organs. That death has to have meaning, and the meaning is generated through the gift of life, one of the most selfless acts a Buddhist can do.

This, of course, is in strict disagreement with traditional Buddhist beliefs, including those listed in the Tibetan Book for the Dead. In the traditional mindset, death was cessation of cardio-pulmonary function, and the body was left for three days before death declared. The body was then left for a while longer, as the necessary rites of the bardo were read. The exact ethics are complicated, and variable, so I’ll skip them here, but they do boil down to a notion of there being something in I, inhabited not necessarily within the brain, but within the electrical field generated by the brain (in here Buddhism and quantum physics run into one another and have a lovely dance). When that field ceases to be, you are merely displaying attachment to the husk that is the representation of a life of memory, and that is for you to work through — to remove your attachment and allow what must happen to happen.

Does this sound cold? I suppose it depends on your own personal view of when death is.

So naturally, the thinking about death that Bob Veatch brought about on this day is related to his outlines of the basic positions of the various abortion camps. One thing I thought was interesting, especially given Bob working in a religious institution, was that he did not understand and acknowledge that the fundamentalist Protestant view is quite often not within the guidelines he outlined. Specifically, I’m thinking about his description of how cardiac function translates to argument, and when do you say “this cardiac function now exists” so that you can create a parallel argument of when the cardiac function ceases. I suppose that in my experience, if you have individual, spontaneous beating cells that you can immortalize and grow in vitro — well, that fundamentalist Protestant movement is going to scream life and demand proxy-agency. (It made more sense in my notes, really…)

But what stood out on this particular day, in this particular lecture, is the Eastern European women’s reaction to Bob. Bob Veatch is a legend, at least on my coast. The first person to train in bioethics, to see where the field is going, to become neck deep in these issues — well, he’s not a god, but he’s got to be pretty close. But Renatta and Joanna don’t have the same script I do, they don’t have my lineage, my textbook collection and multiple syllabi that are rife with “Veatch, R.” They don’t think twice about standing up and challenging what he says — which shocked me when Renatta did so.

Of course, this challenging attitude it what bothers me about the LIM students, too. I suppose the difference between the two groups, for me, is the level of respect. The Eastern European women challenge what Bob’s saying, but they do so with a politeness, an acknowledgment of his position and professional stature. They don’t challenge his knowledge of bioethics or philosophy, just his knowledge of details of, say, biology (and thus the implications of the misunderstanding as it applies to bioethics and philosophy). At least some of the LIM students, on the other hand, appear to believe they have all the answers to all philosophy questions, and there’s absolutely no problem with telling a leading authority that he’s wrong. Thirty years experience versus maybe a quarter or two, but Bob’s the one who’s wrong.

I honestly don’t mind disagreement, or debate — that should be obvious if you get me after coffee, and onto a subject I enjoy talking about. But do it with respect for the person you’re talking to, and respect their professional knowledge!

I’m ranting again, aren’t I? I can’t tell how much is just midweek frustration and tiredness, and how much is other — is wanting to get along with it, move forward, move faster. It’s such a wonderful opportunity; when will I ever be able to take a class with Bob again? And we spend so much time on Philosophy 101, when I want to be at Ethics 650.

We deviate again to the Hippocratic Oath, and I find myself growing frustrated with the binary exchange, patient/doctor, nothing more. Harm/benefit, yes/no, 0s and 1s — there is more to the situation than this! It’s an environment, it’s a wide field, it is not so simple. There is nuance – how do you argue against treatment for a PVS patient that would be creating harm to a conscious patient is not simple, it is not yes/no. If a patient cannot feel pain, cannot suffer, where is the harm? Where is the nuance? Can you argue harm to body as opposed to “soul”? Whatever the answer is, to whatever the question, neither are binary. Affect comes into play; there is more being treated than just the patient. There is the family, there is the nursing team, there is… me repeating myself again. Again. Shall we see if I can find something less repetitive to talk about?

I found John Kaplan’s exercises in research ethics to be a fun break in the day, headaches generated from the people I was working with aside. It was bright and cheerful, and just simply fun to break down a case, attempt to find the highlights, scribble them out into a cheat sheet, and then debate and discuss, laugh and listen. Bebaeau’s technique is very similar and familiar to Jonsen’s fourbox, so there wasn’t a lot to learn there, in methodological theory — the names of the divisions were different, but the concepts the same. Break things down into a logical structure to analyze the situation in front of you.

Of course, this is also the class where I first outwardly lost my temper — I think, however, I should be eligible for an award, as it took this long of hearing the LIM students say that this isn’t the real world, it doesn’t really count or matter. I’m here because ethics, bioethics, research ethics, clinical ethics, are my real world — and the real world of many people in the hospital, in nursing homes, palliative care, and all forms of the medical community. The utter disrespect and disinterest has been insanely frustrating, and this is the point I lost my temper. And I did so publicly, and was quite embarrassed by it (though apparently not so embarrassed by it, as I’m repeating it here). Of course, the flipside was having so many people come up to me after class and sharing their frustration about similar with me…

Anyhow, I digress. Professor Kaplan forgave me, and in fact told me he was glad to hear me lose my temper, because if you don’t get emotional about what’s going on, you’re not really doing it right. I don’t know if I fully agree with that, and I’m certain I don’t remember what he said specifically, but I appreciated the sentiment — these are volatile issues, and being in touch with that volatility is not necessarily a bad thing.

I found myself also being a bit irritated with graduate students (since I don’t want it to seem like I’m just peevy with the LIM students), specifically a few who kept wanting to apply the rules of the business world to academia. Academia doesn’t operate on the same proprietary principles of the computer and business world, it is not a business — or at least, should not be. The commercialization, commodification of academia, the same thing that is going on in medicine, is in my eyes a bad thing. A patient is a patient, not a consumer, and a student is a student — not a consumer. And academia’s hallowed halls and ivory towers are not lined with stockholders meetings and ticker tapes!

I think I want to leave this with something Wayne said, that I’ve been repeating to myself whenever I am in the place of analyzing an ethical situation: Don’t get bound up in the legal — our job is the moral and the ethical. Leave lawyering to the lawyers!

Resting with Patience, and Bunnies

I’m sitting outside Olin Hall, on the Union campus. It’s a pleasant morning; I actually have a sweater on. It’s maybe 65 degrees, although the high is threatening to hit 85. I’ll be inside and air conditioned for most of it. I’m feeling pretty today, too – very light makeup, my hair pulled up in a twist with tendrails escaping and curling around my face. I’m meeting an expert on the case I present Friday, this afternoon, so looking nice can’t help. Besides, it’s always good to feel good on a Monday morning.

I’m surprisingly chipper for having been up since 5am, although I’m certain the ginormic latte from Starbucks is helping; it is only helping, though, since I was chipper before. We’ll see how I feel around lunch; I suspect flagging exhaustion is in my near future. I didn’t get to sleep until much later than I wanted; I’m afraid the Lunesta is no longer working. I’m not sure if this means going back to either rozarem, or the ambien/trazadone mix, or trying yet another something. I wish I knew the doc’s at AMC better, I’d just ask them to prescribe me something (and refill that pesky vicodin prescription while they were at it).

It really is beautiful here. The campus is greener than UW, with hidden pockets of garden and seats scattered everywhere around the large central lawn and Nott Memorial. Union was apparently the first planned university in the States, and it shows in its design and function. It really is lovely.

The large amount of green encourages wildlife. The squirrels here aren’t as scarily bold as the UW squirrels, but maybe that will change when food isn’t so abundant. In addition to them, and the near-ubiquitous sparrows, chickadees and flocking songbirds, is a population of small, wild bunnies. They’re small rabbits, not the large jackrabbits of the southwest. I don’t know if it’s a domestic rabbit population gone feral, like we had in Seattle, or if this is just natural around here, but they are here. I see them in the brush, or stretched out on the lawn on a quiet afternoon, basking in the shade. Friday, while I was stretched on the lawn doing similar, one came within about 3 feet, stretching out sideways and actually falling asleep – it snored! Of course, the minute I moved, it was off, and that was that. Still, they make me smile. Another bunny park.

I’m not nearly as homesick as I expected to be. Part of that must be because I saw so many of my friends so rarely, to begin with, and I continue to talk to people via this lovely device known as the computer and the internet. In fact, to be honest, this past weekend I spent as alone as I could, just recovering from being around so many people for so long the last week. I am, I admit, homesick for CHID and UW and Phillip, and everyone in the office. Sometimes, when I lay back just right on the couch, and close my eyes, I can hear everyone talking about laughing, voices echoing in mind.

I’ve been assured I’ll be integrated here, and start to make friends with the same interests as my own. I trust, at a surprisingly deep and visceral level, the person who told me that, so for now I rest with patience and I wait.

St. Margaret’s [August 08]

I know that everyone is hoping, if not expecting, a journal reaction on St. Margaret’s, and I understand why: the facility has quite a few profoundly disabled individuals there, and I think it’s a difficult thing to see regardless of how prepared you are. The staff themselves often had wet eyes during the tour, or at least our guide, the physical therapist, did. Nurse Otto also gave us a list of questions to ponder while we were there, and I guess I found those easier to think about. It’s not that I really felt neutral at the home, it’s just that I didn’t feel much different than I would in any other intensive care hospital setting.

In a way, this disappoints and bothers me. I had talked earlier about Wayne’s comments about acclimatization and distancing ourselves from what we see, and my bit of fear that doing so means a loss of humanity. I had intended to walk into St. Margaret’s with my heart on my sleeve, feeling everything and still being grounded, connected, and so forth. Instead, like I said, I found it like any other wander through an intensive care unit. Has that acclimatization and distance already happened? Some time over the last few years, did I build a wall and not notice it, and I’m just now seeing the bricks and mortar? I’m not an unfeeling person, so I really don’t know what it is. On the one hand, I feel like this is good, because I don’t feel any different, or like I needed to be different while there. But on the other, I find myself suddenly wondering if I lost a part of myself without noticing.

Potentiality seems to be at the heart of the St. Margaret’s issue. As we were told when we were there, most of the patients have no more than a 9 month old capacity, if that — and that would by far be their best patients. Yet we grant a 9- month old infant full moral agency, so why would we not do the same for these children and young adults? We assume that a well cared for infant is cheerful, happy, and has a good quality of life. Why would someone in a facility like we saw at St. Margaret’s have any less a good quality of life than that infant? The only conclusion I can reach is a dual one.

1) We know that, at one point, this person had a different quality of life, age appropriate and shifting with their age as they grew up. Because of our knowledge of their previous baseline, we see where they are now and assume they must be miserable, stuck. Aware that they are unable to progress, and that they will be forever as they are, static entities until death.

2) We differentiate this injured person from an infant because we realize that an infant has the potential to grow, change, age, and have an age appropriate quality of life. We don’t consider a 35-year old living at a 9-month infant’s capacity having an age appropriate quality of life.

Of course, the problem that comes up with this is that we still grant moral agency to someone with Down’s Syndrome, who typically has limited capacity and quality of life appropriate to age. …or, then, perhaps we have to look at whether or not we grant people with limited mental capacity full moral agency?

Interesting. I think I’d like to continue this conversation with someone I can actually use as a sounding board. Any takers?

Code Grey [August 08]

I feel like I knew that Bob’s prof’s were the folks comprising the Harvard Ad Hoc Committee on Death, but I blinked a few times when I heard it, anyhow. Sometimes it’s hard to remember that history is only as distant as our own memories; what is intangible history for me is Bob’s graduate days. It’s an odd sensation — and another reason why I think that Glenn is wrong when he says we have no lineage, rooted history. Perhaps he doesn’t, because he’s one of the people who’ll be the father-philosopher’s of the field, as is Bob, Art, and so forth. But for me, the, what – third generation? Fourth, perhaps? I have lineage, and it is found within these larger than life names that are suddenly grounded for me here, in Albany.

That said, and though I have several things I’d like to write about today, the first thing I want to bounce about, to glee about, is something that probably seems to silly, so prosaic. But I got my AMC ID today, and with it came an emergency code card (though I’ll note, as I told my friends, and as a Grey’s Anatomy joke, there’s no code black…). For some reason, for all my time in hospitals, and in all the roles I’ve had, I’ve always been jealous of that code card. It seemed like a mysterious world of knowing what was being said on the loudspeaker, some secret world to be initiated into. So, after getting my parking pass and walking back to Security to grab my bag, to be handed an ID that included a code card felt like I actually had crossed some line, from the side of sometimes volunteer or patient or student in a hospital so large that they never ventured out of the research wing and never needed an ID, to something more tangible, more real — an attitude I admit it is, when you think about it, silly. Yet, there it is, the reaction I had to a simple piece of paper. I suspect Sue would talk about tangible artifacts of cultural meanings…

In today’s lecture, Bob talked more on the Hippocratic Oath, moving to the question of full moral standing, and who has it. Rather naturally, I thought of Mary Ann Warren, and Sara (Goering)’s class on moral issues of life and death (framed around Peter Singer’s arguments, but an interesting way to be introduced to various positions). Anyhow, in talking about moral standing, Bob made the statement that defining death has a little to do with biology and a lot to do with morality. He then went on to explicate the moral positions of cardiac, whole brain, and higher brain death. But in introducing this rather, in my eyes, provocative turn on the subject — that death is a construct, and it’s a construct that exists so that we can both define life, and define moral agency, standing, ability and responsibility — Bob yanked our attention over to a very common phrase: oh, he was clinically dead, but we brought him back to life. Well, no, says Bob, he obviously wasn’t clinically dead, since the definition of such is an irreversible loss of function; if you were able to resuscitate someone, then they did not irreversibly lose function, and ergo are not dead . Thus, we should limit death to functional loss, where you cannot be brought back — there are too many issues with the vagueness around the language of death. I will admit, this is a charge I’ve heard a lot; at one point, knowing when someone was dead was easy, and now it is one of the hardest things to know.

Apparently Jersey is a really interesting place for ethics — Quinlan, of course, but on top of that the law recognizes that some religions look at death differently, and Jersey has no requirement that every person use the same definition as medical norm. There are some specific exceptions in line for people with religious beliefs, which seems rather enlightened. Perhaps we can hope other states will export such a view…

The idea of ventilating corpses, something that happens daily in hospitals all over the country, is creepy. There’s really no other word for it; it brings to mind the idea of a Robin Cook novel, and the ventilated corpses are really being used for some malicious reason; they’re being harvested for organs (Coma, by Robin Cook) or maybe used as batteries to run large cities (rather Matrix-y), or even as incubators for… well, babies of our own, or maybe alien babies or bacteria (reminiscent of Battlestar Galactica and the farms on Caprica). Legally and technically, there is a big difference between pronouncing death and ventilating a cadaver, and ventilating a person who is brain dead, including the very basic one of insurance, not to mention the language itself — labeling carries power. But I think that my brain will forever have the image of some pseudo-futuristic, science fiction/horror world with ventilated cadavers looming ominously in the background.

Sue showed us the end of her illustrative B-movie today. I’m very disappointed I didn’t catch the full cultural script; I was too enmeshed in my own timeline, and didn’t consider the quite most obvious option! After all, the idea was not the redemption of the family and potential for good, rather than inherent bad running in families, but redeeming the girl; obviously adoption is the clear way to redeem her while still condemning her “family”. Some of the quotes from the movie are great:

We can make an occasional mistake — the benefit is so great! (Really? Where do we sign people up for being made mistake on?)

This is for the good of the public at large! (Presuming your public is white, middle class America, mainly men…)

This segment was interesting, but mostly repeat for me. I had a full class where I focused on Cold Springs Harbor and their eugenics database, crawling through and reading and marveling at the attitude of people so recently ago and so different from my own world. And of course, people from that era are still alive and kickin’, even if they weren’t born ‘til decades later. So seeing the view is probably worthwhile. But anyhow! Eugenics fear, more than anything else, I think is what has pushed for the ELSI budget allocated by the Human Genome Project to begin with. Which comes back to the culture idea, and culture pushing/pulling our public policy.

I meant to look up the CNN report on the German doctor claiming he could vaccinate against stupidity, but we weren’t in an internet capable room at the time, and the whole exhaustion/falling over when I get home thing/no energy to find internet outside of school thing prevented me. Still, the idea of a vaccination against stupidity… do you suppose, should that actually be true (which I so strongly doubt, I won’t even bother to underline it, I’ll simply trust you’re with me on this one), that we would simply redefine what stupidity is? It’s a rather Harrison Bergeron-esque argument, only instead of keeping everyone at average, it demands that in order for there to be average, there must be exceptional and less than. Won’t we always create a less than exceptional?

It seems to me there must be some level of irony that the intent of the Eugenics Record Office was, in part, an attempt to work as a marriage record office, allowing people to make the most fortuitous marriages. After all, don’t we have databases today that are the same basic premise — allow people to verify that their progeny will be healthy?

Then again, I’m the person who saw the photo of immigrants at Ellis Island, under an American flag, and instantly thought of Nazi Germany rally pictures. I might not be the best mindframe to see neutrality and irony.