Remember the game “Whisper Down the Lane?” Basically, the game would start with the person at the head of the line, who would think of a sentence, something like “Sally went to the store and bought strawberries, pork chops, and milk.” They would then whisper that sentence to the next person in line, who would whisper it to the next person, and so on. The person at the end of line would then be asked to recite the sentence as they had heard it. Usually, it would come out as something like, “Stan went sailing, got seasick, and fell asleep.” The point of the exercise was to show how words get garbled as more and more individuals are inserted between the first and last people in line.
Now in healthcare, we never want to be stuck playing “Whisper Down the Lane” with our patients. We want them to hear about their disease and options for treatment directly from us without anyone else getting in the way. But that’s not always possible. It may be due to technology barriers (who hasn’t been frustrated by a poor Internet connection during a recent telemedicine visit?), language barriers, or something else entirely. And those kinks in the communication chain can really have a detrimental impact on patient care.
I recently had a patient who drove home this lesson for me.
Hosana, a 44-year-old undocumented immigrant who first came to the United States in 2003, was waiting patiently with her daughter for a follow-up appointment at our practice when I met her for the first time 2 years ago. I knew that Hosana was often anxious at these visits because of her limited command of the English language (she is a native Spanish speaker). Her daughter, Lilliana, typically accompanied her to each appointment to help broker communication with our team.
Hosana had been a patient at our practice for approximately 3 years before I met her and, during that time, her psoriatic arthritis (PsA) slowly but surely continued to progress. Through her daughter, I learned that Hosana never felt she was able to properly communicate her level of pain and discomfort to her previous providers, but that she had simply grown accustomed to living in pain. Hosana didn’t seem to understand her disease very well and couldn’t quite grasp the purpose of the various medications she had been prescribed over the years. Hosana owned a very busy and successful housecleaning business, but she told me that she was having more and more difficulty keeping up with work due to the pain in her hands and wrists. In addition, her psoriasis had become quite itchy and bothersome. Hosana’s planned visit to Mexico to see her family was temporarily put on hold. At our initial visit, Hosana (through Lilliana) told me that her sulfasalazine had pretty much stopped working entirely. She had initially been given methotrexate by one of our team’s rheumatologists, but the co-pay was too high, and Hosana was forced to stretch the 30-day supply to 60 days. Not surprisingly, that blunted the impact of the medication on Hosana’s pain. I asked Hosana what other options she had been offered at that time, but she said she couldn’t specifically remember, only that it was a drug that “could cause cancer.”
“Through her daughter, I learned that Hosana never felt she was able to properly communicate her level of pain and discomfort to her previous providers, but that she had simply grown accustomed to living in pain.”
While I performed a comprehensive physical exam, I asked some more questions about Hosana’s current standard of living and day- to-day activities. Eventually, she began to cry, saying that she was in constant pain and needed something better than sulfasalazine. Knowing that Hosana had been easily confused during previous conversations with other providers, I carefully went through the various options we could offer her, and it appeared that both she and Lilliana understood what I was telling them. Their first response was not unexpected—Hosana feared taking biologics because of the risk of developing cancer. This is something we hear a lot, especially from minority populations, and it can be a difficult barrier to overcome no matter how tenuous the link between biologic therapies and cancer. I spent some time reviewing the various classes of biologic therapies we have in our arsenal to treat PsA, the way they work, and common/uncommon complications related to each class. I also noticed in Hosana’s notes that one of our staff rheumatologists had started a prior authorization for etanercept approximately a year ago but that it had never been completed. When I mentioned this her, Hosana and her daughter had a brief conversation in Spanish before her daughter told me that Hosana was now willing to give etanercept a try. A new prior authorization form was initiated, and etanercept was approved a week later.
I instructed Hosana to schedule a follow-up appointment in 3 months to gauge her response to the biologic. Due to COVID-19 considerations, the appointment was switched from an in-person to a telemedicine visit. Lilliana again joined us to help as an interpreter. After some initial pleasantries, I asked Hosana how the etanercept was working and if she noticed any difference in her level of joint pain. She told me that, after leaving the office following her initial visit, she had time to further consider the risks and benefits of biologic therapy and decided against taking the etanercept. This was despite its being delivered to her home. Hosana then told me how her pain was only getting more severe, she was still unable to work, and was starting to suffer financially. She showed me a picture of her hands, which revealed multiple swollen joints with synovitis. She also had psoriasis on her nails. What, she asked me, could I suggest that might help?
While our patients do change their minds from time to time, and sometimes don’t even tell us when they do, these are still conversations that make us all want to stomp our feet and let off some steam. I knew how much Hosana was suffering and that her options were limited if she truly wanted help with her pain. Clearly, she needed biologic therapy. I had done my best to overcome her hesitancy, but it was apparently not enough. Ultimately, providers have to realize that it is the patient’s decision whether they want to start, continue, or stop any therapeutic regimen. We can only offer our advice and support.
So after taking a couple of deep breaths, I asked Hosana if she would be willing to come back into the office so I could more carefully examine her joints and further discuss a plan of attack that might be agreeable to both of us. Hosana agreed.
When Hosana came in a week later, I was prepared. I had arranged for a translator to be there for the duration of the visit—my hope was that this would make for a more efficient visit and would take the burden off of Lilliana. As detailed earlier in this issue of Rheumatology Nurse Practice, using a professional translator is generally preferred to relying on a family member who may not understand medical terminology and may unwittingly be passing incorrect information back and forth. Indeed, I came to learn that Lilliana misunderstood her mother’s diagnosis as well as the mechanism by which etanercept works. It turns out that Lilliana didn’t understand English as well as I had thought, and while she did her best during Hosana’s visits, there was a major communication barrier. Lilliana said she didn’t want to admit that she didn’t understand some of the instructions I was providing because she thought that might force us to kick her mom out of our practice. She was incredibly grateful that we were able to provide a professional translator and further apologized for her role in her mother’s decision not to start the etanercept. After another lengthy discussion about the use of etanercept with our certified translator, Hosana and Lilliana both confirmed that they understood the treatment plan, the possible side effects and reactions she could potentially have to the injections, how to administer the injections, and what should prompt her to contact our office.
Hosana was back for her initial follow-up 3 months later. I made sure the same translator would be in the office with me (I wasn’t going to make that mistake again!). Hosana and Lilliana both arrived with a smile on their face and were effusively grateful for the improvements in Hosana’s pain and psoriasis. Her RAPID3 score was much improved, and Hosana had been able to resume her house cleaning business.
Hosana and Lilliana even told me that their recent experience in our practice had motivated them to learn English through a phone app, and I have noticed an improvement in their comprehension and fluency in the last 6 months. At our last visit, Hosana even told me how anxious she is to show off her language skills when she sees her family in Mexico later this year.
I’m glad that things have turned around for Hosana, but this case taught me an important educational lesson that I’m mindful of whenever I’m forced to overcome a communication issue with one of my patients. Never assume that what comes out of my mouth trickles down successfully to them when there are barriers in the way. There are steps we can fortunately take to overcome these barriers, but we must be proactive in our thinking and preparation to ensure we’re not stuck playing Whisper Down the Lane with our patients and crossing our fingers that our message gets across.
AUTHOR PROFILE: April Johnson, MSN, APRN, CNP works as a nurse practitioner in Oklahoma City, OK, and is a member at large on the Rheumatology Nurses Society Board of Directors.
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