I enjoyed reading “Your Medical Mind” from start to end. The style of this book was light, but the content was not. Jerome Groopman, oncologist, and Pamela Hartzband, endocrinologist, are to be congratulated on their ability to write clearly about a difficult topic. They explain all aspects about making the right medical choices, in a way that is comprehensible to all.
What makes their book so enlightening is that Groopman and Hartzband illustrate each aspect of medical decisionmaking with real patient stories. In fact the entire book is largely based on interviews with scores of patients of different ages, of different economic status and with different medical conditions.
The authors also drew on research and insights from doctors, psychologists, economists and other experts to shed more light on forces that can aid or impede our thinking when we have to make those decisions.
For those who want to explore things further, there are 213 notes (appr. 80 pages!) and a bibliography of 20 pages at the end of the book.
The first chapter “Where am I in the numbers” deals… right… with numbers, or basic statistics. A topic that patients (and quite some doctors!) often find difficult to understand. This chapter explains Relative Risk Reduction (RRR), Control Event Rate (Basic Risk), Absolute Risk Reduction (ARR) and Numbers Needed to Treat (NNT) without hardly mentioning these terms.
The authors illustrate these and other principles with the story of Susan. Susan is a bit overweight and has a high cholesterol “of the bad kind” (LDL). Her GP concludes: “Since you’re active and already follow a healthy diet, I think it is time for medication. Fortunately, we have a good treatment for this [statins]. Here is a prescription. I’ll see you again in a month”.
But Susan doesn’t take the prescription. Why? First Susan is a doubter and a minimalist. She wants the minimum necessary, certain that “less is more”. For this is how she was raised. Second, Susan is very much like her father, who had a similar high cholesterol, never took a pill, yet lived a long, full and healthy life. Therefore she believes that for people like her these high levels of LDL-cholesterol are not necessarily dangerous. Third, she meets an acquaintance who suffers from debilitating muscle pain as a side effect of the statins.
When Susan’s GP hears that she decided not to take her medicine, her face tightens in concern: “It s very important to take this medication. You really need it”. She explains that statin pills will lower her risk of a heart attack over the next 10 years by as much as 30 % [RRR]. She adds that the risk of side effects is very small and often reversible.
Sinds 30% less risk of myocardial infarction (heart attack, MI) sounds impressive, Susan promised her doctor to reconsider her decision. As many other people she searches the Web for medical information. After months (!) she finds a government-sponsored link with objective patient information and a 10-year heart attack risk calculator. By entering all the requested information, she finds out that her basic MI risk is 1%. This means that 1 of 100 (or 3 of 300) people with this level of risk will have a heart attack in the next 10 years (background risk without taking treatment).
Let’s apply that benefit to a group of 300 women like Susan, where 3 of them would have a MI without taking statins. If we treat them all, we would prevent one MI—because we prevent 1 MI in 3 women (30% RRR). The other 2 women would still have a MI despite taking the medicine. The remaining 297 would not have had a heart attack even without the medication, so they wouldn’t have benefited from taking it. Thus 300 persons with this background risk need to be treated to prevent one heart attack. This is the number needed to treat (NNR).
Research has shown that people respond most profoundly to “stories”. Statistics can help to merge science with stories and fit single anecdotes into the larger context of all people who are treated. Statistics (and “evidence” in general) allows people to make an informed choice.
Susan’s story also illustrates that framing is very important. When you hear that a statin lowers your risk by 30% (RRR), it sounds as if you are at 100% risk and thus have a great benefit. But reframing the effect as a chance of 1 in 300 persons to have a benefit, may shift the balance for you. Susan concluded that the benefits didn’t outweigh the risks. Others may look at it another way: If there is a chance I could be the one person out of the 300 who avoids a heart attack, then the statin is 100% effective for me.
Pharmaceutic industries understand a great deal about how people decide whether to take a medicine. They frame information about benefit in the most favorable way and exploit the power of availability bias* using carefully crafted images and anecdotes, and giving implicit messages while marginalizing side effects.
Various studies and patient stories discussed in the book clearly show that patients choose differently when they are given clearer information about benefits and risks. Surprisingly, their choice often differs from the treatment options the experts see as “best”.
As we have seen the attitude of the doctor and the way he/she frames the medical information also matters. Susan’s GP framed the information in such a way that it overemphasized the benefits of treatment with statins, the option she saw as “best”. This GP later refused Susan as a patient, because she didn’t follow her instructions. Her next doctor: “It is the old paternalistic way of dealing with patients. Ultimately you know, patients have final control of what goes on. (….) It is not like you just go: “Boom, boom, boom, here is the prescription”.
The irony is that most people will accept the default option: they assume that what is routinely recommended is best. If it turns out differently, however, they may feel strong regret. In contrast, if the risk is taken into account beforehand, people may experience side effects less seriously. Furthermore people have a tremendous ability to adapt.
The book learns us the differences between believers and doubters, maximalists and minimalists, naturalism and technology orientation and the importance of availability bias*, omission bias*, decisional conflict, loss aversion*, expected utility*, autonomy and control.
Our preferences about treatment, may depend on our personality, the way we were raised as kids and our previous experiences. This applies to both patients and doctors. As an example, the authors explain why one of them became a believer and a maximalist and the other a doubter and a minimalist. Until some bad experience with an aggressive and unsuccessful surgery made the maximalist a bit more risk-averse.
The book offers several examples of doctors advocating treatments on basis of their beliefs or expertise. A surgeon wants to cure prostate cancer by surgery while focusing on the unacceptable sides of radiation, while radiation therapists emphasize unacceptable side effects of surgery. Yet others make a case for “watchful waiting”.
More than before, I realize that choices are highly personal and that I, too, have my own preferences. For instance, I tend to favor watchful waiting in case of low risk prostate cancer, possibly because I am a doubter in most respects, and have worked with Prof Schröder who supports watchful waiting. However, for some men this watchful waiting may become watchful worrying and they might just prefer to get the cancer out. Even at the cost of sexual and urinary function.
Interesting is also the notion that “the best” doctors or the “most renowned hospitals” may not always be the best for you. An expert who looks totally bored, saying you’re a “typical case” may give you an anonymous feeling. A nurse’s silent shrug when you express dismay about losing a lot of weight, may reinforce this sense. This can be a reason to clinch to your own community hospital and not choosing a large, bustling cancer center.
Another AHA moment for me was about end of life decisions, described in the touching chapter 8. The authors describe that nearly half of the patients were inconsistent in their wishes about what therapies they wanted, whether they had completed a living will or advance directive or not. This is because they often can’t imagine what they will want and how much they can endure when their condition shifts from healthy to sick and then to even sicker. On the other hand rigid sticking to directives may pose a dilemma to the carer. Are resuscitation and intubation allowed as temporary interventions if not meant to artificially sustain life?
In short, “Your Medical Mind” is an interesting and instructive book, that is not only of value for patients and carers, but also for doctors ànd future patients (and remember everyone is a patient sometimes).
Does this mean that “Your Medical Mind” is an “essential companion that will show us how to chart a clear path through this sea of confusion” as the book flap and introduction promise?
And is it true that the answer to the question “How do you know what is right for you?“ lies not with the experts, but within you?”
These seem too ambitious claims.
For a good decision process knowing your preferences and the forces that can influence your choice, is not enough. A good health literacy is important too. Apart from a chapter that deals with statistics, this book offers little info on that topic.
What about minimalistic naturalists who choose a homeopathic treatment for cancer? This choice might fit the medical mind of those patients, and of course they have every right to make their own decisions, but is it truly “right for them”?
I get the impression that the authors underestimate the value of “evidence”. They are very skeptical, not only about pharmaceutical companies, but also about recommendations in guidelines, whether they are evidence based or not.
In the examples all treatments are almost equally effective. This leaves a grey zone for where there is no black and white answer about when and how to treat. Often, some treatments are superior to others (for certain patient groups).
Thus, the authors give little attention to the importance of objective medical information itself, as a basis for decision making. They also pay no attention to shared decision making, as e-patient Dave emphasizes in his review.
Still, I loved the book. It completes my knowledge of EBM and information sources.
It also made me curious about another book by Groopman “How doctors think“ , which has rapidly risen to the top of the New York Times bestseller list since its release in March 2007. Dr Shock just reviewed it. Perhaps we should exchange our books….
Title: Your Medical Mind
Author: Jerome Groopman, M.D., Pamela Hartzband, M.D.
Publisher: The Penguin Press
Book: Hardcover, 320 pages
- availability bias: overweighting evidence that comes easily to mind.
- loss aversion: the reluctance to risk side effects for what is pursued to be a small benefit
- expected utility = [probability x outcome) X (utility of outcome)
- omission bias: avoiding treatment because of anticipation of regret
- A Book That Will Change ‘Your Medical Mind’ (npr.org)
- Being a patient is an unforgettable form of medical education (kevinmd.com)
- Individual Medicine, Best Practices, Mass Medicine (aleksandreia.wordpress.com)
- An Epidemic of Information (online.wsj.com)
- The secrets of medical decision-making (salon.com)
- Compassionate Medical Care Benefits Professionals, Patients, Students and the Bottom Line (psychologytoday.com)
- How much physician guidance do patients want with medical decisions? (kevinmd.com)
- The Best Study Design for Dummies (laikaspoetnik.wordpress.com – 2008/08/25/)
- Designing a Smarter Patient (online.wsj.com)
- Statins for Primary Prevention: the Debate Continues (forbes.com)