Half of U.S. patients don’t take their medicines as prescribed by their physicians.(1,2)
We use to call such patients “non-compliant.” As “patient-centered care” became the mantra for contemporary medicine that “passive, judgmental” term of “non-compliant” was banished and replaced by “non-adherent”, a presumably less derogatory term implying a partnership of patient and physician. (3)
A cardiologist, struck by the number of her patients that did not comply with adhere to their heart medicine prescriptions, asked 20 of them who had survived a heart attack why they didn’t adhere to medications that had proven benefits of secondary prevention of a next event, an event that could cause death. (4) Their comments (listed first below) were surprisingly similar to feelings expressed to me by parents who decline immunizations for their children (typed in bold italics ).
1. Risk Aversion
“Why take medicine that could wreak havoc on your body.”
In people with negative emotional reactions even a small risk of side-effects seemed to overpower any positive feeling about the proven benefits of a drug. Their perception of risk is greater than their perception of benefit. They are “far more sensitive to possibility than to probability”.(5)
Despite numerous studies showing that there is no probability of an association between measles vaccination and childhood autism some parents still feel that there is always the possibility. Arguing relative probabilities of vaccine side effects versus disease effects with them is not productive.
2.Naturalism
“Medications are chemicals and should not be in your body on a regular basis”.
Vitamins, herbs, and other health supplements of all kinds are often turned to because they are not “chemicals”.
“I don’t want to have any foreign proteins injected into my child”. Natural immunity, of course, depends on our body recognizing and reacting to foreign proteins so that symptoms resolve and our next exposure to the same foreign protein doesn’t make us sick again. “It is the additive proteins that we don’t want” is often the next statement from the parents. Pointing out that there are 315 “foreign proteins” in today’s vaccines rather than the thousand’s in the vaccines before the 90’s does not reassure them.
3.Denial
“Men don’t like taking medicine because to do so they are admitting that they are not strong. Most people like to think that they are strong and mighty. …Their very sense of well-being after surviving a heart attack and quickly resuming healthy lives may convince them that medications are not necessary.”
Some parents feel that their unimmunized children are safe from disease because the rest of the children are immunized, the “herd immunity protection” argument. Pointing out that herd immunity is effective only when the community reaches the currently unachievable high percentage of immunity (a 94% threshold in measles and whopping cough) has no effect. You would think that the possibility of measles in their unimmunized child in a partially immunized community would override the small probability of side effects from the vaccine. It doesn’t with some parents.
4. Avoidance of Sick Identity
“Has having a heart attack become too easy?” People can spend more time being sick from flu than having a therapeutic cardiac cath within 90 minutes of arriving at the ER and walking out of the hospital 24 hours later.
Has the absence of children dying or being crippled by measles, polio, diphtheria, or croup dulled our ability to imagine our children in such a sick state? Sporadic epidemics of whooping-cough and croup in certain states have been successful in raising immunization rates a bit. If there were an Ebola vaccine, I wonder how the vaccination non- adherent parents would have juggled that possibility/probability calculation for their children.
5. Difficulty Visualizing Benefits
“The benefits of cardiac medications may be imperceptible and the absence of perceived benefit is a well-documented reason for non-adherence”. Adherence to anti-platelet medications (“blood thinners”) is higher than other cardiac meds perhaps because the patient can easily visualize the “thinned” blood flowing smoothly through an unclogged pipe. That the medication is actually “doing something” is reaffirmed by the prolonged bleeding from a razor nick.
Maybe we pediatricians should develop an app and FitBit that could non-invasively measure antibody levels and send an alert to the child (via his/her own smart phone, of course): “Your antibodies against [insert tetanus, diphtheria, or whatever disease name here] have been declining for years and are now at a level that no longer protects you. Go immediately to your nearest [insert sponsoring drug/ convenience/department store name here] and get vaccinated.”
6. Avoiding Dependency
“Relying on cardiac medications is another form of addiction. I brought on this heart attack by my life style and it is my responsibility to avoid another by changing my life style.” Taking medications may be viewed as a loss of control, as “following orders” , as “being told what to do”.
This rejection of authority rings true in my experience with some parents who decline immunization for their children. It also may explain why pockets of unimmunized children who are not in poor families are sometimes clustered within tree-hugging, organic food eating, aging-hippy communities. Frustrating as this rejection of authority is to the physician, repeatedly battering the head and shoulders of these parents with all the scientific facts proving that vaccinating their child is safer than having them contract the disease is counter-productive.
The discussion with parents who decline immunizations for their children is hardly ever a rational one. Some beliefs and feelings seem impervious to facts. Certainly a parent’s personal knowledge of some child, usually a cousin or a nephew/niece, who had a vaccination and then had a seizure or who “has never been the same since” is a real conversation stopper. That personal experience can generate such deep feelings that I no longer even try to talk them out of that hole. We don’t experience that same depth of feelings if an older adult we know survives a heart attack only to die of a second one months or years later. We often feel, not knowing all the details, that “C’est la vie”.
References:
1. NEJM 2005;353:487-97 Adherence to Medication
2. J Gen Intern Med 2008;23:115-21 Secondary Prevention After MI
3. Ann Pharmacotherapy 2004;38:161-2 Adherence or Compliance?
4. NEJM 2014;372;2:184-7 Beyond Belief
5. Psych Bull 2001;127:267-86 Risk as Feelings
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Good post. My initial reaction is to blame patients themselves for not taking medications. But, getting medications is not without barriers. The pharmacy is not usually in the doctor office, insurance has restrictions, the pharmacy has lines and restrictions, it’s hard to figure out why the doctor prescribed such an expensive medication instead of a generic, doctor appointments and the expiration of a prescription don’t coincide — resulting on a phone call with a long hold on the phone, and heaven forbid you want to go on vacation when a medication is due to expire. With all those barriers I don’t feel very strong either when I face getting a prescription.
On a more positive note, there is a service that sends patients medications every month in a 30 day bubble pack (just like nurses use at care centers). For the medication challenged, non-adherent, patient it is a big help.