Assorted Links

Thanks to Dave Lull.

Interview with Doron Weber, Author of Immortal Bird, About What He Learned From a Hospital Tragedy

Immortal Bird by Doron Weber, a program director at the Sloan Foundation, is about his son, Damon, who had a rare medical condition, and his son’s heart transplant operation (cost = $500,000) at New York Presbyterian/Columbia University Medical Center. Damon died after the operation. The post-operative care was so bad his father sued. “Three years into the lawsuit, the medical director [of the hospital] claimed Damon’s post-op records couldn’t be located,” said the New York Times.

How can such tragedies be prevented? To find out, I interviewed Doron Weber by email.

SETH Let’s say someone lives in a different part of the country — Los Angeles, for instance. What would you tell them about picking doctors to do a difficult expensive operation?

DORON I believe the key step before making any major medical decision is to gather as much information as possible. In my son’s case, we talked to everyone we knew at his regular New York hospital (New York Presbyterian) for their recommendation, and then we compared that information with experts at half a dozen other hospitals in New York and across the country who had a good reputation for his operation. I had established contacts at many of these hospitals, usually through physicians or scientists who I knew, either personally or professionally. But sometimes I would just get the name of a leading doctor and call him or her cold. They didn’t always respond but often they did, especially if you could make the case sound interesting. And I found that most doctors are very decent people who will try to share their knowledge, albeit succintly. I got the best results by being polite but determined and I didn’t require a long conversation–though some physicians were truly generous with their time–because in the end, you just want to know what they would do or who they would go see if it was their son or daughter.

I also traveled with my son to meet many of these experts at places like Children’s Hospital of Philadelphia, Boston Children’s, and the Mayo Clinic in Minnesota. During my son’s long illness, I found 3-4 key advisers–medical people who I respected and trusted, who would take my calls (one was my cousin, another the friend of a friend), and who were willing to work with me as my son’s case developed. These wonderful physicians would not just give intelligent medical advice seasoned by experience but they would send me the latest medical journals and articles for any possible leads. And they would direct me to other experts. Good people tend to know other good people.

If there was one mistake I made, it was to rely too much on data and statistics–they do matter, and they worked to extend and enhance my son’s life for several years–and not to listen to my own instincts. The physician whom I consider responsible for my son’s death–and against whom I have a still-pending lawsuit–was someone whom I had a bad feeling about from the start. (See Immortal Bird for examples.) But she had a great reputation, everyone kept extolling her and her hospital had the best outcome data for my son’s operation. Also my son wanted to stay at that hospital. So I suppressed my doubts and reservations and made the correct statistical calculation but a disastrous human one.

SETH What about screening doctors by asking about their legal record? For example, “Have you ever been sued for malpractice?” If so, going down the list of cases and learning about each one. And: “Have you ever been disciplined by a medical board?”

DORON Before my son’s wrongful death, despite all my information gathering, it never occurred to me to inquire about a physician’s legal record and whether he or she had ever been sued for malpractice. Now I know better. It would be very helpful to know if, and how many times, a physician has been sued before, even if it not definitive, because many doctors and hospital insurers settle out of court with strict confidentiality rules. But at least it gives you a preliminary context. And of course there are also frivolous lawsuits but if the same doctor was charged three times for the same alleged infraction, it is worth heeding. I have been most amazed at how many people, when I tell them about my medical lawsuit, describe how they or a loved one were horribly mistreated by a physician or hospital and came close to filing a lawsuit–but they didn’t go though with it because of the stress and the long, uphill battle and the years and expense involved. (Our own lawsuit has been active for six years but is on a contingency basis because we could not have afforded it otherwise.) Almost everyone has a personal hospital horror story–if a conversation ever flags, just bring up this subject–but most people shy away from challenging the hospital and the doctors with their big reputations and deep pockets. I also found people who did not understand that they had been mistreated because it was too painful to confront and they preferred to accept the hospital’s misleading explanation. I think beyond a record of being sued, every physician should have to post a record of all patient histories, which minimally would include diagnosis, length and type of treatment, and outcome for each case. In no other field does the consumer have less information on which to base a decision, and yet in no other field are the stakes so high.

SETH Based on your experience with your son, what are the first things we should change about our health care system?

DORON For me the greatest problem with our health care system is that it is no longer about health care but about the health business. Many hospitals have been taken over by private equity firms while even the non-profits are under pressure to reduce costs at the expense of patient outcomes. So I think we have to find a way to return the patient to the center of the health care system and ensure that everything else revolves around his or her well-being. Efficiency and controlling costs matters but health care is not just another business and should not be run by business managers. I like the Mayo Clinic model where doctors are under salary so can take their time and not worry about insurance and where physicians at the same hospital consult with one another and take a more holistic, multidisciplinary approach. I also think continuity of care is absolutely critical and each patient needs one assigned physician who will take full responsibility and oversight for his/her care and be held accountable, regardless of how many specialists or other doctors the patient sees.

How to Find a Doctor

David A. Pfister, a Bay Area oncologist, was named “Best of the Bay Oncologist” in 2010 by KRON-TV, according to a Yelp reviewer. He was named one of America’s “Top Doctors” by US News, based on a “peer nomination process.” The biggest doctor rating site, at least in America, is HealthGrades. A HealthGrades survey of Dr. Pfister’s patients (n = 31) asked Would you recommend Dr. Pfister to family and friends? Dr. Pfister’s score — halfway between “mostly yes” and “definitely yes” — put him close to the national average.

The “Best of Bay” comment was one of seven Yelp reviews of Dr. Pfister that filtered out (= downgraded) by Yelp’s filtering algorithm. The filtered-out reviews were much more positive than the reviews that passed the filtering process. In the five passing reviews, Dr. Pfister received an average rating of 1 out of 5, with comments to match:

He was chronically late, and had poor time-management skills. . . . This was the third and final time that he’s made me wait at least an hour past my scheduled appointment time (requiring me to leave before seeing him). [2008]

He was 30+ min late, unfriendly and unapologetic. His bedside manner is horrific and he talked me into having a procedure that ended up being painful and unnecessary. The office is completely disorganized. There are records of deceased patients out in the open in the bathroom. [2011]

When I visit his office, the only thing he wishes to discuss with me are the results of my recent labs. If it were up to him, my appointment would last 2 minutes. . . All my other doctors have told me for years I should get my care elsewhere. Typical visits consists of 2 hours waiting, 5 minutes with the doctor. [2010]

He is consistently late, as much as two hours, to his first appointments of the day. He arrives completely disheveled, hair sticking up and shirt untucked as if he was up half the night drinking. He also forgets your history and has to be reminded who you are, despite continual and regular appointments. Finally, if you ask questions he becomes very defensive and has even yelled at me for asking questions. [2009]

Which view of Dr. Pfister is more accurate, KRON-TV or Yelp? In March 2012, his license was suspended. He “admitted he has a psychiatric problem and a substance abuse problem.” The Yelp reviews that passed the filtering algorithm, with their complaints about lateness, poor grooming, and disorganization, predicted the suspension (assuming that doctors with low yelp scores are more likely to be disciplined). HealthGrades has yet to figure out there is anything unusual about Dr. Pfister. He is not listed on vitals.com.

I came across Dr. Pfister while glancing through yelp ratings of Berkeley doctors. His low rating surprised me. A yelp reviewer linked to the license suspension.

My conclusion: When looking for a doctor, check yelp. Yelp’s filtering algorithm, which emphasized the low reviews, really works. In California, you can search state records for licensing board disciplinary actions but such actions are very rare.

Thanks to Bryan Castañeda for a long conversation about detecting bad doctors. In Unaccountable (which should have been on my Best Books of 2012 list), Marty Makary says that hospitals and surgeons are in many ways unaccountable for their mistakes. Yelp is a countervailing force.

Never Be Alone in a Hospital

The Health Care Blog post titled “The Empowered Patient” by Maggie Mahar exists, as far as I can tell, because much hospital care has considerable room for improvement and many mistakes are made — for example, patients are given the wrong drug. One commenter (MD as Hell) said he has worked in hospitals more than 30 years and has some advice, including

  1. Never be alone in a hospital
  2. Never go to a hospital unless you have no alternative
  3. Do not let fear motivate you to be a consumer of any part of healthcare

In the comments, several doctors expressed their dislike of the whole idea of “patient participation”. For example,

Patients manage the process. Really? I’m sure your plumber or mechanic love you and this philosophy so much they hug you when you greet them.

Plumber and mechanic errors are not the #3 cause of death in America, as Marty Makary says about medical errors.

Here is another argument against patient participation:

The huge problem that barely anyone wants to talk about is [the assumption] that patient (and family ) participation are always (or even just mostly) beneficial. This is a completely unfounded assumption. Please read Dr. Brawley’s book “How we do harm” to read 2 long and IMHO representative anecdotes of patient/family centeredness resulting in net harm. . . . Lack of patient involvement and medical errors are hardly on top of the list of pressing flaws of the US health care system . . . Profit centeredness resulting in overtreatment of the insured and undertreatment of the underinsured are the main issues.

If medical errors are the #3 cause of death in America, they are one of the most serious flaws of the US health care system. The doctors who dislike patient participation in this comment section do not propose a better way to reduce mistakes, a better way to spend the time and mental energy required by patient participation. Maybe their annoyance is a good thing. Maybe they will be so annoyed they will reduce errors in other ways.

It is bizarre that patient involvement cannot be easily dismissed. I cannot think of another profession (accountants, bus drivers, carpenters, dentists, elementary school teachers, and so on) where anyone says never be alone with them. Sure, hospital patients are highly vulnerable but that vulnerability is no secret. It could have led to a system, similar to flying (airplane passengers are highly vulnerable), with an extremely low rate of fatal error. My own experience supports patient involvement. The biggest motivation for my self-experimentation, at least at first, was my self-experimental discovery that a powerful acne medicine my dermatologist had prescribed (tetracycline, an antibiotic) was no help. My dermatologist had shown no signs of considering this a possibility. When I told him about my experiment (varying the dose of the antibiotic) and the results (no change in acne), he said, “Why did you do that?” Later a surgeon I consulted about a tiny hernia was completely misleading about the evidence for her recommendation that I have surgery for it.

Assorted Links

Thanks to Casey Manion.

Twenty Dead Schoolchildren in Newtown, Conn.

Adam Lanza, the Sandy Hook shooter, was taking medication, according to a neighbor. Here’s what someone said in 2008: “Every young, male shooter [who] has gone on a killing spree in the United States also has a history of treatment with psychotropic drugs — typically SSRI antidepressants. These shootings have three things in common: 1) The shooters are young males. 2) The shooters exhibit a mind-numbed disconnect with reality. 3) The shooters have a history of taking psychiatric medications.”

Lanza was considered by his mom to have Asperger’s. No doubt that, and the associated isolation, had something to do with the medication. As I point out every year at Nobel Prize time, the research methods favored by the healthcare establishment have done little to reduce major diseases, such as depression. With few exceptions, year after year little progress is made on figuring out the environmental cause of anything, including Asperger’s and autism. The result of this lack of progress is that almost every serious health problem, including mental health problems, gets treated with drugs or surgery rather than prevented or treated safely with necessary nutrients (as scurvy is treated with lime juice). The little progress that is made in finding environmental causes is undervalued. The researchers who figured out that smoking causes lung cancer didn’t even get a Nobel Prize. The effect of failing year after year to find environmental causes is that people take more and more drugs with little-known or unknown side effects, which are almost always bad. The association of SSRI antidepressants and violence is still unknown to many people, for example. The problem has been made worse by drug companies hiding data. As Ben Goldacre says in Bad Pharma, one of the worst cases involved an antidepressant called paroxetine, whose manufacturer (GlaxoSmithKline) withheld data about its tendency to cause suicide. My work has suggested that a lot of depression may be due to lack of exposure to faces in the morning, an idea utterly different than the neurochemical theories of depression favored by psychiatrists. I am sure that seeing faces in the morning is safer than taking psychiatric drugs.

 

 

How Helpful Are New Drugs? Not So Clear

Tyler Cowen links to a paper by Frank Lichtenberg, an economist at Columbia University, that tries to estimate the benefits of drug company innovation by estimating how much new drugs prolong life compared to older drugs. The paper compares people equated in a variety of ways except the “vintage” (date of approval) of the drugs they take. Does taking newer drugs increase life-span? is the question Lichtenberg wants to answer. He concludes they do. He says his findings “suggest that two-thirds of the 0.6-year increase in the life expectancy of elderly Americans during 1996-2003 was due to the increase in drug vintage” — that is, to newer drugs.

An obvious problem is that Lichtenberg has not controlled for health-consciousness. This is a standard epidemiological point. People who adopt Conventional Healthy Behavior X (e.g., eat less fat) are more likely to adopt Conventional Healthy Behavior Y (e.g., find a better doctor) than those who don’t. For example, a study found that people who drink a proper amount of wine eat more vegetables. Another reason for a correlation between conventionally-healthy practices is mild depression. People who are mildly depressed are less likely to do twenty different helpful things (including “eat healthy” and “find a better doctor”) than people who are not mildly depressed. (And mild depression seems to be common.) Perhaps doctors differ. (Lichtenberg concludes there are big differences.) Perhaps better doctors (a) prescribe more recent drugs and (b) do other things that benefit their patients. Lichtenberg does not discuss these possibilities.

A subtle problem with Lichtenberg’s conclusion that we benefit from drug company innovation is that drug-company-like thinking — the notion that health problems should be “solved” with drugs — interferes with a better way of thinking: the notion that to solve a health problem, we should find out what aspects of the environment cause it. I suppose this is why we have Schools of Public Health — because this way of thinking, advocated at schools of public health, is so incompatible with what is said and done at medical schools. Public health thinking has a clear and impressive track record — for example, the disappearance of infectious disease as a major source of death. There are plenty of other examples: the drop in lung cancer after it was discovered that smoking causes lung cancer, the drop in birth defects after it was discovered that folate deficiency causes birth defects. Thinking centered on drugs has done nothing so helpful. Spending enormous amounts of money to develop new drugs shifts resources away from more cost-effective research: about environmental causes and prevention. Someone should ask the directors of the Susan K. Komen Foundation: Why “race for the cure”? Wouldn’t spending the money on prevention research save more lives?

 

Assorted Links

  • Experiments suggest flu shots reduce heart attacks and death. Huge reduction: 50%. The new report (a conference talk, not a paper) is a reanalysis of four earlier experiments. I was surprised to learn that the CDC uses heart attack outbreaks to locate flu outbreaks, implying that the new finding is not a fluke — there really is a strong connection. I already knew heart attacks are more common in the winter, which also supports a connection with flu.
  • Une histoire des haines d’écrivains by Boquel Anne and Kern Etienne. Published 2009. About literary feuds. One of my students was reading a Chinese translation.
  • Correspondences between sounds and tastes.
  • Report on fraudulent Dutch research. “The 108-page report says colleagues who worked with Stapel had not been sufficiently critical. This was not deliberate fraud but ‘academic carelessness’, the report said.” I doubt it. Based on my experience with Chandra, I believe Stapel’s colleagues had doubts but did nothing from some combination of careerism (doing something would have cost too much, for example a lot of time, and gained them nothing), ignorance (not their field), and decency (they saw no great value in ruining someone). I wonder if the report considered these other possible explanations (careerism, ignorance, decency).

Thanks to Tim Beneke.

Thirty Years of Breast Cancer Screening May Have Done More Harm Than Good

A recent op-ed in the New York Times by H. Gilbert Welch, a co-author of Overdiagnosis, describes a tragedy of ignorance and overconfidence. The current emphasis on regular mammograms began thirty years ago. They will prevent breast cancer, doctors and health experts told hundreds of millions of women. They will allow early detection of cancers that, if not caught early, would become life-threatening. The campaign was very successful. According to the paper cited by Welch, about 70% of American women report getting such screening.

It is now abundantly clear this was a mistake. If screening worked perfectly — if all of the cancers it detected were dangerous — the rate of late-stage breast cancer should have gone down by the amount that the rate of early-stage breast cancer went up. Over the thirty years of screening, the rate of (detected) early-stage breast cancers among women over 40 doubled, no doubt because of screening. (Over the same period the rate of early-stage breast cancers among women under 40 barely changed.) In spite of all this early detection and treatment, the rate of late-stage breast cancer among women over 40 stayed essentially the same. All that screening (billions of mammograms), all that chemo and surgery and radiation, all that worry and time and misery — and no clear benefit to the women screened and those who paid for the screening, treatment, and so on. Roughly all of the “cancers” detected by screening and then, at great cost, removed, aren’t dangerous, it turns out.

Quite apart from the staggering size of the mistake and the long time needed to notice it, screening has been promoted with specious logic.

Proponents have used the most misleading screening statistic there is: survival rates. A recent Komen Foundation campaign typifies the approach: “Early detection saves lives. The five-year survival rate for breast cancer when caught early is 98 percent. When it’s not? It decreases to 23 percent.” Survival rates always go up with early diagnosis: people who get a diagnosis earlier in life will live longer with their diagnosis, even if it doesn’t change their time of death by one iota.

Did those making the 98% vs. 23% argument not understand this?

I applaud Welch’s research, but his op-ed has gaps. A unbiased assessment of breast cancer screening would include not only the (lack of) benefits but also the (full) costs. Treatment for a harmless “cancer” may cause worse health than no treatment. Maybe chemotherapy and radiation and surgery increase other cancers, for example. What about the effect of all those mammograms on overall cancer rate? Welch fails to consider this.

Welch also fails to make the most basic and important point of all. To reduce breast cancer, it would be a good idea to learn what environmental factors cause it. (For example, maybe poor sleep causes breast cancer.) Then it could be actually prevented. Much more cheaply and effectively. Yet the Komen Foundation and the Canadian Breast Cancer Foundation say “race for the cure” instead of trying to improve prevention.

 

Assorted Links

Thanks to Edward Jay Epstein, Bryan Castañeda, Paul Nash, Jay Barnes and Dave Lull.