As you probably know if you’ve been reading this blog (or my more frequent private blog), I’ve been dealing with the unexpected guest of breast cancer this year, and yesterday began my second round of chemotherapy. In the medical system I am learning in interesting and frustrating ways about people’s difficulty (including mine of course) navigating the unknowable place of uncertainty complexity. In this blog I’ll be playing across Snowden’s domains, and for a refresh, you can check out my writing about him here, or listen to him describe his model here.
Case in point. I asked the chemo nurse a set of questions yesterday about what patterns she sees in patients like me. As is true in these chemo conversations, she just stressed that each person has her own journey and that no two are alike. Perfect complexity grounds. So I explained I wasn’t wanting her to predict to me my own outcome, but to talk about a kind of range of patterns she had seen so that I could just have a sense of some of the inclinations of people’s experience. Does a fairly easy first round (which I have had) tend to lead towards a relatively easy second round? Or is the beginning inclined to be easy for many people and the second round more often trending towards difficult? The nurse, unused to ideas of inclinations, returned to the fact that she wouldn’t be able to predict anything with certainty—she apologized for this: “You just can’t know for sure.” I explained that I totally understood that certainty was not an option. Perhaps she could just think with me about patterns. Nope. She told us she didn’t see patterns—just individuals, each having her own experience in chemotherapy. “Everyone is unique.” Fair enough in its own way, but also not really my question.
Those of you who follow our work will know that “seeing systems” is one of our core habits of mind, and in this conversation, I was reminded of how hard we have to try to see those systems—or else we have all noise and no pattern; we can learn nothing, really, if we decide that “everyone is unique” and thus no patterns are notable. In an unpredictable case, like chemo, like culture change, like entering a new market with a new product, if we can’t see patterns in the unpredictable system, we have nothing to go on. If my nurse waits until she’s sure, she will never be able to offer guidance to anyone. And so she couldn’t.
And then there’s the complicated space that sometimes looks simple. Last time I was given two different instructions for one of my post-chemo medications. I followed the one I liked better (=less medicine) and I told the nurse this time what had happened. She apologized profusely for the confusion, explained that nurses almost always sound certain, even when they’re wrong, and told me to follow the other protocol (=more medicine). (Of course she laughed that she was sounding certain in this case.) I tried to understand why. It was “research-based protocol.” But what exactly was the medication supposed to do? It was helpful for my symptoms. But since I didn’t get it last time and I was fine, what was the point of getting it this time? It was research based. She brought me a card where the dosage was written out and printed on heavy blue paper. Very convincing evidence. This is one of those areas where Snowden talks about how “best practice” in a simple space is a help, but it a complicated space just pisses people off. Yep. In a complicated space, people need options and they need to understand reasoning. Best practice isn’t good enough. Ironically, a sense of the range of good practice with choices and some sense making around it is much more helpful.
We want to be in the certain space, and when we leave it, we struggle to know where to go next. Cancer, alas, straddles the complicated and the complex, wandering in particularly dangerous times into the chaotic. It is very rarely simple. Unless we can figure out to talk across these different domains, patients will be confused and unsettled—and they’ll lack access to important and helpful information. But we patients can learn to ask different questions—as I did with her—and perhaps in that way we can help each other grow, while watching cancer shrink.
ps the picture today is dawn over Kapiti island last week. We have certainty the sun will rise, but it is not clear when dawn will be a magnificent event. Certainty and complexity, entwined…