A dear friend and colleague just wrote about his recent (and urgent) chemo and surgery. I won’t bore you with the details (the odds are you don’t know him), but one thing stuck with me that I do want to share.
As context, he discovered he had a rare and aggressive cancer, and this ventured into the unknown, with a sense of urgency. He fortunately had access to arguably the world’s best resources on this, but the ‘rare’ bit means that there wasn’t a lot of data:
“The treatment options were unclear because they didn‘t have enough real data to know what was most likely to work..I didn‘t know that the lack of data was so profound that intuition and personal experience, not data, would play a central role in the decisions.”
Collaboration was critical. There were two different domains in play, and they had to work and play well together. An oncologist and a specialist in the location were required to determine a course of action:
“If you‘re ever in a situation like this, having world-class experts is so critical! I could see the mental wheels turning, the quick parlay back and forth between the experts, leading to the suggestion…”
And, interestingly, his voice was an important one:
“Amazing how much the decision seemed to also rest with me, not just with the experts.”
They knew they didn’t know, and they wanted to understand his preferences. He had a voice, instead of being told what to do. If you don’t know, look for preferences.
This is what decision-making looks like when it matters and it’s new: open collaboration. This also reminds me of Jane Bozarth’s story about her husband’s situation, where again expertise and preparation matter. The details are not trivial, they’re critical.
And these situations are increasing. Whether life-threatening or not, and even with the power of data, we’re going to be facing increasingly challenging decisions. We need to learn when and how to collaborate. One person following a script (which should be automated) is increasingly less likely to be the answer. An individual equipped with models, and resources including others, is going to be the minimal necessary solution.
As someone with recent experience with early stage breast cancer, I can tell you there are a lot of similarities in what you describe as your friends experience and my own. If there are multiple options for treatments, the doctors often leave the decision up to the patient. This is in part because research shows that when patients are directly involved in care decisions the survival outcomes are better – but also, because as the patient, you are the expert in your body. You are the only one that know what types of side effects are more likely to be problematic for your situation (lifestyle, body type, etc). These are things that the oncologist cannot quantify – especially in the amount of time in which they have. Data helps you narrow your decisions, but it doesn’t make the decision for you. Also, data is deceptive – because there is LOTS of great data on 30 year old cancer treatments, and almost none on 10 year old treatments. So, the latest research and latest treatments won’t have a lot of literature or quantitive research to fall back on. That does not mean they are less effective, just that they are newer treatments. This is an anomaly that I wish someone had explained to me when I was making my treatment decisions.
Rebecca, thanks for the insight, and best wishes for your prognosis!