NOCEBO EFFECT: WORDS AND PAINS

WHEN PREDICTION RHYMES WITH CURSE

By Annette Lexa, PhD Toxicology
Regulatory Toxicologist-Environmental Health Risk Assessor Expert (Eurotox)

A medicine that neglects the link between body and mind

Modern medicine maintains the idea that it is a rational, objective practice, resulting from a scientific approach, in constant progress and in which belief does not enter into account. It relies more and more on state-of-the-art technical tools, on computers, on statistics... It is based on the reductionist postulate that therapeutic activity is purely a molecular pharmacological activity, targeted on the diseased area (by replacing, preventing, regulating or stimulating the synthesis or release of an endogenous molecule).

Medication or therapeutic act is administered to a biological body that is supposed to be "inert", and ignores patient's living body, much like adding oil to an engine or tightening a bolt. It relies on measurement of biological parameters, using standardized anatomical-pathological criteria to diagnose or evaluate effectiveness of a treatment. And it often only addresses an effect, a consequence, but rarely the root cause.

This system of thought has made possible to make great discoveries and achieve major advances (pain, infections, surgery...). But it has also distanced us from common sense, pragmatism and the obvious. Our long dualistic tradition, inherited from Descartes, has separated body and mind and this separation maintains confusion: emotions, thoughts would have no consistency, no biological reality (if it is not by the trace of a nervous influx passage) and no influence on biological body.

This conception of the body suggests that the "spirit" would be an entity separate from the body and would have no connection with the body. This is one of the paradoxes of scientism.

Yet it is science itself that has confirmed what we have always known, that body and mind are intimately intertwined, with mind influencing body and body influencing mind, in a constant back and forth.

The placebo effect conveys hope

Medicine has introduced the placebo effect in clinical trials to evaluate therapeutic efficacy, but continues to largely ignore and underestimate this effect for ethical, dogmatic and economic reasons.

The placebo effect, which has been known for a long time, has often been ridiculed. It remains insufficiently studied for its therapeutic potential. All we know is that it acts by influencing physiological defense mechanisms of the body (pain, depression, Parkinson's disease...), brain secreting endogenous substances which in turn are capable of influencing pain circuits for example. It can even cause release of dopamine in Parkinson's patients with a dopaminergic deficit.

 But to this day, the initial mechanism (belief, emotion) that led to triggering the biochemical pathway, that ultimately results in the production of dopamine, remains a mystery to science.

And if the placebo effect, whose origin is still poorly known, is that of an object that conveys hope, the nocebo effect is even more mysterious.

 When prediction rhymes with curse 

The definition of the nocebo effect is what causes the disease by anticipation of the disease in a favorable emotional context. The subject expects a well-defined negative event via social, media, professional, popular messages, etc., and this event will occur. Of course, not everyone is sensitive to this nocebo effect. It will depend on mental state, the person's inner world, his or her way of being in the world, beliefs, capacity for self-analysis, time and social context in which this person lives.

 This is the case of voodoo death described by the first anthropologists, or closer to our societies, collective hysteria or categorization of pathologies (you are pre-menopausal, bipolar, pre-hypertensive, your child is dyslexic, he has an attention disorder with hyperactivity ...).

The nocebo effect is based on 3 main mechanisms of the mind:

  • a suggestion: negative messages and attitudes from caregivers, autosuggestion,
  •  conditioning and belief,
  •  symbolic representation: white coat effect, collective symbolic representations.

I believe, you believe, we believe... 

We have forgotten how much we are symbolic animals. Animals because we are gifted with reflexive learning abilities, symbolic because we need strong representations and signs that make sense.

We are capable of autosuggestion and suggestion (Coué method, hypnosis...), capable of mental manipulation (Mesmer's tub and magnetism, voodoo death...) and we neglect to what extent medical visit, white coat and red or blue pill, imaging devices have replaced these curious rituals which seem to us to come from another time and seem ridiculous. We have forgotten how reality is constructed by our minds and that we all need to believe and convince ourselves.

The American philosopher Charles Sanders Peirce helps us to understand how our beliefs, such as the belief that "the earlier a cancer is caught, the better the chance of a cure:

  • by tenacity (repetition) which allows us to avoid wasting time, even if it means persisting in bad faith,
  • by the a priori (it's likely so it must be true, even if it is not demonstrable), this method dispenses with any effort,
  • through the use of authority argument (intellectual manipulation, emotional extortion, physical coercion) which allows to organize crowds by discharging them from doubt and reflection,
  • by scientific approach, which is more demanding but allows for criticism of method and results.

The play "Doctor Knock or the triumph of medicine" by Jules Romain is a perfect example of the effect of convictions on health. He denounces the manipulation of a medicine that has become so powerful that it transforms all healthy people into patients who ignore themselves. Yet this dated comedy is totally modern, since today we are witnessing the creation of diseases and pre-diseases everywhere (disease mongering) and everyone wins... except the healthy individual surrounded on all sides (and still amazed to be alive in the face of so many diseases) and the real patient that an overwhelmed medicine ends up not being able to treat properly, because of an inflation of non-patients and pre-diseases cluttering up the waiting rooms.

The response to physiological stress: a possible explanation of nocebo effect

Faced with an anxiety-provoking situation, we have three options: suffer, flee or fight. If we cannot flee, we can fight. If we cannot fight, we are doomed to suffer. During stressful situations that we cannot avoid either by fleeing or by fighting (moral harassment for example), our body secretes chemical messengers, such as cortisol, which end up causing pathologies: immune system overload, heart attack, hypertension, psychic disorders (memory loss, fatigue, insomnia, anxiety, depression), infections and cancers due to immune system collapse, suicide, death.

The role of cholecystokinin (a neuropeptide secreted by the duodenum but also by the brain) is evoked: it provokes a reaction of pain in a person who is afraid (as well as nausea). The deactivation of the endogenous dopamine and opiate systems are also involved in pain.

A poorly known and largely underestimated effect

A search of the PubMed database in 2011 revealed that the keyword "nocebo" was indexed to 151 publications. In comparison, more than 150,000 were linked to the keyword "placebo". 2200 studies were related to the placebo effect while only 151 publications were related to the nocebo effect of which 20% were empirical studies, the rest being letters to the editor, comments, editorials and reviews.

Main tool for verifying the effectiveness of a therapy is a randomized, double-blind clinical trial. Two cohorts of patients are randomly selected (matched by age or other criteria), with the patient and the physician not knowing whether the therapy is placebo or active ingredient. It is easy to understand that it is ethically impossible for medicine to do harm (primum non nocere) and that the nocebo effect cannot be studied in a case of randomized clinical trials.

However, nocebo effect has been observed when switching from drugs to generics. And it was studied because there were economic stakes. The content of excipients changes, appearance of capsule and its color change, engraving, size, taste, speed of dissolution under the tongue ... Yet active ingredient remains unchanged. And yet  reporting rate of adverse reactions explodes.

I will harm myself, you will harm me, we will harm each other... 

There is no need to look for someone else to take responsibility for your own actions to harm yourself sometimes:

  • Narcissistic injury, humiliation, resentment, feeling of uselessness...
  •  Unconscious family loyalty
  • Birthday syndrome
  •  " Programmed " death
  •  Habit to obey, to be assisted, lack of audacity, of courage…

Medical profession bears its share of responsibility, often unconsciously or negligently, for certain words, silences, acts or gestures:

  • Diagnosis or prognosis (self-fulfilling prophecy) announced by the physician (aggravated by the obsession with the right to know enshrined in law)
  • Named, catalogued condition,
  • A caregiver's abrupt and clumsy verbal suggestion ("If you don't take my treatment, by Christmas, you're dead"),
  • Reading summaries of 'product characteristics' provided to patients (adverse reactions),
  • Wild decoding of conflicts by inexperienced therapists generating perverse and iatrogenic effects (theory of Doctor Hamer, known as "New Germanic Medicine"),
  • Routine practices, harmful relational interactions between patients and caregivers in hospital (lack of sensorial and emotional interactions, negative thinking).

Finally, at collective level, nocebo effect is well known:

  • Voodoo death, collective hysteria
  •  Hospital institutions: denial of suffering, hyperactivity to avoid patient relationship, mind/body cleavage, excessive security seeking, routine, mothering, regression
  • Risk of a nocebo effect on healthy ("ignorant" patients) and their descendants, a risk linked to personalized predictive medicine, "disease mongering" (creation of diseases), vaccine obsession, obsession with normality, screening for cancer, incurable Alzheimer's disease, etc.

Nocebo effect and breast cancer screening 

Systematic breast cancer screening, which is performed on a massive number of women in Western countries, most of whom will never die of breast cancer, poses an ethical dilemma for medical profession and community: by trying too hard to "do well", to "save lives", are we not doing the opposite?

Should the taboo that surrounds the panic fear of a de-spiritualized society, that has nothing left to offer other than over-medicalization to calm existential anxieties, continue to hold normative categories of populations hostage (such as women between 50 and 74 years of age for example)? Should economic criteria lead medical profession to betray one of its main precepts, primum non nocere?

How can a truly targeted and effective screening be carried out, while avoiding inducing a long-term nocebo effect on healthy women who may be over-diagnosed and over-treated (30% over-diagnosis, or even 50% in the case of ductal cancers in situ) and on their descendants? This is the question that professionals in healthcare system should be asking themselves today.

Because the impact of early detection of breast cancer on overall quality of life of women concerned (their well-being) is underestimated, denied and not studied at all in risk-benefit balances. And yet...

  • Chronic stress of "terror of cancer" maintained by medical profession relayed by media,
  •  Painful exams, anxiety-provoking, anxious expectations of exams and results every 2 years, misdiagnosis and diagnostic escalation,
  • Physical and psychic impacts of "preventive" breast removal, radiotherapy sessions and chemotherapy practiced in excess,
  •  Complications of surgical procedures and invasive diagnostics, nosocomial diseases,
  •  Secondary cancers induced by repeated exposure to ionizing radiation from mammograms and radiotherapy,
  • Transgenerational nocebo effect on daughters and granddaughters of women who have had breast cancer in their family.

All these consequences are not taken into account in what should be a global benefit-risk assessment in terms not only of mortality reduction, but also in terms of quality of life.

He who makes the angel makes the beast

Well-being (physical and mental) is at center of all concerns. The smallest psychological unit is set up in case of more or less traumatic events. Except apparently when it is a question of enlisting entire female populations, without any special care or precautions, in organized breast cancer screening.

This repeated examination generates chronic discomfort for a certain number of women, a discomfort that is denied and underestimated by social and medical institutions, which nevertheless try to "play it down" and trivialize it, even though it carries within itself potentially devastating individual and intimate consequences. It is somewhat as if society accepted such a price to pay, such sacrifices in name of medical progress.

We live in an anxious society, creating pathologies and spending crazy energy to repair the diseases and pollutions it has created itself (so-called diseases of civilization including diabetes, cardiovascular diseases, autoimmune diseases, cancers ...) and while our fundamental knowledge on development (and regression) of cancers by an organism is still at a standstill.

Words are a powerful tool at the disposal of modern medicine. But words are double-edged weapons that can cure but they can also kill. And medical personnel are neither prepared nor encouraged to use this formidable therapeutic tool.

Medicine, through its managerial and judicial obsession (Kouchner's law) has entered into a vicious circle that is aggressive, regressive, generating anguish and fear by creating pathologies through excessive interventionism. However, it could find its way back to the path of common sense and pragmatism, and this in interest of real patients who should be able to benefit from all the attention.

To do so, medicine could :

  • Treat both pathology and 'lived' body of patient.
  • Reclaiming a place for symbolic meaning, the word that heals and the representations of illness experienced in care practices.
  •  Ensuring symbolic effectiveness throughout diagnostic and care pathway
  • Recovering the benefits of lying (the right not to know)
  •  Avoid creating diseases by obsession with the norm
  • Discreetly practice predictive medicine based on genetic determinism, underestimating the role of epigenetics, environment and chance in the development of a pathology.
  • Above all, being pragmatic, regaining common sense (it is true what succeeds).

Finally, women, who are too docile and submissive to medical profession, should take care to reconnect with their intelligence and intuition and not rush into the spiral of screening, not to submit to it without first serenely weighing personal, intimate advantages and disadvantages that it represents for themselves.

Finally, medicine and society should ask themselves questions about meaning of life and death other than through techno-scientific answer: recognize the place of medicine, which does not make it absolute master of life and death of individuals, find meaning elsewhere without waiting, and ask medicine for more than it can give.

Beyond capture of the topic by "experts", the limits of screening open us all to exciting reflections on our fears, our fragilities, our limits, our weaknesses, our freedoms. On the meaning of our life and death. In reality, a beautiful challenge.

Bibliography 

Nocebo, la toxicité symbolique, ouvrage collectif, Collection Thériaka, remèdes et rationnalités, Jacques André Editeur, 2010, 231p.

Thierry Janssen, La maladie a-t-elle un sens, Ed Fayard, 2008, 351p.

Disease mongering ou stratégie de knock

http://docteurdu16.blogspot.fr/2009/02/disease-mongering-ou-la-strategie-de.html

The patient paradox. Why sexed-up medicine is bad for your health. Margaret McCartney.

http://docteurdu16.blogspot.fr/2015/12/the-patient-paradox-why-sexed-up.html

Raul de la Fuente-Fernandez et al. , Expectation and Dopamine Release: Mechanism of the Placebo Effect in Parkinson’s Disease, Science 10 August 2001 ,Vol. 293 no. 5532 pp. 1164-1166

Winfried Häuser et al, Nocebo Phenomena in Medicine, Their Relevance in Everyday Clinical Practice, Dtsch Arztebl Int. Jun 2012; 109(26): 459–46

Annette Lexa, Le dépistage du cancer du sein, dernier avatar de la misogynie médicale 

http://cancer-rose.fr/qui-fait-quoi/le-depistage-du-cancer-du-sein-dernier-avatar-de-la-misogynie-medicale/

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