Activated patient, nurse, with engaged doctors. Can’t reliably manage meds?!

By March 25, 2018 Caregiver, Clinician, ePatient

My medication lists don’t match and none of them reflect what I actually take. I have received doctor visit print-outs and seen on-line summaries in five doctor offices and two infusion centers in the past year. Each place does some sort of reconciliation at each visit. In one, a medical technician asks me what I’m taking while looking at the screen, making changes. I say I don’t take that anymore. That one’s as needed, but I haven’t taken it since my last relapse. That was stopped years ago and taken off twice before, etc. The doctor reviews the resulting list.  When I check the portal after the visit, some changes aren’t reflected. Other offices print out a list and ask me to write changes and return the list.   The lists don’t reflect the changes I made last time. No surprise – the portals don’t reflect any of the changes. Another asks me while looking at the EHR, this compounded medication isn’t on our list, we’ll leave the non-compounded version (a doctor in their system prescribed the change and directed me to a pharmacy to have it filled). One doesn’t allow my twice-a-year infusion to be listed as such (only allows the number of times a day). I have a moderately simple medication regime taking 4-5 prescribed pills and salves, twice-a-year infusions, plus 3-4 over the counter medications with three as-needed (PRN) meds. I use two local pharmacies, a mail-order pharmacy, and a compounding pharmacy, depending on which has the lowest out-of-pocket cost. I’ve never had an inpatient hospitalization.

How can this be so difficult?

The New York Times had an Op-ed piece by Theresa Brown, a hospice nurse, Many drugs and many doctors lead to many mistakes.

My colleague, Zak Fallows, wrote this:

There are several problems with keeping one authoritative list of prescriptions:

  1. Prescriptions that the doctor writes but that never get filled, for instance because insurance wouldn’t cover it (extremely common) or because it was out of stock (increasingly common in the US and rather distressing, the pharma supply chain for low-profit-margin generics is broken and we are not allowed to import them to fill shortages, even if we see them a thousand miles in advance as the warehouses slowly empty out). Or because the patient just didn’t fill it, perhaps because they didn’t have enough money (also common) or because it was an e-fax sent to a pharmacy that the patient hasn’t used in 3 years and they didn’t know it existed. Should these show up in the list? Or should they get added when filled and picked up?
  2. Medications get stopped without necessarily being documented, and many doctors are used to stopping medications in this way. Many physicians feel that a sufficient way to stop medication X for patient Y is to say “You should stop taking medication X now, and you should tell your PCP that this is why, or I am sending your PCP a secure email, or similar.” If patient Y seems competent enough to understand this instruction, then this is a reasonable and common way to stop a medication. The patient was notified. The original prescriber was notified. But when did it go into the authoritative medication list? That can’t even happen at the pharmacy, like the one above.
  3. Patients are handed lists of medications to check “taking”, “not taking”, or “needs refill” when they arrive, but for many patients these lists are huge and they just don’t read them. Or they check “taking” on the wrong dose of Lipitor, but the right dose of Lipitor was farther down on the sheet, or on the next page, and they checked “not taking” for it. They take five pills, they checked “taking” five times, and therefore all the remaining checkboxes are “not taking”.
  4. When doctors enter a new prescription in an EHR, it pops up a huge number of potential interaction warnings and the doctors just get accustomed to dismissing every single warning because they are false positives 99% of the time. The EHRs cry wolf very, very badly. The doctors click “dismiss” so fast, they may think, “wait, did that say something unusual? I thought that was the QT prolongation warning, which is idiotic, but I think it said something about CYP2D6? Am I giving this patient a CYP2D6 inhibitor? Can I bring it back? No? Oh well, it was the QT warning.” I have seen my dermatologist get a warning popup about C. diff that might be caused by my topical clindamycin, which is idiotic. I put it on my face, I don’t swallow it.
  5. The potential privacy concerns are very large, especially now that life insurance companies are denying people coverage for taking HIV pre-exposure prophylaxis (PrEP) and SSRI antidepressants.

I’m an activated patient and a nurse, with clinicians that work hard at partnering with me. It’s interesting to me that I can’t directly manage my med list in any of my four EHR’s. If it was a google doc, I could suggest changes that the clinician could accept or reject. It’s not a technology problem. If I controlled access to my data I could work with my doctors and their staff to reconcile across all the systems.  If I had one standard health record with one medication list that tracked the life cycle of the order, dispensing, taking, and refilling, my clinician and I could keep this straight. Just sayin’.

Photo by Jenelle Ball on Unsplash

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