Still, you take the medication as prescribed. At first
you imagine your body may adjust or the pills
will come to understand you. It is no use.
From Virginia Chase Sutton: Lithium and the Absence of Desire.
Patient engagement is one of the mantras of current healthcare improvement efforts. Medical students and junior doctors likely think they are doing it better than their elders ever did. They are after all taught communication skills, where an earlier generation wasn’t. In fact, they are taught that they are being taught communication skills. They are taught how to communicate bad news. They are not taught how to hear awkward or bad news.
The younger generation are almost certainly worse than former generations of doctors at listening for or actually hearing “the treatment you put me on doctor has made me worse”.
There are two ways in which doctors have a problem when it comes to adverse events (side effects). One is that it is now clear that ever better communications skills, in the sense of friendliness and superficial approachability, will increase the likelihood of trapping patients in a Stockholm syndrome so that they are unable to report adverse events to their doctor.
Doctors, caught in their own Stockholm syndrome, and faced with an industry that is friendlier than and understands them better than ever before, are themselves ever less likely to report adverse events to companies and their unwillingness to report makes it ever harder for them the pick up on hints their patients may offer. There are no training modules within medicine that teach medical students or junior doctors about Stockholm syndrome. There are no courses showing medical students or junior doctors how industry markets to them by encouraging them to stick to the practice of evidence based medicine.
Against this background, treatment related adverse events have become the fourth or perhaps the third depending on the study you go by or even the leading cause of death if we extrapolate from hospital settings to what might be happening in community settings.
The situation has echoes of the joke about the Black Man thrown out of a Church in the American South in the 1960s. Sitting in the dust he asks God how many hundred years will it take till he and his kin gain entrance. A voice from Heaven says My son, I’ve been trying to get in there for 2000 years.
This is where the rubber hits the road when it comes to engagement. Part of the problem is doctors are inured to the legal, financial and political implications of what they do. We make a virtue of being value neutral when it comes to treating men injured in combat or women with an incomplete abortion. But now when Churches are scared of pharma (see Fn 1), there is a greater need than ever for the kind of moral courage it once took to stand up to governments and treat enemy combatants or to stand up to churches and treat women, we seem to have lost that kind of courage.
Aside from the loss of courage, we miss how political the simple things we do can be and how our position overwhelms basic humanity.
Take Sylvia for instance who has just been put on doxycycline and become suicidal. She has a real dilemma. Let’s say she works in the mental health field. Does she report this problem to her doctor? The first problem is even if she does work in the system, for her like others entering his consulting room, she is rather like a mouse confronting a cat. He may smile and swish his tail, but still…
It’s like a prisoner confronting a warden. Caught in the zeitgeist, warders like junior doctors are no doubt trained in communication skills these days. They may chat about football results but all the power is on one side. If Sylvia goes to her doctor and he enters into her medical notes that she has been suicidal, this might compromise her future employment prospects. If she wants to work with children in the future, her medical records will be scrutinized and if this comes to light her job prospects may be gone – perhaps without her ever knowing why.
If she tries to engage her doctor on the possibility that this is an adverse event, we find out what patient engagement really means. She is the person who has been through the experience. She may be pretty confident in her judgement. The problem came on after she started the drug and cleared once it stopped.
But he has never seen this before – or perhaps seen but never noticed it before, or had it mentioned to him but never registered it before. And he has 12 years of medical training and many more years of practice. He may look at the datasheet on doxycycline, perhaps even check out some internet sources. He will not find anyone saying doxycycline causes suicide – unless he stumbles onto the RxISK site.
This is a moment of great drama. Sylvia will feel every minute of it, but her doctor will likely not be aware of anything. Unless he enters into the medical record, a clear statement that this might be an adverse event, Sylvia is at risk of legal, financial, insurance and other consequences of an entry that designates her as suicidal – i.e. she has a medical condition- rather than as the victim of a treatment related event.
He will be scared to take her side. He may not think he’s scared. This is the lack of fear that walks on by because others have looked at the issue and if drug companies, regulators and other doctors have not found that doxycycline causes suicide who am I to engage with this unclean woman. Unclean –anything as strange as suicidality will make someone as unclean as any Samaritan woman might have once seemed.
The first message is this. Any Sylvia or Sylvain bringing an adverse event to their doctor should do so in the form of a RxISK report. You should hand in the RxISK report first before trying to talk about it. If you talk first and your doctor dismisses you, it will then be difficult to bring the RxISK report up.
But presenting a RxISK report and perhaps indicating this has been sent to the regulator – FDA, HealthCanada, MHRA, EMA, TGA, CARM – puts the interaction on an entirely different footing. Your doctor is now faced with the fact that there is a record of a possible adverse event and if he pays no heed to it and things go wrong he is in a less secure position than he would be in if he records that you became suicidal rather than you had an adverse event.
The more standing up for yourself like this feels like violence or disruptive, the more you are getting to grips with the violence that the system is doing to you. The more awkward it feels, the more you are testing whether lip service to patient engagement is just another way to trick patients into doing as they are told – unless of course your doctor proposes engagement.
If he doesn’t propose, how it works out in practice is that smiling sweetly he will double Sylvia’s dose or recommend something else. Smiling equally sweetly, she will say “of course”, will leave and will not take it.
Patient non-compliance is the drapetomania of the 21st century (Fn 2).
We have a Dream that one day people will rise up and live out the true meaning of this creed: “we hold these truths to be self-evident: that all men are created equal”.
Does our relationship with our doctor amount to anything? Is it worth fighting for? If worth fighting for, getting a RxISK report on the record offers a Rosa Parks refusal to give up our seat on the bus moment. Everyone who takes a report to a doctor can help establish whether the affable person they are dealing with is in fact able to engage with them. If a doctor is unwilling to accept a RxISK report and put it on their record, your life may not be safe in their hands.
It would be fatal to overlook the urgency of the moment. RxISK repeatedly gets asked whether we know a doctor who lives in someone’s area who takes treatment induced problems seriously. Getting doctors to accept and complete RxISK reports would help all of us generate a HeatMap showing where the eligible doctors are. If we can seize the moment, the others will die out.