It’s critical to make sure your electronic medical record (EMR) is accurate before surgery.  This is your list of medications and doses. Here’s our story of what could happen when the EMR is not up to date.

 

New York City— Monday rush hour in Manhattan. I trudge up the steep stairs from the subway platform to the street above, and the phone rings. I fish it from my bag as I reach the top step a bit breathless. The thick traffic on 7th Ave south takes over my senses as I answer the call. It’s my former husband’s psychiatrist. I hurry to the next corner and sit on the metal bus stop benches (Thank you, Mayor Bloomberg). It’s loud. I explain to the doctor the doses of Xanax and Seroquel George took while in the hospital and at home after surgery. It’s been six days in total. I have written it all in my journal. I turn to the page so I can relay the exact information. As I recount the dosages and the times per day, I can ***hear*** his eyebrows raise to his hairline. “Okay,” he says, “here’s what you do…”

Before surgery assurances led to a false sense of security

When George, my former husband, went into the hospital for his elective knee replacement surgery in September 2018, the surgical coordinator assured me that they knew his medications and the doses. “They are in his electronic medical record,” she exclaimed with conviction. He was taking extremely high doses of Xanax and Seroquel. These are potent medications that require careful titration when and if you wean off of them. A doctor can medically detox you from drugs like Xanax in a hospital setting. Otherwise, it could take years to wean off the quantities of Xanax George was taking. It was essential that the hospital knew the dosages and continued to give those during his stay. He took the Xanax multiple times per day. 

So, when George arrived home from the hospital with his trusty after-surgery home-care folder, I carefully read the list of medications, doses and times of day for each dose. He was taking Xanax dosed 3 or 4 times a day. Plus, he was taking several other medications for cholesterol and the like. We needed a very complex pillbox with four compartments for each day to keep it all straight.  

The home-care nurse assigned to our case by the hospital, I will call her Sally, helped me to load the pillbox. The aids we had hired to assist George would keep track of the medications and administer the opioid prescribed for the after-surgery pain. Sally would reload the pillbox as needed during her visits. 

After surgery care: How can he manage on his own?

George was very confused and foggy now, several days after his operation—beyond the norm. It was alarming. Sally and the physical therapist who visited his second day home were very concerned. In his confused state, I wondered aloud how in the world he could manage these medications plus the opioid prescribed for pain. Sally assured me that George could not handle any of this on his own.  

So, with Sally’s recommendation for more care, we hired home health aides to be with him 24-7. Fortunately, we had the means to provide this level of care. It was mind-boggling that we needed to. Something was not right. But what? I cursed the orthopedic surgeon for not helping George to think this through before the surgery.

Protip:  If you are taking multiple medications for a serious condition, e.g., neurological, psychiatric, cardiac, and need to have surgery unrelated to these conditions, be sure that your doctors are in communication BEFORE the surgery. Direct contact between healthcare providers BEFORE surgery will ensure the best outcome and proper coordination of your care. Make sure there are clear instructions about medication dosages in your electronic medical record (EMR).

Life is upside down after surgery

I fantasized openly about bringing the surgical coordinator into our home to manage this “hot mess.” This “technical term” I borrowed from Sally. She was a straight-talking seasoned veteran, and I loved her for her honesty, which she doled out from the very first time we spoke on the phone the night before her first visit.  

If the surgical coordinator and the surgeon could get a glimpse into our after-surgery lives, would they be more careful and thorough when scheduling surgeries in the future? Would they take more care to understand the consequences for patients who lived alone and had co-occurring conditions that required complex medication management? I think they would. If they only took the time to listen and learn instead of managing a checklist in their narrow view of the patient. George had a positive surgical outcome—the knee was excellent; the rest was a dangerous mess. It was a version of the old joke: “The operation was a great success, but I regret to inform you that the patient is dead.” Gallows humor was one way I got through a bitter reality.

Sally assured me, “He can’t manage any of this himself. He needs help.” George’s behavior convinced her of his addiction to these drugs, and she indicated her disagreement with the psychiatrist who had prescribed such high doses of these powerful and addictive drugs. (More on addiction and prescription medications in future posts).

Medication mismatch: ensure Electronic Medical Record (EMR) is accurate

In trying to sort out George’s medications, we searched the house and collected the various bottles. I read the prescription bottles and looked at the doses on the discharge sheets sent home from the hospital. They did not match. As I searched the house, I found multiple bottles with various amounts of Xanax and Seroquel. Stashes, I later learned a backup plan in case he ever ran out. This is the logic of the addicted, obsessed mind. (I collected all these bottles and dumped them in the trunk of my car for a later dramatic reveal during our visit to the psych that would take place a couple of weeks later.) I shook with impotent fury.  

Nothing to do now except to handle the crisis in front of us: To keep George safe while he recovered—safe from a fall and safely taking the medications he could not stop abruptly.

Protip:  With any medication, never stop abruptly. Always consult with your prescribing healthcare provider if you are going to change how you are taking medicine. Some drugs can be extremely dangerous to stop taking cold turkey. In all cases, be sure to talk to a healthcare provider about the safest way to stop. If you cannot reach your doctor, talk to your pharmacist.

Now, days after his surgery, standing in our kitchen perplexed and irritated, what to do: Follow the dosing sheet provided by the hospital? Or follow the prescribing information on the pill bottles? Sally reinforced the decision to follow the discharge sheets: “He’s been on these lower doses for almost a week, and his anxiety seems to be fine.” And after all, I reasoned these are the official discharge instructions from the hospital-based on George’s electronic medical record, which the surgical coordinator assured me was accurate.

Protip: The pharmacist is a crucial member of your healthcare team. If you are on multiple medications, be sure to have them filled at one pharmacy. This way, when it comes time for surgery, or if you are seeing a new doctor, your pharmacist can provide a detailed report of your medications and the correct dosages. You can ask the pharmacist for a medication assessment to ensure that you can safely take all of your medicines. If you see multiple healthcare providers and each is prescribing treatment, the pharmacist can assess the safety of the combination of drugs. Some drugs should not be taken together. The prescriber is not always fully aware of the interactions between drugs. Pharmacists always know.

Being your own health or patient advocate: a connected care plan

Fast forward to Monday morning rush hour on that Manhattan street corner. The cars are flying down the avenue, horns honking, construction machinery humming, a cell phone pressed to my ear as I recount the current doses to the psychiatrist who has called me back. He breathes hard: “Write this down.” He gives me the correct amounts of Xanax and Seroquel. He indicates the danger that George is in and to provide these doses ASAP.

I am rigid with disbelief. How could all of these massive miscommunications be happening? What would happen if I were not intervening? After all, we were estranged, separated, and living apart. What would happen if George were on his own? The healthcare system and doctors who had cared for him for years –the orthopedist, primary care, and the psychiatrist never once spoke to one another. And why should they? It’s NOT how the system works. 

Thanks to Sally’s intervention, we have home health aides with him. Also, she encouraged me to call George’s doctors. Now, I duck into a bank vestibule for quiet to continue my conversation with the psychiatrist. I scribble all of the instructions in my journal and read them back to the doctor to confirm the accuracy. We hang up, and I make my way one block west to my office to call the home health aide; I’ll call him Ricky. I explain to Ricky, an RN and the home-care agency owner that is helping us with 24-hour care for George, that we need to recalibrate the dosages of Xanax and Seroquel. The need is urgent. He understands. 

So many questions and very few answers

Perhaps George’s confusion is a consequence of the Xanax withdrawal? Or was George taking additional drugs from an undiscovered “stash”? Or was it something more nefarious and biologic like a neurologic disease; exacerbated by the drugs? All great questions and no answers forthcoming. Relieved that Ricky was there and taking care of updating the pillbox, I breathed a little more freely.

With the 24-hour care team to dole out the medicines in the right doses at the correct times, there was a sense of relief coupled with a nagging dread. 24/7 care is expensive; could we sustain it? Did George need this level of care indefinitely? If so, then the issues were much more severe than recovery from joint replacement surgery, however demanding and painful that would be. Why didn’t the doctors and other team members make sure that the medications were correct in the first place? Why is the psychiatrist prescribing so much Xanax in the first place?

Go to the source 

Doctors do not always know best when they don’t have the full picture. In our case, the psychiatrist prescribed powerful, addictive medications to a recovering addict; the orthopedic surgeon’s office relied upon patient-reported information to update George’s EMR and assumed they had the right doses. They took the patient at his word with no double-check in the system with either the dispensing pharmacy or the prescribing doctor. Hence, the hospital administered incorrect doses for days and sent him home with an incorrect medication plan in his discharge instructions. For over a week, he took the wrong amounts of medicine with real consequences.

Protip: When checking to make sure the list of medicines and doses in a loved one’s EMR is correct, be sure to ask the source. Ask: Did the information come from the dispensing pharmacy? The prescribing physician? Or the Patient? If the information came from the patient, ask for a double-check with either the dispensing pharmacy or the prescriber. These are fundamental questions. Never assume the doctor’s office is double-checking on their own.

The withdrawal from these drugs was potentially responsible for the confusion George was exhibiting. This unintentional withdrawal could have cost him his life if I hadn’t double-checked with his psychiatrist. Scary.  

What if he were 100% alone? The thought kept coming back. What can we do so this doesn’t happen to someone else? I was angry and curious. We were divorcing, but something inside a “nudge” kept me engaged as an advocate—reluctant and tenacious. How can you be both? I don’t know, but somehow I was.  

Specialists specialize: The consequences of disjointed care 

Given his confused state, if left to his own devices with this much Xanax, Seroquel, and pain-killers, the outcome would not be good. The short-term was under control. The future was a blur. I knew for sure that I could not trust the health care providers to think things through.  

There was no overall game plan—or comprehensive understanding that George was a complicated case. The orthopedist focused on the knee, the psychiatrist the anxiety; the PCP seemed not to be paying attention to anything. No one except for me seemed to think that more coordination among the disciplines needed to take place. There was no consideration for the fact that he lived alone, had no care, was on a scary amount of Xanax by anyone’s standards, was confused, muddled, and was recovering from joint replacement surgery.  (Read our blog on Before and After Surgery Care Plan)

Ask, ask again, and double-check  – a hard lesson learned

Weeks before, when I was advocating for George’s release to an inpatient physical rehabilitation center after his surgery, I asked the surgical coordinator if she knew the medications George was taking. She confidently said, of course, it’s all in his electronic medical record. I assumed that meant doctor-to-doctor communication to ensure accuracy. Unbeknownst to me, George had given the information—incorrectly.  Read AMA EMR updates here.

With 20-20 hindsight, the next action would be to confirm the information’s accuracy with the dispensing pharmacy or the prescribing healthcare provider. In George’s case, the “mistake” in the dosages had grave repercussions. We were lucky that it wasn’t worse.  

Protip: When taking multiple medications, one recommendation is to check with your local pharmacy regarding a pill packing service. The medicines are pre-packaged in individual packs with the date, day of the week, and time of day. The package lists each of the medications along with the dose. This labeling makes it very easy for the person taking a drug to follow and for the caregivers to understand if their loved one is taking the medications as directed. You do not have to go to a mail-order pharmacy to get a service like this. Check with your local pharmacy.

(Note to the Reader: After living through this crisis, we decided upon a local independent pharmacy that offered this service because we wanted to have a personal relationship with the pharmacist vs. a mail order or large chain. Pick what’s right for you and your family.)

For the short term, we had “control.” George was getting the right medicines in the right amounts at the right time and the pain medication for the after-surgery pain.  

So, I jotted down a few more lessons-learned in my journal, which read more like a case report than a record of my inner thoughts and feelings. At the behest of a dear friend, I booked a chair massage for later that evening. Cliches like one day at a time became words to live by.