Blandine* is a beautiful, playful seven-year-old girl, who doesn't seem to notice the one thing about her that everyone else sees first: In the side of her head, in her infratemporal fossa, she has a large mass (What am I saying? Does anyone in this country have a small mass?). It extends to where her carotid artery follows its convoluted path into her brain. It impinges on five different nerves as they exit the skull on their way to her face, her tongue, the rest of her body. It, quite literally, goes for her jugular.
But to look at her, you'd never know. Her face is asymmetric, for sure, but that's about it. She's a happy seven-year-old.
So, explaining to her father that the surgery we were proposing might result in some very serious untoward events was difficult. But more than that—it destabilized the very core of the way I think about surgery. Not to put too delicate a point on it.
See, it made me question what it really meant to give informed consent.
Until Blandine, this was obvious. You go to the doctor, and she recommends a procedure. You expect that her next ten minutes are going to be spent explaining everything that could go wrong, scaring you to death with words like "cardiovascular compromise" or "cerebrovascular accidents." And then, in a perverted sort of altar call, she'll place a single sheet of paper in front of you, crammed with more words than the constitutions of some countries, and ask you to sign it. You will, probably without reading it, because that's what you're supposed to do, because in doing so you've declared that you've been informed of every possible risk, benefit, and alternative, and you still want to proceed with the surgery. Because it has become your decision.
The reasons for this are legion. There are the obvious, legal ones ones. There are the ones that place doctors firmly at fault: we want to protect ourselves, cover our rumps, in a completely self-serving way. We think that if the patient makes the decision, then we're absolved of all culpability if anything goes wrong (this is obviously erroneous).
But then there are the deeper, cultural ones, ones that I'd never thought to assume didn't exist everywhere. And it's on these that the entire concept is predicated. Very early in medical school, we learn words like autonomy and non-malfeasance and paternalism (and its more politically-correct cousin, parentalism; amazing how much stock we place on anagrams). We learn that, as doctors, we are supposed to tell you everything that could go wrong. We're supposed to give you as much information as we can. And you are the one who's supposed to make the final decision. We aren't to be paternal. You are to be autonomous. Obviously. This is so deeply ingrained in us as to be self-evident.
As it turns out, this self-evidence is, well, not self-evident. It's firmly based, instead, in the fierce individualism of our Western cultures.
After every sentence, with every enumerated risk, Blandine's father simply smiled at me and told me that she was in God's hands. No matter how strong I made my wording, no matter how bleak a picture I tried to paint, he was unwavering in this assurance. God was in control. God would bring his daughter back to him. God would make sure she was able to speak and swallow and move her face and stick out her tongue. God wouldn't let anything happen to her. This wasn't some blind, uninformed faith, either. God was really going to do this.
I found myself flummoxed. I wanted to take him by the shoulders and shake him, shake that assured smile off his face. Yes, I wanted to say, God is in control, but don't you see? Don't you understand? She might not...! He might not...! She might die! Do you hear me?
As missionaries, our objective cannot be to change the culture of a people. We do a tremendous disservice when we start believing that our way of viewing the world is the only correct way. But what happens when culture flies in the face of your own self-evidence? What if the very core on which you've built your day-to-day interactions with your patients—autonomy, self-determination—is whisked out from under you?
What if these concepts don't even enter the mind of the person you're talking to—and his overarching motifs (innate trust, for example, or determinism, or even fatalism) are themselves anathema to your Weltanschauung? Who is right? Whose worldview wins? Shall the twain ever meet?
I don't know.
I am happy to report, though, that Blandine's father's faith was borne out in the way he so inexplicably expected it to be. And in doing so, he challenged my reliance on autonomy—either as abdication or as deeply-held worldview—possibly irreparably.
And with that, I'm finishing my last post from Africa. I leave on Sunday. Thanks for following along.
Until next year.
