Post 64: Medication Miscommunication, Misconception, Misunderstanding Madness
Dad: I feel dizzy when I take that blood pressure medicine.
Me: Did you tell your doctor? She can change the dose, frequency, or the medication itself.
Dad: No, I figured out what to do. The medicine is too strong to take every day. So I take the medicine every other day. Also, I save money because I refill the medicine less often.
Me: Dad, the medication doesn't work that way! It's a 24 hour medication, so you should be taking a tablet every day, perhaps at a lower dose.
Me: Yes, please talk to your doctor about this.
Dad: No, no, she's had a lot of education and training. I don't want to question and offend her.
I only offer this real life example because this conversation is similar to countless conversations I have had with patients during their palliative care visit with me (read Post 1: What Exactly Does a Palliative Care Specialist Do?):
"I know the label says take two times every day, but I think that's too much. I take a half tab every night, and I'm fine."
"The doctor said to take the insulin morning and night, and that's what it says in my prescriptions but I stopped that a while ago. My blood sugar felt like it was dropping in the morning, so I stopped taking the morning insulin. Now my morning blood sugars are okay but it's a little high in the 400s at night. That's why I still take the night time insulin."
Sometimes we decide on our own to alter how we take a particular medication at home, intending to let our doctors know at our next visits, however we forget. I would often overhear our medical assistants ask, "Has anything changed with your medications?" or "Are these medications you brought all the medicines you take?" and almost every time, the patient or family member would say, "Nothing has changed" or "Yes, those are all of the medicines I take."
During the patient visit, I would then go through the computer-generated clinic medication list, naming each medication one by one, and most of the time, the patient or family member would say, "Oh, you still have that on your list? I don't take that anymore" or "I forgot about that. Yeah, I still take it. I left that pill bottle at home because I leave it on the nightstand so I can take it first thing in the morning."
When I ask about each listed medication, dose, and frequency such as, "Do you take acetaminophen 500 mg four times daily AND tylenol #3 three times daily?," the patient or family member would then remember the changes they had made at home, "Oh, I forgot to tell you. I don't take tylenol any more. I take an ibuprofen 200 mg two tablets six times a day to keep the pain down." (Statements such as these would then generate opportunities to educate patients and family members about potential harm from - and alternatives to - their current medication regimen.)
I would also ask, "Any injections, nasal sprays, ointments, patches, eye drops, or over the counter medications?" to which the patient or family member would often say, "Oh, I forgot to bring the insulin in the fridge" or "Yes, I forgot to tell you I have a pain patch on. The pain specialist started me on it a month ago."
Sometimes we alter how we take a medication and never intend to inform our doctors of this change in our medication regimen. The more common reasons I have heard are "I don't want to bother the doctor. He's so busy."
"I don't want to take up his time. He's always rushing in and out of the room."
"I don't want to offend the doctor. I don't want her thinking that I think I know more than her."
"I don't want the doctor to think I'm a bad patient or get angry with me."
" I don't think the doctor is going to change anything."
"I don't want to make a big deal about the symptoms."
"I don't want more medications added. I take enough pills already."
" I don't want to have to spend more money on expensive medications."
"I don't want to be lectured that I have to take the medicine and that I have to deal with the side effects."
"I don't need to be judged. It's my body. I can take what I decide is best."
These are valid - and again, common - thoughts and feelings. However, not informing doctors of how you actually take or not take a particular medication can potentially result in harm to you in the future.
For example, a senior gentleman decided to resume taking "leftover from a couple years ago" anxiety medication at night but did not inform his PCP. He also chose not tell the ER doctor nor the hospitalist when he was later admitted to the hospital for a bad pneumonia. When he became worse, more and more confused, despite antibiotic treatment, his medical team struggled to determine why, running increasingly more lab tests and scans each day. At the time, they did not have the appropriate information to have placed him on at least a low dose of his anxiety medication to prevent withdrawal symptoms (read Post 62: "My Husband Returned from the Hospital Confused! Will He Get Better?" - 4 Considerations).
Potential harm, or at least ineffective medical care, could also occur outside the hospital. You may call your doctor's office and leave a message about high blood sugar readings or high blood pressures. The cross covering doctor - that is, the doctor on call - may recommend insulin or blood pressure medication adjustments based on the medication list they see in the latest note, which may not necessarily be what you are actually taking or not taking.
Of course, many patients have every intention of taking all medications as instructed on the computer-generated medication list that is handed to them at the doctor's office or at the hospital. However, the medication lists themselves may have inconsistencies. I have reviewed many outpatient clinic notes, and I have yet to see a patient's medication list in a PCP/cardiology/pulmonary/neurology/other specialist note match up with each other.
Reviewing their hospital discharge medication lists, patients have told me, for example,
"I've been taking this medicine for years, but it's not on the medication list. Should I stop it or continue it?"
"I haven't taken this medication on the list for almost a year. My nephrologist told me I should never take it. So...should I or not?"
"The hospital changed everything! It's easier just to take what I already have at home."
"I see the new medication on the list, but the pharmacy didn't receive an order. I guess the doctor changed his mind."
I know when we are at the doctor's office or in the ER, we have already been waiting to be seen (20 minutes? 1 hour?) by the initial medical assistant or technician who asks about our medications, and we anticipate even more waiting in the near future before being seen by the nurse and/or doctor. We want to move on to the next step, and eventually get answers/ get relief/ leave and go home! However, in this fragmented healthcare system, part of advocating for the best medical care possible is over-communicating, doing as much as possible to eliminate assumptions and inaccurate information on which your current and future medical care will be based.
If you receive a discharge medication list from the ER/hospital, consider reviewing each medication with the nurse who hands the list to you and asking for the doctor to make changes as needed in your electronic chart to decrease the amount of inaccurate information that is pulled in on future ER/hospital visits.
If doctors' offices are not taking the time to go through each medication on their clinic version of your medication list, consider speaking up and saying you want to make sure each medication on their list matches up with yours. You may be surprised by how often you add, remove, or amend medications, doses, and frequencies on that list.