In the past year I’ve come to see medical decision making as one of the key crucibles in which participatory medicine plays out. We’ve blogged several times about shared decision making (SDM), and by its nature it requires participatory thinking.

A new book was published this week that adds substantially to my thinking: Your Medical Mind: How to decide what is right for you (Amazon), by Jerome Groopman MD and Pamela Hartzband MD. I’m taking the unusual step of endorsing it before I’ve finished it, to get it done before a travel binge. I’m posting this for two reasons:

1. I’ve read two chapters, “Regret” and “Decision Analysis Meets Reality.” They’re right on target with my experience and what I’ve read elsewhere, yet they add valuable new perspective.
2. I’m a huge fan of two previous Groopman books: Anatomy of Hope and How Doctors Think. Each profoundly affected my understanding of the physician’s world, increased my appreciation of the work they do, and gave me more ability to think about medical topics – to partner with them. (I haven’t read Hartzband before.)

My bottom line: this is a valuable addition for people who want to understand the process of medical decisions, from lifestyle choices to major surgery. And as always with Groopman, it’s a pleasure to read.

Why not just take the doctor’s advice?

It’s not apparent to most lay people that medical decision making is important to learn about. Our culture expects that all physicians have all the answers, and will pretty much all give the same advice. Physicians do indeed save vast numbers of lives, yet a similarly vast amount of literature shows that practice variation (inconsistency) is widespread (our posts here). The literature also shows that among a range of choices, the right choice often depends on your preferences – and doctors tend to guess wrong about our preferences.

For instance, in my own disease (mestastasized kidney cancer), 3 out of 4 patients never even hear about the treatment I got – high dosage interleukin-2. And I’ve personally heard doctors say that this is often because although it sometimes produces a cure-like result, the side effects are severe, sometimes fatal, so they judge that they shouldn’t even mention it.

As a participatory thinker, I ask: shouldn’t I be the one to evaluate that?

There’s a participatory cost containment aspect, too: interleukin is expensive but doesn’t last long. Every other treatment for my disease is lifelong. (What if patients were presented with the actual cost to US healthcare of each treatment, to consider if they want? But that’s another topic.)

Regret

I’ve often noted in SDM discussions that scientists’ analysis focuses on relatively dry factual considerations. This is, after all, science. But in the patient’s perspective – thinking humanistically – I’ve noticed two things that are never mentioned:

• A key reason for docs to tell us all the options is to never find ourselves a year down the road, discovering something we hadn’t been offered, and saying, “You knew about this and didn’t tell me???” (That happens more often than you might think.)
• I know there’s no certainty in treatment decisions, but I don’t want to find myself looking back and regretting what happened.

As always, Groopman makes his point with well chosen narratives. (Wish I could tell which parts Dr. Hartzband wrote.) Excerpt from the end of the chapter:

Marcel Zeelenberg distguishes between regret and disappointment. Disappointment is an unavoidable aspect of making difficult choices: Sometimes the results fall short of what we had hoped for. But disappointment carries none of the self-blame that typically marks regret….

As Northeastern’s Judith Hall has observed, a doctor who succesfully advises a patient facing uncertain choices must enter into the patient’s mind. … However, as we noted earlier, doctors usually aren’t formally trained in how to elicit a person’s preferences. …

The optimal process has been termed “shared medical decision making” between doctor and patient. … Sharing the decision with a doctor who understands your preferences means sharing the burden of choice, so you lessen your risk for regret.

Well said.

Why no Wennberg?

So I was surprised to see not even a tip of the hat (in the index or skimming) to the 3+ decades of work done by Jack Wennberg and his successors to develop the field of SDM, nor a mention of practice variation. To the newcomer SDM can sound like “helping your doctor” or the doctor surveying you, but it can be much more than that. In my experience patients are much more likely to step into the driver’s seat when they realize that doctors – even good ones – often disregard evidence on best practices. See this two minute CBS News video about practice variation, which links to the famous Dartmouth Atlas of data on variation.

The variation – unwarranted differences in treatment rates – is important, because all surgery – all hospitalization – includes risk of accidental death. (An analysis last year of Medicare records found that 1.5% of all Medicare admissions lead to accidental death, and there’s no evidence of much difference in other age groups.)

I don’t see how this risk can ethically be excluded from medical decision making. After all, in understanding your own medical mind, shouldn’t you consider “How important is it to not die accidentally in the next few months?”

A must-read

But readers of this blog already know that, so I assess this book for what it adds to our awareness of participatory thinking. As that excerpt said:

Sharing the decision with a doctor who understands your preferences means sharing the burden of choice, so you lessen your risk for regret.

This book adds substantially to our understanding of those issues, not from a data perspective but in understanding the real, raw, human feelings involved. From the parts I’ve read, Your Medical Mind is a must read for fully engaged patients and for the health proxies who help others make such decisions. It helps us make up our minds.