Category: Bioethics

Today Bob finished his lecturing, wrapping up the four distinctions in avoiding killing, and running through the different states of competence in patients. It was technical in rattling off lists fashion — he was obviously in a hurry to finish his data — and there wasn’t a lot of deliberative information. Of course, I suppose in part I feel this way because I’ve had Bob’s texts assigned in the part, and none of this information is particularly new — I’ve debated and argued over it, and honestly don’t remember a lot of the debate. Nor did I find there much today; Bob ignored a lot of questions in order to move forward, and those that were asked were along the line of challenging his authority to even explain the distinctions and his knowledge of philosophy, the sort of questions that just make me groan and wish I was in another room.

What I did find interesting was that the Josef Kamp case was not resolved by the bioethicists, or the family, or even the doctors. In the end, the family likely saw that their wish was honoured, and Josef was kept alive until Allah took him home. No convincing to change beliefs or treatment, just a lot of agonizing debate in the background, which ultimately came to naught as Josef’s ravaged body gave out and refused resuscitation.

I would have liked to know how Bob felt about this, how the doctors felt about it, and how the parents felt about it. All the people involved, what was their emotional reaction to this end? As this week is ending, I find myself shifting away from the law and more towards the emotion, which is probably a good shift. (Or at least, one where I can play, since I have no aspirations to practice law.) And this makes sense, it is in line with my thesis research. How are we connected? How do we feel about each others actions, how do our actions impact, affect others?

How did Josef Kamp’s death affect everyone surrounding him?

While Bob didn’t answer this question, he did tell us a beautiful story, one that grounded me back in my feelings and emotions. While I did shift from worrying about law (and especially worrying about my utter lack of NY State law, and the frustration I felt at things shifting from ethics to law to being told I was clueless) to thinking about emotions, it took a distancing first, where I felt very cold and remote from the subjects we were talking about. Passion, fire, drive, it was all behind a wall, allowing me to think but not experience. Bob yanked this wall down with a simple story. A beautiful story.

I cannot do justice to this story. I can’t tell it on paper (digitally) in a way that will move you the way Bob’s voice will move you. I cannot make this text crackle with tears and restraint. It’s a simple enough story, of death in an ICU. The sadness comes in the hopelessness, in the knowledge of the pain of the death, for the patient and the family. A girl, dying in the ICU, blinding fluorescent light in her eyes that the nurse wouldn’t allow turned off, despite her begging pleas, parents unable to spend more than 5 minutes at a time with her due to The Rules, no chairs in the room, no privacy, nurses not bothering to cover the dying girl’s body because she kept throwing the blanket off, and it irritated them. The futility Bob felt, inability to help her, do more than stand there and touch her and wish he could do more as he accompanied her life to its end. Her painful, long and lonely death in that hospital. And Bob’s decision, as he witnessed this, to do his best to make sure no one else ever had to die that way again.

Beautiful, moving, touching.

I’ve thought, since the story, about this. About the fact that we all have stories that have moved us to wanting to make this difference, practicing bioethics, to get involved in the debates and decisions between doctors, patients and families. And I’m curious what those stories are — I’d love to be able to simply go around and ask people to tell me their story, to record it, to see if there are similarities, and note the differences. Are we all motivated by the same thing? What variety is there in our emotional, moving story or stories? Is there a single clear point, as there was for Bob, or is it a composite of experience?

It’s the ultimate philosophy question honed to a specific field, isn’t it? Why, why are we here?

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.

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!

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.