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Death by “alternative” medicine: Who’s to blame? (Revisited)

(NOTE: There is now an addendum to this post.)

(NOTE #2: The videos of Robert O. Young’s interview with Kim Tinkham have been removed, as I predicted in this post that they would be. Fortunately, I downloaded copies before he managed to do that. Part 6 appears to be still there–for now.)

(NOTE #3: It was announced on the Facebook page Caring for Kim that the subject of this post, Kim Tinkham, passed away on December 7, 2010 in the late afternoon. Although it was not revealed what kind of cancer she died of, Tinkham almost certainly died from metastatic breast cancer. Quackery appears to have claimed another victim.)

I hate stories like this. I really do. I hate them with a burning passion that makes it hard for me to see straight when I first find out about them.

In fact, you might even say that stories like this are a major part of the reason why I do what I do, both here and elsewhere. They’re a major part of the reason why I’ve recently branched out into public speaking, something that used to terrify me beyond belief but that lately I’ve become at least competent at–sometimes even not bad at all. Sadly, the story I’m about to tell is one I’ve told before, most recently at the Lorne Trottier Science Symposium, where I gave a talk on cancer cure “testimonials,” although at the time I gave the talk the story’s outcome, although predictable, was not yet known.

Now it is.

The woman to whom I refer is named Kim Tinkham, who was diagnosed with breast cancer over three and a half years ago. Regular readers may recall that Kim Tinkham achieved fame not long after that when she was featured on The Oprah Winfrey Show in an episode about The Secret, an episode I discussed posts entitled The Oprah-fication of Medicine and On the nature of “alternative” medicine cancer cure testimonials. I don’t want to discuss the utter nonsense that is The Secret in any detail here. However, for those unfamiliar with this particular bit of New Age woo, it’s important to point out that The Secret’s “Law of Attraction” takes the germ of a reasonable idea (namely that one’s attitudes and wishes influence whether one gets what one wants in life, something that’s been known for millennia) and goes off the deep end of woo by proclaiming that, in essence, you can get anything you want by wanting it badly enough and thinking positive thoughts. Basically “The Secret” is that you have the power to “attract” good to yourself by thinking happy thoughts (hence “the law of attraction,” which, according to Secret adherents always works). It’s an idea that resonates in so much of “alternative medicine,” such as German New Medicine or Biologie Totale. Of course, the implication of “Secret” thinking is that, if you don’t get what you want, it’s your fault, an idea that also resonates with so much “alternative” medicine, where a frequent excuse for failure is that the patient either didn’t follow the regimen closely enough or didn’t want it badly enough.

Basically, The Secret is what inspired Kim Tinkham to eschew all conventional therapy for her breast cancer and pursue “alternative” therapies, which is what she has done since 2007. Before I discuss her case in more detail, I’m going to cut to the chase, though.

This weekend, I learned that Kim Tinkham’s cancer has recurred and that she is dying. On Saturday, a reader of my other blog sent me an e-mail that informed me:

Our dear friend, Kim Tinkham, has been diagnosed with cancer. Kim’s friends and family have established a benefit account at Citibank to assist the Tinkhams with expenses during this difficult time.

The accompanying e-mail referred me to a website called Caring for Kim, which led me to related Twitter and Facebook pages. In addition, on the FaceBook page, there was a flyer:

I can’t tell you how much this depressed me. Granted, neither the website, the Twitter feed, nor the Facebook page confirmed the details of the story told by the person who e-mailed me. However, the nature of the comments on Facebook page did strongly suggest to me that it is true, as there are a number of supportive posts offering prayers of support and urging Tinkham to “keep up the fight” and be hopeful. At the very least, the Facebook page strongly suggested that something is very, very wrong with Tinkham’s health and that it has to do with her cancer coming back. Over the weekend, I have since confirmed, to the best of my ability, that the story related to me by my reader appears to be true. Kim Tinkham is dying of cancer. Most likely what has happened is that, after nearly four years of quack treatments, Tinkham’s breast cancer finally metastasized to what are, let’s face it, the most common sites to which breast cancer metastasizes, bone, liver, and lung. (One source told me that she had “cancer” in those sites but did not specify what kind.) The reports I’ve read suggest that Tinkham is not expected to live to see 2011.

And so it goes. Another quack appears to have claimed another victim.

Breast Cancer, The Secret, and Oprah

I first learned of Kim Tinkham from a testimonial that I read back in early 2008. Here is Kim’s story as related by her:

After a mammogram and a biopsy, Tinkham’s doctor told her that she has stage three breast cancer. That moment, she said, was one of the rare times in her life that she broke down and didn’t know what to do.

“My 50th birthday was a milestone. I started thinking, ‘What am I going to do for the next 50 years?’ I never, ever planned for this,” Tinkham said. “I’m not someone who breaks down. It was a scary time for me and it wasn’t a situation I wanted to deal with, but it wasn’t going to go away. I had that feeling of hopelessness and that feeling when you finally realize, ‘I’m not immortal.’”

Her doctors wanted to perform a partial mastectomy immediately, as well as remove her lymph nodes. She had 15 minutes to call her husband before going through more tests and discussing a combative plan.

This was very typical of breast cancer testimonials. There is the diagnosis. Then, the doctors seemingly pressure the patient into surgery, heedless of what she wants. Whether true or not, the woman perceives it to be this way. Be that as it may, when I first encountered it, this story gave me a fair amount of information, even as vague as it was, assuming that the information contained in it was true. Stage III breast cancer told me that at least one of two things must be true: Either the tumor must have been large (greater than 5 cm in diameter), and/or there must have been significant lymph node involvement. Also, from this story, we could reasonably conclude that, if Tinkham’s account was accurate, her tumor was stage IIIA, because stage IIIB and IIIC are by definition not operable; they require chemotherapy first to shrink them. Finally, we can assume that, whatever the status of her nodes, the primary tumor must not have been that much larger than 5 cm, because otherwise a partial mastectomy without preoperative chemotherapy to shrink the tumor would not have been possible.

The next step of the testimonial was the “courageous” decision to “go alternative”:

Hours and hours of research followed, and Tinkham realized that an alternative solution would be best for her.

“I knew, for me, the best route would be alternative. I don’t like surgery. I guess I don’t like the loss of control,” Tinkham said. “After thinking about it, there’s a quality of life that is involved. It’s not about just existing. For me, the quality wouldn’t be there if I had the surgery and went through the other things. I decided not to do it. That was a big step.”

In deciding to treat cancer without surgeries and chemotherapy, she had to tell her husband, Scott, son, Garrett, and her family and friends.

I really hate when this happens, because a woman who decides to forgo effective conventional therapy in favor of quackery is giving up her single best shot at surviving her cancer. This was not at that time a woman with metastatic disease that was incurable. Patients with stage IIIA cancer, although they don’t have the best prognosis in the world, are definitely eminently curable with conventional therapy. Unfortunately, Tinkham found one Robert O. Young, whom I’ve discussed here, at TAM7, and at the Trottier Symposium. Young is a proponent of the pseudoscientific idea that essentially all disease is due to “excess acidity” and can therefore be treated with alkalinization. In essence, “Dr.” Young peddles acid-base pseudoscience and the belief that cancer is a “liquid.” One reason that women with breast cancer who decide to opt for “alternative treatment” come to believe that their treatment cured them is because they have had a biopsy that completely excised the tumor. Remember, radiation and chemotherapy only decrease the chance of the tumor recurring after lumpectomy; the lumpectomy itself cures cancer in a significant proportion of cases. However, Tinkham did not undergo an exicisonal biopsy or lumpectomy, only Young’s unscientific and useless treatments. So, after “hyperalkalinizing” her body by changing her diet radically and imbibing all sorts of supplements, did Tinkham’s tumor shrink radically?

No:

She can still feel the tumor just underneath the surface of her skin, where it will probably remain for a while.

But she knows it’s harmless. Now, it’s simply her badge of honor – the reminder that she, Kim Tinkham, defeated cancer without any surgery, invasive procedures, radiation or chemotherapy.

The tumor was still there! Note also that no mention was made of whether the tumor had grown or shrunk. What was most likely going on was that Tinkham was (at the time) fortunate enough to have developed a relatively indolent, slow-growing tumor. So, if the tumor was still there and it was not obviously shrinking, how on earth could Young tell Tinkham that her tumor was gone? Here’s how:

A recent blood test proved that the stage three breast cancer diagnosed in February is absent from her body. But she really didn’t need a blood test to tell her that. Just hours after she had her blood taken for the test, and days before she knew the results, she was confident that her new lifestyle had allowed her body to fight the cancer.

There is no blood test that can tell a woman that she is breast cancer free. None. Moreover, even if she did have a blood test that told her she is tumor free, if the tumor is still there, she should pay attention to the tumor, not to any dubious “blood test” that a dubious practitioner represents to her as having any validity whatsoever in determining the status of her tumor.

How anyone could believe this testimonial is beyond me. Then I did a seearch on Tinkham’s name, and it became clear in accounts of how Oprah Winfrey had Tinkham on her show to discuss her decision to treat her breast cancer with “natural” methods that Tinkham really, really believes in The Secret. The same sort of wishful thinking that led her to fall for nonsense such as the “Law of Attraction” has led her to fall for the science-free nonsense that Young is telling her about her cancer.

Kim Tinkham 2010: Maybe the naysayers (like me) were wrong

After I first heard her testimonial in 2008, so often, I did some Googling about Kim Tinkham. I was happy to see that she actually did quite well for quite a long period of time. The reason I was happy for her was because, as long as the cancer had not metastasized, there was still a chance that Tinkham would see the light and seek out science-based treatment. There was still a chance that she could beat her cancer and live out her natural lifespan. Granted, the chance was probably decreasing by the month, but there was still a chance. By this summer, Tinkham had been alive with her breast cancer diagnosis for well over three years without any treatment other than Young’s acid-base woo. Unfortunately, this level of success also led Kim to believe that her cancer truly was gone, so much so that she started writing a book about her experience entitled Cancer Angel, which had been scheduled to be published this month. Something happened, though, and for some reason Tinkham didn’t get it published and instead uploaded 14 chapters to her blog in May.

In March, she also taped an interview with Robert O. Young and his wife:

In case Dr. Young tries to throw these down the memory hole, I have downloaded copies to my hard drive.

When I first saw these videos, I wondered if I could find out more about what was going on. One thing that Tinkham kept repeating again and again is that she was diagnosed with “stage III” breast cancer. In the video above, Young and his wife kept harping on that again and again. The three of them also complain again and again that there “weren’t any options.” My retort would be: Of course, there were options! Tinkham just didn’t like any of the options presented to her. If the tumor was Stage IIIA (which has been my working hypothesis since I first found out about Kim Tinkham’s story), then there was the option of surgery first. This would have included mastectomy and axillary lymph node dissection (i.e., modified radical mastectomy) or, in the case of a woman with–there’s no way to put this very delicately–very large breasts, it might also have been possible to do a lumpectomy with removal of the axillary lymph nodes. Afterward, chemotherapy and radiation would be indicated. Alternatively, if the tumor was too large to do a lumpectomy, breast conserving therapy might still have been possible if chemotherapy were given first to shrink the tumor. In all cases, if Tinkham’s tumor makes the estrogen receptor, then treatment would have been followed up with five years of Tamoxifen or an aromatase inhibitor, and if the tumor makes the HER2/neu oncogene, Herceptin would have been administered for a year.

Those, for the most part, are the choices, outside of unusual cases. All of these choices would have involved some combination of surgery, chemotherapy, and radiation therapy ± anti-estrogen therapy (Tamoxifen or aromatase inhibitors depending on whether Tinkham was postmenopausal yet) ± Herceptin. Tinkham rejected them. I can understand that she was afraid of them. None of these therapies are pleasant. It would probably have taken her around 6 months or so to get through all of them. She might have suffered complications; she would definitely have lost her hair. But these treatments work.

One thing I found interesting is how Young actually asked some reasonable questions at about the 4:00 mark. He asked if the tumor was aggressive, if it was hormone receptor positive (estrogen receptor positive, in other words). I’d ask the same questions, particularly whether the tumor is ER(+), because that would tell me the most. Some ER(+) tumors, after all, can be very indolent, even when they present fairly advanced. If her tumor were ER(-), I’d be a lot more worried that it was a fast-growing tumor. Then Tinkham said:

I remember them saying something about its being in situ, but, other than that…

If this was true, then Kim Tinkham by definition did not have stage III breast cancer. Ductal carcinoma in situ (DCIS) is by definition cancerous cells in the ducts that have not yet invaded into the breast tissue. By definition, DCIS is considered stage 0 cancer and has a close to 100% five year survival. If Tinkham really did have DCIS, then it’s not at all surprising that she’s still doing well three years later.

In retrospect, it’s obvious that Tinkham almost certainly had invasive cancer, although it is possible that her DCIS progressed to invasive cancer over three years. It also sounds as though her surgeons wanted to remove all the lymph nodes under the arm, which they would not have wanted to do if she didn’t have at least one positive lymph node. It is, of course, is quite possible that, given her lack of detail regarding what kind of cancer she had, Tinkham might well have been confusing the sentinel lymph node biopsy, in which one or a handful of lymph nodes were are removed for testing, with a complete axillary dissection, where all the lymph nodes under the arm are removed. Most stage III cancers require an axillary dissection, while tumors with clinically negative lymph nodes (i.e., lymph nodes that appear normal on physical examination, mammography, and ultrasound) are usually tested with sentinel lymph node biopsy. Sometimes for large DCIS, we do sentinel lymph node biopsies even though DCIS does not in general metastasize to the lymph nodes, because large DCIS lesions often harbor small foci of invasive breast cancer. You don’t want to miss evaluating the lymph nodes at the time of the original surgery, because if the surgery is a mastectomy you can’t go back later and do a sentinel lymph node biopsy. You have to go back and take all the nodes.

One thing about Tinkham’s testimonial as related in the videos that did resonate with me is that she felt rushed. Sometimes we surgeons do that, whether inadvertently or intentionally. Personally, I try very hard not to rush my patients. In most cases I tell them that they have time to decide, that there’s no huge rush, although I would hope they wouldn’t take more than a month to make up their minds. There are exceptions, of course. Nasty cancers that are ER(-)/PR(-)/HER2(-), so-called “triple negative” disease. These tumors tend to be aggressive and fast growing; so I don’t want to fart around. I want to get these women treated. But even for these women, except in uncommon cases, a week or two (or even three) probably won’t make a difference. If there’s one thing we physicians do that can drive cancer patients into the waiting arms of quacks, it’s to rush patients too much. True, there are cancers where delay really is fatal, but breast cancer is usually (but not always) a tumor for which the patient has the luxury of a fair amount of time to decide on a course of action.

Not surprisingly, Tinkham did what Jenny McCarthy did, and attended the University of Google. As she says in her testimonial, she Googled everything having to do with breast cancer, and she repeats how personal choice is the big thing for her. Another thing that resonated with me is that Tinkham kept asking doctors what caused her breast cancer, her criterion apparently being that if someone could tell her what caused her breast cancer she would listen to that person. The problem with this question is not the question but rather not accepting the answer, namely that science, while it does know a lot about what causes breast cancer, can’t (yet) really say what caused any individual patient’s cancer. That’s the honest answer, and that’s what I tell patients every week when I’m in clinic: I don’t know what caused your cancer. I do know the sorts of things that cause or predispose to cancer, but I don’t know what caused yours. I do, however, know how to treat your breast cancer, the odds of success, and the potential complications.

That’s honesty. It’s also humility in the face of biology that we only partially understand.

It’s also based on the realization that breast cancer has a highly variable biology from patient to patient. Because it’s important to understand the natural history of breast cancer, I’ll reference a classic study examining the natural history of untreated breast cancer. It was published in 1962 by H. J. G. Bloom, W. W. Richardson, and E. J. Harries, and examined data from Middlesex Hospital from 1805 to 1933 where 250 cases of untreated breast cancer were identified and studied. They calculated survival as the period of time from onset of symptoms to death. What they found was that 18% of the 250 patients survived five years; 3.6% survived 10 years; and 0.8% survived 15 years. Of note, it was 19 years before all patients were dead. Overall, the median survival was 2.7 years. A survival graph from this classic paper is below:

Fig1

I’ve discussed these issues in much more detail here.

In constrast to science-based practitioners, who are forced to be honest and admit the limits of their knowledge, it’s “practitioners” I consider to be quacks who “know” what causes cancer and lack the humility to admit the limits of their knowledge. Many of them focus on The One True Cause of Cancer, as Hulda Clark did when she declared a common liver fluke to be the cause of all cancer or when Robert O. Young declares that all cancer is caused by “excess acid,” which “spoils” cells and that the cancerous tumor is the body’s reaction to the cells “poisoned” by acid. In other words, such “practitioners” are always in error, biologically speaking, but never in doubt. In their arrogance of ignorance, they exude the confidence that patients like Kim Tinkham seem to need and flock to answers that are simple, neat, and completely wrong.

In fact, Kim Tinkham made it explicit by saying that Young and his wife had told her what causes cancer by saying “there is no such thing as cancer.” Again, remember that Young thinks that cancer is the body’s reaction to cells “poisoned” by too much acid, and he really does say that there is no such thing as cancer. He even goes on and on about how acid being “deposited into the fatty tissues” and thereby causing cancer. From a scientific standpoint, it’s a load of rubbish, pure pseudoscience without any good scientific evidence to back it up. But Young can assert his nonsense about tissue being due to acid “spoiling” tissues with utter sincerity. He looks completely convincing–if you don’t know anything about cancer biology, and most people don’t know much, if anything, about cancer biology. Give him a woman who is afraid, who wants concrete answers, and who has demonstrated that she is fairly clueless about breast cancer, and he can convince her that he has the answer and can cure her. The reason, it appears to me, is that Tinkham (and women like her) just want to believe that someone knows what’s wrong with them and how to fix it. Knowing how to fix it isn’t enough; they want an answer to the question, “Why me?”

Quacks are only too happy to provide that answer.

Unfortunately, we now know that the time Tinkham’s wasted “flushing herself out” with several liters a day and “alkalinizing” herself will soon cost her her life. At the time, I found it difficult to ascertain exactly what was going on with Tinkham and her cancer. I had no objective evidence and no objective tests. All I had were secondhand reports, none of which gave objective measurements of the tumor. We did know that Ms. Tinkham had undergone various useless tests. We did know that she was undergoing various other forms of quackery. We did know that her tumor was still there over three years after diagnosis, but we didn’t know whether it had grown or regressed. Most frustrating of all, we didn’t know how much longer Tinkham had before her luck ran out and her tumor started progressing.

Now we know.

Death by “alternative” medicine: Who is to blame?

Every indication I have been able to find indicates that Kim Tinkham has recently developed lung, liver, and bone metastases and is apparently in bad enough shape that she will soon die of her breast cancer. Her friends, family, and business associates have banded together to raise funds for her and her family, which makes me wonder if Tinkham has medical insurance. After all, if she has insurance, chances are that her final treatment, including, if necessary, hospice would be covered. Based on that suspicion alone, I’m tempted to donate to the fund myself, because I view Tinkham more as a victim of quackery than anything else. That does not mean that I absolve her of all responsibility for her decision. She is, after all, an adult. However, far more blame should go, in my opinion, to Robert O. Young, who claimed he could cure cancer when he can’t and offered Tinkham a false hope of cure without the pain and difficulty of undergoing surgery, chemotherapy, and radiation. It’s “practitioners” like Young who see a weakness or a need to believe in someone like Tinkham and then take full advantage of it. I can’t help but wonder if there are family members and friends who, having seen Tinkham’s choice in 2007, feared the arrival of this day. I wonder what they are going through. It must be truly horrible, particularly the guilt from wondering if they could have done something differently to persuade Tinkham not to take the course she took.

Then, let’s not forget Oprah Winfrey. Oprah Winfrey, after all, rewarded Tinkham’s decision to use The Secret as justification for rejecting science-based therapy and choosing quackery. While it is true that during her interview with Tinkham Oprah appeared distinctly uncomfortable that The Secret had lead Tinkham to reject effective therapy for her breast cancer:

This is part of the therapy that Tinkham is following.

Shockingly, Oprah actually sounds almost reasonable here. Almost. Clearly, she was disturbed enough by Tinkham’s e-mail to invite her on the show. Unfortunately, rather than have Dr. Oz (who, despite his tendencies towards woo in many areas, would be just as disturbed by a woman eschewing effective therapy for her cancer in favor of quackery) look into Tinkham’s case and possibly try to persuade her to accept therapy, Oprah’s first inclination was to get Tinkham on her show because interviewing her would be good television, even more so if the Mighty Oprah could persuade her to accept science-based medical treatment. Too bad the shock of being confronted by someone who used New Age woo that Oprah promoted instead of effective therapy didn’t keep her from later doing things like promoting faith healer John of God. How many Kim Tinkhams are out there who relied on, for instance, John of God instead of Robert O. Young for “healing” and are now dying of metastatic disease? More recently, nearly all mention of Tinkham on Oprah’s website appears to have been thrown down the proverbial memory hole. Search Oprah’s website for Tinkham’s name, and you’ll find nothing other than a couple of mentions in the community forums, such as So, what ever happened to Kim Tinkham? I wonder if Oprah knows what, in fact, has happened to Kim Tinkham. I wonder what she will say when she finds out, and I want her to find out as soon as possible. If there is still time and Tinkham is willing, perhaps Oprah would send a film crew out to Tinkham’s house to show her audience the result of Tinkham’s choice of eschewing science-based medicine in favor of pseudoscience.

The most depressing thing about Tinkham’s testimonial is that it did not have to be this way. It really didn’t. If Kim Tinkham did indeed have stage III cancer in 2007, she would have had (very roughly) a 50-50 chance of beating it if she had only accepted science-based treatment. Not fantastic odds, but way better than the odds she gave herself by not accepting treatment. By refusing science-based surgical and medical therapy, Tinkham reduced her chances to about as close to zero as you can get. Yes, it’s true, even if she had accepted aggressive science-based therapy, including surgery, chemotherapy, and radiation, that Tinkham would still have had a not inconsequential chance of ultimately finding herself in this situation, but refusing therapy guaranteed that, sooner or later, this is where she would come to. It should also not be forgotten that, as Peter Moran has pointed out for other cancer cure testmonials, it’s very common for the testimonials of people who ultimately died of their cancers to persist long beyond their deaths as “proof” that various cancer quackeries “work.” I expect to see the same thing happening with Kim Tinkham, particularly given that no mention is explicitly made on either Caring for Kim or its associated Facebook page.

Finally, I wonder what we as science-based practitioners can do to reduce the number of Kim Tinkhams being victimized in the future by dubious pratictioners. It’s too late for Tinkham, but it’s not too late for others. Ms. Tinkham has spoken over and over again about how she didn’t like the feeling of “being rushed” and how she wanted to “take control.” Doctors offered her options, but they were not options she liked. So she found others, ignoring that they have no science to support them and no evidence to suggest that they do anything to treat cancer. Even for an intelligent woman, the siren song of quackery can be strong. I’ve written about this question before in a post entitled Death by “alternative” medicine: Who’s to blame?, in which I asked: How much are we as a profession responsible when cancer patients seek out quackery rather than effective medicine? The comment thread still holds the record, I believe, for the longest comment thread in SBM history, with over 600 comments. I don’t know the answer, but I do know we need to do a better job at assuaging the fears of someone like Kim Tinkham.

Kim Tinkham has every appearance of being a lovely and vibrant woman who was only 50 years old when she was diagnosed with breast cancer. Potentially, she could have had another 30 or 40 years in front of her, but that’s all gone now. Even in spite of her bad decision, one must note that, after her diagnosis, Tinkham continued to run her own business, edited a local newsletter, and won the First Annual Civility Star Award. She did not have to die, but she is going to die soon. It didn’t have to be this way, but it is.

That is the price of quackery.

ADDENDUM:

In the wake of the revelation that Kim Tinkham is dying of metastatic breast cancer after having rejected conventional therapy for her disease in favor of Robert O. Young’s acid-base woo, Young’s response is now (possibly) known. In the comments after part 6 of Young’s interview with Kim Tinkham, a commenter by the ‘nym of inhisgrace7 reports:

I wanted to find out for myself the truth so I wrote to Dr. Young and here is his response:

Kim has always made her own decisions about cancer. Before I met her she had decided on her own that she did not want to have traditonal cancer treatments. I have had very little contact with her in the last few years.

Apparently Young had enough contact with Kim Tinkham to have taped an hour-long interview back in March 2010. For one thing, Kim has only had cancer for less than four years, and he’s been featuring her on his website all along ever since she was on Oprah Winfrey’s TV show–indeed right up to this very writing. Look for his videos and articles featuring Kim Tinkham to disappear down the memory hole, which is why I’ve downloaded web archives and copies of the six parts of the video all converted to QuickTime format. Young won’t erase the evidence so easily.

The rest of Young’s reported response as related by inhisgrace7 goes:

She called me a few weeks ago to tell me she had had breast surgery and her cancer was now in other parts of her body. She felt embarrassed to tell me this news because she had not been living an alkaline diet. Kim and their family are gratiful for the help I had given her over the years. She believes in the program, as well as the family for improving the quality and quantity of her life.

Despicable. That’s the only word to describe Robert O. Young. He’s despicable. Look at him try to backpedal, now that he’s faced with a woman whom he promised to cure and who is now dying.

As expected and as is typical of cancer quackery, the victim is being blamed for not adhering to the quack’s regimen, for not believing enough. Even worse, if this response truly came from Robert O. Young, he has just admitted that he’s been lying about Kim Tinkham on his website for at least a few weeks–ever since he got that phone call from her. After all, if this report truly came from him, Young has just admitted that he knew a few weeks ago that Kim Tinkham’s breast cancer had recurred and that she is dying of her disease. Yet he left the videos of her testimonial on his website and YouTube channel, not to mention his blog posts about how well Tinkham is doing. He didn’t even write addenda to update readers about Tinkham’s current condition. Rather, he left these glowing testimonials on the web in order to sell his woo. Look for those to disappear down the memory hole soon, too. Good thing I downloaded copies of Young’s webpage and his videos interviewing Tinkham, too.

Finally, inhisgrace7 reports that Young’s response finished thusly:

I received a beautiful letter from her son thanking me for all the help and sevice I gave to his mother. Thanks for your inquiry although the person who wrote you has no clue about what she is talking about – Kim has No regrets for the path she chose. All the best, Dr Young

I have to walk away from the computer now. I’m so angry that I might write something I’ll later regret.

Posted in: Cancer, Faith Healing & Spirituality, Health Fraud, Science and the Media

Leave a Comment (119) ↓

119 thoughts on “Death by “alternative” medicine: Who’s to blame? (Revisited)

  1. Joe says:

    How is it that this R. O. Young bastard http://www.quackwatch.org/11Ind/young3.html is not prosecuted for practicing medicine without a license?

  2. kirkmc says:

    Quackery is to blame, but as part of a very extensive belief system that is increasingly pervasive in our world. (Well, in the US at least.) This person didn’t want surgery because she didn’t like “the loss of control.” She talked about how personal choice is a “big thing” for her. But people with this sort of idea have some mistaken delusion that they can eventually know better than the experts.

    This sort of attitude is fostered by the Oprahs of the world, by the huge business of books that tell people these things. The quackery is only one part of this belief system, albeit, here, the fatal part.

    It’s the anti-rationalist belief system, that which leads people to think that a Sarah Palin is a viable candidate for president, that a Glen Beck is a valid person to listen to, that intelligent people are “elitist.” It stretches from politics to everyday life, and it’s a growing cancer in the US.

  3. BillyJoe says:

    Oprah Winfrey arrives in Australia tomorrow:

    http://www.abc.net.au/news/stories/2010/12/06/3085975.htm?section=entertainment

    Winfrey arrives in Australia tomorrow for her whirlwind nine-day visit, which will include two shows at the Sydney Opera House and another one reportedly in the outback.

    She and her 300 guests will visit the Opera House, Melbourne’s shopping districts and the Great Barrier Reef in far north Queensland.

    The Federal Government paid about $3 million to lure Winfrey to Australia and Tourism Minister Martin Ferguson has called her visit a major coup.

    Tourism Minister Martin Ferguson said:

    I think it’s money well spent.

    This truly represents an amazing opportunity to showcase Australia, the warmth and hospitality of our people and the depth and breadth of everything our country has to offer visitors from around the world.

    Tourism Australia is finally getting it together. We as a nation will win as a result of this coup.

    I wonder if there is somehow we can spoil the show – like an inconvenient question about Kim Tinkham’s state of health?

  4. Nescio says:

    This has deeply depressed and angered me, as I have followed Kim’s story for the past few years, and have argued with various alkalizing fanatics about her and others that Young claims to have cured. There was a sickening inevitability about this outcome, and I have never before found being right about something so unpleasant. This needs to be widely publicised to protect others who might otherwise be persuaded to follow the same path.

  5. weing says:

    The important thing was that she did not like her options given by science based medicine and sought an option that she could accept. This reminds me of the case of Reggie Lewis.

  6. desta says:

    Sad. Very sad.

    What I never understand is how people can convince themselves that the “alternative” treatment is less invasive and does not reduce quality of life. Okay, surgery is no fun, but when it’s over, it’s over; “flushing” out the body, ingesting stuff, having to follow strict diets that are typically absurd, and then there is the pain of cancer itself. That seems like a lot of suffering and a reduction in the quality of life.
    Then, to top it all off, you have to keep your sunny disposition through it all, since any bad mood may hurt your wishful thinking treatment.

    I don’t think the blame goes exclusively to anyone, but that quack sure carries a hefty portion of it.

  7. CarolM says:

    “I do know the sorts of things that cause or predispose to cancer”

    I’m high-risk for breast cancer, and was put on tamoxifen in anticipation of it rather than treatment. During my consult with the oncologist, I asked whether childlessness, HRT use, history of heavy drinking etc had predisposed me to breast cancer and he said no, those factors shouldn’t have any bearing. Yet I have read many times that they do.

    It’s as if he didn’t want me to *feel* bad about it…why not be up front, or if it wasn’t spin, why was he not better informed?

  8. windriven says:

    @Joe

    Young has been, though apparently rather fecklessly, prosecuted twice on felony charges related to practicing medicine without a license. Young has a Wikipedia entry that provides a few details. He pled to misdemeanors in the first instance and charges were dropped in the second, apparently because prosecutors could not find enough witnesses who would testify against him.

  9. Bogeymama says:

    It’s baffling that in the Oprah segment she insisted that her doctor was absolutely a doctor, who specializes in breast cancer. Why didn’t they call her on that? You’re right – it seems the Mighty was trying to cover her butt in that interview.

  10. Nescio says:

    Robert O. Young has apparently responded to the tragic news about Kim Tinkham, on YouTube:

    “Kim has always made her own decisions about cancer. Before I met her she had decided on her own that she did not want to have tradional cancer treatments. I have had very little contact with her in the last few years. She called me a few weeks ago to tell me she had had breast surgery and her cancer was now in other parts of her body. She felt embarrassed to tell me this news because she had not been living an alkaline diet. Kim and their family are grateful for the help I had given her over the years. She believes in the program, as well as the family for improving the quality and quantity of her life. I received a beautiful letter from her son thanking me for all the help and service I gave to his mother. Thanks for your inquiry although the person who wrote you has no clue about what she is talking about – Kim has No regrets for the path she chose. All the best, Dr Young”

    Is that the sound of desperate back-pedalling I hear? Didn’t “Dr” Young claim that it was excess acidity that caused Kim’s cancer, that an alkaline diet could cure it, and that she was indeed cured of cancer despite her tumor persisting? “It wasn’t my fault, she didn’t follow my instructions” – this sort of BS makes me sick.

  11. Robin says:

    Finally, I wonder what we as science-based practitioners can do to reduce the number of Kim Tinkhams being victimized in the future by dubious pratictioners.

    There’s a few things that doctors could do to help keep the Kim Tinkhams away from scams.

    The first is to improve how doctors communicate complex medical information to patients. A doctor has an expensive education and years of clinical work behind him/her and what may seem obvious and logical is often baffling to patients, many of whom are introduced to a frightening diagnosis and new concepts and terms all at once. Coupled with short office visit times the patient can leave their visit quite confused.

    It seems like Kim Tinkham’s diagnosis either wasn’t clearly communicated to her or perhaps she was in too much a distressed state to understand or remember it.

    Also, since most patients do not have backgrounds in science or medicine, most of them are not aware of how thoroughly drugs, vaccines, surgeries are vetted, nor do they know about clinical trials, prevalence studies, longitudinal studies or the lack of such things in alternative medicine. To many patients, University of Google advice looks all the same whether it’s from a good site like Medline Plus or something insane like Mercola’s site. Because so many alternative treatments are profit-based rather than efficacy based, the promising and compelling claims are seemingly designed to trap patients when they are the most vulnerable and in the need of hope, ie when they should know better.

    So, I think a little patient education could go a long way. Taking the time to carefully explain diagnosis and treatment in a way the patient can understand, maybe giving a handout the patient can take home and read after they are a little more calm would be useful. And then offering to help patients evaluate ALL types of treatments they may come across. Remember, you’re not just dealing with University of Google but Bob at the office who’s aunt was cured from cancer through vitamins. If the patient feels they can come to you with questions it could really go a long way.

  12. David Gorski says:

    @Nescio

    Thanks for posting the response from Robert O. Young.

    I’ve written an addendum about it.

  13. Ken Hamer says:

    “The Oprah-fication of Medicine”?

    I think there’s one too many “a”s in there.

  14. dlpfc says:

    I think a big issue Dr. Gorski’s post raises is that we in the medical field need to alter the ways we approach patients in order to more deliberately forewarn and forearm patients against quackery. I am a second year medical student, and have previously discussed similar issues with my preceptor (an Internal Medicine hospitalist). He says that a big problem is that our “customer service” in medicine is poor, and disenfranchising to the patient. I’m not sure how to make the patient feel more empowered in the face of cancer, but we can at least warn them of the deceptive claims they will find online.

    A second issue he mentioned is that patients, upon receiving their diagnosis, tend to hear, “I’m sorry but you have cancer…blah blah blah. Blah blah blah…” Again I’m not sure what’s already out there but we need programs to give patients time to process and a way to ask questions later as they come up. Personally even with the most routine visit I always think of more questions five minutes after I leave. With easy access to real experts we might be able to prevent patients from turning to the University of Google.

  15. Joe says:

    @windriven on 06 Dec 2010 at 12:00 pm, Thanks.

    @Robin on 06 Dec 2010 at 1:02 pm, While poor communication happens, especially when the doctor is delivering devastating news, it is not the case here. Ms. Tinkham understood that A) she has cancer and B) the doctor advised surgery. She clearly, flatly rejected the advice.

    As I think about it, I doubt patients ever turn to quacks due to poor communication from doctors. Except, unless you want the doctors to teach each patient enough about general science, biochemistry, pharmacology, anatomy and physiology to recognize quackery- an impossible task. As it stands, if Mr. Young claims to have proof that cleansing and alkalizing are more effective than surgery, most people ask themselves “Which of these ‘authorities’ am I to believe?” Then they go with the one they want to believe. Ms. Tinkham wanted to forgo surgery, so she went with the quack.

  16. ConspicuousCarl says:

    I think that there will always be these people who can’t help but believe the “good news” over the “complex news”, so we can’t look at such tragedies and assume that something could have been done. We have to look at the successful cases, and consider how everyone used to get sham treatments whether they wanted it or not.

    Maybe we should think about gullibility in the same way as we think about cancer. It’s not all going to go well. The natural state is not a pretty picture, but if education can reduce bad decisions by 50% and surgery/chemo can reduce stage 3a breast cancer deaths by 50%, those are good things. Don’t stick yourself in a criminal lineup for failing to stop all of the real bad guys.

  17. ConspicuousCarl says:

    And I am sure it is very easy for me to say that because I have never had to look at a sick person and then see them walk away to go (more or less) kill themselves with bad decisions.

  18. Robin says:

    @ Joe

    I’m not espousing physicians give an entire lecture on science for every patient.

    Tinkham clearly didn’t understand the details of her cancer or much about cancer and its progression. Knowing you simply have “cancer” is insufficient. And turning down treatment (initially) is not unreasonable; even people well educated about medicine seek second opinions when facing invasive or risky treatments or surgery.

    Even with better handling by physicians, Tinkham’s choice may have been the same. Or it may not have. But I think you’re underestimating the importance of communication.

    I just know how many people, friends, family, myself, have left doctors’ offices with very little information. Sometimes physicians do not even give patients a diagnosis.

    The less advice given, the more likely the patient is going to turn to Google and I’m very well aware of people who have either not followed medical advice or sought altnerative advice because of a lack of communication in the exam room. There are many studies demonstrating the positive effect of patient education on treatment adherence for all kinds of things; I’d hypothesize the same could be said for treatment choice.

  19. pmoran says:

    We probably could communicate better.

    I doubt if all oncologists take into account that the usual breast cancer patient is feeling perfectly well, with minimal or no symptoms, yet, blam! — here’s this young doctor wanting to take a knife to their precious breasts and immune system, then blast them with radiation, and — oh, no, not that! –also “poison” them with chemotherapy — and as though it was the most natural thing in the world — expecting them to go along with it all without question, even showing some impatience with their last twenty questions.

    Is it any wonder this is a prime area for quackery?

    “ God, will I ever be a normal, healthy person again! Surely it’s not THAT serious. Perhaps there’s time to try something else. Perhaps what they are saying about doctors is true. Or maybe the severe treatment is because it’s much worse than they are letting on, and the treatment will make no difference anyway. Why not see how I go for a while with these easier, natural treatments?” ( — not realising that the alt. culture will suck her further in, and she will soon lose all comprehension as to how well she is faring and what she should be doing).

    In previous posts David has demonstrated the depth of information we have about the results of various ways of treating breast cancer. It is extremely time consuming, but proper informed consent requires that we should ensure that patients have access to all relevant information. That will explain why we advise certain approaches, also giving patients choices they can make should they choose to swap one set of risks for another.

  20. JMB says:

    Dr David Gorski,

    You know you’re right and you have hammered your point home. Please be wary of a legal fight with the patient or patient’s family. Your posts are too important as a light of reason in medicine to be suspended because of legal action. Please consider consulting a lawyer and taking down your copies of the youtube videos until you have some consent from the patient or patient’s family.

    Fight for SBM here, but avoid the court of law.

  21. Dr Benway says:

    I am a second year medical student, and have previously discussed similar issues with my preceptor (an Internal Medicine hospitalist). He says that a big problem is that our “customer service” in medicine is poor, and disenfranchising to the patient.

    Sometimes I think this way. Other times I think the problem is the culture around us ever increasing its focus upon measures of subjective value to the detriment of objective facts.

    Please, dear humans. Turn off Oprah; put away “the Secret,” and stop imagining yourselves as extra special precious snowflakes deserving of “customer service.” Just get your ass in line with the rest of us awaiting our largely mediocre doctoring. It really is your best shot at surviving your cancer diagnosis.

  22. David Gorski says:

    No worries.

    Who said I posted the YouTube videos? All I did above was to embed them using Robert O. Young’s very own pH Miracle Center YouTube channel, something that’s very easy to do by clicking “embed” on the video page and then copying the embed code to the blog, something that is entirely legal if the video owner enabled embedding–and I bet Young encouraged embedding before it became widely known that Tinkham is dying.

    You’ll note that now if you click on the videos they bring up a message that says “Video removed by user.” That’s Robert O. Young taking his videos down. When I said I downloaded the videos, I didn’t mean that I reposted them on my own YouTube account. What I meant was that, anticipating that Young would take down his videos, I downloaded copies to my computer, there to sit in case Robert Young tries to claim that he didn’t say the things he said. I have no intention of posting them because that would leave me open to a DMCA takedown order and possible legal action for copyright violation. Consider it prudent self-protection.

  23. Chris says:

    Hmmm… it makes me wonder about the videos left on Young’s youtube channel. Are they still healthy, sticking with his program, or even alive?

  24. ejwillingham says:

    This is one of the best posts I’ve ever read on SBM. I’ve a friend who is an oncologist who specializes in breast cancer. She lives in a place where people tend to alternative “treatments,” and she told me a year ago that she’d had at least seven patients come to her with cancers that had metastasized since the original diagnosis because they’d refused conventional treatment and sought “herbal” remedies, etc. In three cases, the outcome was dire…these young women died.

    Is there any information about how men respond to their news of cancer and discussions with surgeons about treatment? Do they report a need for “control” or to “be heard”? If there are sex-based differences in response, perhaps the medical profession could take this into consideration and investigate ways of empowering female patients in their care. If it’s applicable to both sexes, then empowering should be a universal goal.

    Also, since these money-grubbing quacks get away with their death-dealing garbage by sounding sciency, I don’t see anything particularly wrong with getting into some of the science with patients, too, treating them as listeners who can learn about their condition from you just as much as they can from Google. I suggest that for a patient, being treated as a partner rather than as a “subject” (can we stop using that term in papers any time soon?) is an important factor.

  25. BillyJoe says:

    I think doctors could always do better in their communication with patients – but remember they also need to leave time to do the actual treatments, otherwise no one will actually get treated – but I think the real problem is that there are alternatives out there. If the alternatives were made accountable and outlawed more patients would go with the treatments that actually work.

  26. ConspicuousCarl says:

    Wow, Oprah actually does try to steer Tinkham towards reality here, though the effort is limited:

    http://www.youtube.com/watch?v=7uf-5yuRiPs

    This makes me even more angry at whatever SOB dumped the diet BS on her. While Oprah and Tinkham are both delusional about “the secret” being a reliable “law”, Tinkham also seems to think that she is using the magic nonsense on top of a “real doctor”. This is really messed up because, although Tinkham was being reckless in shopping around for a happy answer, in some way she really does seem to have thought that she was not turning away from modern medicine entirely in choosing her diet death.

    Oprah’s obvious discomfort from (and accommodationist argument against) the news of Tinkham skipping drugs/surgery and only doing a “diet” at first dribbled a little unexpected respect into my head. Wow, she isn’t a total idiot and she is bothered by people dying from quackery! But as I was about to type that, my confusion cleared up. This video really only shows:

    1. She knows better, and therefore must have known better about a lot of things.

    2. She experiences moral discomfort when looking directly at an individual who is turning away from a possible cure and choosing almost certain death based directly on junk promoted by Oprah herself. Not a very high bar.

  27. Jann Bellamy says:

    This sad story is another example of why we need laws making health care practices and products which have no plausible basis in science ILLEGAL. Unfortunately, the state and federal governments have done just the opposite, making “alternative” medicine seem like a reasonable and safe option to the public.

    It is also an example of how the news media uncritically accept testimonials like that of Ms. Tinkham. Her local newspaper ran two articles about her “treatment,” and quoted extensively from “Dr.” Young, mentioning his “multiple degrees,” including his post-grad degrees from American College and the Clayton School of Natural Healing, two now defunct correspondence course schools. The articles describe Young as a “microbiologist” who “has focused much of his career on disease research.” They read like infomercials. Had these reporters done the least bit of research, they would have quickly uncovered Young’s prior conviction for unlicensed practice of medicine, and a brief interview with any legitimate cancer researcher would have exposed Young as a total quack. http://www.wcmessenger.com/holistic/part_one.shtml.

  28. Jann Bellamy says:

    Forgot to mention: To add insult to injury, the Tinkham articles won the newspaper an AWARD from the Texas Press Association!

  29. Watcher says:

    Well, we know Texas isn’t necessarily the shining star when it comes to logic. This just kind of follows that same vein of belief and faith in the supernatural and/or impossible.

  30. An idea occurred to me reading this article…

    First it struck me how different Kim Tinkham and I are. Seriously looking at my hypothetical response to a life threatening illness, there is no way I would make her choices and this is taking into consideration that I am a big Google U consumer*.

    Sometimes it looks to me that there are people who are susceptible to extreme alternative medicine in the same way that some people are susceptible to drug or alcohol abuse. You often see this sort of “science blindness” in people who choose extreme* alternative medicine options and in some ways it looks to me like that lack of perspective that one sees in someone who has an addiction problem. That is, it may be very clear to all the people around that person that their use is problematic, but it is often not clear to the person who has the problem until things have become very, very bad.

    This led me to wonder if banning/barring or increasing regulation of alternative medicines would not meet with the same problems that banning and regulating recreational drugs (or alcohol) have met with; that those susceptible people continue to seek out the product and find it via illegal channels, in spite of it no longer being legal.

    So instead of thinking of a model where a scam artist is creating a market for their product, I think there is an interdependence where the scam susceptible create the market and the scammers perpetuate it. (or maybe reversed or both.)

    This is a long way around the block, but this makes me wonder if instead of assuming that only banning scam and educating the public are the best tactics we should look at scam susceptible people to see if there is something like coping skills, personality, etc that make them more scam dependent and look for ways to overcome that susceptibility on a more individual therapeutic way as is being attempted with substance abuse patients.

    Just a thought.

    *I use the web to look for the best conventional medicine approaches, not to look for alternatives.

  31. Joe says:

    @Robin on 06 Dec 2010 at 4:14 pm wrote “… Tinkham clearly didn’t understand the details of her cancer or much about cancer and its progression. Knowing you simply have “cancer” is insufficient. …

    Even with better handling by physicians, Tinkham’s choice may have been the same. …

    When I was young, a diagnosis of cancer meant inevitable death and the only question was how long one could survive with it. Today, I find myself assuring people that it is not necessarily a death sentence.

    Ms. Tinkham is younger than I; but your suggestion that she did not understand what cancer means flies in the face of common sense and experience.

    Your last sentence (that I quoted) assumes that she did not get the best “handling” by her physician. You are arguing about facts not in evidence. A fact in evidence is that she was predisposed against surgery. So her rejection of medicine would likely have been the same.

  32. Dr Benway “stop imagining yourselves as extra special precious snowflakes deserving of “customer service.” Just get your ass in line with the rest of us awaiting our largely mediocre doctoring. It really is your best shot at surviving your cancer diagnosis.”

    This is not a direct response to your quote, but it reminded me of something I observed in my father.

    Some people seem to have very low expectations when it comes to medical care. My father’s attitude was that all doctors were basically quacks that were out to get your money. Sadly, the care that he received from a couple of his doctors was genuinely poor. (Dropping the ball on a positive prostate cancer result and possibly a poorly preformed surgery and follow-up). But my father chose to stick with those doctor and seldom advocated for himself because he figured anyone else he saw would be equally bad and that the doctors wouldn’t listen regardless of whether he advocated for himself or not.

    This makes me wonder if people who have a negative attitude about conventional medicine, do not get overall lower quality care, due to their lack of interest in educating themselves about conventional medicine, advocating for themselves and finding a physician that they feel they can trust and work with.

  33. Regarding both my posts, sorry punctuation and grammar all seem a bit beyond me today.

  34. Roadstergal says:

    “First it struck me how different Kim Tinkham and I are. Seriously looking at my hypothetical response to a life threatening illness, there is no way I would make her choices and this is taking into consideration that I am a big Google U consumer.”

    No kidding. M’boy found something that seemed like a lump a couple of years ago. It turned out I just have fibrotic breasts (my doc palpitated them) and had gone through a particularly lumpy phase – but if it had turned out to be an actual cancerous lump, I would have signed up for surgery on the same day, if possible. :p

    I lost one parent already to a cancer that was utterly untreatable by the standards of the time, so having actual science-based options available, and not taking them… my brain just doesn’t accept that.

    I agree with your conclusion, by the way – people fly out of the US at great expense for psychic surgery and ‘stem cell treatments.’ Illegality here will not be much of a barrier.

  35. Dr Benway says:

    Sadly, the care that he received from a couple of his doctors was genuinely poor. (Dropping the ball on a positive prostate cancer result and possibly a poorly preformed surgery and follow-up).

    Sorry to hear about your dad.

    In my “get in line” quip I hoped to convey the idea that cancer patients should focus upon known facts rather than all the other factors that have no impact upon survival.

    I mean, so what if the “allopathic” doctor has the charisma of an old scrod while the “wellness center” across town has aroma therapy, amazing interior decorating, and attentive staff happy to chat you up. So what if you have to pester Dr. Meh to return your calls while Dr. Wonderful makes you feel pampered and cared for.

    As a cancer patient one *should* be assertive but not for the sake of how one is made to feel as a “customer.” When your life is on the line, focus upon facts! Screw everything else.

    Imagining that “customer service” is somehow important in cancer survival may be the first hurdle to overcome in the fight against alt med delusion.

  36. Jann Bellamy says:

    @ michele: “This led me to wonder if banning/barring or increasing regulation of alternative medicines would not meet with the same problems that banning and regulating recreational drugs (or alcohol) have met with; that those susceptible people continue to seek out the product and find it via illegal channels, in spite of it no longer being legal.”

    I disagree. There may be some who fit your description. However, the reason so many people seek “alt” med is that they assume their practitioner is telling them the truth, or that the label on a product is factual. The state health care practice acts and federal laws on supplements and homeopathy have added their imprimatur of legitimacy. If these governments ‘fessed up and told the public that whoops, we made a mistake, and these practices/products should never have been allowed in the first place, I don’t think most people would continue to seek out “alt” med. Plus, it’s not addictive like alcohol and many drugs.

  37. Dr Benway says:

    I agree with your conclusion, by the way – people fly out of the US at great expense for psychic surgery and ‘stem cell treatments.’ Illegality here will not be much of a barrier.

    The 1980s were better. We can roll back the clock thusly:

    - Repeal DSHEA.
    - Let doctors call chiropractors “quacks” and spades, spades.
    - Get “integrative” medicine out of our medical schools.
    - Marginalize the moonbats to the old downtown store fronts.
    - No more weasle-worded Miranda warnings that confuse patients.

  38. ribaaasu says:

    Kim’s Facebook page has been updated: she’s dead. Her life was tragically cut short due in part to her own ignorance, but mostly because of a greedy scam-artist.

  39. David Gorski says:

    So noted in a note at the beginning of the post.

    How very depressing.

  40. Fifi says:

    Dr Benway – The whole idea that one is a customer and not a patient is problematic in and of itself on multiple levels. It’s a sad by-product of for-profit medicine, which by its very nature turns patients into customers. It encourages the kind of confusion between medicine and pseudo-medicine that this blog often talks about. Not only between medicine and CAM but also between necessary and useful medical treatments and profitable but unnecessary and not particularly useful treatments. And, of course, there’s the floodgates that were opened when pharmaceutical companies were allowed to market directly to “consumers” rather than medicines being prescribed by doctors to patients when they were needed. “Doctor shopping” used to be a pejorative description of drug addicted patients who “shopped” for doctors to prescribe to them. We’re now so far down the rabbit hole that the average patient has become a consumer that shops for the “best” (meaning on they find the most pleasing) doctor. Well, those that can afford doctors. It really is a bit different than checking a doctor’s record and credentials to see if they’re good at what they do.

  41. ConspicuousCarl says:

    Fifion 07 Dec 2010 at 8:36 pm
    “Doctor shopping” used to be a pejorative description of drug addicted patients who “shopped” for doctors to prescribe to them. We’re now so far down the rabbit hole that the average patient has become a consumer that shops for the “best” (meaning on they find the most pleasing) doctor.

    I think you are implying that there is no reason to choose one formally qualified doctor over another, and that is false. Not all real doctors are whatever ideal you may be imagining, even if they do have all of the right paperwork. Your doctor is a person who will need to communicate with you and make time for you in various ways. It isn’t just a matter of starting at blind acceptance of any qualified doctor and slipping towards drug addiction or self-delusion. People do need to shop around.

  42. “People do need to shop around.”

    How?

  43. Chris says:

    Alison Cummins:

    How?

    Well, first you make sure that they have not “graduated” from a diploma mill.

    Levity aside, our family doctor has been pretty good at referrals. The same goes with our dentist. True they usually know each other, but they do rely on a network of sorts. The family doctor had us change neurologists after doing some queries. But in conversation with the dentist’s office manager (also his wife) I was told they were no longer to refer to another dental specialist for various issues they had with him.

    The only time this broke down was when I was trying to find a psychologist for my son. The family doctor’s office had me call a psychologist they knew would not be appropriate, but did know of one. He did give a good reference. Which by a not so strange coincidence was also recommended by some of special ed. staff at the school (and on a third bit of enforcement was spoken quite well by his preschool teacher who I ran into… oh, and he was in high school).

  44. Chris,
    Ok, so patients do *not* shop around. Their doctor does that for them.

    … realistically, patients “shop around” by seeing doctors and then deciding whether they felt good about the visit. Patients don’t have much more to go on than that.

    (Psychiatric patients may not even have that, whether because they are told that therapy is supposed to be unpleasant or because they know that their judgement is impaired.)

    I’m guessing that Kim Tinkham felt good about her visits with Robert O. Young.

  45. Chris says:

    Yep, that sounds about right. The problem is that Ms. Tinkham may have “shopped” around and decided on a guy who told her what she wanted to hear. She did not want surgery, and was a afraid chemo.

    Plus, she may have had insurance issues. But that is another issue.

    (oh, yeah… tell me about psychiatry patients! The well regarded educational psychologist working with my son finally dismissed him because he would not speak to him… though in the end, a goal was accomplished — he started to do his school work, and he knew we really wanted the best for him, it is still a work in progress)

  46. desta says:

    I’ve had medical doctors who seem qualified in all other aspects recommend accupuncture, supplements, and such, and I’m pretty sure they write “problem patient” on my chart when I ask for study/scientific evidence and plausibility explanations.

    “Shopping around” for a good doctor will mean different things to different people. Most regular people I know have very few choices in the physicians they can see due to health care coverage.
    I’m not saying the kind of shopping around which is being discussed here doesn’t exist; I just don’t know how much that contributes to the quack problem.

  47. cloudskimmer says:

    Re.: shopping around

    That’s an unfortunate byproduct of the medical system in the United States, which allocates medical care based on what you can afford, or what your insurance company will (grudgingly) pay for, instead of what you need. It’s based on denial–belong to medical group A means you can’t see any doctors in the other groups unless you pay out of pocket. I know there are problems in other countries, but it aggravates me terribly that every other developed country covers everyone and pays half of what we do. Roadblocks put up by insurers surely have something to do with the fact that people seek out quacks–as they do in third-world countries where medical care is unavailable to most people. And yet I still have to listen to Senator McConnell say that we have the best health care system in the world… which we don’t, by any rational measure. UCLA Hospital loves the headlines when they do a free siamese-twin separation surgery, but hundreds of people line up to be treated in a parking lot nearby by a charitable group because they can’t get health care. It’s shameful.

  48. marcus welby says:

    CloudSkimmer is correct. Our dysfunctional and expensive healthcare nonsystem is horrible and a disgrace. The ACA reforms will add to the confusion and administrative waste, pushing overhead from 31% toward 35%, in my opinion. We must have a single payer system if we are truly to get to universal comprehensive coverage and control costs. Central control would allow for true comparative effectiveness and fair, effective rationing, which we must have…which one could hope would eliminate most of the CAM, if not all. Due to the power of special interests and need for our politicians to raise massive amounts of money, the U.S. will try everything else before getting to the single payer system we must have.

  49. David Gorski says:

    Central control would allow for true comparative effectiveness and fair, effective rationing, which we must have…which one could hope would eliminate most of the CAM, if not all.

    Because the British NHS and Canadian single payer plan have been so effective at getting rid of most, if not all, of the CAM…

    Right.

    Look, I agree that our current health care funding system is a dysfunctional mess. Over the last decade, I’ve even come to lean towards supporting a single payer plan. However, arguing that single payer would get rid of CAM is not a good argument.

    Two words: Tom Harkin.

    Two more words: Dan Burton.

    Yes, there are reasons to support a single payer system, but eliminating CAM is not one of them because single payer won’t.

  50. weing says:

    I still believe that, when faced with a diagnosis and treatment options that we don’t like, we have a tendency to search out people who will tell us what we find more acceptable/palatable. It doesn’t even have to be CAM. Just look at the case of Reggie Lewis a few years ago. He sought out a cardiologist that told him what he found acceptable.

  51. “I still believe that, when faced with a diagnosis and treatment options that we don’t like, we have a tendency to search out people who will tell us what we find more acceptable/palatable.”

    On what basis are patients to do anything else?

    Efficacy and compliance are central concerns in medicine. If someone is not going to get surgery no matter what because the idea is unacceptable to them, we can eliminate all the CAM we want but all that’s going to happen is that they are going to be noncompliant to their oncologist’s science-based recommendations.

    One of the tricks in caring for patients is finding things that the patient can and will do.

    When weight training many years ago I damaged my knee and could no longer climb stairs. (I had hired an instructor to teach me how to weight train safely — and followed them — but the instructions were not good.) I saw a «physiatre» (english is ‘physiatrist’ or ‘physical medicine specialist’?) who told me to come back in two weeks to begin a series of ultrasound treatments. That was the beginning and end of his feedback to me. I asked if I should limit my physical activity and he just looked at me funny. I didn’t get a clear answer, but I think that he thought it was obvious that if it hurt I shouldn’t do it. I lived on the second floor, so not using stairs was not an option and I still didn’t know whether he was telling me to move out immediately.

    Well, I didn’t like what my doctor was telling me. I didn’t like the idea of being treated by a machine for something that I had done to myself mechanically. I wanted to feel more engaged, less passive. So I shopped around until I found a doctor who would give me treatment options I found more acceptable.

    On the advice of a friend I went to a sports medicine clinic where I was seen by a doctor who told me what was wrong with my weight training routine, gave me exerises to do, prescribed a brace to hold my kneecap in place and told me where I could buy it that day.

    I found this consultation more personally satisfying, and I preferred the treatment options the second doctor offered me. I have no basis for judging their relative science-basedness; all I know is how I felt about them.

    What really is the difference between me and Kim Tinkham, besides the fact that she’s dead?

  52. weing says:

    “What really is the difference between me and Kim Tinkham, besides the fact that she’s dead?”

    Dumb luck?

  53. vicki says:

    Another aspect of doctor shopping. I go to a doctor who I like in part because he gives me straightforward explanations of what’s going on, and whether a treatment is appropriate for me. I talked to someone else who didn’t like him, because of his bedside manner. Same approach, different reactions: and that may be because I want a more technical explanation than she does.

    Or maybe she was also unhappy with “there’s only so much we can do for this condition,” and decided to look elsewhere. (I don’t like it either, but changing doctors is not going to produce magical advances in medical research.)

  54. “What really is the difference between me and Kim Tinkham, besides the fact that she’s dead?”

    Well, you knew that you had some wiggle room to try another approach in your treatment. Unless the sports medicine person was prescribing very high risk drugs or surgery, I would guess you were looking at continued pain vs possible pain relief, not possible remission vs almost certain death. It’s reasonable to think that people do weight those risks differently and put more time into research when heavier consequences are at play.

    On shopping around.
    I think I am the queen of shopping around, by the way. Amongst health care providers there is a range of competence, technical skill, communication skills and willingness to keep current in their field. I look for people who provide a good balance of those traits. When I was looking for a cleft team for my son, I joined a group of other parents of kids with cleft, I got recommendations and observations on cleft teams in our area. I also contacted family and friends who work at local hospitals, our pediatrician and asked about the reputations of surgeons, speech pathologists, etc. When asking peoples opinions I automatically rule out people who don’t have personal experience or seem wacko (I ignore “My cousin knew someone who knew someone who…” or “all anesthesia causes brain damage type comments.) When I have trouble working with a health care person, I go to the parent groups and ask advice from others. This has been a good way to get perspective on common problems with tips on working them out and uncommon problems that might indicate a need to look for another provider.

    Of course it’s important to find a reasonably large group with pretty sensible parents (grandparents). Since my son’s conditions are more common, cleft lip and palate and unilateral hearing loss, I have been fortunate enough to find those groups.

    When a particular treatment plan, device or test is recommended I go to other BTDT parents and see if their experience with that device, treatment, test generally matches how it was represented by the doctor or other health care provider. I also check organizations like “American Cleft Palate and Craniofacial Association” or “American Speech Language and Hearing Association” for standard of care, resources and information for individual conditions. I find if I get information from several sources, I can sort of triangulate and get a sense of what treatments are mainstream, current and what the general acknowledged risk/benefits are. I think all of this information collection also makes our time in the room with doctors more effective because I can ask relevant questions in one meeting rather than thinking of them after the first appointment, then going back.

    Weing mentioned that people shop around for a doctor to tell them what they want to hear. I agree that is very problematic. To me that looks like what Kim Tinkham did. I do try to guard against that human tendency in myself.

    I try to keep in mind that I am dealing with about six “experts” (different surgeons, doctors, audiologists, speech pathologist from clinics and schools and teachers trained in speech and hearing loss) at any given time, it is almost inevitable that I will sometimes get the wrong idea in my head*. I treasure a medical person who can respectfully tell me I am wrong and explain to me in terms I understand why they believe their recommendations will benefit my child more than the plan I am putting forth. This is not hypothetical, it has happened two or three times. I also treasure a medical person who can listen and see where it is safe and productive to adjust a treatment plan based on my observations.

    At this point, I feel this method has worked pretty well for us**. But to be fair, it is reliant on a few things. I live in an area that is very well supplied with good quality medical care. My son’s primary condition is reasonably well researched and has some good science based treatments and I am (I think) by nature very skeptical of miracle cures, easy fixes and the like.

    *Folks will think I get these wrong idea from google u, but not usually. Most times it has been another health provider with older information, from a different “school of thought” or giving opinions slightly outside their specialty.

    **knock on wood. I may not believe in miracles, but I do believe in bad luck. :)

  55. Dr Benway “As a cancer patient one *should* be assertive but not for the sake of how one is made to feel as a “customer.” When your life is on the line, focus upon facts! Screw everything else.”

    I think most disagreement I might have would be more semantics…what our definitions of customer service are.

    But I agree a “have it your way” or “service with a smile” approach to customer service is not a good route for medical care.

    Generally, I would compare medical care to some other complex profession that has serious safety concerns, such as architecture or engineering. It’s important for the provider to be aware of the clients goals and constraints. Communication is important so that everyone is on the same page to prevent mix-ups and undue stress. The client needs to be aware that regardless of their “vision” the provider can only offer solutions that are physically feasible in terms of the laws of physic and quality and safety. The provider needs to honest on what they can and will deliver.

    Also the client shouldn’t hire an expert, then treat them like a tool and design the building themselves. That’s just stupid. But, the provider should recognize that the client will be living in the building (or body) and they should treat that building with the same care and respect that they would like their building to be treated. :)

    That’s generally, what I would consider to be good to excellent customer service.

  56. micheleinmichigan,

    You talk about using several different resources — would any of them happen to be on the internet? Because here at SBM you know what we think of people who use the internet to find resources and get information. (What, is SBM on the internet? Um, well, um. Ok, it’s not selling anything. That’s it.)

    Patients were so much better off back when there was no internet.

    I’m being snarky, but I hate the double-bind where patients are held accountable for choosing the wrong heath-care provider or being satisfied with the wrong recommendations or options, but are derided for thinking they are “educated” when they try to find out what’s going on by researching their particular area of concern.

    I didn’t have a lot of wiggle room with my knee therapy: without my knee I couldn’t work. The sports medicine doctor gave me a brace so I could get back to work right away, which pleased me better than lying at home waiting for a magic machine to be pointed at me. So that’s what I chose.

    If I had cancer, sure, I’d talk to different doctors and seek out people who‘d had similar experiences. But ultimately I would choose the option I could feel best about. To be in a position to really understand my options I’d have to be an oncologist. Which I’m not.

  57. Alison “I’m being snarky, but I hate the double-bind where patients are held accountable for choosing the wrong heath-care provider or being satisfied with the wrong recommendations or options, but are derided for thinking they are “educated” when they try to find out what’s going on by researching their particular area of concern.”

    Oh, I’m not that fond of that either. I just ignore them in that regard, mostly. :)

    I think the deriders are thinking of the most irresponsible surfers who seem to show little regard for finding credible sources and ignoring people who put a lot of effort into finding credible sources, checking facts, etc.

    You know, the first time I came across the whole autism/vaccination mythology, it was some woman complaining about her SIL re-vaccinating her internationally adopted child and thimerosal, etc. I thought “HUH?” and checked the internet. The first credible resource I found (I think the FDA) gave me accurate info, so did the second and third. Obviously some people do not find accurate information. I think those people are experiencing a flaw in critical thinking skills that will be problematic with any information gathering efforts, not a general flaw in internet self-education. Just IMO, of course.

  58. pmoran says:

    If I had cancer, sure, I’d talk to different doctors and seek out people who‘d had similar experiences. But ultimately I would choose the option I could feel best about.

    An approach I would like to understand better. You would be offered the regime that is known provide the best absolute cure and survival rates and the most acceptable cosmetic and “body image” outcomes.

    What considerations would lead you to want to do something different?

    (Don’t misunderstand –I know myself of some modifications that won’t affect outcomes significantly. I want to know how your mind is working).

  59. “You would be offered the regime that is known provide the best absolute cure and survival rates and the most acceptable cosmetic and “body image” outcomes.”

    If I see three oncologists and they all say exactly the same thing, one single regime, that’s easy.

    What if one of them feels “most comfortable” doing a radical mastectomy, but the other two don’t think it’s necessary?

    What if one thinks that the biopsy probably got it all and just wants to wait?

    What if there’s division of opinion on the benefits of post-surgery chemo?

    The only reasonable choice would be to go with what I felt most comfortable with, whether that was because of my relationship with the oncologist or because of what my risk-aversion is telling me.

  60. pmoran says:

    Allison, I see. You are prepared to accept where there is consensus. The circumstances you describe certainly could arise with cases that don’t fit into any clear-cut group.

  61. Geekoid says:

    Alison: I choose the one that has the greatest chance of success.

    My approach to a medical professional is as such:
    1) Are they the best I can get at the specific need?

    2) Good bedside manner is icing as far as I am concerned.

    I have friends and family that can do the touchy feely. IN fact, that best because it gives my loved ones something to do instead of just fret.

  62. Geekoid: “I choose the one that has the greatest chance of success.”

    And you evaluate that how?

    When I busted my knee, what was I supposed to do exactly? Visit three doctors, write down their recommendations and hie me to the McGill Medical library to try to figure out which one would be best for me? Not only would that delay getting any help at all, but it would make me a target of derision and pointing for thinking that I could teach myself more this way than my doctors had learned in their years of intense training.

    I saw a doctor. I didn’t like the proposed treatment. I saw another doctor. I liked the proposed treatment. I got better.

  63. Scott says:

    I agree with Alison. The general public is not in a position to evaluate the relative merits of different treatment plans, or the relative skill level of different doctors. That’s particularly true when there is time pressure, as is so often true with medicine.

    For that matter, I severely doubt that most commenters here would be able to do so effectively. Those who are themselves medical professionals will be in a good position for it, but what about everybody else?

    That’s why I favor much more regulation of what treatments can be offered, even though in general I’m a very firm proponent of free markets. Free markets simply don’t work when the consumers do not have, and cannot practically obtain, sufficient information to reliably evaluate competing products. Even something as scientifically clear-cut as chiropractic takes quite a bit of research and background to really evaluate.

  64. @ Geekoid

    “My approach to a medical professional is as such:
    1) Are they the best I can get at the specific need?

    2) Good bedside manner is icing as far as I am concerned.”

    Spoken like someone who has never experienced truly bad bedside manners. I don’t expect my doctors to be charming, charismatic or emotionally nurturing, but I consider being respectful, a reasonably amount of sensitivety to a patient’s emotional state and an ability to communicate (instead of dictate) integral to providing quality care.

    I occasionally see comments on this site that seem to view a good bedside manner as some form of luxury spa pampering or hallmark moment connection. To most patient (and patient’s parent) that I know, that is not the general view. Most patient’s that I know are not looking for someone they want to have a beer with. They are looking for a medical provider who is excellent at what they do, gives a heck and doesn’t make the experience of care any more uncomfortable or painful than it needs to be. A good bedside manner is often how the last criteria is accomplished.

  65. Dr Benway says:

    The question, IMHO, isn’t, “does bedside manner matter,” but rather, “has our generally narcissistic culture elevated subjective value so high that we no longer bother to separate opinions from established facts?”

    Listen to the healthcare marketing words of today: “empowered,” “wellness,” “freedom” –i.e., “you are a very special snowflake indeed!”

    Some celebrity says, “I took control of my health. I picked the chemotherapy regimen that didn’t make my ass look big,” and no one blinks.

  66. Dr Benway, IMO – It’s just no fair using Fight Club references in an argument. I am too big a fan. It completely undermines my will to disagree.

  67. vicki says:

    And remember that “good bedside manner” isn’t measurable on a single axis, like “how tall is this person” or “how many times has Dr. X performed this procedure in the last 12 months?” A communication style that appeals to one patient may put another off. But that’s different from “did s/he answer my questions?” and “did s/he tell me the truth about my condition?”

    The discharge nurse who told me I should be on a low-fat diet, implying that it was specific to my recent surgery, but–my best guess based on thinking about it after consulting the surgeon–actually because she believed that everyone over age 2 should be on such a diet was friendly, but that’s not the point.

  68. Also Dr Benway – If it’s not too personal, I wonder what region you are from or what socio/economic group you work/hang with? I think I can see your point, but the “special snowflake” ideal doesn’t seem to match most of the people I seem to come in contact (white and blue collar midwesterners) with and discuss doctors and or health care with. Or are you talking specifically about CAM users?

    I don’t mean to be argumentative, I’m just curious about what seems to be the disparity between your and my experience.

  69. Dr Benway says:

    I’m not sure we disagree, michelle. I think we’ve probably got different pictures in our heads for the general terms we’re using, like “subjective value verses objective value.” It’s always like this on the webs.

    Alt med is subjective value, full stop. If humans were to put objective value first they might not be so taken in by alt med.

    Here’s an evil marketing guru arguing for a Brave New World where subjective value is allowed center stage:

    Kim Jong Il on How to get Teens Smoking Again

  70. micheleinmichigan,

    In my experience, blue-collar folks lose a lot of respect for people who patronize them. Maybe that’s what Dr Benway means about being a special precious snowflake?

  71. The thing is, the subjective value is the part a patient can evaluate. In my case it goes something like this:
    — Does the doctor give any indication of hearing what I’m saying?
    — Does the doctor share my values? (In the case of my knee, the first doctor I saw did not appear to share my value of walking.)
    — Is the doctor able to respond to questions in a way that makes sense? (In the case of my knee, the first doctor I saw couldn’t give me much beyond a panicked stare.)

    If I don’t have any evidence that a doctor understands what I am doing in their office, I am going to have less confidence in their recommendations. What other outcome is there supposed to be? They might be extremely knowledgeable and technically accomplished, but if they don’t know what my problem is that doesn’t help much, does it?

    This isn’t about being touchy-feely. It’s about patients using the best evidence available to them.

  72. Dr Benway says:

    This isn’t about being touchy-feely. It’s about patients using the best evidence available to them.

    I made cancer survival the context for my point about subjective verses objective value, because the outcome of interest is highly objective: tumor recurrence or death. In that context, the patient might as well be a cat seeing the vet. The subjective element does not appear to have an impact upon survival.

    If you see two oncologists offering two divergent opinions regarding how best to treat your cancer, should you care which opinion you *like* more? Does taking your feelings seriously in this context actually “empower” you to “take control” of anything?

    Whatever standard for these decisions you believe is appropriate for you as a patient will have some impact upon how doctors think about the problem as well. We’re all in this life-or-death thing together. Values are contagious.

  73. Dr. Benway – Sorry, I got a quarter of the way thru the video yesterday, but now it is not working for me. :(

    The part I did catch did not seem evil or brave new world to me, were you being facetious? Or maybe I missed the evil part. (Drat, I do so love evil).

    It sounded to me like he was talking about contingent valuation used in economics, particularly in terms of environmentalism. http://en.wikipedia.org/wiki/Contingent_valuation

    You are right, we probably have different mental definitions and we are probably working from a different frame of reference.

    My view on objective vs subjective in medicine is this. Facts are nice when you can get them. Often you can’t. I need a doctor who can handle that with insight and honesty. I can’t fathom the choices of people like Kim Tinkham, I am as baffled by her actions as I am by other people who take needlessly dangerous actions due to denial, fear, thrill seeking etc. Cultural entitlement to change facts? I don’t know, doesn’t ring true to me, but maybe that’s just my angle.

    All I can attempt to address is what seems to be most successful for me as a patient and a parent of a patient when working with a doctor. Which is what I try to do in some of my comments.

  74. “I made cancer survival the context for my point about subjective verses objective value, because the outcome of interest is highly objective: tumor recurrence or death. In that context, the patient might as well be a cat seeing the vet. The subjective element does not appear to have an impact upon survival.”

    In this case the patient is often not balancing subjective verses objective value. They are trying to figure out who is lying, who is telling the truth, who is competent and who is not. Unfortunately the patient may not have access to many objective measures to determine the truthfulness or skill of the doctor.

  75. Alison – I am probably too much of an introvert to get a broad selection of attitudes that might indicate a difference between blue and white collar workers. Throw into the mix that our area has a rather odd ethic diversity composition and I find myself completely unable to say how one group differs from another based on my social network. But, when someone says “people believe this” or “folks act that way” I can say whether this or that attitude is demonstrated in the people I know. So yes, I can say that I know at least one working class person who gets annoyed at being patronized. I also know working class people who seem more easily intimidated by “experts”. I can’t tell if that’s an individual or groups tendency.

  76. “If you see two oncologists offering two divergent opinions regarding how best to treat your cancer, should you care which opinion you *like* more?”

    You have to care about that, because that’s all you know for sure. As a patient.

    If I were a cancer patient, I would not “like” a fantasy-based treatment better than one offered by an MD. But if two MDs offered me two divergent treatments, what else would I be supposed to go on? Maybe I would “like” the one that seemed more radical or extreme because I would feel safer, or because I would know for sure that I had done everything possible.

  77. RE cats at the vet:

    When I first had to make the decision to start an ongoing treatment for a chronic condition for an animal, I hesitated quite a bit. My vet was confused because the treatment was neither difficult nor expensive. I explained that I was worried about starting down a path that would end somewhere I didn’t want to go, where I was spending hundreds of dollars a month to prop up a chihuahua. I was worried that once I started there would be no clear line, just an accumulation of little things that ended up in a big thing. The vet perked up right away when I explained, because that’s something she could help me with.

    First, the treatment has to be affordable. If you can’t pay, you can’t pay and nobody will judge you for that. The welfare of the animal does not take precedence over that of the other members of the household.

    Second, the animal must participate in its own treatment. If you are chasing down a protesting cat three times a day to do blood tests or force pills into it, that’s not on.

    Third, the animal must benefit from the treatment. Prolonging misery is not a goal for an animal.

    Note point two. Even for a cat at the vet, there is a subjective element. If the cat will not participate the treatment is not appropriate.

    *** *** ***
    Back to MDs: if two MDs offer different treatments, how on earth is the patient to decide which one is more technically correct? If the MDs don’t agree, why are we cross with the patient for not choosing the “correct” treatment, or for choosing using subjective reasons?

    You can say that the patient *should* use objective measures all you want, but if the patient doesn’t *have* objective measures then saying they *should* use them is completely meaningless.

  78. BillyJoe says:

    Dr. Benway,

    If you see two oncologists offering two divergent opinions regarding how best to treat your cancer, should you care which opinion you *like* more?

    I’m going to hazard a guess here and say that there’s not going to any disagreement between two oncologists about the treatment of cancer, especially common cancers like breast cancers. And, if there is, the difference is unlikely to great and unlikely to make much difference in probable outcomes. This is because there are treatment protocols for common diseases, which are essentially consensus statements by groups of experts based on best evidence. Isn’t that right? So specialists like oncologist are unlikely top stray very far from the protocol. There is also the fear of litigation, but I would hope that would not be the main reason for sticking with the protocols.

    But I get your point about *like*.
    What does it matter what a patient *likes*. What matters is what a patient *knows*. And what the patient *knows* is practically nothing – and that includes information obtained at the university of Google. Kim Tinkham *liked* alternative medicine. In particular she *liked* the treatment offered by a particular alternative practitioner. What did she *know*? Practically nothing. She probably didn’t even know about all the various alternative treatments available. If she did, she might have *liked* another alternative treatment more. She probably just *liked* the practitioner.

    The real problem is the existence of alternative medicine and I think it’s time that treatments offered without an evidence base be outlawed and their practitioners held accountable. By their lack of *knowledge* (through no fault of their own, because it’s just the way it is), patients are put in an unfair position by being exposed to these alternative cranks.

  79. Dr Benway says:

    If I had two different accountants do my taxes, and one said I owed the IRS $1,000 while the other one said I owed nothing, my first thought would not be which tax prep I *like* more. My first thought would be, which is correct?

    Never mind that I know very little about tax law and can’t judge which is right without some help. I still want to know which one is doing my taxes correctly.

    At least if I’m clear about my question I have some hope of finding an answer, though I may not know exactly how I’m going to find it.

    In the alt med world it seems the question is simply preference. Preference is just as good as science.

  80. Dr Benway,

    The question I keep asking is “How?” You have finally answered: “At least if I’m clear about my question I have some hope of finding an answer, though I may not know exactly how I’m going to find it.”

    That is, you don’t know either. Thank you.

  81. Dr Benway “If I had two different accountants do my taxes, and one said I owed the IRS $1,000 while the other one said I owed nothing, my first thought would not be which tax prep I *like* more. My first thought would be, which is correct?”

    IMO if you are looking for a financial analogy to cancer treatment. Do not use tax preparation, which is a man made process where you can achieve a “correctly” answer. Look at financial planning and investment, where you are balancing risks with the likelihood of success.

    In other words, If my tax guy told me that his tax preparation offered a 70% chance of success, I would fire him. If my doctor or financial planner tells me the same thing, I appreciate their honesty (unless they are not being honest and the chance of success could actually be interpreted as 30% when taking into account my age, the probably collapse of the housing market or health status, etc).

    I only point this out because one of my major pet peeves in health care providers is the kind of binary thinking that will lead some to represent a 90% chance of success (or failure) as certain success (or failure) or to think of a rare diagnoses as an impossible diagnoses.

  82. I’m not sure that I was clear. I don’t mean to suggest that all or even the majority of health care providers exhibit this kind of binary thinking, only that I have dealt with an occasional health care provider that seems to think this way.

  83. BillyJoe “I’m going to hazard a guess here and say that there’s not going to any disagreement between two oncologists about the treatment of cancer, especially common cancers like breast cancers. And, if there is, the difference is unlikely to great and unlikely to make much difference in probable outcomes.”

    I have only watched cancer treatment “from a distance”, meaning I haven’t been in the room for most consultations that my mom, dad, sister-in-law and friends had, but my layman’s observation would be that cancer treatment seems to start out more standardized and become more individualized.

    Meaning that a woman diagnosed with breast cancer may be presented with more standard treatment at the start, but depending upon the results of subsequent tests (after initial treatments) and how the cancer and her body responses to treatments, the recommendations of how to proceed may vary more depending upon the specialist or particular oncologist.

    Not sure if one of the doctor’s is still around, but I’d welcome correction on that point if needed.

  84. Scott says:

    I’m going to hazard a guess here and say that there’s not going to any disagreement between two oncologists about the treatment of cancer, especially common cancers like breast cancers.

    Just based on my own family experience, I can tell you that this guess would be wrong. There appears to be far too much uniqueness involved, in terms of (e.g.) individual reactions to particular chemo regimens. It might possibly be, as you followed up with, that the differences were not material, but I greatly doubt this was the case.

    In particular, the one who recommended black cohosh for the menopausal side effects of the estrogen blockers…

    That’s a layperson’s view, though. I’d be extremely interested to hear Dr. Gorski weigh in on this point.

  85. Alison – “If I were a cancer patient, I would not “like” a fantasy-based treatment better than one offered by an MD. But if two MDs offered me two divergent treatments, what else would I be supposed to go on? Maybe I would “like” the one that seemed more radical or extreme because I would feel safer, or because I would know for sure that I had done everything possible.”

    Alison I believe I am beginning to get what you are saying and do agree. I am a bit hung up of the use of the words “like” and “feel” which can be interpreted various ways. I tend to think of my decision making process as balancing what I like (something pleasurable) and my emotional response (feel) with what I observe and analyze (think). When I balance those two processes I may come to a decision or have preference but that decision or preference may not actually change the way I “feel”.

    Example. I feel incredibly repulsed by maggots. If I had gangrene in my foot and a doctor recommended the use of sterilized maggots as a debridement therapy over the use of vitamins. I may look for evidence that confirms or denies the effectiveness of both treatments (observation.) If I find enough evidence to confirm the effectiveness of the maggot treatment over vitamin therapy*, I may state that I have a preference for maggot debridement over vitamin treatment to prevent losing my foot, but I would not say ‘I like the feel of maggots debridement over vitamin therapy.’ :)

    So I take Dr Benway’s point that in the best of possible world there should be a point where one looks for facts and that feelings can not change facts. But, I also take your point that a patient may have insufficient facts to balance out their likes. Also (correct me if I’m wrong) that the search for facts is often done within the context of feeling and what the patient likes (sometimes unconsciously.)

    *I have not idea of the effectiveness of either maggots or vitamins in gangrene.

  86. What I am saying is that because patients do not have the facts except as presented by a practitioner (and according to the good folks here at SBM, *we must never try* to dig up facts on our own, but must only ever base our decisions based on the facts as presented to us by our own practitioner) (bad micheleinmichigan, bad bad bad) we routinely make decisions based on insufficient information and we rely on personal, subjective decision-making processes to do so because we have no other option. That’s just the way it works. That’s the way patients operate. There’s no use berating patients for not basing their decisions on better information than their specialists have access to. They don’t have it.

    In particular, berating the same patient BOTH for looking for information AND for not having it is unfair and unreasonable.

    RE tax law.

    One way a person might think to resolve the discrepancies is to ask the accountants. “Accountant A, Accountant B says I owe a different amount to the IRS. Why would that be?” Accountant A will respond thusly: “Accountant B is a professional. If you prefer to follow their advice, by all means do so.” Which doesn’t answer your question. So you go to Accountant B. “Accountant B, why does Accountant A say I owe a different amount to the IRS?” And Accountant B says the same thing: “Accountant A is a professional. If you prefer to follow their advice, by all means do so.” Your question is still not answered, they have both sent you back to “preference,” and now you think that both accountants are more interested in maintaining professional solidarity than in your interests.

    (Don’t try saying that doctors never behave that way.)

    The decision you have to make when given conflicting tax advice is NOT which one is correct (you are not a tax lawyer) but what you are going to do. Depending on whether you have the $1,000 or not and how much of a gambler you are, you might decide to be ultra-safe, submit your tax return as if you owe nothing, include a $1,000 cheque and wait to see what comes back. Or pick the one you “prefer,” submit as if you owe nothing, and cross your fingers.

    micheleinmichigan,
    Some people would consider a 70% chance on a very aggressive get-rich-quick financial plan to be great odds and be very pleased with their accountant. Even there it comes down to preference.

  87. Alison, I will say as far as I can see U.S. tax law is not usually so opaque that it takes an expert to figure out which accountant is mistaken. The IRS even has a help line you can call regarding a specific deduction. Now Pennsylvania Inheritance tax is completely opaque to me…I think there might be some sort of quantum theory at work.

    Regarding patient research. I once asked one of our specialists about the possibility of our son having a genetic syndrome. He brought up http://www.ncbi.nlm.nih.gov/omim online and entered my son’s traits and showed me the list. He immediately said, ‘not this one, not this one, possibly this one…’ And talked about the unpredictability of expressed traits in genetic syndromes, gave me a referral to a geneticist and the url he had accessed.

    Although this site was way over my head and I was overwhelmed by the information, I did eventually find that it was useful because it helped me put the idea of syndromes into perspective and see that they are often not the “big bad wolf” that many parents of children with cleft think they are. I think this doctor choose a ood strategy. He was aware that I would do online research and he gave me a recommendation of the mostly likely place to find science based information.

    So, It’s good to know that not all doctors are so anti patient research.

  88. @ Alison – “(Don’t try saying that doctors never behave that way.) ” How about if I say our accountant doesn’t behave that way? :)

    There have been a couple discussions comparing doctors to pilot. One thing I will say, I have heard my family members who are pilots discuss other pilots that made choices that differed from my family member’s preferred choices. Those other pilots are often referred to as “idiots who where trying to kill me” or perhaps “assholes who shouldn’t be flying.”

    But to be fair, they probably wouldn’t make the same announcement to a stranger during a flight. Professionalism, you know.

  89. What a great discussion.

    As an Australian, I can ‘doctor shop’ all I want. But since there’s a shortage in Canberra, my choice is limited by who’s taking on new patients. I did shop a little – there is a local practice within a short walk of my home, so when I first needed a GP, I rang them up and asked for an appointment with “any doctor except the homeopath”.

    I liked the doctor I found, so I’ve stuck with him. I occasionally see other people in the practice when he’s booked out or on holiday. (And I’m pretty sure the homeopath is gone and it’s an old sign out the front. No-one’s ever mentioned her name to me as an option.)

    If I had found that he was a patronising sod who paid no attention to what I was saying, I’d have tried another one next time, and kept going until I found someone decent. That’s not a medical assessment, but it is one that I’m quite qualified to make. I don’t have the knowledge to judge between the efficacy of different treatments offered by different doctors, but that’s not what I’m shopping for.

    He treats me as a fellow educated adult, and has no problem with me using google U. Probably because I use science-based sites, and phrase it as a question. “I read about X, what do you think? Might that be useful in my case?” He answers questions sensibly – no overblown promises, no patronising dismissal. If I need a referral to a specialist, he chooses someone he thinks is good, and I trust him on that, too.

    So I have my trust in the system that certified him, and my personal trust in him based on my personal interactions with him. That personal trust could be a problem if he were a quack, but I have the system backup for that.

  90. micheleinmichigan,,

    Fair enough, once everyone is flying through the air the usefulness of making such an announcement relative to other measures a co-pilot could take is probably low (and the potential for adverse effects high).

    What if… I’ve hired a Certified Yogic Flyer to fly me over to visit you, I follow his advice to open my window to balance the energy of the plane and I am sucked out of the plane and almost die. I hire one of your relatives to fly me home again and ask them if I would be better off hiring a conventional pilot in the future. Would your relative consider it unprofessional to say yes?

    http://allbleedingstops.blogspot.com/2008/12/how-would-you-handle-this.html

  91. Dr Benway says:

    The question I keep asking is “How?” You have finally answered: “At least if I’m clear about my question I have some hope of finding an answer, though I may not know exactly how I’m going to find it.”

    That is, you don’t know either. Thank you.

    Maybe you’re catching on.

    Yes the doctor may not know if treatment A is any better than treatment B, because knowing likely requires difficult and time consuming homework. Why bother?

    Doctors now believe that patients are more concerned with subjective value than objective value. That’s why integrative medicine has become a required part of medical education.

    Doctors mirror the culture around them. You won’t change medicine until the culture itself changes.

  92. “Doctors now believe that patients are more concerned with subjective value than objective value. That’s why integrative medicine has become a required part of medical education.”

    Banker’s believed that real estate values would always go up. Funny what happened there. Maybe doctor’s should do some research and see if what they believe is actual born out by the evidence. Maybe what we are dealing with is not so much a increased market for CAM but a CAM bubble.

  93. Also, I think, screw culture. Do what you think is right and “culture” be damned. If everyone waits for culture to change before doing the right thing, then all we have is a culture of weak willed followers who can’t think for themselves.

    Or so says the commenter with social anxiety who has a predictably near panic attack before any entertaining because “What will people think of the “insert flaw here”?

    Regardless, sometimes it’s better to be brazen in what you strive for, because then, even with the inevitable falling short, you may still accomplish something.

    perhaps I should sell a line of calenders.

  94. “I hire one of your relatives to fly me home again and ask them if I would be better off hiring a conventional pilot in the future. Would your relative consider it unprofessional to say yes?”

    Alison, to be clear, I was overall agreeing with, only with the small caveat that in certain instances, where one is genuinely unsure of the story the patient is telling or when commenting would create a panic and lack positive results, not commenting is reasonable.

    My relatives response to your example. One is outspoken and one is low key. And I’m having a hard time predicting their response (would they suggest that the pilot was suffering from psychosis, ask if they actually had a pilot’s license or ask how the heck you got the windows down in a jet plan) Regardless they would probably assume that you are smart enough not to fly with that pilot again AND they would assume that because of the incident the FAA would be looking at the pilot’s behavior.

    For some reason the FAA seems to have a different view of following protocol than many State Medical Boards do. I’m sure it’s all very complex and beyond me why the State Medical Boards can’t do more about doctor’s who offer dangerous and unproven therapies.

    Also – regarding your link. My first thought, Dude, can you be more clueless? My second thought “So I saw this guy bleeding along side the road. Nearby, a guy was standing there with an ax. He told me everything was okay. Do you think I should have done something, maybe called the police or tried to stop the bleeding?”

  95. Cath of Canberra said “If I had found that he was a patronising sod who paid no attention to what I was saying, I’d have tried another one next time, and kept going until I found someone decent.” etc.

    Yes, I that’s what I was trying to say when I kept blathering on about “communication and good bedside manner”. But you said it much better.

  96. micheleinmichigan,

    The scary thing about Clueless Dude is that if we can go by his blog persona he is a nice, respectful, thoughtful ER doc who cares about his patients and about doing a good job running his ER.

    I have no objective basis for judging his technical expertise, though his blog persona seems to enjoy the challenge of getting it right as opposed to the smugness of being smarter than everyone else.

    Subjectively, I would want to trust this guy’s blogging persona. And scarily, this guy’s blogging persona thinks that telling someone that his naturopath is not qualified to manage his “medically complex” situation, “with blood pressure, heart and vascular disease, diabetes, and other chronic medical conditions” is unprofessional.

    So if I can’t trust Clueless Dude, who can I trust?

  97. “So if I can’t trust Clueless Dude, who can I trust?”

    Trust No One. ;) That’ll keep you covered in health care AND when discovering a government plot to cover up alien micro-chip implantation.

  98. Dr Benway says:

    Maybe doctor’s should do some research and see if what they believe is actual born out by the evidence.

    Dr. Eisenberg and others did, leading to an Institute of Medicine recommendation to congress to make naturopathy aka “integrative medicine” a mandatory part of medical education “at all levels.” Doctors now are to be “patient centric” rather than… well, reality centric I reckon.

    I cannot report a doctor for promoting therapies that are poorly supported by scientific evidence. Bad things will happen to me.

    How many doctors are there in the US? Few hundred thousand? How many are here at Science Based Medicine complaining about the integrative medicine movement?

    The culture dictates what it wants from its physicians.

    I am here to make you happy, America. I hope you enjoy your Reiki, vitamins, and Dianetics.

  99. @Dr Benway – “I am here to make you happy, America. I hope you enjoy your Reiki, vitamins, and Dianetics.”

    Aren’t you a psychiatrist? Isn’t that supposed to be what you do? Make people happy?

    Sorry, I’m giving you a hard time. I do also have a family member who works in health care. I understand that the internal politics can sometimes make the Medici’s look like the Waltons. Best of luck with that.

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