Life as an Extreme Sport

Hold Your Breath

Not to be left out of the recent slew of video posts, I offer “Hold Your Breath”, a new film from the Program in Bioethics and Film at Stanford’s Center for Biomedical Ethics (whew, long title). A documentary by Maren Grainger-Monsen, Hold Your Breath looks at multi-cultural miscommunication in medicine. From the website,

After fleeing Afghanistan in 1979, Mohammad Kochi settled in Fremont, California and raised his family. Just when life seems to be getting easier for Kochi, he is diagnosed with an aggressive, life-threatening cancer. When Mr. Kochi rejects chemotherapy and instead embarks on a pilgrimage to Mecca, his doctor fears that family members acting as interpreters have misinformed Kochi about the gravity of his disease.Meanwhile, Kochis daughter, Noorzia, blames a culturally insensitive health care system for her fathers rapidly declining health.

This haunting documentary exposes the poignant clash between ancient Islamic traditions and contemporary medical technology through intimate moments of anguish, frustration and hope.

There are screenings across the country, and select PBS stations will also be airing the documentary this month. For those of us unlucky enough to live in markets without either, a short video clip can be seen here.

[With thanks to Rebecca Garden and Audrey Schafer!] — Kelly Hills
[and thanks for the heads up from Maren Grainger-Monsen! – Glenn]

Originally posted at the American Journal of Bioethics Editors Blog.

collective souls

All the rest of us who are now collectively soldiers in the war on terror…

The words there are not as surprising, nor do they leap out of the page so much as when they are summarized by others. Over the course of my weekend academic readingsMy final paper for the public health ethics course I’m taking will be on bioterrorism, biodefense, and bioethics. Mmm, bioX., I several times caught the quote “we are all soldiers in the war on terror now”, and every time it was attributed to Art Caplan. It’s the sort of thing that jumps out at you, especially when it seems not quite right, but not for any particular reason you can articulate.

So today, taking a break from virtual work, I grabbed Smart Nice, Not-So-Smart People off my bookshelf, to see if the oft-cited article was in the compilation of essays. Indeed it was, and I could read the entire article. Having read it, I feel more comfortable with the statement Caplan was making, and am a bit amused at seeing it taken so dramatically out of context elsewhere, most likely because it’s imminently quotable taken ever-so-slightly out of context.

But reading the article as a whole, it was really the end of it that hit me. Not for its Caplan-esque quotability, but for the deep sadness knowledge brings about. Caplan says

After the World Wars, Korea, Vietnam and the Gulf War, those who served knew that they would get the medical care they needed. A grateful nation promised them what they had earned.

Medical care that includes falling down rooms, leaking ceilings, mold, unwashed linens. Discharing our veterans with medical injuries and then losing them to followup, or flat out deny their care – that is, if we’re not re-deploying the seriously injured.

If this is how we treat our actual veterans, why do we have any illusions that we will treat the people of our country any better, by granting universal access to health care? Caplan says in his article that “[i]n the new world where each of us is a target and every American is a veteran, we must make the same promise to one another.” I hate to be the bearer of bad news, but we have, and we do. We treat our veterans like we do the rest of the population: we offer a safety net that isn’t actually there, and hope no one actually falls and needs it.

gather ’round ye olde camp fire

Alright, kids. We need to sit down and have a chat, and rather right quick, apparently.

First, hi! Wow. Rather suddenly there are quite a lot of you reading this, eh? Mostly silent, but you’ve still got a way of making your impact. I especially like the links and trackbacks and such, thanks.

But see, here’s the thing. Y’all are sort of this vague and amorphous mass, and well, we don’t know each other. (At least, the last time I looked, I didn’t know any amorphous masses. There might be one in my fridge by now, I did forget to clean it out before I left.) Maybe more importantly, you don’t know me – not even those of you I talk with in other mediums. (Consider the fact that the vast majority of the people I talk to on a frequent basis, I have known less than a year.) That can make things kind of weird, because you attach more emphasis on things that are just casual toss-off’s on my part, and probably don’t know what to look for in things that are actually serious.

My dear friend Michael summed it up quite well when I was laughing to him about this earlier tonight.

That’s the problem with blogs. They’re so public and wide audienced that people assume anything posted in them is of critical import, when the purpose of them has simply been to chronicle life, something everyone knows about their own blog but never remember when reading others’.

This, of course, doesn’t mean we can’t and won’t get to know one another… it just means that maybe y’all need to take a couple deep breaths and not worry so much when I post about having emotions.

This post, this one right here, is my 721st post on this blog – I’ve been doing this for a while now, probably longer than most of you, and over the years, a lot of emotion has been captured. This is a chronicle of life. My life. My misadventures, as it was so aptly and recently named. For the last couple of years, that focus has been on academia and my journey through it. But I’ve made the conscious choice that I’m not going to hide in that ivory tower. I don’t want to be your stereotype of an academic, detached from the world and busy with abstracts. Let’s face it – academics, especially those who can put PhD after their name, don’t have the best reputation for being down to earth, or in touch with anything other than their work. Forgive me if I’m trying to avoid that.

Yes, I write about life in all its adventures, mis or otherwise. Sometimes it’s about school, sometimes about my family, cancer, life – even work. But give me some credit, people. I’ve been doing this for a long time, and everything you read is quite carefully filtered. I’m not going to say things that I wouldn’t feel comfortable saying to anyone over coffee and a danish. I’m not going to violate confidences, I’m not going to say something and regret it later – half the time, you read something hours, if not days, after I’ve written it.

I have a silver cuff bracelet. I wear it every day, for reasons I’ll explain some other time. On the front, facing me, stamped in quirky lettering, it says “breathe”. A reminder, to myself, to stop when stress overwhelms me, to pause even when life is good, and center, be. Breathe.

It’s good advice. I heartily recommend you adopt it, especially as it seems to be needed. Just breathe, people. Just breathe.

outed

I’ve been outed, the rumours are true, I write for more than just you,… whoa, apparently Joss Whedon invaded my thoughts, as I was about to bust out in some Once More, With Feeling-style lyrical shenanigans.

But yes, for those of you reading the editors blog of the American Journal of Bioethics, that would indeed be me that the lead editor just introduced. For those keeping track, that means I write here, there, at the Women’s Bioethics Blog, and the Medical Humanities blog. That’s a lot of blogging.

In actuality, though, I find it pretty easy to figure out what goes where – I just start writing, and the content directs me with where to post. The closest overlap tends to come on issues for the Women’s Bioethics Blog and the AJOBlog, and in that case, the tone (or “voice” for those of you plagued by a theory-heavy humanities background like myself) tends to tell me where to go.

…does this make me a blogaddict?

Hard Data Doesn’t Represent the Best Medicine

An article in the late February issue of Time Magazine on evidence-based medicine and why it might be a bad thing for doctors to fully rely on it reminded me of what has to be my hands-down favourite journal article, ever. Now four years old, it’s critique of evidence-based medicine is still one of the sharpest I’ve ever seen. From the BMJ website: Parachute use to prevent death and major trauma related to gravitational challenge: systematic review of randomised controlled trials.

A Dr. Gordon Smith and Ms. Jill Pell decided to “determine whether parachutes are effective in preventing major trauma related to gravitational challenge,” utilizing prominent sources to analyze the data available, sans any actual randomized trial. Their conclusion is an argument I’ve heard against evidence-based medicine many times now, but never quite so succinctly as this:

As with many interventions intended to prevent ill health, the effectiveness of parachutes has not been subjected to rigorous evaluation by using randomised controlled trials. Advocates of evidence based medicine have criticised the adoption of interventions evaluated by using only observational data. We think that everyone might benefit if the most radical protagonists of evidence based medicine organised and participated in a double blind, randomised, placebo controlled, crossover trial of the parachute.

– Kelly Hills

[ed: please welcome guest blogger Kelly Hills, student in the Alden March Bioethics Institute MS in Bioethics program and doctoral student in the AMBI joint degree program being “taught out” by Albany Med/UGC and UAlbany Department of Philosophy; Kelly blogs for the Women’s Bioethics Project blog as well as keeps her own blog about ‘academia as an extreme sport’, chronicles of the [mis]adventures of an academic in training to work in bioethics. She is also working at AMBI in the Scholar slot and recently co-authored a Nature Medicine review essay on transplantation in the black communities of America. Welcome Kelly, who joins Stuart Rennie, John Robertson and others along with your editors.]

Originally posted at the American Journal of Bioethics Editors Blog.