The Downside of Understanding
As I look back over my 10 year career in obstetrics and gynecology, I am sometimes struck at how many things have been discovered in this time period. When I started the origin of pre-eclampsia was unknown, and now we know that it likely originates in an overabundance of a molecule called Soluble FMS-Like Tyrosine Kinase, a competitive inhibitor to natural angiogenesis in the placenta. Ten years ago the origins of cervical dysplasia were still being developed, and now we know that the majority if not the entirety of cervical dysplasia and cancer is due to an infection of Human Papillomavirus, and for all intents and purposes cervical cancer is actually a sexually transmitted disease. We have developed this idea even further, allowing us to use HPV virus detection as part of a screening program for cervical dysplasia and cancer, and even to immunize for HPV infection in young women yet to be exposed.
All of these things amaze me. But to be honest, they also make the practice of obstetrics and gynecology more difficult. We have advanced our understanding to level that is impossible to explain to patients who lack a strong background in science, forcing us to accept simplistic explanations over explanations of how it really works. Let’s use HPV as an example.
When I started my residency, explaining an abnormal pap smear to a patient was fairly simple, and that explanation could be understood by just about every patient.
“Your pap smear indicates that you have some cells on your cervix that are at risk for becoming cervical cancer. These might get better on their own, or they may get worse. We need to look closer at the cervix and take some biopsies so that we know how far along in this change these cells are, and to know if we need to do anything further. If the cells are far enough along the path to becoming cancer, we can remove them so that you don’t get cancer.”
Patients understand this. Its fairly basic, and makes some sense. It can even be illustrated fairly easily on the back of a piece of paper, drawing a prototypical normal cell, a cancer cell, and several cells in between. You just draw them, point to one of the cells in between a normal and cancer cell, and say that they likely have some cells like this and they need to be observed or treated. When patient would ask why their cells get like this, we just shrugged and said “It just happens sometimes… we don’t know why.” Patients accepted that, and we went on with whatever needed to be done.
But now we know more, and it has become much more complicated.
We can still explain what a dysplastic cell is, but now when patients ask why its much harder to explain.
ME – “Well, your cells are like this because you contracted a virus called Human Papilloma Virus, which you got from a sexual partner”
Patient – “WHAT??!?! I have a sexually transmitted disease?”
ME – “Technically, yes, but not really. HPV is extremely common. The only way to reliably avoid it is to never have sex, which nobody does, so really you can’t avoid getting it. So its not really an STD like that.”
In most cases this leads to a divergence in the force, completely depending on who the patient is. If the patient has taken some college biology, we might be able to continue with a fairly in depth discussion, leading to some understanding of how HPV could technically be an STD but not really like Gonorrhea of Chlamydia, and how one can’t really blame their partner for giving them HPV.
But unfortunately, many patients don’t have the technical background to follow you down that line of explanation. Many are stuck on “virus”, not really knowing what that is in any specific sense, and how that might differ from a bacterial infection that one gets from sex with an infected partner. It also now becomes extremely difficult to provide an adequate explanation why HPV infection does not really imply any infidelity in the relationship, as understanding that would require an understanding of how viruses differ from bacteria, and how viruses can be around for years without causing any problems.
Patient – “But how do I get rid of it?”
Me – “Well, if you stop being exposed to it your body will likely clear it over time, like it clears other viruses.”
More potential areas of misunderstanding. Patients with minimal science background don’t understand the idea of a virus being killed off over time, especially when they know that a Herpesvirus doesn’t ever go away.
Patient – “So if I leave my partner it will go away?” – a logical idea, but not really a good idea. The truth is that when patient has normal paps for years and then suddenly starts having abnormals, there is almost always a new partner in the mix. They have a new strain of HPV. But getting into this with patients usually leads nowhere good, and even suggesting that a change of partners might resolve recurrent abnormal pap smears, while possibly true, can be very damaging to a healthy relationship.
Me – “If you like your partner, this is no reason to change that. HPV is so common that making relationship decisions based on who you got it from is not the right thing to do. Unless you decide to never have sex again, you will always be at risk to be exposed to HPV, and there is really nothing you can do to change that. Ten years ago we didn’t even know that HPV existed, and we would just be talking about an abnormal pap smear, and not about a sexually transmitted disease”
Patient “Its a sexually transmitted disease?!!?!!”
ME – “(grrr…) yes… but not really like other STDs!”
Patient “Can’t I get that Gardasil injection and fix it?”
ME – “You can get it, but it only protects you from a virus you haven’t been exposed to. Your tests indicate you are already carry the HPV virus, so it won’t have as much benefit for you.”
Patient – “So if you treat the bad cells, it will be gone?”
ME – “Not really. The cells will be gone but the virus will still be there.”
Patient – “Then what good is it to treat it?”
ME – “AAAGGH!”
At times like this, it makes me think that sometimes all this knowledge really hurts us sometimes. It feels wrong to revert to a totally simplistic (and actually ignorant) understanding of cervical dysplasia, but many patients lack the scientific background to understand an explanation of what is really going on. I love to explain the underlying disease to a patient and help them to decide how they want to go about treating it, but the complexity of our understanding forces me to be the paternalistic doctor that I hate.
Patient – “How did I get this abnormal pap smear”
ME – “I could try to explain it to you if you like, but its really complicated, and probably easier to just think of it as cells on their way to becoming cancer and leaving it a that. We just need to treat this so you don’t get cancer.”
Patient – “OK”.
And they’re actually satisfied. But I’m not.