The Magic Pyramid
How to make medical decisions by leveraging 3 tiers of expertise
Here's the context. Let’s say you've been diagnosed with some hard medical condition or given a recommendation by your doctor to get some highly invasive procedure or treatment. You have no idea if the recommendation is right. You may not even know what some of the words they've told you mean!
I had to go through this several years ago. In my case it was Non-Hodgkin's Lymphoma - a highly aggressive cancer subtype. The initial treatment was unsuccessful. Likened to a house-fire it was 90% extinguished - not good enough. The cancer would grow back and I’d be right back in the same situation.
I was told to get an autologous stem cell transplant - more words that didn't register (…autologous? What is a stem cell? How does a transplant work?). I would likely live in the equivalent of a bubble, away from kids and people for on the order of 6 months. Moreover I had no idea how much such a thing would cost - that felt like something I’d get to later as this all needed to happen in a matter of weeks.
I was flipping open a horror book that I didn't want to read. I decided to try and understand the situation before diving into something this like this. For present purposes the treatment specifics don't matter. What I want to communicate here is an approach to get you quickly oriented to this new reality.
So how do we make informed decisions about topics that both (1) impact our lives in a real way, and (2) that we have no foundational knowledge about?
The typical response is to trust the doctor and the broader medical system. Most people will opt for some version of acceptance, and, possibly a second opinion. Getting a second opinion is necessary, but - depending on the complexity of your situation - may be insufficient. The reason is that you will then have a tiebreak required if the opinions differ.
First, I'll argue that - however uncomfortable this may be - you want to consider yourself the CEO of your healthcare. Ask yourself: how would a CEO (or any leader) that I admire make a hard decision? This may sound trite but it's a mental shift for most people in regards to making health decisions. It is you, not the doctor, that ultimately makes the decision about how this is all going to go. Please don’t discount the importance of this shift.
The second thing you’ll want to do is structure the decision that must be made. In my case I was considering 2 options: a stem cell transplant versus a novel treatment, via clinical trial, called CAR-T therapy (basically extracting my own immune cells and re-engineering them to have a strong affinity for the cancer cells).
This will depend on the situation but it could be a pros/cons list, or something a bit more involved (below is the probability tree I put together). Whatever method works for you it’s a good idea to get something down on paper.
This will yield two specific benefits: (1) you will be forced to clarify your own thinking - invaluable, and (2) you can then flash this artifact in front of people when seeking advice.
Third, gather the information you need. This is a bit involved so I’ll break it down in detail. Since this is an area in which you don't have expertise you'll want to lean on other people to help you. Here's the approach - I like to think of this as the magic pyramid.
At the top level are your Specialist doctors. In my case it was my primary oncologist. I also secured 3 additional opinions due to the complexity of my particular situation. Generally this group should be directly knowledgeable about the specifics not only of your diagnosis, but your specific history/records and etc. These will be the hardest and most expensive people to secure. Aim for at least 1 beyond your Specialist.
In the middle are what I think of as Adjacent experts. This group could be researchers in the field, people that can help you understand the biology, or innovations coming down the pipeline. For example I was fortunate to find several scientists working in companies aimed at novel treatments and clinical trials related to my diagnosis.
At the bottom are smart generalists. These are people that are great at making decisions under uncertain circumstances. In my life these people tend to be business founders or CEOs. But really the key is that you trust their judgment in regards to complex problems. Ask, are they structured thinkers who can separate emotion from rationality? If the answer to both is yes then consider leaning on them.
In regards to engaging the smart generalists here's a good way to frame the situation.
I want to run a scenario by you
State the situation
Now, imagine you were in me. How would you approach this?
If you do this well I can almost guarantee you’ll spot some magic. In my case I went from a somewhat rambling tangle of confusion covering everything from specific pathology receptors to how double blind clinical trial mechanics work, to a very structured framework. After about 4 or 5 such conversations the answer became clear. Let me rephrase that: the question itself became clear which then made the answer clearer to see.
What happened was all the extraneous elements slowly were pruned, leaving the information that I needed. For me it turned out that only one thing mattered - the speed of learning. I had 5 highly intelligent people with minimal background on my particular situation all independently agreeing that the main variable they would optimize for was getting fast knowledge. Speed was the variable that mattered. The faster I learned, the faster I could undergo follow-on treatments, should they be needed.
Finally, decide. Now that you're armed with the information you need to make an informed decision you can engage fully with the Specialist. It's time to drive your care forward.