Monday, July 04, 2011

Why Isn't There an Anti-Oncology Movement?

Happy Fourth of July to all of our readers!


We will be posting a podcast later today--we kept this one short and sweet at just over 15 minutes.


We've talked quite a bit here about Anti-Psychiatry sentiment, and I keep wondering why psychiatry alone gets such controversy.  Oh, I think people are frustrated with other areas of medicine, and doctor bashing has become a popular past time, but I'm not aware that any other sub-specialty has an organized "anti" movement.  


Here's why I think that oncology might be a good candidate:


Like psychiatry, the treatments are not guaranteed: they may work, they may not.  

The treatments have horrible side effects: vomiting, hair loss, nerve damage, chemo brain, organ damage, cardiotoxicity, loss of body parts from surgery, infertility, and the list goes on.


They are never given involuntarily, you say, but I assure you there are patients who are cajoled and guilted into some pretty toxic treatments even when their chances of meaningful recovery may be quite low.  And a patient in a hospital who tries to refuse care and check out may well end up having a psychiatry consult called to assess their competence to make decisions.

Treatment is extremely expensive.   If you thought Abilify costs a lot, try Avastin at $88,000 a year, or Provenge which prolongs life by an average of 4 months and costs $93,000.


My best guess?  I think we're so conditioned to think of Cancer as deadly and terrifying that those who survive the illness and the treatment are 'programmed' to believe they must be thankful, and those who don't are too dead to complain.  Leslie will tell us it's because there is no formalized mechanism for involuntary treatment, and Rob will tell us that it's because there are known pathological mechanisms which dictate that cancer is real.  Is that totally true?  Don't we think that there are people who have early-stage breast and prostate cancers that likely won't progress to fatal diseases who are still subjected to disfiguring and toxic treatments in a mass sweep to decrease mortality rates?


Oh, my, not a very holiday-esque post!  And I don't have it in for the oncologists at all, I was just wondering. 










 

32 comments:

Anonymous said...

Because cancer is indisputably a disease, pure and simple. It can be measured and scanned and treated. It's criteria are objective. It is a physical illness.

Depression, for example, is also disease. But I would venture to guess that a very high percentage of people, including those of us who have it, are not not fully convinced. You can't take a blood test or run a scan and come up with clear answers. It's criteria are subjective. For that matter, there is probably a significant percentage of people who are suffering from depression -- but not from biological causes, from envirnomental. Can you ever fully separate the two? Not usually, but...the fact that you can invalidates some of the "biological" part of depression.

I hear your point that chemo etc may be uncertain. But, while cancer treatment may be uncertain, at least its existence as an illness is not. Mental illness, not so clear cut. So while the medication may be of uncertain value at times, it is made even more so by the inability to firmly and convincingly state that mental illness is truly a physical illness in the first place.

And I think that's why there is no anti-oncology (actually, Ithink there is a small anti-oncology movement) movement. Oncologists are at least treating illnesses that are indisputably physical/biological/chemical -- and therefore can be treated with physical/biological/chemical means.

(i've been in psychiatric treatment for 20 years and consider my life saved by old school antidepressants, which i continue to take. but i don't think that makes the above any less true.)

Alexis said...

I don't know if I would call it an organized movement, but there are plenty of opponents to traditional cancer treatment (many of whom peddle their own snake oil). Cancer woo is one of the most prevalent things on the Internet. They don't use the term "anti-oncology", because it sounds so much friendlier to define yourself as a fan of "holistic medicine", but it's what they mean--and they do refer to chemo as poison, toxic, etc. (Suzanne Somers: I rejected chemo, and survived! Breast cancer surgeon blogger: You had a lumpectomy of an early stage tumor, and were likely to be cancer free whether you did chemo or not.)

If you read the skeptic blogs, cancer is a very popular topic. I'd say I see more blogging about cancer related alt-med than I do about psychiatry. (Or, you can just read the UK Daily Mail, where there's a weekly quota on stories about things that either give you or prevent cancer.) The other hot woo is autism/vaccine nonsense. If you think psychiatry has it bad, you should see the vaccine vitriol--though that gets well into kook territory.

Anonymous said...

Unfortunately there is a large anti-oncology movement that encourages people to avoid chemo and radiation in favor of alternative or natural therapies. Its tragic and sad to see people die because they have been convinced the cancer will go away as long as they get rid of the "toxins" in their body.

aek said...

The red on blue and the fireworks are strobe-like seizure inducing. I'm truly nauseated!

Your questions require more thought and time to answer, but a quick response is that overdiagnosis and over treatment for cancers are aggressively being examined for just the reasons you cited: unfavorable risk to benefit ratio, iatrogenic harm, and quality of life issues, not to mention costs.

But standards of care and practice and experimental treatments are much more delineated, and the options, such as they are, are more transparently provided to patients. In psychiatry, assessments are subjective, and treatments are not based on objective findings and science. You can choose any one of two dozen or so antidepressants largely based on patient preference, social acceptability and side effect tolerance, rather than on the effects on known pathophysiology. That basis of choice won't fly in oncology or any other branch of medicine where it is the reverse. Empirical evidence is lacking in psychiatry.

In many cases, the "treatment" such as it is, is worse (quality of life and degree of distress) than the "disease" or in the case of psychiatry, distressing symptoms in the absence of known disease.

Maggie said...

There is an anti-oncology movement.
SBM has a decent debunking of the "cancer has been cured and the biotech companies don't want you to know about it because they're making money off of non-cure cancer treatments" argument:
http://www.sciencebasedmedicine.org/index.php/the-hidden-cancer-cure/
And Quackwatch.com certainly has no shortage of scathing criticisms of alternative cancer treatments.

It's just anti-psychiatry people who come to your blog because your blog is about psychiatry. Why would anti-oncology people bother trolling a psychiatry blog?

rob lindeman said...

aek and Maggie said it better than I could, so let me echo and amplify: If there is no anti-oncology movement afoot, there should be.

Prostate cancer and breast cancer are two of the most over-treated entities in modern medicine. The tide is beginning to turn, however, if the literature is to be believed.

The President was roundly excoriated in the press from the left AND the right for telling the truth about mammography. I suspect the several social media including the blogosphere are better places than the bully pulpit to spread the truth.

wv = imastme imastme, now yougottakistme

Sunny CA said...

A friend of mine had chemotherapy for ovarian cancer and thought she had been "cured". She remembered it as the most awful experience of her life, but it saved her life and she was able to live drug-free afterwards. Unfortunately her cancer came back and she was told she would have to be on chemo "for life". I am sure that she hated chemotherapy as much as anyone hates any drug ever made, but she viewed it as her only option, the other option being death. Even with that she considered refusing the second round of treatment. Another woman I know quit chemotherapy for a brain tumor mid-treatment after 3 months of living hell. She had made the decision to die instead of continuing, but luckily it seems she had been on chemo long enough, because it has been more than 15 years and the tumor which shrank did not grow again. Both these women are chemotherapy "haters" though I doubt they have joined a movement and have feelings of ambivalence.

Luckily I have not faced chemotherapy. Not even taking adverse side-effects into account, I found the primary effect, presumably desired by the psychiatrists, of a group of psych medications I that I took, to effectively take away what it is for me to be human. I lost all emotions, and hence felt like a high functioning robot, but simultaneously, my long and short term memory was affected (a side-effect), so I was like a "dumb" robot. I was capable of menial work and polite conversation, but not of joy or sorrow or intelligent discourse or work that required intelligence or emotional input. I was unable to read because I could not follow a simple story through the length of a paragraph. I had no sense of humor because whatever emotion required to laugh was missing. A different drug, which was used my first week as an inpatient made feel as though I had drunk a 5th of scotch. I was barely capable of functioning through the haze, unable to even speak more than a few words. This loss of feeling, loss of personality, and loss of intelligence felt like an invasion. I suppose everyone has seen some bad science fiction where the hero is given "mind control" drugs. It felt that way to me. The essence of my humanity was taken by the medications. I don't know what my situation would have been if I had not been given the drugs.

I know friends who love their antidepressants and anti-anxiety medications, so I know there are medications used that are loved by patients for the way they make them feel. I did not take any like that.

SG said...

My theory why psychiatry gets hit so hard: psychiatry has allowed that to happen. After the publication of the DSM III in 1980, psychiatry switched to a largely bio-medical model of mental illness to save its professional skin, and much of the "evidence" that formed the core of modern psychiatry came from pharmaceutical companies (see Anatomy of an Epidemic, pp 263-312). There WAS some discontent and mistrust of this "evidence" by some psychiatrists, but this dissidence and skepticism was largely drowned out by the APA and mainstream psychiatry which was all too willing to get caught up in the euphoria of finally being able to treat mental illness like any other physical ailment, even though the evidence for that euphoria was lacking to say the least and largely hasn't held up.

I should also mention no small part of that euphoria was from all the cheap money flowing around courtesy of pharmaceutical companies who bought off psychiatrists to be KOLs. As ex-drug-rep Dan Carlat said, "Receiving $750 checks for chatting with some doctors during a lunch break was such easy money that it left me giddy." Such easy money surely helped psychiatrists look the other way at all the corruption.

Treating mental illness like any other illness is a worthy goal, indeed. But it's gone largely unfulfilled nearly 30 years later (I think we all know where the "chemical imbalance" theory and the advice to take your SSRIs because "it's like insulin for diabetes" went). It is my theory that patients and the general public are, at least subconsciously, growing tired of these broken promises and the close relationship between psychiatry and pharmaceutical companies.

And, as Dan Carlat outlines in UNHINGED, psychiatry is uniquely vulnerable to pharmaceutical excesses because its diagnoses are so spongy and subjective: it doesn't take a genius to understand it took the pharmaceutical companies all of 5 seconds to realize the massive market potential for working hand-in-hand with psychiatry to create new disorders that could bring in new revenue streams (re the Sarafem/Premenstrual Dysphoric Disorder debacle). No other medical discipline has such supple diagnoses and, thus, has no greater vulnerability for corruption. And if psychiatry is so uniquely vulnerable to corruption, it should be that much more vigilant against it. But it so obviously hasn't been.

All of that to say this: psychiatry is uniquely aligned with pharmaceutical companies because of its post-DSM III outlook, which posits that mental disorders should be treated like physical ailments, and the treatment of choice is medication. Thus the all-too-cozy relationship with big pharma, which, I would argue, is the coziest of all medical specialties. And considering the public's general mistrust of pharmaceutical companies and their widespread corruption, it's not hard to see why psychiatry is currently the whipping boy of medicine.

Ultimately, I think the issue really comes down to one of degree. Modern psychiatry has so definitely put its eggs in the biomedical model basket, which allows it to position itself far closer to pharmaceutical companies than other medical specialties which, as I've just mentioned, virtually guarantees a low public opinion. And when people read books like ANATOMY OF AN EPIDEMIC, UNHINGED, THE EMPEROR'S NEW DRUGS, or posts by 1boringoldman.com and see how sustained and largely unchallenged this corruption has been and its huge implications for society (including a rapidly growing proportion of children, which fields like oncology largely don't have to worry about re we're not seeing explosive rates of childhood cancer, but we are for childhood bipolar, ADHD, etc), this just adds fuel to the fire.

rob lindeman said...

[Am I violating the new moderation rules if I comment a second time?]

Scanning the other comments the first time I missed Alexis' excellent point about the anti-vaccine crowd. I wade into these waters on a daily basis. You guys may remember I did a series on vaccines and their critics at my erstwhile blog. By comparison, the treatment of psychiatry is a blessed relief!

wv = rewnswit (Old Eng.) Equine perspiration

Anonymous said...

There isn't a CoS behind any anti-oncology movement, using their "tech", tactics, and strategies to add fuel to the comments of outspoken oncology critics (a la Szasz, Breggin) and those who've had bad experiences in order to discredit the profession and drive people to their own unique brand of "treatment." (Of course, a handful of psychiatrists have been doing that themselves lately, thank you very much.)

SteveBMD said...

To reiterate some comments by AEK and SG, it's subjectivity vs objectivity, pure and simple.

With very few exceptions, what counts as a psychiatric "complaint" is determined by what society (or at least a bunch of guys in a DSM planning meeting) defines as "abnormal." There is no gold-standard of "disease."

Cancer is, objectively, a biological abnormality which leads to certain death in all cases. (Sure, the rates at which this occurs are variable, and we can argue about how best to treat it...)

As others have pointed out, I think a better question would be "why isn't there an anti-oncology treatment movement?" Or, better yet, "why isn't there an anti-hypertension movement?" or "an anti-hypercholesterolemia movement?" Those are pretty subjective (and prone to bias by industry-funded researchers), too.

Looking forward to seeing my comment-- after moderation, of course!! :)

Anonymous said...

OP:

I think we're so conditioned to think of Cancer as deadly and terrifying that those who survive the illness and the treatment are 'programmed' to believe they must be thankful


Barbara Ehrenreich (sp?) did a book on "positive thinking" ("Bright Sided"), and wrote in the opening chapters about her and others' experiences with cancer.

Being "grateful" for $93K/yr treatments ties in quite nicely with some of the theses of her book, although right at the moment I don't recall her ever talking about the expense of treatment.

Might be worth a few minutes of time going through her book. Might explain (partially) why these $$$ treatments are not frowned upon.

Anonymous said...

Your readers have written about this in the comment section of other posts, but to repeat, some people do refuse cancer treatment and some more would have had they known what the effects would be. As in psych, it is tough to know who will benefit from going through treatment and who will be harmed. As in psych, some get better and some do not.
As I see it, one big difference is that people who refuse chemo are allowed to go off and tick things off their bucket list while they can.Yes, many are cajoled if they have a doctor who believes s/he knows best. In the end, it should be up to the patient and there should be something called choice rather than anti anything. I can choose to have this illness treated or I can choose otherwise without telling anyone else what choice they ought to make. Off topic but not so much, homeschoolers make a choice based on their values, child's needs and so on. They don't have to be "anti-school". Let's use the word anti less often.

Dinah said...

Anon, I disagree. It's not just paternalistic doctors who cajole patients into having cancer treatments, it's families. I don't know of any cases where a young person has died of a treatable form of cancer because they just decided 'oh having my testicles removed is not for me..." If the decision does not seem right to those involved, there is a lot of pressure.

As it stands now in our state, if you're not an imminent danger, a patient can refuse treatment. If they are felt to be an imminent danger, they can be hospitalized involuntarily, and with a lot of hassle, a separate hearing can mandate they take medications. As soon as this person is no longer considered to be a danger (which was yesterday per the insurance companies), they are discharged and they are free to refuse follow-up treatment and to stop their medications. This happens all the time. The cycle changes a bit if there was a conviction for a crime due to the mental illness.

Anonymous said...

As long as involuntary treatment exists there will strong opposition.

Leslie

Anonymous said...

Dinah,

You are correct in that much cajoling is done by families. I thought of doctors because in our case the family felt chemo would be the wrong choice, the family member with cancer also thought this but once everyone got that out into the open (since no one ever wants to say don't get treated, just go die, which is how it could be interpreted by some) in came the doctor to convince the family member that there was a trick up a sleeve that would work. It didn't. So, not trying to put all the blame on doctors but everyone's situation is different. About the young person, I assume guy, with the testicular cancer, well I knew a young guy who was allowed to say no thank you to what would have been a relatively simple procedure and he died. The doctors knew he would die. The family knew. He chose not to have the treatment that would have saved his life because he was frightened. So while I am not a doctor, I do know of one case in which a young person chose to die, not to say that there was not a great deal of pressure exerted upon him to get his consent but the fact is he died and did not have to.

Anonymous said...

...or an anti-constipation movement.

Anonymous said...

Leslie, involuntary treatment is determined by society and laws, not by psychiatrists and psychologists. If society felt comfortable letting people who clearly are adanger to themselves or others go on about their less-than-merry way and let the chips fall where they may, then mental health professionals would not be assigned the legal duty to step in. Until another option is agreed upon, involuntary treatment won't go away.

Knot Tellin said...

What a thought-provoking post. As a psych practitioner who is living with cancer, I wonder why it never occurred to me.

There can most definitely be a strongly coercive element in cancer treatment; sometimes practitioners seem to view themselves as fighting a holy war. They have to fight cancer, destroy the tumor, wipe out the disease. Indeed they often "destroy the village in order to save it".

A patient who does buy into that mindset can often find himself/herself in a very awkward position. The oncologist is saving your life! How can you not be grateful? How can you not wholeheartedly accept and follow his/her "suggestions"?

A person with a major psychiatric disorder will often be in the position of not understanding the nature of the disease or of not being able to make a truly informed consent to treatment due to cognitive dysfunction related to the disease. A person with cancer will often be in a similar position, due to the trauma of the initial diagnosis or the sheer complexity of the disease and its treatment.

Psych practioners sometimes have a paternalistic attitude to patients: "I can help you if you will allow me to." Onco practitioners also can have this attitude: "I think I can save your life if you agree to this, that and the other."

Onco patients are often the subject of disease-related social stigma. They are often blamed for their disease. "You smoke, you keep your emotions inside, you don't take care of yourself, you have secret sin in your life, you have an 'oncogenic' lifestyle, you eat the wrong things... You brought this on yourself." Psych patients are stigmatized as being dangerous or stupid or devious or sex fiends or not taking care of themselves. They are different, not like "us".

No one really knows what causes cancer. No one really knows what causes major psychiatric disorders. That is scary. If we don't know what causes it, then maybe "I" am vulnerable, too. By exercising control over the patient and the disease, "I" am somehow warding off an evil fate.

This has been a more than a bit of a ramble through the amusement park that I am pleased to call my mind. I am fascinated by this comparison and will certainly give it more thought.

Thank you for this post.

rob lindeman said...

Last anon.

Tsk, tsk. It will not do to blame "society", whoever they are (us? them?)

The sine qua non in involuntary commitment and treatment procedures is the psychiatrist. See the ruling late last week authorizing forced treatment of Jared Lee Loughner. See also Addington vs. Texas.

Society does not compel psychiatrists to play this role. I insist they should not play it.

wv = amitarj This Summer's Blockbuster action flick

Dinah said...

Knot Tellin:
Thank you for adding to the discussion. I did mean to add that people are often blamed for their roles in getting both mental illness and cancer, thanks for filling in the blanks.
Wishing you well.

Anonymous said...

I really despise the term "anti" as in my opinion, that is used to marginalize people who disagree with policies.

For example, folks who opposed the US invading Iraq were deemed Anti-American. In light of what we now know about there not being any weapons of mass destruction, how ridiculous does that look now?

Regarding being anti psychiatry, anti this or anti that, that isn't what it is about for me. It is about being treated with respect. Here are the situations that bug me and may cause me to appear anti something when I am really not.

1. I am against the healthcare practitioner who marginalizes me by acting like they are superior because they have the MD by their name. That can be any doctor and not just a psychiatrist or oncologist.

2. I am against the alternative healthcare professional who looks at me incredulously when I question in a diplomatic matter the validity of a test she is suggesting. Hey look, I may not have your credentials but don't treat me like I am stupid.

3. I am against the nurse practitioner who claimed that Wellbutrin XL was completely harmless and didn't cause tinnitus.

I can provide more examples but I think you all get my point.

As far as psychiatry and oncology, I wanted to mention one thing in which I feel there is a similarity.

Like with psych med withdrawal, many people have complained that after stopping chemotherapy, they continue to experience side effects like cognitive issues. Just like people felt like some psychiatrists were blowing them off regarding psych meds side effects, people felt the same way about the oncologist regarding chemotherapy.

The attitude of the psychiatrist (Not saying this is true of everyone as an FYI) - Heck, you're not depressed so having a diminished sex life is a small price to pay.

The attitude of the oncologist -(Again, I am not saying this is true of everyone) So what if you're having brain fog, you're alive, deal with it.

Anyway, I think doctors need to follow the philosophy of companies that have great customer service policies. Instead of looking at complaints as annoyances, they look at them as opportunities for improvement.

I know this sounds hokey and trust me, those who know me would vouch for the fact that I am usually the one who is tearing apart slogans.

But this one makes sense in many ways. Obviously, some people who seem anti this will never be satisfied no matter what. But many people have legitimate complaints and need to be heard whether they are deemed as being anti psychiatry, anti oncology or anti whatever.

Those anti whatever folks who have legitimate complaints and are respectful have alot to teach doctors if only they were willing to listen.

AA

Knot Tellin said...

AA, I think most doctors and nurse practioners and other providers do pay attention to patient complaints individually: one doc, one patient. Most of us are eager to learn and grow. Very few people go into this field with a straight up power motive.

On an institutional level, however, things get more complicated and less personal. The first mandate of an organization is to preserve and perpetuate itself. Yes, the institution (and I don't mean only buildings) is made up of people, but it becomes something more (some would say "less") than the sum of its parts.

In working to effect change, I think this is an important distinction. The two situations call for very different approaches.

rob lindeman said...

Knot Tellin,

10 years ago I would have said there's no way that I'm paternalistic or directive or coercive with families. That's because I wasn't listening to my own voice. I was singularly paternalistic. It's an easy trope to model, because of the unequal power relationships in this business. This is especially so when the client is ill, distressed, or in pain. We should strenuously avoid coercion of any kind.

BTW, when I first saw your tag, I read "tefillin knot", which should tell you how thoroughly over-digested is my religious education.

Sunny CA said...

Knot Tellin:

Thanks for your insightful addition to the original post. I wish you a speedy recovery.

Knot Tellin said...

Since we're double dipping...

Rob Lindeman:
I went through a similar process (well, not the tefillin...). I was quite sure that I was not paternalistic, condescending, overly directive, dismissive... and so on with my patients. Eventually - and I am very grateful it took only a few years - a patient who had been a medical professional started me thinking very deeply and in practical terms about the power differential in the therapeutic relationship. I had said all the right things before, but hadn't really grasped my own part in it.

The process was continued by a very confused and disoriented patient who had been ill for most of her adult life. She began to mirror my verbal and nonverbal language to me. It was like looking into a magic mirror - the image is distorted like a funhouse mirror, but it somehow shows you truths about yourself by means ofthe distortions.

Since then I have been a lot more humble. The power disparity remains, however, and I believe that it is unavoidable, instrinsic to the relationship. All I can do is be aware of it and encourage my patients to be open in discussing it.

Sunny CA:
Thank you very much indeed.

To the Shrinkrappers:
Thank you for inviting us into your living room. I'll come visit again, if I may.

Shrink2B said...

I'm sure someone will tear this list to shreds and ridicule me for each one - but nevertheless, here it is:

Each specialty has a catch all diagnosis that gets overused. There are people who have it - then there are all those people with a few symptoms, and it doesn't really fit anything, so we call it a specific ailment so they can get treated. Here's the list I made in Medical School:

Psychiatry – bipolar
OB/GYN – fibroids
Rheumatology – Fibromyalgia
Pediatrics – URI
Orthopedics – arthritis
Gastroenterology – IBS
Urology – BPH
Dermatology – eczema
Plastic Surgery – UCA (Unacceptable Cosmetic Appearance)
E.R. – Rule out Chest Pain
Neurosurgery – DDD
Cardiology – Angina
Family Practice – Bronchitis
Endocrinology – Pre-diabetes
Neurology – Altered mental Status

SG said...

Shrink2B: That is a GREAT list! It's very useful for patients to keep in mind so they can protect themselves from over-diagnosis! Thanks again!

rob lindeman said...

I like URI for peds, cuz it means you get to leave the kid alone, which is as it should be...

Anonymous said...

Rob: If you cannot teffilin properly, that makes you a head case. do not delete--this is a pun, not an insult.

verification" bidshook: nuf said

Sideways Shrink said...

I love this blog. Thanks Dinah, Roy and Clink Shrink for all your new hard work moderating us grouches....

camobel said...

Thanks so much for the article, quite useful material.