Your difficult patient doesn’t want to be difficult.
We've all been there. A click into a patient's charts and we’re flooded with detailed accounts of how "difficult" they are. Maybe they've insisted on unnecessary investigations, never follow your advice or prescriptions, or have even filed a complaint against you.
You let out a deep-bellied groan: “Ugh, they’re the only thing between me and my lunch break”. I'm here to argue that these are often the patients that need us most, and that it is our responsibility to 'de-difficult-lize' them. (Yes, I just made up a word)
Meet Joan. You'll meet her the way I did, before I even laid eyes on her.
A click on the consultation note from her previous visit, and we are greeted with capitalized warnings: EXPLAINED NO FURTHER INDICATION FOR DUPLEX USGS. INSISTS ON REPEATED INVESTIGATIONS.
I let out a sigh and called Joan into the consultation room. She was a petite elderly lady who hardly looked like she could harm a fly, let alone "INSIST ON REPEATED INVESTIGATIONS".
"Hi Joan" I greeted, "We're here to follow up on your leg swelling. How has it been since the last time we saw you?" I asked, pulling up the duplex ultrasound report.
I was ready to segue into a decisive monologue explaining that everything was normal and that no further investigations were needed. But before I could start, Joan defiantly put her index finger up and, pointing to some small dots of bruising and mild swelling on her leg, said "it hasn't gone any better".
"We did an ultrasound for you last time, why don't I go through the results with you?" I asked. Without skipping a beat, I told her that the report was completely normal. "Our investigations revealed nothing wrong with your veins".
She was barely listening, scrolling on her phone. I felt a hint of annoyance bubble inside me. Suddenly, she shoved her phone under my nose, covering the report I was explaining.
"Something is wrong with my leg." She insisted, pointing to photographs of small red dots on her skin. "You have to check them again. Did you check my valves?"
In that instant, I felt a wave of embarrassment. She had never understood the purpose of our investigations. All this time I was explaining the results of her duplex scan, she had no idea that they were meant to check the patency of her leg's venous valves!
I took a deep breath and decided to start over.
I validated her concerns and explained the most likely causes of her leg swelling: varicose veins, lymphatic blockage, and her underlying rheumatological condition.
I explained that with the repeatedly negative duplex scans, varicose veins were unlikely to be the culprit. I then offered to arrange lymphatic imaging and to write a referral letter to a rheumatologist so we could investigate for other possible causes.
I spent more time with her than I do with most patients. But she left no longer a "difficult" patient, willing to follow the recommendations we had agreed upon together.
I find that most "difficult" encounters are driven by some combination of the following:
(1) Lack of education
(2) Lack of trust
(3) Lack of access
Joan's was likely a combination of (1) and (2). A lack of understanding of the differential diagnoses and the respective investigations, coupled with a belief that she must advocate for her own care (often a strategy learned from prior dismissals and unresolved concerns) led her to "INSIST" and be 'difficult'.
I actually believe that patients advocating for their health and their care is important and should be encouraged.
In Hong Kong, efficiency demands, high patient volume, and entrenched hierarchies within our public healthcare system are significant barriers to shared decision making. Our practice often leans toward paternalistic models, where most medical decisions are made by doctors with little patient involvement.
So when we do encounter a patient who diverges from the obedient majority, we become flustered and label them difficult.
What if shifting away from paternalistic decision making toward shared decision making is not only a more ethical way of practising medicine, but also leads to better health outcomes?
Patients who understand their condition and their options are more confident in the decisions made and are more likely to stick to the treatment plan.
Conversely, poor shared decision making is associated with worse medication adherence and higher emergency department utilisation (a possible marker for poorer health management, with significant socioeconomical consequences). 1
Listening when our patients try to advocate for themselves may be an "inconvenience", but it is a necessary part of safe, efficient, and ethical care.
References:
- Hughes, T. M., Merath, K., Chen, Q., Sun, S., Palmer, E., Idrees, J. J., Okunrintemi, V., Squires, M., Beal, E. W., & Pawlik, T. M. (2018). Association of shared decision-making on patient-reported health outcomes and healthcare utilization. American journal of surgery, 216(1), 7–12. https://doi.org/10.1016/j.amjsurg.2018.01.011
