Like it? Share it!

Banner


Reason Rally Logo
 

Sign up for news and updates!






Enter word seen below
Visually impaired? Click here to have an audio challenge played.  You will then need to enter the code that is spelled out.
Change image

CAPTCHA image
Please leave this field empty

Login Form



Trust Me, I'm A Doctor PDF Print E-mail
Swift
Written by Dr. Steven Novella   
Saturday, 21 January 2012 09:00

Recently in the comments to a post on Science-Based Medicine we have been having a discussion about the nature of expertise. The post was superficially about tonsillectomy, but really about the relationship between the role of the physician as a medical expert and the role of the health care consumer in being well-informed.

The article was a criticism of a post written by Seth Roberts in which he argued that patients should do their own research (meaning review of published research) and not rely upon the medical establishment, who is biased, self-serving, and ignorant of basic science (according to Roberts).

As you might imagine, I took exception to that characterization. What Roberts actually provided evidence of (and continued to do so in the comments and he dug himself in deeper and deeper) is the folly of non-experts trying to be their own experts, especially in an important area such as health care. 

This issue is worth exploring further, as the relationship between doctors and patients specifically, and experts and their clients or the well-informed public in general, has become complicated in our modern society. Conventional thinking within the culture of medicine is to take a thoughtful and nuanced approach to this issue. This contrasts sharply to Robert's straw man - that deferring to experts is the equivalent of "following experts blindly."  

As skeptics who advocate scientific literacy and critical thinking, we certainly recognize the value in being well-informed. The medical community also recognizes that value of having well-informed patients. Knowledgeable patients are more compliant with their treatments, they take better care of themselves, and they are better able to provide informed consent.  

The old model of patient care (called paternalism), where doctors simply told patients what to do, and even "protected" them from unpleasant information, are long gone. The standard of care today is the cooperative model, which is a good model for the use of experts in general. In this approach physicians are under obligation to provide reasonable informed consent to patients. This stems from a respect for patient autonomy - the right of every individual to control their own destiny.  

In the cooperative model patient education is highly valued, as patients become partners in their own health care. Doctors, nurses, and other health care providers are expected to educate patients about their illness and the various management choices. The role of the medical expert is to help patients understand the state of the scientific evidence, and to provide the benefit of their own experience. But the patient (or their parent, etc.) makes the ultimate decision.  

We live in world, however, where patients can easily bypass the medical expert, go online and attend "Google University." It is therefore very tempting for patients, especially if they have been told to distrust medical experts, to do their own online research and substitute their own reading of the literature for the prevailing opinions of the medical community.  

It is far better for patients to seek out reliable sources of information online to supplement their education about their illness, but to discuss what they find with an expert who can help them put it into context. It is also important to recognize that there is a great deal of misinformation online - some well-meaning and some malignant.  

Understanding the medical research on any specific question is very difficult. Anyone who reads Science-Based Medicine regularly will know that there are different kinds of evidence, different ways to look at the evidence, different ways to statistically analyze data, and many types of considerations to take into account. On complex questions where the data is unclear, experts will disagree.  

It should also be clear that on medical questions where the evidence is rock solid, non-experts trying to understand the evidence for themselves (perhaps through the veil of an emotional issue or ideology) can come to conclusions that are in stark contradiction to the expert consensus, and in some cases are flagrantly absurd. There are entire online communities dedicated to misunderstanding and misrepresenting the state of the evidence, such as the anti-vaccine community.  

Understanding how to read the medical research, and understanding the details of the research in one area, literally takes years of dedicated study. This should not be surprising, and is the same for any complex area. Analogies help make this point more clear - would you presume to enter the cockpit of a commercial jet and ask to fly the jet because you read a magazine article about it?  

We have no choice but to defer to experts in countless areas of our life. Our civilization is simply too complex for anyone to master every aspect of technology and expertise.  
What I feel is the optimal approach to take is to make the effort to be "literate" about those areas that are important to your life - medicine, finance, legal, everyday technology, etc. Understand at least the basics so that you can discuss important issues with experts and understand their advice. You also need to understand which professions are science-based and legitimate and which are not.  

But do not try to be your own expert when in fact you are not. This does not mean following experts blindly. It means not following yourself blindly.      

 

Steven Novella, M.D. is the JREF's Senior Fellow and Director of the JREF’s new Science-Based Medicine project.

Dr. Novella is an academic clinical neurologist at Yale University School of Medicine. He is the president and co-founder of the New England Skeptical Society and the host and producer of the popular weekly science show, The Skeptics’ Guide to the Universe. He also authors the NeuroLogica Blog.

Trackback(0)
Comments (9)Add Comment
...
written by sfdyoung, January 21, 2012
Many of my friends profess to be very dissatisfied with Western medicine, and are firm adherents to alternative medicine. Because of them, I've tried a lot of CAM (homeopathy, acupuncture, chiropractic, alphabiotics, therapeutic touch, Chinese herbs), with the expected placebo-based results. I, on the other hand, am more than satisfied with Western medicine. Over the last ten years, I've been very fortunate to have encountered some wonderful medical practitioners (all of them men, most of them MDs, but one of them a very fine nurse practitioner). They've discussed their findings with me, covered the risks, and explained treatment options. In all cases, they've left the final decision to me. I learned from them what cooperative medicine is - if they'd all been the paternalistic type, I probably would have gone along with that quite happily, not knowing of any alternatives.

As it is, after we discussed an issue, I would go home and enroll in Google University to find out a bit more, making an effort to find credible information and stay away from the fairy dust sites. If what I learned was consistent with my doctor's advice, I'd make my decision. If I learned something new or contradictory, my doctor and I would discuss it and go from there.

I find it humorous that the internal medicine doctor I've just started seeing, a fairly young Hispanic woman, is very close to the paternalistic camp, though perhaps her approach might more accurately be called maternalistic. Up to this point, it's been over lifestyle issues, not medical ones, and so far it's been sort of charming to be so gently and lovingly scolded for consuming drugs and alcohol. I'm curious to see how she reacts if any medical issues do come up.
report abuse
vote down
vote up
Votes: +5
...
written by cubiculum, January 21, 2012
Relying upon experts in a field is important, especially with so much misinformation out there. Some guy who Googles statins, spends 10 minutes reading about how they are evil and cause cancer, and then decides to stop taking them as a result isn't really taking a skeptical or science-based approach to medicine. I think this situation is representative of many folks who consider themselves "informed" after doing "research" and it's important that these folks talk to their doctors so this misinformation can be corrected.

I do find it odd, however, that someone having a degree in medicine is the bar by which we measure their reliability in making decisions based upon medical research. I have access to the same texts, studies and information that these doctors have (albeit sometimes for a fee). I read medical journals for fun, and I understand the subject matter that I've become educated about very well.

I'm certainly not the average "educated" patient. In fact, perhaps I'm entirely unique in my pursuits. I can just as easily be educated (as long as I'm willing to spend the time studying accurate, science-based sources rather than pseudo-scientific bullshit) about my medical care as my doctor. In fact, in my experience, I can be much more well-informed because I can spend my time researching specific areas of interest as opposed to my physician who needs to maintain a breadth of knowledge about a variety of conditions and treatments.

Doctors in my past have recommended acupuncture and meditation to deal with various health conditions. Should I trust these "expert" opinions when I know damn well that these recommendations are bullshit? Of course not.
report abuse
vote down
vote up
Votes: +11
...
written by cuppy, January 21, 2012
as someone that has had a serious illness, cancer, I found it was never just one doctor I was dealing with. The treatment I had was all a "group effort" The personal physician, the radiologist, the surgeon, and eventually a "tomor board" where a group of doctors as a team decided on my best course of treatment. I was involved, but I also well informed by my caregivers. Even the tumor board was presented to me as "the best way we know how to deal with a cancer like yours where there is not one clear course of treatment". It was a GROUP of doctors making their best reccomendation, but no promise it would be the correct one. I felt very comfortable with that. I go to a medical facility near an area of very strong alternative medicine and "woo". (it's usually well to do areas that can afford alternative care, since insurance doesn't cover most woo). My own doctors have horror stories of well to do women that find lumps, and decide to try "alternative treatment" before finally coming in to a real physician. As the radiologist put it, "they believe mammograms cause cancer, or if they think they have cancer, the radiation will make it grow faster." The internet is a dangerous thing (for instance at one time radiation doses in mammgrams were much higher). Western medicine isn't a "fall back" choice when alt med doesn't work. Time is a factor in many illnesses, including my cancer. I'm glad to say that the tumor board and all my caregivers helped me make choices that worked out very well. I give them great credit and thanks, for all the years of hard work and education and experience that allowed them to make the right choices for my illness.
report abuse
vote down
vote up
Votes: +15
...
written by garyg, January 22, 2012
> It is therefore very tempting for patients, especially if they have been told to distrust medical experts, to do their own online research and substitute their own reading of the literature for the prevailing opinions of the medical community.

And then they often self-medicate because there are so many alt med options out there that profess to treat serious diseases. The worst of them don't even carry the often-found "quack Miranda warning" that said product is not intended to diagnose, treat, cure, or prevent any disease.
report abuse
vote down
vote up
Votes: +4
So true!
written by rosie, January 22, 2012
"online communities dedicated to misunderstanding"

That is so true: people (like antivaxers) read up scientific stuff they don't understand, let their ignorance persuade them into a ridiculous position and then devote their time to not being proved wrong.
report abuse
vote down
vote up
Votes: +15
@sfdyoung
written by Matt_D, January 23, 2012
Your doctor scolding you for health-harming lifestyle choices isn't paternalism, it's due diligence. Paternalism would be lying to you or forcing you in some way to change, rather than simply telling you you'd be better off doing something else.
report abuse
vote down
vote up
Votes: +7
...
written by Caller X, January 24, 2012
I had to get a broken leg fixed a few years back and the anaesthesiologist went into great technical detail about each of the three or four substances he was giving me, basically talking to me like I was a doctor, and when I told him that I had lost him early on (just as the valium was kicking in) he said "I do it because I never know who I'm talking to." I lost consciousness with confidence.
report abuse
vote down
vote up
Votes: +5
...
written by RevMatt, January 27, 2012
Interesting discussion.

Almost three years ago I was diagnosed with multiple myeloma. For those of you who don't know, it is and incurable and fatal cancer of the plasma cells. The good news is that with advances made in the past twenty years patients are experiencing longer remissions.

It is my experience that people who have been diagnosed with an incurable and fatal disease like multiple myeloma will do one of three things to cope with the news.

The first common coping approach is what I call the "Cures They Don't Want You to Know About" syndrome. With the news being so devastating a patient will cling to the belief that there is a cure out there but the Medical establishment is either biased against non-western approaches to health or there is an active conspiracy by the medical establishment to suppress these cures. Quack doctors and clinics exploit this fear, claiming that the medical establishment is singling them out for persecution because it is in their financial interests that cancer not be cured.

The second coping mechanism is being treated by the best doctor in the best cancer center in the entire country. The idea being that being a patient of an internationally known researcher is kind of like getting Tom Brady to quarterback your football team. A patient using this approach will travel great distances and spend money on hotels just to get an appointment with Dr. _________. The fallacy? If this doctor is indeed the leading cancer researcher then every oncologist treating that type of cancer is not only familiar with his or her work but is using the protocals to treat the disease that he and his clinic have developed. In my own type of cancer, the current protocal that has the best outcomes are several cycles of Velcade/Revlimid/Decadron followed by a stem cell transplant. Velcade is Velcade regardless of who the doctor is who writes the script. In a sense, you are being treated by that famous doctor when you go to the cancer center closest to your home. The difference is that you do not have to do all of that travelling while you are sick from chemo!

report abuse
vote down
vote up
Votes: +2
...
written by RevMatt, January 27, 2012
Part 2
Various cancer centers like to advertise survival rates "twice the national average". This would lead a patient to conclude that he or she must travel to one of these centers in order to receive the best possible care. I used to think this way until I looked critically at those numbers and the reasons for them. First, the average age of onset for multiple myeloma is 70 with a substantial percentage of myeloma patients who are in their eighties. Many older patients are already in declining health and cannot withstand an aggressive round of chemo. Patients over the age of 70 are ineligiable for stem cell transplants. So, roughly 50% of the myeloma patients are ineligiable for the most aggressive treatment of the disease and will rarely visit a major cancer center, instead being treated by a small oncology practice close to their home. Who goes to the major cancer centers to be treated for multiple myeloma? Younger patients healthy enough for the most aggressive treatments who have health insurance. So of course patients in this population will have better outcomes. They are healthier to begin with and have access to the best possible treatment.

The third coping mechanism is the Google College of Medicine. I was -- and probably still am to a certain extent -- in this category. They constantly check the results of the latest clinical trials. They monitor the latest drugs in development, from the pre-clinical stage all the way through Phase III. They sometimes will travel on their own dime to national oncology conferences to hear the presentations for themselves. The idea is that a patient will learn about the next miracle drug and save their own life either by enrolling in a clinical trial. My local oncologist (who works closely with the doctors in at a major cancer center in my state) encouraged me and said things like, "Wow, I haven't seen that research yet. Thanks for telling me."

My day of reckoning came when I had a consultation with one of the researchers at the cancer center where I had my stem cell transplant. I showed up for the consult "loaded for bear" with folders of clinical trial research and medical journal articles. He was used to my type and very patiently explained why he was doubtful about some of the articles and gave me the hard news about the latest drugs. The "silver bullets" for multiple myeloma, he explained, were Velcade and Thalidomide, two drugs (or variations on those drugs) I had already been treated with. The newer drugs in the pipeline right now were either similar drugs to these with less side effects or drugs which will only show modest activity in refractory (relapsed) multiple myeloma. The most aggressive treatment available, he said, is a stem cell transplant from a donor. But finding a matching donor is difficult if you do not have an identical twin and the procedure itself has a twenty to thirty percent mortality rate, something I was already well aware of.

The lesson? Regardless of how smart I am or adept I am at using Google, I will never know more than an oncologist who treats multiple myeloma. My local oncologist has a practice in hemotology and oncology. She treats blood disorders which encompasses everything from people with iron deficiencies to every form of blood cancer. She also treats patients with other forms of cancer. Multiple Myeloma is probably one of thirty conditions she treats on a weekly basis. Of course I will know about the latest clinical trial results for my cancer before she does. If she obsessively googled every condition she treats she would not have time to see a single patient! But just because I read an article published in a medical journal about multiple myeloma before she does, does not mean I know more about treating that disease than she does. My doctor at the cancer center is an international expert on multiple myeloma. If there was a new "silver bullet" in the pipeline that could help me, not only would he know about it but he would try to enroll me in a clinical trial for it. There is no way I am going to hear about a new drug before he does because part of his practice is to decide which clinical trials he wants to be a part of and which clinical trials or drugs in development he will choose to pass by.

The best thing a cancer patient can have is a caretaker who, while indulging him or her as they employ various coping strategies, will keep their eye on the ball and make sure their loved one receives the best possible treatment. Clear thinking in the midst of all of this is what a cancer patient needs most.
report abuse
vote down
vote up
Votes: +3

Write comment
This content has been locked. You can no longer post any comment.
You must be logged in to post a comment. Please register if you do not have an account yet.

busy
Last Updated on Monday, 23 January 2012 18:01