Alternative oncology versus oncology

I hadn't planned on discussing the death of Jess Ainscough again, figuring two posts in a row were enough for now, barring new information. Besides, I was getting a little tired of the seemingly unending stream of her fans castigating me for being "insensitive" and saying it was "too soon" to discuss her death and wasn't sure I wanted to reawaken that discussion, which is only now finally dying down. This was a young Australian woman who was unfortunate enough to be diagnosed with a rare form of sarcoma at age 22 for which the only known treatment with a reasonable chance of providing her long term survival was a radical amputation of her right arm. Her doctors tried isolated limb perfusion with chemotherapy, which made the tumors appear to disappear, but unfortunately they recurred after a year, which led back to the recommendation for a radical amputation, probably a procedure known as a forequarter amputation. It was at this point that Ainscough rejected conventional medicine to treat her cancer, embraced the quackery known as Gerson therapy, and became the Wellness Warrior, a popular advocate for "natural" living and the Gerson protocol. All the while, her tumor kept slowly progressing, and, less than a week ago, it finally claimed her life after nearly seven years.

Then I saw a column by an oncologist named Ranjana Srivastava in The Guardian's "Comment Is Free" entitled What do doctors say to 'alternative therapists' when a patient dies? Nothing. We never talk. (OK, actually, some commenters referenced it, and a couple of my raders sent me the link.) It's an excellent discussion of a topic we don't often think about. Dr. Srivastava uses Jess Ainscough's case as a jumping-off point to discuss the very uncomfortable issues that come up whenever a science-based practitioner "shares" a patient with an alternative practitioner.

I might be a cancer surgeon, but, fortunately, I rarely have to deal with this issue because the treatment course surgeons offer tends to be a more immediate, shorter-term treatment. This is certainly true for breast surgery, which is mostly what I do, although for certain GI and other forms of surgery a patient can be seeing the surgeon for many months or even years. In any case, I usually see the patient, determine the operation she needs, do the operation, and then follow the patient until she's done with all her immediate adjuvant treatment, usually between six and twelve months. Alternatively, if in my judgment the patient needs neoadjuvant chemotherapy to shrink her tumor before surgery, I will send her to the medical oncologist and see her again near the end of her chemotherapy to schedule surgery. It tends to be the medical oncologist who follows the patient for years, and during the chemotherapy phase (if chemotherapy is needed, which is isn't always for breast cancer) might see the patient quite often over the course of the five months or so that it takes to administer standard chemotherapy for breast cancer.

They are the ones for whom Dr. Srivastava's article will hit home, because they are the ones who have to deal with such things far more often than a surgeon like myself will. After all, usually, if the patient is willing to undergo surgery, she won't be pursuing a lot of the woo described in this article. Alternatively, I tend to see the patients at the end stage of having pursued quackery instead of effective treatment, when they have huge fungating cancer lesions on their breast that I can't do anything about, which happens (fortunately) not too often, but nonetheless more often than I would like. Actually, one in a career is more often than I would like.

Dr. Srivastava begins:

The consultation is over and I stand to escort her out. Through the open door, I notice the waiting row of patients staring drearily at the television.

“But I am not done yet,” my patient says plaintively. “I still have questions.”

She’s already extended a 30-minute consult and I’m pushed for time. From her purse, she unfurls a long list. With its different colours, arrows and flags it looks like a complicated transit map.

“Should I have my intravenous vitamins on the day of chemo or after it?”

I don’t have a chance to answer before she continues: “Can you move my chemo appointment to fit in a colon cleanse? They are really busy, you know. Booked out weeks in advance.”

Reading this intro, I thought: Dr. Srivastava has the patient of a saint. On the other hand, as I point out time and time again to tone trolls who object to the sometimes—OK, often—snarky nature of my online brain droppings as being so very, very mean, it is possible to act in different ways depending upon the situation. In other words, I never go full Orac on a patient, and, believe it or not, can exhibit quite a bit of patience with patients like this, for the simple reason that I don't want them to die of their disease. (Yes, contrary to the seeming belief of some concern trolls, Orac is quite capable of adjusting his behavior and rhetoric to be appropriate to the situation.) That is not to say that I won't be blunt sometimes. If a patient asks me what I think of Gerson therapy (and that has happened) I will politely tell her that in my medical opinion it's pseudoscientific twaddle based on ideas about cancer that were fast on the wya to becoming outdated over 100 years ago. Most patients appreciate that. The closest I've ever come to going "full Orac" was when a patient asked me about Leonard Coldwell, because I view him to be as much a charlatan and con man as Brian Clement. I quickly restrained myself, but could not hide my alarm that my patient was thinking of going to Coldwell.

Irritation aside, it's important to remember that patients like this really do believe that the quackery they are pursuing is every bit as important to their recovery as the chemotherapy, and no amount of evidence will convince them otherwise. If you understand that patients like the one Dr. Srivastava discussed really do think this way, then her wanting to delay chemotherapy for a colon cleanse because the colon cleanses are harder to schedule then chemotherapy or try to juggle her high dose vitamin infusions with the chemotherapy, when neither the colon cleanse nor high dose vitamin infusions add anything to her treatment other than a lot of expense and the potential complications and interference with her conventional therapy. From this, ethical conflicts arise. If we're too blunt about what we think about the quackery, we risk driving the patient away, completely into the hands of the quacks, but if the patient wants us to cooperate with the quack, that's an ethical problem too, because we as physicians shouldn't be facilitating unscientific and ineffective treatment of our patients.

Most frequently, this issue comes to a head when the alternative medicine practitioner wants the physician to order tests that he can't order, like CT scans, blood work, or other tests, to monitor the "progress" of the quack therapies he's using. Dr. Srivastava describes exactly that, when a patient asks her for a "scan to show which natural therapy will best penetrate the tumour.” This is the sort of thing that drives primary care doctors to pull their hair out even more than oncologists, because the oncologists will inevitably decline, and that will drive the patient to go to their primary care doc. In any case, we've discussed this issue before with respect to Stanislaw Burzynski patients, as Burzynski requires them to have a local physician who will monitor them as they take antineoplastons. For example, in Eric Merola's second paean to Burzynski, Laura Hymas taped a conversation in which she asked her oncologist to sign on to be the local doctor monitoring her during treatment with antineoplastons and ordering lab work, and he refused.

The key points Dr. Srivastava makes are two-fold. First, she notes that alternative medicine practitioners can be very callous about abandoning their patients at the end of life:

The emaciated breast cancer patient who was told to present to emergency because there was nothing else her alternative provider could do to help her walk. Neither could we. She died of spinal cord compression after vigorous manipulation of her back.

The man whose finances and prostate cancer had both spiralled out of control by the time he forked out $50,000 dollars on vitamin infusions. He regretted forgoing the proven benefit of chemotherapy.

There was the man whose wife discovered the extent of his natural therapy debt only after he died and was forced to sell the house.

Leading Dr. Srivastava to observe:

Abandonment by the oncologist at the end of life seems a common regret – but I dare say it pales in comparison to the blatant dereliction of duty by alternative practitioners when cancer patients fall really ill. If you don’t believe me, ask a GP or an emergency physician, the other professionals asked to salvage these patients.

There's one difference between alternative medicine practitioners and real doctors. Ethically, we can never abandon our patients. When the patient gets too sick, the alternative medicine practitioner can just wipe his hands of her. Physicians have to try to do something regardless of how sick the patient is, even if that "something" is nothing more than palliation, a critical part of end-of-life care that alternative practitioners seem to have no concept of.

This leads Dr. Srivastava into her second point, which is that alternative medical practitioners almost never talk to oncologists sharing the patient, and in particular they never talk after a patient dies:

I asked this question of several doctors and the answer was unequivocal. “We don’t talk.” As in, we never talk.

Oncologists and alternative health practitioners move in different spheres though plenty of evidence suggests we end up looking after the same patients. When I discover (usually belatedly) that my patient endured the broken promise of an unproven cure, I feel dejected. The more expensive, extreme or exotic the treatment the messier seems the ending.

I have little expectation that someone who would sell false hope to a vulnerable patient would talk me through their reasons why. I once ran into a licensed doctor who oversaw $500 vitamin infusions for cancer patients. The moment when we discovered what the other did was awkward to say the least. My expression asked, “Why?” I saw him struggle with the answer before he said, “Because patients want it.” There was no common ground for a conversation and we slid away into the crowd.

Yes, to me it's even worse when an actual physician administers quackery like this. The physician, I like to think, should know better. That doctor was right to be ashamed—and should be shamed. Unfortunately, with the rise of "integrative medicine," what once was shameful is no longer so, at least not nearly as much as it was before. In any case Dr. Srivastava contrasts these practitioners with legitimate practitioners such as physiotherapists, palliative care nurses and general practitioners, who "seem to have no qualms about sharing doubt, seeking advice and negotiating compromise." That, of course, is one of the differences between a legitimate practitioner and a quack.

It's at this point that Dr. Srivastava nails the reason why there is no communication:

But the point of many alternative therapies seems to be in their secret powers of healing. I know it’s often said but I honestly don’t consider arrogance a good explanation for why oncologists and alternative practitioners don’t talk. I would, however, say that dismay and distrust feature heavily. As does the troubling realisation that a doctor can face reprimand for inadvertent error but an alternative practitioner can get away with intentional harm.

Exactly. Well, almost exactly. I do have to quibble with Dr. Srivastava on one point. Although it is true that there are a lot of con men out there who bilk the desperate, most alternative medicine practitioners sincerely believe in their quackery and think that they are actually helping the patient. They are not "intentionally" doing harm, but harm they are doing nonetheless. And it is perilous for a physician to be seen as cooperating with such a practitioner, because to the family it can give the impression of approval. If bad things happen, it's not likely to be the alternative medicine practitioner who ends up getting sued, but rather the physician with the perceived "deep pockets." Simple self-preservation is a powerful motivator for physicians not to do anything that could be perceived as assisting or helping the alternative medicine practitioner, as doing so risks being perceived (or just being) complicit in the quackery.

That's part of why, in the end, as Dr. Srivastava mentions, the best most docs can do is to familiarize themselves with the various forms of unscientific medicine, although she doesn't quite put it that way. A lot of doctors really don't know what Gerson therapy is. They might have heard of the coffee enema part of it and laughed it off as "probably harmless," viewing it as just another herbal treatment. When you tell these doctors that it involves five coffee enemas a day, thirteen freshly made glasses of vegetable juice requiring over 20 lbs of vegetables in fruit a day, as well as a boatload of supplements, all administered for two years, they recoil. As well they should.

One of my favorite teaching exercises with respect to "complementary and alternative medicine" for medical students and residents is to ask them what homeopathy is. Inevitably the answer is that it's just some herbal medicine or other. I then lead them through the precepts of homeopathy, the law of similars and the law of infinitesimals, and how homeopaths dilute substances to the point where it is highly unlikely that a single molecule is left. Their reactions are inevitably of the order of, "You're kidding, right?" I tell them that, no, I'm not kidding and challenge them to look it up for themselves if they don't believe me.

One wonders if Jess Ainscough might have been persuaded not to do Gerson therapy if there had been a doctor caring for her who truly knew what the treatment involved, how it is based on an oversimplified understanding of cancer and the Warburg effect, and an understanding of human physiology that was becoming outdated a century ago. Probably not, but there are patients out there who might be so persuaded. However, we as physicians have no chance of doing that if we don't understand what we're up against.

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I do have to quibble with Dr. Srivastava on one point. Although it is true that there are a lot of con men out there who bilk the desperate, most alternative medicine practitioners sincerely believe in their quackery and think that they are actually helping the patient. They are not “intentionally” doing harm, but harm they are doing nonetheless.

I dare say this passage shows that, for all the Insolence, Orac possess far greater reserves of integrity and intellectual honesty than almost all the quacks out there.

How often does one see boosters of or apologists for quackery, fans of Adams, Ainscough, etc., give advocates of science-based medicine even this much credit?

By Composer99 (not verified) on 04 Mar 2015 #permalink

Sincere or not, when I was the patient of quacks, any contradictory information I would provide about my not getting better was met with disbelief or hostility. My orthomolecular MD (trained in psychiatry!) missed a diagnosis of anorexia, how is that even possible? That he sincerely believed in candida overgrowth, adrenal fatigue, or whatever is immaterial. He was a profoundly dishonest man, not to me, but to himself. But I paid the price, he may as well have intended harm.

By DevoutCatalyst (not verified) on 04 Mar 2015 #permalink

One of the better things to come from all of the alt med traffic on the Internet is that we get to see more and more prospective cases of what happens to patients that go the alt med route. Almost invariably their outcome is entirely in line with expectations of science based medicine. (I can't think of a prospective case where a patient eschews scientific care and has a good outcome)

It used to be that it was only the few survivors that told their stories retrospectively and could adjust their narratives as desired (it was tha magic juice not surgery that cured me). Cases like Ainscough's on the other hand, provide teachable moments of the reality of alt med treatments that doctors can share with patients. I've wondered if a study of sorts could be done by aggregating outcomes of people who go the alt med route and track their disease in the Internet - would be interesting.

That's funny, the never washing hands bit... My Doctor did exactly that with me, this was shortly after my second stroke... I. fortunately, got a different and I'd say better Doctor... But, still...

By Comrade Carter (not verified) on 04 Mar 2015 #permalink

Pretty spot on. There are a few alt-medics in my circle of acquaintance and each one believes they are doing great good in the world. One commented today how he regularly invited doctors to communicate with him but that they failed to respond. Can't imagine why they wouldn't spend precious spare minutes 'collaborating' with him. I offered that he could always just provide a letter for his patients/write to their doctor describing his treatment regime so they would know what was going on. Funnily enough, he's wants it both ways - the respect of a doctor but not the responsibilities.

He's of course very fond of going off on all the vested/conflicting interests doctors have but hasn't quite grasped the contradiction inherent in his trade, i.e: he makes the diagnosis, writes the prescription and sells the 'medicine'. And is answerable to basically no one, unless a coroner somehow gets involved.

I can see that there are huge issues in the way medicine, the pharmaceutical industry and academia work but find it utterly perplexing that for so many people the answer isn't 'let's fix what's not working' with 'let's opt out of reason altogether'. So often I see the alt-med route described as 'taking your power back' though I struggle to see how handing over your hard-earned to a different set of 'experts' is a reclamation of control.

As my other half says, if this was any other industry, they'd have the ACCC and Consumer Affairs constantly on their backs and perhaps that is the way forward given that the TGA and other regulatory bodies aren't exactly onto it.

I'd never considered the abandonment of patients by alternative medicine practitioners when things go wrong but in retrospect I should have. I was once walking my S.O. home from the hospital one evening when we met one of her colleagues, a pediatric oncologist, coming in. She commented that she didn't think he was working at the time. He wasn't. But one of his patients was doing very badly and wasn't expected to make it through the night; he came in to spend the night there to be with them when the time came. How many "alternative" practitioners would have done the same?

By Sir Bedevere (not verified) on 04 Mar 2015 #permalink

She’s already extended a 30-minute consult and I’m pushed for time. From her purse, she unfurls a long list.

I identify with her frustration. Developing patient-physician trust takes time, and conventional practitioners are at a terrible disadvantage. Even if the homeopath/naturopath/whatever spends an entire appointment vomiting nonsense, face time is face time. The patient sees them as involved and caring; the eight minutes of face time in a med onc follow up appointment feels like a factory by comparison.

During a recent follow up appointment in my cardiology clinic, an elderly patient brought in a tape recorder and fervently insisted on playing a home-made audio recording of a cardiologist from TV speak on the evils of beta blockers, ACE inhibitors, and statins. I had to stop it because it was going to take up the entire appointment. The patient openly expressed frustration about being rushed, and about my unwillingness to listen to more than a few minutes of the tape and to consider looking into the book that was being pitched. It’s tough. It plays into the pharma shill narrative – I “rush him out on meds” and am “unwilling” to hear the “other side.”

By CTGeneGuy (not verified) on 04 Mar 2015 #permalink

Excellent analysis- It took me a long time to get through my head that most alt med practitioners are True Believers, essentially in a conspiracy-minded cult.

Another doctor wrote about the lure of “integrative medicine”

I got Srivastava's piece in my Guardian feed, so I read it before seeing Orac's review. What made it powerful for me was the contrast between the her polite exasperation with the patients, and the way she expressed the 'costs' to the patients, both medical and financial.

I remain convinced that an inverted assessment of political economy is a keystone of Alt-Med belief, and that is more easily disruptable than dubious claims of science. The Alties project conventional medicine as the uncaring profiteers, and their quacks as saints/heroes/saviors. But the Alt-consumer gets taken for a ride. Intent is over-rated, and difficult to parse. Who cares if the "natural cure" salesman believes his own BS, or just has a very convincing act? At the end of the day, when a patient's natural therapy debt is is so high at his premature death that his family has to sell their home, "the quack meant well" isn't much consolation.

Research shows that nearly 70% of cancer patients and a staggering 90% of patients enrolled in an early phase clinical trial use alternative therapies.

Yikes! Besides seeming to be an argument FOR some kind of 'Integrative' approach that could get this stuff under the superivison of a proper doctor (sorry, O.), we have to ask why this is so common. Anecdotally, it seems 'there are no atheists in cancer wards.' That is, most of us were brought up with beliefs in some sort of magic and miracles, even if just stuff like Santa, the tooth fairy and the Easter Bunny. Rationalism is acquired, and it's out in the cerebral cortex somewhere. Anecdotally, the receipt of a cancer diagnosis with it's very dark prognoses of one sort or another is going to put pretty much anybody's magical beliefs at maximum.

It's hard to challenge people's religion. Their hope, their faith in some force of good. They feel dehumanized when these things are attacked. But NOBODY likes to be scammed, tricked, given the short end of the stick, sold a bill of goods. This is built into Christianity of course, the Devil will appear as a trickster a false messiah.

In short, I' suggesting the most effective means of getting patients to be wary about Alt-Med is looking at, well cost-benefit rather than science. The quacks are making big bank and abandoning patients when they get sick. We ought to document both of those things with as much hard evidence as possible. Show that to patients. Don't try to tell them there is no God, only science. Tell them God hasn't shown up yet, and the quacks are devils, false messiahs. They take your money and then toss you to the side of road. They exploit and abuse your faith. You trust them, they betray you.

People understand betrayal, a lot better than they understand science.

CT Gene Guy --- This "cardiologist from TV" wouldn't happen to be a fellow who coincidentally has a last name identical to a land in a famous series of fantasy novels by L. Frank Baum, which later became a major motion picture?

I suppose there are others.

By palindrom (not verified) on 04 Mar 2015 #permalink

palindrom - I didn't recognize the voice, but it wasn't the man behind the curtain. Nor did it sound like an Arizona-based cardiologist with "pure" toxin-free children.

By CTGeneGuy (not verified) on 04 Mar 2015 #permalink

re: Sadmar's point (#9):
"Research shows that nearly 70% of cancer patients and a staggering 90% of patients enrolled in an early phase clinical trial use alternative therapies."

The definition of "alternative therapies" is missing. Back in 2009 I wrote in my U.S. News blog that NCCAM's definition is so broad as to be meaningless, encompassing one event in the previous year of yoga or prayer for better health or meditation session. Filter out this silly low-hanging fruit and I'd bet you'd see those percentages drop through the floor.

By Avery Comarow (not verified) on 04 Mar 2015 #permalink

@ Sadmar

Research shows that nearly 70% of cancer patients and a staggering 90% of patients enrolled in an early phase clinical trial use alternative therapies.

The numbers may be a bit inflated, if the polls/studies considered meditation/yoga, going for a massage, consulting a dietician or spending a week at a spa as alternative therapies.

But I have to admit that 90% of people enrolled in clinical trial doing something else on the side is concerning me. That may bias results one way or another.
I do hope that the oncologists watching over these trials track how much coffee the patients are consuming...

Although, incidentally, if there is little difference in which alt-meds are used between all arms of the trial (new drug vs placebo and/or standard drug), and the new drug proves efficient, that's a nice demonstration that chemo is also more efficient than alt-med...

By Helianthus (not verified) on 04 Mar 2015 #permalink

Sadmar, you may very well have a point. People often ignore emotional appeals but sit up when you start talking dollars and cents. If nothing else, a spouse who is thinking more clearly when they realize what it's going to do to the family finances may put their foot down and say NO!

Research shows that nearly 70% of cancer patients and a staggering 90% of patients enrolled in an early phase clinical trial use alternative therapies.

Yikes! Besides seeming to be an argument FOR some kind of ‘Integrative’ approach that could get this stuff under the superivison of a proper doctor (sorry, O.), we have to ask why this is so common.

Actually, that was one other nit I wanted to pick with Dr. Srivastava but didn't get around to because I was running out of time as I wrote this. That number is way high compared to what I've seen elsewhere; so I'd like to know what research she is referencing. My guess is that the number is inflated by including prayer, exercise, and the like and that the number using "hard core" alternative medicine, such as Gerson protocol is way, way lower.

@#7 CTGeneGuy: Having real knowledge does help develop a collaborative relationship between you and your physician. When I was diagnosed with hypertension, I refused meds at first. I wanted to try diet and exercise. My physician agreed, and asked me to come back in 3 months. I kept track of my blood pressures, but despite my best efforts (and losing about 10 pounds) it still wasn't enough.

So I agreed to meds. He wanted an ARB and a statin. I refused. I thought that was overkill for my mild hypertension, and my cholesterol/triglycerides were normal, and I've never had a heart attack. He agreed to start me on HCTZ, which did very well for about a year. Then he added atenolol, which did very well for a year after that and later changed the dieuretic from HTCZ to Lasix (I was retaining a lot of fluid, even though my GFR was >90). Meanwhile I lost 30 lbs and started eating healthier. But my blood pressure still was climbing even with meds so he added lisinopril and changed Lasix to chlorthaladone to give my kidneys a break. For awhile, that worked fine.

Six months ago I started having dizziness and feeling tired all the time. I passed out during a blood donation. My blood pressure was 98/58 (normal for me before I got HTN was 1110/70 to 100/60 so I didn't think much of it before I tried donating). I saw my doctor and he took me off lisinopril and cut my atenolol/chlorthaladone in half. Since then, my blood pressure has been steady at 110/70 or therabouts and I feel fine.

That's what a true collaboration with a physician gets you; a willingness of the physician to listen to the patient who wants to start conservatively and not jump to the expensive patent meds with limited long term safety data. It's easier for the physician to accept what the patient says if they at least point to the current literature or have valid reasons not to want to try one medication over another, and frequently follow up to see how the therapy is going.

Quacks really don't want that kind of relationship with their patients. They want to give the orders, and if they talk to a doctor it's because they want something they're not allowed by law to order; that's pure profit for the quack since the results are meaningless to them.

The patient using quack therapies like the elderly lady you mentioned don't want a real collaboration, either. They want VALIDATION that they are doing the right thing: and you refused to give it. But since she couldn't bear to change her mind, she blamed you instead of really listening.

@mna#5: after reading the comments here today, I suspect alt med quacks who really think they're doing good, like your friend, became alt med quacks because they couldn't get into medical school. As you say: all the power/ego trip, none of that hard "book larnin'", and no real responsibility to the patient . . . and thanks to our warped laws, no legal liability.

You can't even sue a quack for malpractice.

The man whose finances and prostate cancer had both spiralled out of control by the time he forked out $50,000 dollars on vitamin infusions. He regretted forgoing the proven benefit of chemotherapy.

I'll stipulate that some alt-med practitioners are true believers, but Dr. Srivastava is correct to call incidents like this one intentional infliction of harm. The walletectomy was absolutely a success; the rest of the treatment protocol failed. Maybe that practitioner was willfully blind to the harm he was doing, but that's the least unfavorable interpretation I can put on his actions.

I then lead them through the precepts of homeopathy, the law of similars and the law of infinitesimals, and how homeopaths dilute substances to the point where it is highly unlikely that a single molecule is left. Their reactions are inevitably of the order of, “You’re kidding, right?”

That's a perfectly rational reaction to the idea of homeopathy. There are some kinds of woo for which you need to have some medical training to understand why it's bunk. Anybody who has taken high school chemistry should know enough to see homeopathy for what it is. I'd venture that most of your trainees are accustomed to living in a rational world, where homeopathy would be viewed with derisive laughter. It can be a shock to realize that no, we don't live in a rational world.

By Eric Lund (not verified) on 04 Mar 2015 #permalink

There's a fundamental resource difference here, one that also shows up in politics.

To wit: the politician that does nothing but campaign and spends all his time campaigning will be more successful in the election than the politician that spends half his time doing his job and half his time campaigning. Why? The first guy has twice as much marketing power, even though he has less substance to market.

Doctors don't have advertising dollars (unless their name is Dr. Oz, but we won't count that somewhat disgraceful outlier). They spend their resources (read: time, more so than money) actually treating patients, conducting research, etc.--in short, doing medicine (their job). Alt-med practitioners tend to have *very* generous marketing budgets, and they can afford to spend their time trolling for new patients, because they aren't really obligated to do anything for the ones they already have. So what if a few patients become disillusioned and leave--like the politician above, you enthrall more people with your polished image than you drive away with your lack of substance.

In other words, alt-med practitioners can afford to whine about doctors not taking time to play ball with them, when the doctors are saying "I'd rather spend those minutes seeing patients than trading BS with you."

By Shadowflash (not verified) on 04 Mar 2015 #permalink

Re: "It's too soon". It isn't about "respecting" the person (or people) who died as if often claimed--it is about stopping the discussion. It is a ploy to keep people from challenging someone's established beliefs.

Of course, if you wait then you'll hear "It's old news so no point discussing it now".

For example, you see this play out over and over again every time there's a mass shooting in the states, and that ploy is used almost exclusively by those who don't want gun control laws.

By Dan Andrews (not verified) on 04 Mar 2015 #permalink

I read the article linked from the previous comment thread. I found it pretty powerful stuff. I don't think a lot of people really think through the ramifications of the alt-med choice. Particularly in cold hard dollars and cents. I mean a lot of the time (if you have insurance) you don't really know what your care costs. You know what you pay, which is usually a co-pay or a co-pay plus a percentage of a rate negotiated by the insurance company. So you know for those three days in the hospital you got a bill for say $3,000. But alt-med is almost always all out of pocket. And it racks up fast. You pay for the consultation. Then you pay for the 'tests' the provider wants to run. Then of course they tell you that you need some supplements. Conveniently I have what you need right here! And you pay for those. A lot of these guys are even establishing lines of credit, mini-loans, so these people can pay for all of this stuff! I don't think it ever occurs to them that the 10's of thousands of dollars they are incurring in debt is going to be paid by their families after they die. They are promised the miracle and they fall for it hook line and sinker. Plus I don't know how many Go Fund Me and other types of donation pages I have seen for people trying to raise money for these things. It makes me sad. I think we need more articles with testimonials from these families who have been ruined by quacks to help turn the tide. Emotional outreach works better than facts, and the quacks have tons of glowing testimonials for their 'cures'. It is only right we hit back with what the outcomes really are for these people.

Speaking of Brian Clement.I don’t believe this followup story was posted here.
http://www.wptv.com/news/local-news/investigations/woman-speaks-out-abo…

I am fairly incensed by the nonsense of how lesions on the chest were diagnosed as "cancer oozing from her body" or the like.

How is that NOT malpractice? Or would he claim it can't be malpractice because he's not a doctor?

Clearly that type of diagnosis, made without any pathology test (or even a basic understanding of oncology), runs far afoul of any standard of care. Why wouldn't they sue the clinic for malpractice?

By Marry Me, Mindy (not verified) on 04 Mar 2015 #permalink

@Marry Me (22) - if you read this blog enough you will find that almost without fail signs of progression such as lesions, new lumps, fever, etc. are always praised by alternate med practitioners as either 'cancer leaving the body' or a treatment reaction that is a good thing because it shows that the quackery is working! As far as malpractice, given the fact that they aren't (usually) doctors, and most states broadly exempt them from malpractice (they aren't doctors after all) you can sue for malpractice. Sometimes some success has been found in suing for breach of contract or false promises, but these are hard to prove because nothing is in writing and it turns into he said she said. A few have been gotten by the FCC for false advertising, but those are few and far between. You are correct that if an oncologist did this he would be sued out of existence and stripped of his/her license as he should be.

This is what is so friggin frustrating about this. They are incompetent providers, but are providing healthcare services. Therefore, they are practicing without a license.

The fine for practicing medicine without a license is only $3700? Peanuts.

By Marry Me, Mindy (not verified) on 04 Mar 2015 #permalink

This is sad. Thanks for discussing your evaluation of Gerson. I am not a doctor but have encountered some of the Gerson literature through someone who somehow thought this would be beneficial for a family member. My evaluation of the literature I was sent to evaluate was that it was quackery. I tried to impress upon them that there were so many things going on with the proposed treatment options that it blew the mind to try to think of a proper experimental design to test such nonsense. Moreover, they didn't have anything that came close to a decent analysis of these therapies despite it being around for decades. And I say "these therapies" because the group I was made aware of offer a large number of treatment options from least expensive to most expensive. I'm sorry but it just sounded like a negative-pleasure resort rather than anything remotely connected to medicine. Two more things. First, the location of the facility I was made of is in Tijuana. Second, the person who was the contact for the person asking my advice is a chiropractor. Despite all this I believe the family member is undertaking this ridiculous treatment regime. My main (and final) advice was to ensure that they did not in any way intrude of whatever conventional medical treatment is being given. It is totally bizarre to me that someone would fall for such crap. However, when we're desperate perhaps any of us may grab at straws.

Re suing for malpractice - I thank goodness that in my state (NSW) and others here in Australia we can hold alternative practitioners to account as they are held to a Code of Conduct under the State Health Regulation 2012 Schedule 3 and people can pursue complaints with the Healthcare Complaints Commision or civil suits based on breaches of the CoC. Whether patients/families do or not is a decision they have to make, although it seems people are quicker suing hospitals and registered health professionals these days.
One of the things that the NSW Govt changed in the Health Care Complaints Act as a result of the Meryl Dorey/AVN shenanigans (and not an unreasonable amount of lobbying by SAVN) is that complaints in NSW no longer have to be made by a patient or their family member. Anyone reasonably concerned about the public health and safety of patients can complain nowadays.
And then there is our ASIC/consumer protection pathways. Promising and actively advertising cures, and especially cancer cures, is a no-no, and guaranteed to attract penalties. So is offering homeoprophylactic vaccination, as Homeopathy Plus has discovered.
That is why you see terminology like 'may assist with the symptoms of' in advertising, There are a few of us over here that are ever vigilant with watching out for this, but given that politics accepts the Argumentum ad Populum (as do our private health insurance Companies) it's an uphill battle.

and a couple of my raders sent me the link

Obviously meant to be "raiders". A.k.a. "Pillagers for Orac".

By herr doktor bimler (not verified) on 04 Mar 2015 #permalink

mna @5:

I can see that there are huge issues in the way medicine, the pharmaceutical industry and academia work but find it utterly perplexing that for so many people the answer isn’t ‘let’s fix what’s not working’ with ‘let’s opt out of reason altogether’. So often I see the alt-med route described as ‘taking your power back’ though I struggle to see how handing over your hard-earned to a different set of ‘experts’ is a reclamation of control.

That's one thing that irritated me quite consistently when I visited RI and engaged the trolls more regularly.

Yes, there are a lot of problems. The altie solution seems to be replacing regulation, peer review, and consumer protection laws with anarcho-capitalism where quacks have the unchallenged right to lie to unsuspecting consumers and make them pay for the privilege of becoming their poorly-monitored, unblinded, uncontrolled test subjects. Because Caveat Emptor, y'all.

By Bronze Dog (not verified) on 04 Mar 2015 #permalink

Kirii @21: One of the best pieces of medical advice that my mother has ever given me is this:

Don't see a 'doctor' who prescribes you pills that you can only buy from them. It's a sure sign of a quack.

(Actually it's good advice for buying lots of things.)

By JustaTech (not verified) on 04 Mar 2015 #permalink

Agree that intent doesn't matter when the much when the net result is harm. But again from my albeit statistically non-robust sample, I haven't come across many that fit the con artist profile. Most are more akin to cult followers and have invested so much of their time, money and identity in being alt-medics that any seed of doubt must be crushed or swept aside.

Have to say, I don't see many of them raking in the cash either. As an industry with few barriers to entry (yes, some spend years and $$$ on courses but why when you can invent your own discipline) and no limits on the numbers of practitioners, the majority I know of seem to be scrabbling for scraps despite the billions being spent. I strongly suspect only a small minority are doing well, i.e. those who realise they are really in the entertainment/fashion/lifestyle industry. They also now have to compete with pharmacy chains and supermarkets who are increasingly encroaching on their turf (also deeply problematic but another issue).

From what I can see, the guy I mentioned in my earlier post and his cohorts spend as much time marketing their nonsense to each other as the general public. They all go off and do each other's courses then launch their own in a human caterpillar style circle of bullshit. Or intellectual pyramid scheme. Most of their businesses fail, as this guy's did, because their reality intolerance usually extends to business matters too. He now lives at his nan's house and, in addition to his various 'wellness programs' offers life coaching. I shit you not.

On a practical level, most of them are reasonably careful how they advertise their services but far less cautious, I find, on social media where they make all sorts of ridiculous claims. Far easier to catch them out there.

Orac reads Girls and Corpses magazine? Cool!!!

By DarkScholar82 (not verified) on 04 Mar 2015 #permalink

Speaking of "detox" enemas (if we must), here's a candidate for Mommy of the Year - Mandy, the Nutritional Therapist who thinks Gerson therapy (and Gonzales' version of it) are great treatments for pediatric cancer. And enemas are not only for cancer, they're indispensable for kids with minor complaints too. Voila, the garlic enema:

"Even though I had some Pre-Med coursework and herbal courses, I forgot everything when I had a baby! Gradually my first child’s health worsened as we added each new antibiotic and vaccine. His body was too weak to take on the medications and live strains of diseases. Then I began to remember my training! I searched for more healthful healing and found the garlic enema. It became my “reliable” fever buster. It always works for my children (and quite a few other children) especially in efforts to get rid of a fever or constipation and tummy pain...And let me tell you…making a garlic tea and putting this wonderful herb directly into the bowels has an amazing affect on your health and especially the little ones...I was overwhelmed with 3 birth children in diapers and an impossible curriculum of nebulizer treatments. This is when I was given the garlic enema and chiropractic!"

"Now we have had over 10 children, and visited many mommies in their bathrooms. We have used this enema on each of our children for 10 years; starting as babies, with tremendous success!"

http://www.fosteringnutrition.com/stop-fever-and-more-with-a-garlic-ene…

I wonder when Mandy will discover the wonders of MMS enemas - fabulous for those pesky pediatric behavioral issues.

By Dangerous Bacon (not verified) on 04 Mar 2015 #permalink

Have to say, I don’t see many of them raking in the cash either. As an industry with few barriers to entry (yes, some spend years and $$$ on courses but why when you can invent your own discipline) and no limits on the numbers of practitioners, the majority I know of seem to be scrabbling for scraps despite the billions being spent. I strongly suspect only a small minority are doing well, i.e. those who realise they are really in the entertainment/fashion/lifestyle industry. They also now have to compete with pharmacy chains and supermarkets who are increasingly encroaching on their turf (also deeply problematic but another issue).

Unfortunately, in the part of Australia I live in, Naturopaths (especially those who push Acid Base Woo HARD) & their ilk seem to be doing very well indeed, thank you very much!

I know someone who, after having a rather extensive oncological surgery & starting the recommended chemo went to one "for dietary advice", only to end up preferring to pursue the (very expensive & unpalatable) diet and blandishments of a "cure" exclusively to the blunt yet ethical answers of an excellent medical team. They maintain that they are "cured". [Of course, the Naturopath cured them, not the Surgeon...] Obviously they would not actually know as they refuse to see an "allopathic" Doctor. This is someone with more than enough tertiary education to know better.

The problem is (as I see it) that now virtually anyone can put out a shingle as a "Healer/Dr." of some sort and be exempt from legal scrutiny. This was not the case until recently. Unfortunately, even in the case of Penelope Dingle, it took years of petitioning by her family for that state's Coroner to even agree to look at the case. I'm pretty sure that Scrayen woman (Homeopath) is still practising, and besides a few harsh words from the Coroner, suffered no legal consequences of what was clearly grotesque negligence at best.

By AntipodeanChic (not verified) on 04 Mar 2015 #permalink

enemas are ... indispensable for kids with minor complaints too

Yes, the kids soon learn to stop complaining.

By herr doktor bimler (not verified) on 04 Mar 2015 #permalink

It seems that one of the problems is always time. I'd love to see a cost benefit analysis of the amount of money that is spent rescuing people whose disease has been worsened by alt med vs the cost of longer doctor appointments. For those of us with socialised medicine it could be a substantial saving to the government to let people feel that they have been heard and cared for, rather than picking up the pieces when they require heroic measures. And what about the lost tax dollars of people dying way too young?

Perhaps there is a role for case managers, someone whose job it is to work with the patients and have the overview of all of their treatments, and the time and responsibility to research alternative treatments for them.

The picture at the top of the page made me think of a Frank Zappa song I was introduced to today, called The Illinois Enema Bandit. As it was explained to me, "it's about a guy who robs people and gives them enemas." I think I will forever think of Gerson as the Enema Bandit.

herr doctor bimler -regarding #27 surely you mean
Raiders of the Lost Orac!

By Emma Crew (not verified) on 04 Mar 2015 #permalink

I made the mistake of clicking the link to that enema site, and found this:

'When there is a fever, you will notice the “break” in fever as the sweat beads acquire on the upper lip during transit. Usually, children want to take a nap afterward as the relief removes the body stress.'

Right. Of course the poor kid starts sweating and wants to take a nap after Mum has put garlic tea up his/her arse! Wouldn't you?

This also illustrates the falsity of the Law of Similars: An enema of an enema is definitely not a friend.

See also 'Mouse Utopia,' specifically 'the Beautiful Ones.'

When Helen Garner (author of 'The Spare Room', an unflinching account of seeing a friend with advanced cancer be fooled and tortured by a quack, who turned out to be a Vet) came to London, I asked her what had happened to 'Professor Theodore', she replied 'He went out of business'. Her dying friend spent a lot of money being 'treated' by this quack and was full of delusional belief in him and his methods. The seriously ill are desperate: I can recall how I felt when my husband was first diagnosed with throat cancer. Five years, on thanks to conventional medicine, he is well. I would not have known what to do had he fallen for such fraudulent 'therapy'

@ Herr Doctor #35
You beat me to it. Follow the link and even the last comment says someone's kid won't let the do it. More sense than the parent / carer.
But seriously, that is downright wrong. Who on earth would contemplate doing this to a child (sick or healthy) let alone make a web page explaining how to administer it (with no mention of the dangers of someone with no medical training inserting something up a child's backside)?
Is it legal?

I had never even heard of enemas until recently, jeez and here I am finding out more than I ever wanted to.
Apparently some spa in Russia has a 360kg monument to an enema
http://en.m.wikipedia.org/wiki/Enema

Speaking from the cancer patient perspective (I had stage 3 bowel cancer at 31 18 months ago, which metastasised to my lung last July), I absolutely get the allure of alternative medicine. I'm a rational guy. I have a science degree. I'm an atheist. I don't "believe" in things. Even I, at times, struggle a bit to not let my mind wander to other potential cures. It's hard not to, but when you are facing such a significant threat to your life doubt creeps in. It's hard not to and you can't help but wonder things like "is everything I've ever learned wrong" or "what if those nuts are actually right - am I being arrogant in ignoring it and is my arrogance going to kill me". If I struggle with this, I can absolutely see how those even slightly more prone to believing, or less scientifically aware, can fall prey to this rubbish. Cancer makes you desperate and scared, and alternative medicine feeds on this desperation and fear. If I can make any recommendations to health professionals is to constantly reassure your patients that they are doing the best thing they can to improve their chances of surviving. The worry of not putting your all into beating cancer is strong and I think this opens the door for alternative medicine, including for many that otherwise would shun that nonsense.

I read Murmur's link, and while there clicked on another link that I think is pertinent here.

A gentleman by the name of Larry Rees wrote a response to a letter in the BMJ from a Dr. Richard Smith who claimed that cancer was the "best way to die." Mr. Rees took exception to that claim as he is currently dying from pancreatic cancer (Mr. Rees wrote his response January 21 2015).

He made several excellent points but the one that sticks out for me is this:

"Yes, it is great that I’ve had time to communicate with all my family, friends, acquaintances and work colleagues.

At the same time, this process comes with a curse. It probably took me eight weeks to “be at peace” with my situation. I am now pretty calm and serene about it. I simply want to navigate through with the minimum of stress.

Yet those same groups of people put a huge strain on me daily. They don’t want to accept that I’m going to die. They want me to be the miracle that somehow gets round it. They want to use Google to find alternative treatments that will “cure” me. So I spend a HUGE amount of my limited time left dealing with THEIR baggage."

It makes me wonder how many cancer patients have been forced to endure quack treatments by desperate family and friends who couldn't get to acceptance, and couldn't deal with their own baggage.

It seems to me that a hospice consult needs to start the day the patient gets the diagnosis. Not because the patient is going to die . . . but in case the treatment is not effective and the diagnosis becomes terminal. Now as a former hospice nurse, I know we don't get involved until the six month diagnosis is made. But I also know that many hospice patients aren't admitted until the last 2-4 weeks of life, and therefore aren't able to get the best use of our services. We treat the whole family, not just the patient.

It just seems to me if we could work with patients sooner, the outcomes would be better. And if the cancer is cured, so much the better! I don't really see how someone can be harmed by learning about how to manage death even as they fight for life. Why do the two have to be mutually exclusive?

@Cookie #44

"... you can’t help but wonder things like “is everything I’ve ever learned wrong ..."

As a former cancer patient, this particular phrase resonated with me. A cancer diagnosis is a physical diagnosis with a strong emotional component. Once you hear that dreaded word applied to yourself, your universe tilts. Everything seems surreal; everything you've ever believed to be true seems illusory. Even with the best support system in place, you feel marginalized and alienated. And it's when this feeling is the strongest, is when you're supposed to be making informed decisions about your treatment. So much information comes at you while you are still in shock that it's hard to process anything except the over-riding fear. So, even if you are - normally - a rational person, a cancer diagnosis means that all bets are off. You doubt EVERYTHING. Your vulnerability is off-the-scale.

My cancer centre was excellent in patient education, providing classes and tons of information on your diagnosis, your proposed treatment plan, what to (physically) expect from treatment, product monographs of all the drugs you would be given, and classes in self-care (again, with a focus on the physical) during treatment.

While all of this information was very welcome and I read every piece of it, there was little information about the emotional aspects of cancer. Certainly, there was counseling available through the centre, but it was presented almost as an afterthought, when - perhaps - it should have been given equal weight to the physical aspects of cancer.

Of course, hindsight is everything, but I truly wish that my cancer centre had been more forthcoming about how emotionally vulnerable I would feel and offered much more information about this aspect of cancer: the terror, the anxiety, the sense of loss, how utterly- and completely vulnerable you are. The cancer is terrifying enough, the treatment offered more so, and it is then that many succumb to the lure of "alternative" and "integrative".

I'm not sure what the answer is to this or how cancer centres can address it, but - if the lure of "alternative" is to be nipped in the bud, it is during this window between diagnosis and treatment. Educating cancer patients on the dangers of alternative treatment may make it seem as if alternative treatments actually have equal weight to proper treatment. Insisting of more rigorous controls on alternative treatment is tough given their current popularity and widespread acceptance. Waiting for Joe Public to realize that alternative treatment will NEVER cure or, even, slow down cancer progression seems wrong. Something proactive is needed, but I haven't the foggiest idea what that should be.

By SelenaWolf (not verified) on 05 Mar 2015 #permalink

@ Selena Wolf:

I think your description of your reaction illustrates precisely why so many people- who otherwise had been quite rational- turn to woo when given a diagnosis. Often, alt med advocates present seemingly solid, certain answers ( i.e. ad copy and prevarication) to the patient whilst SBM only speaks of likelihood and probability ( i.e. reality). This can be extremely attractive when the whole world seems turned upsidedown.

I used to counsel people who had learned that they were hiv positive, just prior to the days and then, at the beginning of the HAART era, under the auspices of an NGO, so I recall clients' difficulties.

Thus, the false promises and outright lies of woo stick especially hard in my craw.

By Denice Walter (not verified) on 05 Mar 2015 #permalink

Phlebus @41

But seriously, that is downright wrong. Who on earth would contemplate doing this to a child (sick or healthy) let alone make a web page explaining how to administer it

As a parent of a 4 yo and 6 yo, I agree. I can't fathom what a kid must feel like to have to go through this.

I feel so bad for those kids.

By Marry Me, Mindy (not verified) on 05 Mar 2015 #permalink

Ugghhh, Enema Lady (Mandy Whatserface) is a foster mom. Seriously.

From her website:

You may ask, “Why Am I a Bad Parent?” I certainly have asked this many times.

I'm surprised at your self-awareness, Mandy. Take it just a little bit further and you may find the answer you are looking for.

It occurs to me that a foster mom administering garlic enemas is something the jurisdictional foster care coordinator should know about. Where does she live?

@ Denise Walter

"... Thus, the false promises and outright lies of woo stick especially hard in my craw... "

Exactly.

By Selena Wolf (not verified) on 05 Mar 2015 #permalink

Where does she live?

This information is oddly difficult to find.

Uhhhhh, so she promotes all kind of cancer quackery for pediatric cancer, and according to this article, one of her foster sons died of cancer. Wow. Uh, wow.

Roger Kulp@20:

Speaking of Brian Clement.I don’t believe this followup story was posted here.

http://www.wptv.com/news/local-news/investigations/woman-speaks-out-abo…

Sometimes I'm inclined to propose - modestly, of course - that we should stop campaigning against "Complimentary and Alternative Medicine" and start campaigning for "Complimentary and Alternative Justice" instead: wherein distraught friends and relatives of sCAM's victims can treat its perpetrators to a richly-deserved shotgun enema without fear of censure or criticism from "Big Allopathic Law".

And then there's times when I read articles like yours, and think Jon Swift was a total piker.

/scary

A half hour for a consultation in a patient newly diagnosed with cancer??? Keep in mind, the patient didn't know their appointment was for this short period of time, only the doctor and the secretary who made the appointment knew... it's as if you were in a serious car accident, and an ambulance was called, and after a half hour of them trying to extricate you from the wreck, they drove away, saying they had no more time for you... is it any wonder your patients will go elsewhere, where their concerns are at least met with some humanity? (Don't get me started on docs who have teevees on in their waiting rooms...or dated magazines of the 'Fortune' and 'Golfing' and 'Yachting' ilks; you're trying to torture us, right?) And that 'real' doc you discuss who was charging $500 for IV vitamins - since when do IVs cost that much, and how is this not robbery? You rale against alt med practitioners who cause their patients to go into bankruptcy trying to effect a cure, but seem unconcerned about your own part in incredibly expensive treatment courses, often without the desired outcome or with a dangerous side effect late in being acknowledged. How many of you have thought to ask a patient before grabbing a prescription pad 'what are your finances like' before considering your options? Because most patients are as loathe to admit to being down on their luck or recently laid off as they are to bring up their hemorrhoids... How many of you have accepted free lunches and other perks from drug reps? If you think that hasn't affected your Rx'ing decisions, why not take the high road and ban these industry whores from your offices (and save the time for some real research?) The attitude here is such that I'd be loathe to spend any time in your offices, the arrogance and hubris is stifling. You'll continue to have the same problems with the 'alt med' crowd until you get over yourselves and see yourselves the way your patients do.

By signalfire (not verified) on 05 Mar 2015 #permalink

I love my doctors, all of them. I also love "Big Pharma", because without them, I would be unable to live a full and productive life due to multiple health issues.

There was a time in my life, though, where I thought that maybe those alt-med people knew something (I was very young!), and I started myself on a itamin regimen that was supposed to ease my pain and fatigue. All it "eased" was my birth-contol pills - I started bleeding heavily at the "wrong" time of the month, and since I had started the BC to treat debilitating dysmennorhea (sorry, TMI, I know), this was a bit of a problem. The "therapist" never told me that more than one of the supplements I was taking actively counteract all sorts of medication, nor was I told the high-soy diet suggested (instead of red meat) would also put my BC a bit out of whack.

My doctor, along with pretty much every doctor I have seen in the past 20 years, asks that every patient bring in all the supplements and vitamins and over-the-counter stuff they take, so that the doctor and staff can check if any of them will interact with any medication they take, *and* so that they can check if the supplement is safe for the patient. Because alternative practitioners *don't* check.

Every "allopathic" doctor I have seen takes the time to ask me how I'm doing, and at the end of every doctor visit (I'm down to seeing my GP every three months instead of every month), I'm asked if I have anything else that's worrying me. I'm usually the one to rush the appointment along!

I am grateful for every doctor who has cared for me, and I'm grateful to every doctor who made sure that I've had 15+ more years to enjoy my mother that we would have had if she had gone to an alt. practitioner.

I feel about "alternative" therapy the same way that I feel about "miracle" weight-loss pills: None of them work, and some are actively dangerous for you.

By elsworthy (not verified) on 05 Mar 2015 #permalink

@Signalfire #58
As there were already several treatments booked, the patient quite obviously wasn't newly diagnosed. And why on earth didn't she know how long the appointment was - if I'm not told, I ask when I book. That's the thing about empowerment - it requires you to use your power and not passively wait for other people to do things for you.

Time does not equal humanity - I'd rather 30 minutes of trained specialists trying to get me out of a car wreck than 3 hours of the local magician willing me out. Humanity includes tough love, to tell you that you have a chance and not spin fairy-tales.

You need to better your reading comprehension - both the original article and Orac agree that $500 vitamin infusions are quackery. It doesn't matter who is providing them, they have no place in cancer treatment.

This is not about 'us and them,' as you are simplistically making it. It is about using evidence to guide patient treatment, both in the treatments chosen and how they are presented.

And unfortunately cost and advertising are regulatory problems. We function well with socialised medicine such that patients are not bankrupted by genuine treatments. This makes it all the more shocking that they would waste a fortune on woo. And I dont know what it is like where you are, but here there are very strict regulations on pharmaceutical marketing - no junkets or even free pens. The system works well.

In fact it adds to the problem - magic treatments don't have regulation and get away with marketing that real medicine is not allowed to.

I'm sorry if you've had a bad personal experience, but even if you were in the majority, that doesn't mean we should turn to magic rather than reality. As I suggested above #36 and in Selena's suggestion of counselling there are ways to improve patient experience of real medicine, and these are things people are working on. Are SCAMmers working to become more in line with reality?

Panacea #45

Good points about the hospice etc care and when it starts: my sister is a palliative care nurse and has some very strong views on how soon they should be involved in someone's care (as an aside it was a long-standing joke between us that I, a MH nurse, talked to people for a living and she, a general nurse, did practical things...And now she works in palliative care...talking to people...).

Re. B.Erickson @ 48, quoting Gerson Institute tweet 'We were very sad to hear of Jess’s passing. She discontinued GT 3 years ago, but we were still big fans of hers.'

Do you see what they just did with that? 'She discontinued GT three years ago,' meaning, 'she died because she stopped taking our magical cure.' That is just the most self-serving rubbish, packaged with an 'oh so sad' to make it seem like something other than pure viciousness. If there's a hell...

Diets cannot fail. They can only be failed.

By herr doktor bimler (not verified) on 05 Mar 2015 #permalink

Re. B.Erickson @ 48, quoting Gerson Institute tweet ‘We were very sad to hear of Jess’s passing. She discontinued GT 3 years ago, but we were still big fans of hers.’

Well, we already knew that the Gerson Institute people are loathsome - but I am still appalled. Stay classy, Gerson!

By Jane Ostentatious (not verified) on 06 Mar 2015 #permalink

"And that ‘real’ doc you discuss who was charging $500 for IV vitamins – since when do IVs cost that much, and how is this not robbery? "

I suspect that is the going rate the non-MD quacks are charging. And probably not covered by insurance. MDs can fall for being quacks for the same financial and philosophical reasons as the non-MD quacks. There are a lot of ways to increase income so you can keep the practice open as a lot of them are actually a lot more cash-strapped than most people believe.

"You rale against alt med practitioners who cause their patients to go into bankruptcy trying to effect a cure, but seem unconcerned about your own part in incredibly expensive treatment courses, often without the desired outcome or with a dangerous side effect late in being acknowledged.

I know so many docs that spend their free time working at free clinics and other low cost options (I have never seen a free alt-med clinic, but I do know some practitioners who do some pro-bono work). There is constant research into what will improve outcomes and reduce costs. Potential side effects is a very well known problem in medicine and why they have those long informed consent forms listing all the potential risks before treating people. Alt med types often tell patients that side effects are proof the treatment is working and to keep going with it. MD's will often see if there is another medication that may work better for you.

"How many of you have thought to ask a patient before grabbing a prescription pad ‘what are your finances like’ before considering your options?

Something that is increasing done in shared decision making protocols (COI notice: I am involved in a research project that is disseminating shared decision making and supporting practices in implementing it) FWIW, in surveys enough patients want shared-decision making and will change doctors to get it that I suspect it will become more prevalent because you can't keep your practice open if all the patients go elsewhere (although in many areas you don't have much choice where doctors are few and far between). (COI: I am not directly doing any health disparities work at the moment but the center I work in is heavily into this and other projects in my group have addressing rural health issues as part of their scope of work).

Because most patients are as loathe to admit to being down on their luck or recently laid off as they are to bring up their hemorrhoids… How many of you have accepted free lunches and other perks from drug reps? If you think that hasn’t affected your Rx’ing decisions, why not take the high road and ban these industry whores from your offices (and save the time for some real research?)

Oh you mean exactly like the practice the docs I work directly with have done with banning Pharma. It is also a practice that participates in what most people consider real research and training of the next generation of docs. Again these are known problems. Additionally I know practices with high populations of the poor that allow Pharma in to get the free samples which are the only way many of their patients get an medications. There are problems with costs of medications and I'm not sure the best way to address that, but some of what I've seen is more about Pharma buying politicians than doctors for things like getting patents extended and those kind of things that make a lot more money than buying lunch and handing out a few pens hoping it will convince a doc to prescribe your drug vs their drug.

The attitude here is such that I’d be loathe to spend any time in your offices, the arrogance and hubris is stifling. You’ll continue to have the same problems with the ‘alt med’ crowd until you get over yourselves and see yourselves the way your patients do.

You do know people are capable of switching gears and going from hard nosed science people to caring healthcare professionals. FWIW I like going to the hard nosed science docs as they: 1. Usually have implemented the most recent research on how to improve outcomes, reduce costs, and empower patients. 2. They can keep up when I need to talk the science.

If I may suggest looking for a patient-centered medical home for your care. The program addresses a lot of the issues that you bring up and that man practices are trying to address.

Maybe it will help you find the doctors who really are committed to patient care. (COI: I am working on a study that studies the process of practices becoming a PCMH)

@signalfire - I have no idea about the particular visit you have in mind, but I'll pass on something from my father regarding patients with major diagnoses. (He's been a specialist neurologist for 50+ years.) This is a close paraphrase (as close to a quote as I can remember) of what he said.

It's often useless or even counter-productive to schedule a long patient visit for the breaking of a major diagnosis. The vast majority of patients don't really register anything you say after the words "cancer" or "multiple sclerosis" or any other earth-shaking diagnosis. For years I would have patients come to me after another physician had made the diagnosis, complaining that their old physician had told them nothing, just given them the news and shoved them out the door, and for years I believed them. Until I had some physicians complain to me that I hadn't given my patients time, when I knew I had spent an hour or more discussing the implications with them. When I started paying more attention, I found that I could explain for the rest of the afternoon, and for most people, nothing registered. They were in too much shock. So now I schedule the long visit for the next one after I give them their diagnosis, so that they have time to come to grips with the word, before we add all the explanation on top of it. (End paraphrase)

Also, thirding or fourthing the idea that the Alt. medicine definition is way too broad. By that definition my husband (who is in a clinical trial), uses alternative medicine, because he sometimes uses massage and/or yoga to manage some of the joint-and-muscle related side effects of the experimental medication. Which he does because both he and the study doctor would rather he use physical management rather than adding other drugs to the mix. Neither the massage nor the yoga purport to be doing anything about the cancer at all, and there's no way we'll be pursuing any kind of alt. med treatment for the cancer proper.

A German man whose lovely wife got suckered by the "German New Medicine" version of quackery has posted the pictures of the breast cancer that took her life because the quacks had her take quackery and not medicine:

http://www.ariplex.com/ama/amamiche.htm

By Phoenix Woman (not verified) on 08 Mar 2015 #permalink

Well, there's one small bit of comfort, Orac. A patient can't actually "go to" Leonard Coldwell (the former Bernd Klein of Germany), because Lenny doesn't actually have a clinical practice or an office to go TO, thank goodness. He has often said/written that he is "retired from seeing patients" and that he "retired" from "clinical practice" because he wanted to focus on educating people about "natural cures." He claims to have had a whole string of hospitals/clinics back in his glory days in Germany/Europe... but there's precious little evidence of that, except for a few old German newspaper clippings that he posted on one of his web sites...
http://www.drleonardcoldwellbio.com/#!mtc-centers/c1fip

(At the end of 2012 he briefly posted on Facebook that in 2013 he was going to start "seeing patients" again... but fortunately that didn't happen, as far as I know.)

As discussed previously on this blog, he has no real medical credentials anyway, only some spurious PhDs and various "naturopathic" creds. Yet he continues to call himself "Dr."

However, a patient could conceivably eschew conventional medical treatment in favor of some of the "protocols" and endless supplements recommended by "Dr." C in his numerous videos, books, and other info-frauducts. So if that's what you meant by fearing that a patient might "go to" Coldwell, then it's a legitimate concern.

But be careful what you write about him, Orac. You may be the next person he sues. He seems to be on a roll now. :-)

By Connie Schmidt (not verified) on 09 Mar 2015 #permalink

Charlotte @#70

I don't really understand your comment. Do you mean it is hard to ignore the writer when she mentions the terrible alternatives that Wellness Warrior faced? Or do you mean it is easy to understand her loss of faith in 'western medicine' when it failed to save the life of her fellow breast cancer sufferer? Or do you mean that you agree Wellness Warrior made a huge positive impact on her followers?

If the latter then I disagree with you totally. The effect she had will be felt by many families for years to come and they will not be celebrating it.

By Gemman Aster (not verified) on 27 Mar 2015 #permalink