Open-ended questions can help clinicians better understand the challenges faced by patients on complex medication regimens.
I recently rotated in an outpatient movement disorders clinic, seeing patients with Parkinson’s disease and related neurodegenerative conditions. Although medical advancements such as deep brain stimulation have improved the quality of life for some patients, the progressive nature of these diseases often demands strict adherence to complex medication regimens in order to maintain a baseline level of functionality.
Most of these patients have to take one or more pills at specific times each day to maximize the duration of “on” states (time when the medication improves tremor, rigidity, and gait) and minimize the duration of “off” states (time in between doses when these physical symptoms reemerge). Additionally, patients must balance the timing of the medication’s therapeutic effects with the inevitable and bothersome side effect of dyskinesias (uncontrolled and involuntary bodily movements), which can occur either when the medication reaches its maximum effect or when its effects begin to wear off in between doses. To further complicate the picture, patients with Parkinson’s disease often take other dopamine-modifying medications that complement or interact with carbidopa/levodopa.
Considering all this, neurologists who specialize in movement disorders help patients construct a personalized regimen of dopamine-modifying medications that aims to maximize benefits and minimize risks while being as easy to adhere to as possible. This is no small feat! It is extremely common for patients with Parkinson’s disease to take medications four or more times a day. The number and types of pills can easily multiply if these patients also have other medical problems requiring complex medication cocktails. This makes it vital for all physicians on a patient’s care team to be aware of their medication schedule in order to manage their medications collaboratively.
Medication reconciliation is an essential but often underappreciated or altogether neglected aspect of good patient care. Before deciding that a medication is not working for a patient and should be replaced, I have learned that clinicians should nonjudgmentally ask patients how, or if, they are taking their medications. There are many reasons patients may not take their medications as prescribed: side effects (sometimes temporary, if they stick with it), expenses, lack of information or guidance, lack of understanding, or the intolerable complexities of their regimens. If the mere sight of lengthy medication lists strikes fear in the hearts of medical students and even physicians, how much more we should empathize with and help our patients who possess these lists!
Some simple ways to support patients with their medication regimens include:
1. Notice when patients take ownership of their medications and commend them regularly for it.
I’m continually impressed and grateful whenever a patient brings to their appointment a typed or handwritten up-to-date list of all the medications they are taking, or can simply tell you this from memory. These lists can be exquisitely detailed; I’ve regularly seen patients include the generic and brand names, dosages, routes, timing, recent changes, side effects, and more! A statement as simple as the following can motivate patients to continue to monitor their medications closely: “Thank you for taking the time to record all of this. It’s very helpful for me, and shows that you are truly taking ownership of your health!”
2. Ask patients what questions or concerns they have.
Consciously or not, many aspire to be “good patients,” taking all their medications simply because their physician instructed them to do so. Usually, a basic understanding of the purpose of each medication is sufficient from the patient’s perspective. However, it’s important for clinicians to explain this.
Then, ask open-ended questions. Instead of asking, “Do you have any concerns about your medications?” the question “What concerns do you have about your medications?” does a better job at inviting patients to think and share. If patients don’t volunteer any questions or concerns, closed-ended follow-ups can assist in gauging understanding, such as: “Can you remind me why you are taking x, and whether it’s been helpful for you?”
2. Keep the door open for ongoing discussion.
Sometimes, I heard a patient tell their physician, “I don’t have any questions now, but I’m sure I’ll think of something once I step out the door.” If a medication is started, stopped, or changed during a short clinic visit, patients may not know what questions to ask at that time. Concerns tend to arise days or weeks later, and while most patients know that they can relay questions to their physicians electronically, reminding them that we’re happy to answer questions when they do arise is a very simple gesture to communicate openness, availability, and care.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.