Science seeks certainty. The problem in medicine is, the body is complex and our knowledge is incomplete. People who want certainty – physicians or patients – are kidding themselves. And if we expect docs to be perfect, it’s a setup for dysfunction.
Sometimes I hear of patients who believe their physicians dissed a proposed or experimental treatment that’s not understood. (I’m not endorsing wacky treatments here – I’m only talking about uncertainty.) Yet, we’ve always had remedies whose actions aren’t understood; we just know they work. Even aspirin was used for a century without understanding it. And here’s a line I read today:
“Should I refuse my dinner because I don’t understand the digestive system?”
It’s by Oliver Heaviside (1850-1925), about whom Wikipedia says, “Although at odds with the scientific establishment for most of his life, Heaviside changed the face of mathematics and science for years to come.”
The quote is in the Pulitzer Prize winning book The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee MD. Emperor is cancer’s “whodunnit” story, centuries of efforts to understand it and treat it. And not in that order.
In the 1900s brutish early treatments (no more sophisticated than leeching) became more scientific. Inevitably some researchers then urged that we not try new treatments on humans until we know exactly what cancer is – basically, don’t move forward until we’ve got it figured out – with confidence. But meanwhile, people were dying.
As I wrote three years ago on my personal blog:
On the fringes of medical knowledge, lives are at stake and medicine doesn’t have the answers yet. What do you do?
In my own case, my oncologist says there’s a 50% chance my disease will return, and there’s no way to predict which one I’ll be.
So we live, with uncertainty.
Participatory patients and physicians alike should accept that medicine is uncertain. Jerome Groopman MD’s excellent How Doctors Think even says 10-15% of all diagnoses turn out to be wrong, on autopsy. Fittingly, his epilogue it written to the (engaged) patient – how to discuss things anew with your doctor when the treatment isn’t working.
Science keeps pushing toward certainty, and disease doesn’t wait. Perhaps if we acknowledged the difficulty of diagnosis, and if more physicians were allowed and willing in our culture to express doubt, patient questions would be welcome and we could work more collaboratively.
By the way, the Wikipedia article on Heaviside has a different version of the quote: “I do not refuse my dinner simply because I do not understand the process of digestion.” Which to believe? Googling says the Wikipedia version is on 1,310 web pages and the book’s version is only on three.
What do you do in the face of uncertainty? How many sources do you check before you decide to move forward?
Tom Ferguson, MD, the founder of e-Patients.net, embraced uncertainty. For years I challenged Tom about his open mindedness. It challenged everything I had learned in grad school studying pharmacology. I wanted randomized, double-blind, placebo-controlled trials that would answer the question Yes or No definitively.
Now I know in my heart, brain and soul that Tom was right. One need go no further than the latest furor over PSA and prostate cancer to realize that uncertainty reigns supreme. But even when it comes to things we know we know (cholesterol causes heart attacks) there is amazing uncertainty.
Dave has hit on something that Tom would have loved. We only wish more physicians would recognize that many of the things they are absolutely sure about may not be as concrete as they have been told. Mark Twain was reputed to say, “It ain’t what you don’t know that gets you into trouble. It’s what you know for sure that just ain’t so.”
And when someone asks you “Who’s Your Daddy?” The answer is Tom Ferguson…the intellectual founder of The Society of Participatory Medicine…a kind, gentle physician who embraced uncertainty.
For those who don’t know, Joe Graedon (and his wife Terry) are SPM co-founders, editors of our Journal of Participatory Medicine, and among the earliest “specimens” of e-patient behavior Doc Tom spotted in the 1990s. Their citizen community on PeoplesPharmacy.com was the first group ever, if I recall correctly, to persuade the FDA to take a second look at its belief that generics with the same formulation are biologically as effective as the original: patients in the community reported significant differences in their experience. How’s THAT for uncertainty?
I should have mentioned that Joe and Terry noted the 10-15% misdiagnosis number in their new book, which is about avoiding medical errors. It has a ton of additional “wise up” advice.
Uncertainty is the norm; true certainty is rare. It doesn’t matter how many clinical trials have accumulated, there is a middle ground where what science presents and who you are and how your body handles treatment need to be weighed.
When women begin cancer treatment for breast cancer the norm (following surgery for tumors involving lymph nodes) once was a systemic bath in Adriamycin/Cytoxin. As evidence continues to accumulate we will reach a point where therapy will be determined by biological markers and the AC regimen will be considered barbaric. Evidence shifts. Certainty wobbles.
A physician can only tell you what happened when X-number of patients took a particular therapy. Most of the time they were (in cancer clinical trials) very, very ill to begin with. That’s where a physician with deep knowledge and some understanding of you can extrapolate that data and make recommendations. I was fortunate to have that kind of oncologist; I’d done my homework so I knew what he was talking about.
Dealing with uncertainty and cancer is part of healing; it is part of life. I also had a 50% chance of recurrence some 13 years ago. But I am not a statistic. Data provides guidelines, not certainty.
Thanks, you gave my thinking a jumpstart this morning. Better than coffee.
Jody
Woah, better than coffee?? THAT’s an awesome compliment. :-)
So, all: we here are raising the awareness of e-patients and others who read SPM’s sites. Next puzzle: how can we reach the docs who don’t get it?
Some have told me they were trained that it’s their JOB to convey a sense of certainty. I can understand that (I myself feel better when my trusted docs are reassuring). But that wouldn’t explain docs who RESIST questions like “How good is the evidence? What are the chances this is wrong?”
What can we do to improve this issue – not by being righteous (which never works) but by doing something effective?
(Until we achieve that shift, I agree it’s essential that we keep training consumers.)
Dave, you asked: Next puzzle: how can we reach the docs who don’t get it?
We don’t! You can never teach a dinosaur how to become a mammal.
Trying to reach, educate and make paternalistic medicine docs see the light is as hard as convincing someone convinced of the value of creationism that the Darwinian theory of evolution is the only theory based on replicable data.
We just have to bypass them and wait for their extinction. It will happen sooner than we realize.
My daughter has been fighting a rare autoimmune disease for almost a year and a half now. As most doctors have only seen a small number of patients (if they have seen any), it has been a first class lesson in uncertainty. It seems that there is not really any certain treatment plan although several physicians are striving to create a standard treatment protocol.
Thankfully, she was diagnosed in this age as I have talked to some parents and patients who were diagnosed years ago when they had no information network like there is today. Thankfully, I found CureJM which has a ton of information and more importantly a network of people who could say, “yes we had that” or “no that sounds odd.” They also taught us lifestyle things like how to interact with schools on what this disease means and how to help her function.
Uncertainty is definitely a part of medicine, and e-patients can help pull together the information to create a path that is much clearer than before.
> we found CureJM
Ah: another example of patients & families connecting online, as recounted in Doc Tom’s e-patient manifesto (at top right of this site). This is a new one – thanks!
Note that a group like this adds nothing to the exploding healthcare budget, yet it adds tremendous value to the ultimate stakeholder: the patient and family.
Amy, would you say the people in this community are fully aware of the uncertainty issue?
Yes, I think the CureJM group is much too familar with uncertainty. The three main experts in the disease are very comfortable saying that they don’t know but that they are trying to find answers through research. It is a fantastic group and has tremendously made a difference in the care of my daughter and on the survival skills as a family. Great post!
I value most the doctors that say “I don’t know” often. They are honest with me and themselves about the uncertainty of medicine and their knowledge.
Years ago we used to be asked to only trust MDs, and only certain websites. There are still places that go with that philosophy.
If you do not appear certain, some patients will quit. It’s very difficult to express all the nuances adapted to the patient’s level of understanding and to the realities of too little time and tons of regulations.
Your post from three years ago helped me make the shift and understand the reality that we really don’t know much. Thanks, Dave.
Ileana,
> If you do not appear certain, some patients will quit.
Yes. My nurse practitioner taught me years ago something that I guess all clinicians need to master: different people have different appetites and different tolerances for information. And as difficult as it may be, if we want care to be patient centered, I guess we need to prioritize presenting the info people want, in a way they like.
People will surely say “But who’s going to pay for this?” Perhaps the answer would come from buying fewer proton beam machines in markets that are already oversaturated.
It’s very difficult to express all the nuances adapted to the patient’s level of understanding and to the realities of too little time and tons of regulations.
On Twitter, SPM member and professor @Berci responded:
You combined two very important questions.
1) The uncertainty of medicine: no question about that, we can do nothing else but to keep on working hard in science and EBM. [evidence-based medicine]
2)number of sources to check: I believe we must help e-patients and physicians learn to assess the quality of medical websites
======
Actually, @Berci, the third issue – the BIG one IMO, in creating change, showed up in subsequent tweets: how to awaken everyone – patients and clinicians and policy people and insurance and all – to this reality.
I’d say there can’t really be any participatory medicine if everyone’s not clear about this. After all, what good does it do to have a collaborative process around a shared delusion?
Or am I missing the target? Anyone?
@GABioBank tweeted: “Have you seen the @GeneticAlliance “Trust it or Trash It” tool to evaluate health info? http://trustortrash.org”
It’s a pretty slick decision tool – you click on the three colored boxes (Who said it, when did they say it, how did they know) and it walks you through some advice.
Doesn’t social media just rock?? I blogged something at 1 in the morning, off the top of my head, and 11 hours later we have all this juicy discussion going on. Thanks, all.
Dave- Interesting that you use counts of hits in Google as part of your decision process. Determining truth is not a democratic process, and it’s much more likely that Wikipedia is a vector for disseminating information (true or false) than a bastion of truth. Many people were ready to believe that neutrinos traveled across Europe faster than light (and made up a bunch of BS for how it could happen) until someone figured out the relativistic correction factor for GPS clock synchronization. In Parkinson’s disease, a therapy was recently discredited by the FDA based on a re-analysis of the raw data, which exposed flaws that the scientific articles on the the therapy (in NEJM and Lancet, no less) failed to identify — and could not have identified without a team of statisticians and access to the data.
Medicine is complex because it is incredibly difficult to replicate findings, and so there it requires a lot of faith in the work of others. This has left medical science subject to quite a bit of abuse, as has been addressed elsewhere in this blog.
Great stuff!
Well done, Dave! Thanks for shining a spotlight on a concept that’s crucial to the success of PM. Any physician who refuses to embrace uncertainty is indeed a “dinosaur” with an outmoded idea of what it takes to win patients’ respect.
Doctors no longer have to be as infallible as the Pope. With an ever-increasing number of patients educating themselves about their conditions, it’s harder for any physician to pretend to know all the answers. Rather than see that as a threat, docs need to realize that they’ll win more respect if they admit their limitations and show a commitment to finding the best answers in the face of uncertainty.
For those who don’t know, Kathleen is managing editor of our Journal of Participatory Medicine. Hi Kathleen – great to see you here!
> they’ll win more respect if they admit their limitations
Isn’t it more precise to say “the limitations of science”? IMO the ideal participatory physician has the wisdom to guide us through the uncertainty – to me an unrealistic certainty is a far bigger limitation. :-)
Hi Pete – yes, we’ve previously discussed the reality (shocking, to me) that most peer reviewed studies are never replicated by another lab with different experimental subjects. This, as we’ve discussed, opens the door to fraud, coincidence, and “publication bias.”
In your work at Parkinson’s Foundation you deal a lot with all the aspects of this, in a disease that’s mostly intractable today. Do you have any advice on how to raise public (and clinician) awareness of this issue?
I hear SO many complaints and concerns about malpractice, with TV ads inviting lawsuits on “failure to diagnose,” etc. Seems to me physician leadership would be striving to create a better educated public, in concert with patient advocacy organizations.
There are no guarantees in medicine, other than that there are no guarantees in medicine.
Life = uncertainty. Act accordingly.
Clinicians – and patients – who demand certainty should remember that the only true certainty, the real bankable one, is that we will all die. Maybe not today, maybe not from [insert condition here], but ultimately life will cause death.
What’s required is a mutual level of acceptable risk: clinicians willing to try something new, patients willing to surrender to the process.
The outcome is always a journey. All of our journeys have the same ultimate destination. What’s uncertain is how creative/brave/curious we can be on that journey, while recognizing that science is an ongoing/never-ending process of discovery and insight.
Ready … set … GO.
Yeahbut, Casey, just saying that people should accept uncertainty isn’t useful, IMO. How do we make that a reality? How do we shift the culture?
Maybe I have a shorter fuse on this subject because my very SURVIVAL depended on beating the odds. So when I did survive, it brought a trial-by-fire awareness that nothing’s certain. (Along the way I learned that ~1% of cancers disappear spontaneously for no apparent reason.)
My biggest difficulty, personally, is with the myth I picked up somewhere that physicians are rigorously trained in the scientific method and the nature of knowledge.
But I know they’re smart, so where there’s a gap in the education, I want to help correct it.
Understanding what risk means, and that there is great uncertainty in medicine and health is important for all to learn. I’m glad and grateful that you are writing, speaking,and helping the education process for us all.