The Medication Adherence Dance

My sister exhibits what clinicians call “poor medication adherence” – she often does not take medication as prescribed. She takes them early, late, not at all, too little, or too much. She takes seemingly random prescription medication to try to improve her headache. She doesn’t remember what medication she took, or when. She frequently suspects somebody changed her medication, or that it has been disappearing and reappearing, or that her dosage is off. The consequences of missing medication range from unpleasant (headaches, grogginess, scheduling emergency meetings with the psychiatrist to prescribe extra medicine) to catastrophic (aggressive psychotic episodes).

It’s challenging.

Today has been a case in point. I called my sister around 6:45pm, to check in. My sister answered with a groggy “Good morning.” When I told her it’s evening time, she was surprised. I guess she had been sleeping, woke up in the dark, and decided it’s been a full night’s sleep.

She had already taking the morning medication for the following day. This is half problematic. On the good side, it’s great that she’s taking the medication so readily, and better that she takes them somewhat off-schedule than that she forget or refuse to take them entirely. On the bad side, this means that she took medication 12 hours earlier than she was supposed to, so now she has a higher concentration than intended of the drugs in her (since it’s been 12 hours between doses, instead of 24) and will later have a lower concentration than intended (since it will be 36 hours between doses, instead of 24). And messing with strong medication can make you feel bad. And missing her morning dose of anti-anxiety medication can cause rebound anxiety, which is not a great way to start the day.

In terms of schedule, my sister has two kinds of medications: Daily (some in the morning, some in the evening) and as-needed. The daily medication includes anti-anxiety medication, anti-depressant medication, anti-psychotic medication, and a headache preventative. The as-needed medication is for her headaches, but also the same anti-anxiety medication she takes every morning (in case she feels or seems to be revving up).

How to Improve Medication Adherence?

I’ve been thinking about a couple of possibilities:

* Getting a medication reminder clock. I found something that looked good on Amazon, and will give it a try.
* Getting a medication dispenser that dispenses medication based on pre-defined timing. The automatic ones I found are very expensive. I need to do more research on this.
* Preventing my sister from having access to her daily medication pill bottles. This mean she would only has access to her weekly pill box (for her to take her morning/evening medication, which are pre-sorted into it with the supervision of her personal helper) and to her as-needed headache medication. I guess I could also leave some anti-anxiety medication, for times when she seems to be getting too worked up – but even as I wrote this, I am pretty sure that she will take them to try to solve headaches. Nevertheless, if there’s only a limited number of pills available to her, it can’t do much harm.

Limiting Access to Medication: An Ethical Dilemma?

This last idea makes the most sense to me, but raises a significant autonomy problem, as well as a paranoia problem. My sister is deeply suspicious about her medication, and one of her most frequent fears/grievances/complaints is that someone else has been messing with her medication. Like so much of my sister’s paranoid thinking, I think this has to do with her limited sense of autonomy, since she is aware of relying on others for nearly every aspect of her life, from grocery shopping to cooking to setting doctor appointments to arranging medication. Keeping her medication away from her and just delivering a portion of it weekly may be too disturbing for her, activating too many of her fears and taking away too much of her sense of autonomy.

I will have to discuss this with her and see if we can come up with a system that would be mutually acceptable. Right now, her disorganization with medication is creating significant discomfort, both for her and for me. When we talk about it, I hope I will have the wherewithal and the grace to approach the conversation positively. Something like celebrating achievements, expressing care, specifying problem that she cares about, suggesting course of action, explaining benefit.

* Celebrating: You’ve been doing a good job taking your medication. It seems like your mood is good and your stress is low.
* Expressing care: I’m concerned about your headaches.
* Specifying problem: The headaches may have to do with not following the medication regime regularly.
* Suggesting course of action: I suggest making sure the headache medication and the anti-anxiety is available to you, while only having access to the morning/evening medication bottles when sorting pills into the weekly pillbox.
* Explaining benefit: This will help you take the medication as prescribed, which will prevent sharp changes in medication in you, and help reduce headaches.

Sounds like a plan… let’s see how it goes.

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