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Beyond Informed Consent: Shared Decision-Making

Happy New Year to all our readers! Today marks the completion of 5 years of SBM and the beginning of year 6. My contributions, at one a week, have now reached a total of 260. My first post on this blog, 5 years ago, was a review of an important book about science and alternative medicine, Snake Oil ScienceThis year I’d like to start with an important book about communicating medical science to patients, Critical Decisions,  by Peter A. Ubel, M.D.

I was wrong about informed consent. I thought informed consent was a matter of explaining the risks and benefits of treatments to patients so they could decide what they wanted to do.  That was naïve, simplistic, and misguided. Ubel’s book has radically changed my thinking about how doctors should interact with patients.

Paternalism in medicine is dead. Patient autonomy rules. We respect the right of patients to determine their own treatments, even if their choices seem unwise to us. Patients should do what they want. But there’s a problem: patients may not know what they really want. Emotions and unconscious and irrational forces influence their medical decisions. Preferences can change from one moment to the next, and they can shift with subtle changes in how treatments are described and how the issues are framed. Doctors need to develop a better understanding of what is going on in their patients’ minds, of how the way they present treatment options can inadvertently influence patients, and of how they can participate with patients in a process of shared decision-making. It’s possible to provide direction without paternalism. (more…)

Posted in: Book & movie reviews, Medical Ethics

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Storytelling in Medicine

We can’t stress often enough that anecdotes are not reliable evidence; but on the other hand, patient stories can serve a valuable purpose in medical education. Hearing how a disease affected an individual patient is more powerful than reading a list of symptoms in a textbook and is far more likely to fix the disease in the student’s memory. When I think of Parkinson’s disease, the first thing that comes to mind is my first patient with Parkinson’s and how he responded to levodopa; and the first thing that may come to many people’s minds is Michael J. Fox. Of course, we must realize that they may not be typical examples; but putting a face to a diagnosis serves as a memory aid and a hook to hang the rest of our knowledge on.

In his new book, The Power of Patient Stories: Learning Moments in Medicine, Paul F. Griner, MD relates more than 50 stories that distill the wisdom he has developed over a 58-year career of practicing medicine and teaching young doctors. He describes them as “stories that provided a learning moment for me.” It’s interesting to see how much medicine has changed over his professional lifetime and yet how cases from the 50s and 60s are still highly relevant. Ethical dilemmas and lessons about medical practice come alive under his pen. Each story is followed by incisive questions and exercises that engage the reader and challenge him to think about the issues. (more…)

Posted in: Book & movie reviews, History, Medical Academia, Medical Ethics

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Fun With Statistics

Statistics is the essential foundation for science-based medicine.  Unfortunately, it’s a confusing subject that invites errors and misunderstandings.  We non-statisticians could all benefit from learning more about statistics as well as trying to get a better understanding of just how much we don’t know. Most of us are not going to read a statistics textbook, but the book Dicing with Death: Chance, Risk, and Health by Stephen Senn is an excellent place to start or continue our education. Statistics can be misused to lie with numbers, but when used properly it is the indispensable discipline that allows scientists:

 …to translate information into knowledge. It tells us how to evaluate evidence, how to design experiments, how to turn data into decisions, how much credence should be given to whom to what and why, how to reckon chances and when to take them.

Senn covers the whole field of statistics, including Bayesian vs. frequentist approaches, significance tests, life tables, survival analysis, the problematic but still useful meta-analysis, prior probability, likelihood, coefficients of correlation, the generalizability of results, multivariate analysis, ethics, equipoise, and a multitude of other useful topics. He includes biographical notes about the often rather curious statisticians who developed the discipline. And while he includes some mathematics out of necessity, he helpfully stars the more technical sections and chapters so they can be skipped by readers who find mathematics painful. The book is full of examples from real-life medical applications, and it is funny enough to hold the reader’s interest. (more…)

Posted in: Book & movie reviews, Science and Medicine

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Now that Burzynski has gotten off in 2012, Burzynski The Movie will spawn a sequel in 2013

About a year ago, I became interested in a physician named Stanislaw Burzynski who has been treating cancer with compounds that he calls “antineoplastons” for over three decades without, in my opinion, ever having ever produced any compelling evidence that antineoplastons have significant anticancer activity. Although I had been vaguely aware of Burzynski and his activities, it was the first time that I had looked into them in a big way.

Having found very few skeptical, science-based takes on Burzynski and having noted that the Quackwatch entries on Burzynski (1, 2, 3) were hopelessly out of date, I wrote a trilogy of posts about him, starting with a review of an execrably bad movie made by a simultaneously credulous yet cynical independent writer, producer, and director named Eric Merola whose primary business, appropriately enough, is mainly marketing. The movie was Burzynski The Movie: Cancer Is A Serious Business, a “documentary” (and I’m being polite here) that I characterized at the time as a bad movie and bad P.R. In brief, I saw this movie as a hagiography, a propaganda film so ham-fisted that, if she were still alive, it would easily simultaneously make Leni Riefenstahl blush at its blatantness and feel nauseated how truly awful it was from a strictly film making standpoint. It was also chock full of highly dubious science, in particular Burzynski’s latest venture, which is to sell “personalized gene-targeted cancer therapy” similarly lacking in oncological insight, so much so that I observed at the time that it was as though Dr. Burzynski read a book called Personalized Cancer Therapy for Dummies and decided he is an expert in genomics-based tailoring of targeted therapies to individual cancer patients. Finally, I completed the trilogy by pointing out that lately Burzynski has been rebranding an orphan drug that showed mild to moderate promise as an anticancer therapy.
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Posted in: Book & movie reviews, Cancer, Clinical Trials

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Bad Pharma: A Manifesto to Fix the Pharmaceutical Industry

“There is no medicine without medicines” write Ben Goldacre in his new book Bad Pharma. To Goldacre, an author, journalist and physician, this cause is personal. The title, a reference to both his first book, Bad Science, as well as the pharmaceutical industry’s nickname Big Pharma, is a bit of a misnomer. While the focus is pharmaceutical companies and their actions, there are a number of enablers in the health care system – medical journals, regulators, and even medical professionals, all of whom have put the industry’s needs ahead of good medicine. According to Goldacre, the damage is pervasive and deep, right to the roots of modern medicine. These problems know no borders, and affect us all. Despite the different health care systems that exist worldwide, we all depend on for-profit pharmaceutical companies to develop and market new medicines. These companies collectively wield enormous clout, due in part to the remarkable success of medicines over the past several decades. The global pharmaceutical market will probably top $1 trillion (yes, 12 zeros) this year. And Goldacre argues the industry is not only compromised, it is broken. And over 400 pages, he defends the following paragraph:

Drugs are tested by the people who manufacture them, in poorly designed trials, on hopelessly small numbers of weird, unrepresentative patients, and analysed using techniques that are flawed by design, in such a way that they exaggerate the benefits of treatments. Unsurprisingly, these trials tend to produce results that favour the manufacturer. When trials throw up results that companies don’t like, they are perfectly entitled to hide them from doctors and patients, so we only ever see a distorted picture of any drug’s true effects. Regulators see most of the trial data, but only from early on in a drug’s life, and even then they don’t give this data to doctors or patients, or even to other parts of government. This distorted evidence is then communicated and applied in a distorted fashion. In their forty years of practice after leaving medical school, doctors hear about what works ad hoc, from sales reps, colleagues and journals. But those colleagues can be in the pay of drug companies – often undisclosed – and the journals are, too. And so are the patient groups. And finally, academic papers, which everyone thinks of as objective, are often covertly planned and written by people who work directly for the companies, without disclosure. Sometimes whole academic journals are owned outright by one drug company. Aside from all this, for several of the most important and enduring problems in medicine, we have no idea what the best treatment is, because it’s not in anyone’s financial interest to conduct any trials at all. These are ongoing problems, and although people have claimed to fix many of them, for the most party they have failed; so all of these programs persist, but worse than ever, because now people can pretend that everything is fine after all.

We all have our own biases, and I should disclose mine. I’m a pharmacist who has seen HIV go from a death sentence to a chronic disease, thanks to newly developed drugs. I’ve watched cancers like leukemias be effectively cured, thanks to medication. And I’m amazed that surgeries like double-lung transplants, impossible in the past, are now a reality, thanks in part to drug treatments. Yet I’ve also spent more than a decade reviewing the efficacy and safety of prescriptions drugs. Regrettably few are truly innovative. Many are approved with lingering questions about long-term safety and effectiveness. The value some offer can be questionable. I’ve also seen tremendous harms caused by drugs – from individual patients who have suffered horrible adverse drug reactions to population-level disasters like the Vioxx (COX-2) debacle. And I haven’t ignored the countless fines levied on pharmaceutical companies for bad, and sometimes even criminal, behavior. With its repeated capacity for self-sabotage, the pharmaceutical industry is its own worst enemy. My colleagues who work in the pharmaceutical industry agree. They’re smart, honest people that genuinely want to help get good treatments to patients. They’re embarrassed by what they see. So while I have no doubts about the astonishing track record of innovative new drugs that have transformed medicine, I also have no illusions that drug companies always behave in ways that support science-based medicine. And I think there is the potential for the industry to do much better. So how do we get this? (more…)

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Eat To Save Your Life: Another Half-True Diet Book

I am hesitant to review diet books because they are so often a tangled mess of fact and fiction. Teasing out their truth from falsehood is about as exhausting as delousing a long-haired elementary school student. However, after being approached by the authors’ PR agency with the promise of a book that contains science-based nutrition information I decided to agree to the review. This is how the book was described to me in an email:

In their provocative new book, Eat to Save Your Life, best-selling authors Dr. Jerre Paquette and Gloria Askew, RRN, sort through the piles of information and misinformation about nutrition to reveal the true connection between food and health. Fed up with the advertising hype and conflicting nutritional advice, the duo provides common sense explanations for consumers everywhere who are looking to make smart nutritional choices.

Unfortunately, I was sold (quite predictably) a bill of goods. And rather than ignore the book and simply not do a review, I figured that maybe a negative review would reduce the number of incoming PR requests for future tomes of pseudoscience. In the end, I’ll probably just become the focus of personal attacks by dedicated proponents of various snake oils. 

That being said, I thought it might be somewhat instructive to remind SBM readers of certain basic “warning signs of pseudoscience” that I accidentally overlooked in agreeing to review the book. For a more complete review of similar “signs” I highly recommend Dr. David Gorski’s 2007 classic, humorous take on predictable arguments and behaviors of alternative medicine proponents (written in the style of comedian Jeff Foxworthy).  As for me, I tend to think of much of the world of integrative medicine as a militant group of bakers eager to add odd, inert and occasionally toxic substances to cake recipes. 
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Posted in: Book & movie reviews, Nutrition

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Lessons from the History of Insulin

On my recent trip to Nashville for CSICon, I took advantage of the long hours on the plane to read Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle, by Thea Cooper and Arthur Ainsberg. One of our commenters recommended it. I’m not sure who (was it Chris?), but I want to thank you.

It’s the history of insulin told from the perspective of the scientists and of a typical patient, and it touches on a number of issues that we have addressed on SBM. It shows how science works to save lives, in stark contrast to the empty promises of CAM. (more…)

Posted in: Book & movie reviews, History, Pharmaceuticals

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The War Against Chiropractors

In 2011, chiropractor J.C. Smith published The Medical War Against Chiropractors: The Untold Story from Persecution to Vindication. He promises an exposé comparable to Harriet Beecher Stowe’s exposé of slavery in Uncle Tom’s Cabin. His thesis is that the AMA waged a shameless attack on competition, motivated only by money. I think the reality is closer to what he quoted from Dr. Thomas Ballantine, Harvard Medical School:

The confrontation between medicine and chiropractic is not a struggle between two professions. Rather it is more in the nature of an effort by an informed group of individuals to protect the public from fraudulent health claims and practices.

The book is self-published, long-winded, repetitive, and flawed. It is a vicious screed crammed with bias, half-truths, insulting language, and innumerable references to Nazis and racial prejudice. In my opinion, Smith not only fails to make his case but degrades chiropractic.

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Posted in: Book & movie reviews, Chiropractic, History

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Thumbthing Worth Reading

I intended to read Sam Kean’s new book The Violinist’s Thumb: And Other Lost Tales of Love, War, and Genius as Written by our Genetic Code  just for fun. I was expecting a miscellany of trivia loosely gathered around the theme of DNA. But I found something much more worthwhile that I thought merited a book review to bring it to the attention of our readers. Kean interweaves entertaining stories into a somewhat disjointed but nonetheless valuable history and primer of genetics. The title refers to Paganini, whose DNA created the unusual joint flexibility that facilitated his unprecedented feats of virtuosity on the violin.

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Posted in: Basic Science, Book & movie reviews, Evolution, History

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Learning from Animals: Evolutionary Medicine with a Twist

In 2005, cardiologist Barbara Natterson-Horowitz was called to the zoo to examine a non-human patient, an emperor tamarin with heart failure.  She was surprised when the veterinarian told her not to look her patient in the eyes because eye contact could cause capture myopathy. In this condition, when an animal is captured, restrained, and feels threatened, there is a catastrophic surge of adrenaline that damages muscle tissues and can kill. It was described decades ago, but medical doctors don’t read the veterinary literature. It wasn’t until the early 2000s that American doctors began to recognize a similar phenomenon in human patients, takotsubo or stress-induced cardiomyopathy.

She began to wonder whether animals got other human diseases. She quickly learned that they did. Jaguars get breast cancer and may carry the same BRCA1 gene that plagues Ashkenazi Jewish women, rhinos get leukemia, penguins get melanoma, gorillas die from ruptured aortas, and koalas are in the midst of an epidemic of sexually transmitted chlamydia.  Wild dragonflies infected with parasites become obese and develop a form of metabolic syndrome. Pretty much every human disorder occurs in animals too.

With the help of writer Kathryn Bowers, she distilled her findings into a book: Zoobiquity: What Animals Can Teach Us About Health and the Science of Healing.  It’s a good read: informative, well argued, spiced with intriguing trivia, and more entertaining than a trip to the zoo. (more…)

Posted in: Book & movie reviews, Evolution, Veterinary medicine

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