Out of Body Experiences

Thirty-five days on the hundred-day count. Sorry for the radio silence: my computer finally died to the point where not even jamming a screwdriver down alongside the power key could turn it on. So I am typing this on a brand new MacBook, very fancy. Thank you for your patience.

Growing up Quaker at the time that I did, there was a pretty large emphasis on healing within my faith community. I remember Sas Carey coming to speak to our youth group, and we would all lie on the floor and visualize healing light flowing through us. Susannah’s grandparents tell a lovely story about inviting John Calvi to do a workshop in their retirement home’s dining hall. There, too, everyone wound up laying quietly on the floor, much to the confusion of the non-participants.

I was also exposed to other "alternative" medical paradigms and practices, including some (like homeopathy, vitamin therapy and mass-market herbalism) that closely mimic the rituals of what they would call "conventional Western medicine." Others were more far exotic: acupuncture, moxibustion, sclerology. All of these traditions seemed to be engaged to some degree in an epistemological conflict with conventional medicine, and nowhere was that so apparent as in the therapies whose activities are situated outside the body of the patient. I am thinking here of energy work: reiki and qi gong, especially, but also prayer in its incarnation as therapy. I saw, and still see, particular moments where this conflict became a sort of black-and-white argument between two worldviews.

But it's usually more subdued, and--pointedly--it isn't exactly clear what the epistemic claim of conventional medicine is supposed to be. Dana Farber, for instance, offers in-house massage, acupuncture, reiki, and qi gong. Susannah was especially fond of reiki. Through an tangle of awkwardness, I get the impression that the nurses consider these treatments highly effective; the insurance companies think they're ludicrous; and the doctors are skeptical, but are afraid to say so because they don't want to antagonize the patients. One of the doctors even commented something to the effect that he did not want to denigrate alternative therapies because it might diminish their (presumably psychosomatic) effects…clearly a paradox. It works well until you learn it doesn't work, and then it stops working.

I think it's fair to say that mainstream medicine is positivist, with the usual positivist shuffles between empiricism and rational thought. But it isn't the fanatic positivism of Compte or today's entrepreneurial neo-atheists. In fact, throughout our interactions with doctors and nurses in the last eight months, we have tended to push for considerably more science than they've been comfortable with sharing. In particular, Susannah frequently tries to get quantitative information, statistics and probabilities, and the doctors almost invariably hedge, often refusing to give us even orders of magnitude. At the same time, when we are directed to drugs or procedures whose mechanism is empirically verified but not rationally understood, the doctors sound apologetic. Clearly there is a widespread assumption that patients prefer theory to evidence, and should perhaps be protected from evidence even if they ask for it.

We are both, among other things, empiricists. Quakerism has an oddly empirical approach for a faith tradition, beginning with Fox's "And this I know experimentally…" and leading directly to the fact that Susannah's prayer team are organized on an Excel spreadsheet. We love our statistics. (Susannah's first two question on being diagnosed with a non-specific blood cancer was what the frequencies and mortality rates of the listed disorders were.) But, as they say, there are no atheists in the foxholes, and there is certainly a strong pressure on cancer patients and everyone around them to abandon any mode of thought that might yield less-than-optimisitic results.

Meanwhile, most "alternative" medicines have their own rationalist justifications, and in the main tend to treat empirical evidence as an acid test that they cannot possibly pass, and must ignore or circumvent by various means. There are many exceptions to this, most notably acupuncture, which is clearly effective in a wide range of experimental settings. But this anxiety is hardly the sole province of alternative medicine. Psychiatry gave up on empirical work back with the DSM-III, and they are not about to look back now, in the hoopla for the upcoming DSM-V, which promises to be basically a long, dry, advertisement for Pfizer. The surgical journals I've seen sound more like art appreciation than any kind of science. And the phrase "evidence-based medicine" seems to remains something of a fringe concept. I am also thinking of a friend of ours, a scientist who has written extensively about scientific method, getting lectured by her ophthalmologist for using homeopathic eyedrops, which she swore by. He, in turn, prescribed her a medicine that had no effect on her, and which, under closer examination of the fine print, had an “unknown mechanism.” So who is the champion of science there?

Anyway.

Susannah continues to have acute graft-versus-host-disease (GVHD) in her skin and eyes. To deal with this, she is now being treated with ECP: extra-corporeal photopheresis. “Extra-corporeal” because, like reiki or qi gong, the therapy occurs outside her body. Yes? They draw her blood into a centrifuge, isolate the white blood cells in a little boustrophedon tube, and then expose them to UV rays. In other words…uhhhmmm…her blood is bathed in healing light. Not exactly in the Quaker sense, but perhaps the analogy here is not so very thin. And then they pump the blood back in. Several times a week, for several months, it sounds like.

This sort of vampiric tanning booth is off-label for GVHD, although apparently its become more commonly used on GVHD than whatever it was initially designed for. It’s an experimental procedure with a long track record and…(drumroll)…its mechanism is unknown. There was a theory, earlier, but apparently it broke down in the harsh light of empirical evidence. Now we are left with only the knowledge that it tends to work, and will minimize the need for steroids. Susannah is still on lots of steroids, and there too, in the fine print, we find the wonderful phrase "unknown mechanism."

Behind all the clamor of philosophers, I think epistemology is a very personal and very emotional field. Would you rather be right or be certain? Would you rather know what your odds are? If there is information you can't use helpfully, would you rather not know it? Would you rather trust your eyes or the theory? These are not simple questions, and we are not apt to answer them consistently throughout all the events of our lives. But they are important questions, and ones which I think get too easily subsumed in medicine of all forms.