How Much Truth Should the Doctor Tell the Patient in View of the NOCEBO EFFECT?
The "Nocebo Effect" is described in the Wikipedia article by the name Nocebo and begins as follows:
"In medicine, a nocebo reaction or response refers to harmful, unpleasant, or undesirable effects a subject manifests after receiving an inert dummy drug or placebo. Nocebo responses are not chemically generated and are due only to the subject's pessimistic belief and expectation that the inert drug will produce negative consequences."
It has been through research using placebos to establish that such a negative reaction exists. The real clinical and ethical importance of such a concept is with regard to informed patient consent with regard to potential medicine side-effects or in presenting to the patient a full description of the complications of any form of treatment.
The Nocebo Effect as discussed in an article titled "To Tell the Truth: The Whole Truth, May Do Patient Harm: The Problem of the Nocebo Effect for Informed Consent written by Rebecca Erwin Wells and Ted J. Kaptchuk in the American Journal of Bioethics March 2012. The Abstract of the article follows:
The principle of informed consent obligates physicians to explain possible side effects when prescribing medications. This disclosure may itself induce adverse effects through expectancy mechanisms known as nocebo effects, contradicting the principle of nonmaleficence. Rigorous research suggests that providing patients with a detailed enumeration of every possible adverse event—especially subjective self-appraised symptoms—can actually increase side effects. Describing one version of what might happen (clinical “facts”) may actually create outcomes that are different from what would have happened without this information (another version of “facts”). This essay argues that the perceived tension between balancing informed consent with nonmaleficence might be resolved by recognizing that adverse effects have no clear black or white “truth.” This essay suggests a pragmatic approach for providers to minimize nocebo responses while still maintaining patient autonomy through “contextualized informed consent,” which takes into account possible side effects, the patient being treated, and the particular diagnosis involved.
How much of the "good news" of a drug or other treatment or disease prognosis and how much of the "bad news", that is, side-effects of the drug, complications of the surgery or other procedures or disease outcomes (in view of the documented "nocebo effect" ) would you want to know from your doctor?
For those who want to read more on the issue "Is It OK for the Doctors to Lie?" go to my earlier thread on the topic and take a quiz about lying if you were the doctor in various situations. ..Maurice.
Graphic: From the Wikipedia article.
posted by Maurice Bernstein, M.D. @ 10:27:00 PM
9 comments
9 Comments:
The moment I read "How much of the truth..." my teeth clench.
We are adults. If you don't tell ALL of the truth, you're not really telling the truth at all.
Just because there may be some unfortunate consequence of telling the truth does not justify withholding the truth (unless perhaps, the husband is asked if a dress makes her butt look fat).
Withholding (some of) the truth to "protect" the patient smacks of the paternalistic medicine that I personally find very offensive, and not appropriate these days. I wonder if it's even technically ethical.
Of course, what I've seen in practice is, physicians just about never mention any downside or side effect, unti/if directly asked. Then, they waffle. Then, the patient goes and reads it on the internet. Does anyone really think that is better?
TAM
TAM, if you did some of your own research on the matter of the NOCEBO effect and found that there appeared to be validity in the concern regarding how this would affect the symptoms and perhaps the outcome of a therapy, wouldn't you agree that withholding "some facts" or expressing the facts in a more careful and nuanced way, based on the patient's underlying disease and physician understanding of some of the psycho-social issues of this specific patient be a more beneficent way to inform?
I agree that getting the "facts" from the internet just primes the patient to develop the nocebo effect. The internet knows nothing about the patient. ..Maurice.
I'm not saying the NOCEBO effect isn't valid, I believe you that it is. I'm just saying that the solution to it isn't to withhold the truth.
Discussing it carefully, but truthfully, seems appropriate to me.
An older lady I was close to was prescribed all sorts of medications. No one would ever mention side effects when they were prescribed. Then, she'd fill the prescription, read the package insert and/or look on the internet, and refuse to take the medication. Or, if she did, and got any hint of a side effect, stop taking it.
I learned to be very determined about "making" the doctors discuss side effects, AND how often they occurred, and what to do if they did. For ex. - only 1 out of 100 people get this side effect. If you do get it, we can try splitting up the dose. We'll make sure the medication doesn't bother you too much. Then, she would actually try the medication, and work with the doctor instead of just refusing.
If a physician isn't fully truthful with patients, and they figure that out (easy to do with the internet) or even the package insert from the pharmacy, then they feel they have been lied to, and distrust the physician. That's how my friend felt - that they didn't care if she got side effects and was miserable. That they'd just write scripts, and not bother to discuss it with her.
In the past, where people just blindly trusted the doctor and did what they said, not discussing side effects might have worked to some extent. But there's too much information out there now.
I personally find the amount of medical information on the internet wonderful. Unfortunately, there are a lot of unreliable sites also. I think physicians would make out better by recommending reliable sites, then hoping people won't read it at all (if you can't beat 'em, join 'em)
TAM
The doctor patient relationship has to be based on trust.
Along the lines of what TAM said, if a patient discovers that a physician has withheld information from them, regardless of the reason, the patient is likely to interpret this as the doctor not being completely truthful or "lying" to them. Further, they may perceive it as a sign of disrespect or even an insult - that the physician doesn't trust them enough to use the information correctly or thinks they aren't "smart enough" to understand the information. Does wonders for that whole "relationship based on trust" thing, doesn't it?
So my position would be, that unless the patient requests otherwise, tell them the truth, the whole truth and nothing but the truth.
Personally, if I ever caught a doctor lying to me or deliberately withholding information, I would immediately terminate the relationship, and follow up with an ethics complaint to the state medical board.
One problem in calling out a doctor on a lie is the concept of plausible deniability. Do doctors lie, either through commission or omission of facts? Of course they do. Are they lying for the patients benefit, contractual arrangements, or for their own? ie:insurance authorizations, for personal profit, for patient and family comfort, due to contracts that contain gag clauses, or just as a time management strategy? The answer to this question is often more elusive.
For example: imagine that you are a patient attempting to resolve a pelvic pain complaint through a Catholic hospital system. Now, imagine that your doctor -- who may or may not be Catholic -- has signed an employment contract that requires all medical recommendations to follow precepts of the Catholic faith. The standard of care in this case may be a trial of oral contraceptives as a pain management strategy. However, since there is no proven pathology, the Catholic church would not condone oral contraception. The doctor, against prevailing medical guidelines, recommends laparoscopic surgery rather than the safer trial run of oral contraceptives because surgical treatment is the only way to definitively diagnose the pathology and then apply contraceptive as treatment for definitive pathology -- rather than birth control -- as is specified in the contract with the Catholic healthcare institution. Would the average patient know that the doctor is not following the standard of care, but instead, is acting on the basis of a signed contract with the hospital system?
I contend that most doctors lie because of hidden conflicts of interest and that most patients would not ever be the wiser about such omissions. Personally, I think that these types of contracts should be illegal, especially in non-profit institutions that provide care for low income medicare and medicaid patients -- as these are the patients most likely to be unaware of such violations of standards of community care, and therefore, placed in much higher physical jeopardy than necessary to acquire the care that they need.
With hidden contracts like these, it's hard for patients to trust that their doctors are adequately managing their conflicts of interest and putting patients needs first.
Anonymous, no hospital Catholic or other can effect a contract which limits a physician's ability to prescribe accepted standards of care. I have been a physician for years in a Catholic hospital and never was required to enter into any such contract. There is a difference between advising a therapy and that advice being carried out by the hospital. It is the duty of the hospital to make clear its policies to the patients and it is the duty of the physician practicing in the hospital to also inform the patient about that policy and to advise the patient regarding alternate approaches to follow the doctor's own professional advice. For example, to refer the patient to another hospital for that elective tubal ligation which was rejected by the Catholic hospital. ..Maurice.
I wish that hospitals and doctors were as transparent in their policies in regard to women's healthcare issues and "ethical" standards as you suggest. In my area, the Catholic hospital system is buying up primary care practices throughout the region. Instead of making most of their revenue on the reputation of certain "rockstar" surgeons, the hospital system now uses primary care doctors to make money for the institution by referring only within the hospital owned network.
Primary care doctors are the new rainmakers in our healthcare system. If a primary care doctor refers, say, a high risk obstetric patient to the Catholic hospital owned obstetrics unit, the high risk patient in our region does not receive the community standard of earlier prenatal care, starting with scheduled appointments and commencing with scheduled ultrasounds because early prenatal testing in high risk situations is information that informed parents might use to "return to sender".
If a patient is interested in an elective tubal ligation after a cesarean section and had used the hospital owned obstetrics unit, this care would not be provided. The patient would be referred to another facility. I believe that a referral to an different provider and hospital would be dangerous to health because it would require a second surgery and all the associated risks, all because the hospital and doctors are following a conscience clause. It's kind of like a Jehovah Witness surgeon refusing to provide a blood transfusion to a knee replacement patient. If the patient is not Jehovah's Witness and does not view blood transfusions as a sin, then the conscience clause is an unreasonable and potentially life threatening policy that is not in the patient's best interest. Is it fair to force a knee replacement patient into a different institution, or to see a different doctor, because of a conscience clause? I don't think so. I think that these kinds and types of policies damage the doctor/patient relationship because patients cannot trust that their doctors are a neutral party advocating for their patient's best interests. I can attest that I have never received a disclosure from a doctor that they are following a religious based institutional policy.
I'm an American. I believe in freedom of religion. I also believe in freedom from religion. I don't believe that a Jehovah witness should be required to have a blood transfusion if it is against their personal beliefs, even if the Catholic ethics committee finds it "ethical" to overrule the Jehovah witness' beliefs. I don't believe that a Catholic should be forced to comply with a Jewish dietary restriction because a Jewish doctor believes that eating bacon, for example, is an ethical violation. Likewise, I don't think that Mormon or Seventh Day Adventist or Muslim patient should be directed to "comply" with a secular dentist's recommendation to use a particular brand of mouthwash containing alcohol. To me, conscience clauses are just one more political tool used as a power play to deny basic human freedoms through often covert means.
What does this thread have to do with prescribing placebos? I think the broader issue should be a question of motives. Is the doctor's decision contractually motivated,financially motivated, religiously motivated or is it truly in the patient's best interest? The problem with judgment calls is that the patient is often left out of the equation through lack of informed consent. This puts the doctors needs over the patient that he/she is serving. In my opinion, conflicts of interest in the doctor are often a betrayal of the human rights and basic human dignity of patients. To fix the doctor/patient relationship, these issues need to be resolved, especially at non-profit medicare/medicaid facilities.
* see 2012 NYT article "Growth of Catholic Hospitals May limit Access to Reproductive Care" for more information.
Though Anonymous has covered a lot of ground with regard to physician and hospital self-interest and the need for informed consent and the question of the relation of this thread with "prescribing placebos", I want to clarify what this thread is about. First, it has nothing to do with prescribing placebos which are pharmaceutically inert compounds but appear to have some psychologic therapeutic benefit. The thread has to do with nocebo effect which is a patient's negative behavioral reaction to a potentially effective drug or procedure simply because "too much" very rare harmful effects has been included in the side-effect detailing for the patient's informed consent. That is, some treatment which is of statistically great benefit will be turned down by the patient because of concern of harm or if such a therapy is taken the some "bad" effects will appear simply as a result of the patient's concerns and not because of the therapy itself.
The issue is whether every drop of a rare occurrence should be detailed to the patient by healthcare providers in order to meet the criteria of "informed consent" or should the nocebo effect be considered and those exceedingly rare events be not disclosed to the patient so as to promote an opportunity for a cure rather than rejection of that opportunity because of the patient's unreasonable fear of an event which has been demonstrated to be statistically unlikely. ..Maurice.
OK, Dr. Bernstein,
My answer to the original question is that it depends.
Is the patient asking for full disclosure? If so, the Kantian ethic of veracity should apply. If the patient actively expresses no immediate interest, then I think the doctor should work on a scale of probability. If a well-known side effect is likely, then the patient needs to be informed because that side effect is necessary for truly informed consent. If the doctor, and clinical studies, deems a particular side effect to be remote, and unlikely to concern the patient, then I think it is reasonable to omit that information unless and until the patient complains, or asks. If the issue is one that could implicate the doctor in a malpractice case after the fact, the doctor still needs to disclose, and then let a jury decide.
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