When Good Isn’t Good Enough

I first met AP, a 48-year-old woman, about 8 years ago when I was new at my current rheumatology practice. From the very start of our relationship, AP has been one of my favorite patients, although she has, unfortunately, had her ups and downs with the management of her psoriatic arthritis (PsA).

AP was diagnosed with PsA several years before we first met, back in an era when there were fewer options available to treat her arthritis and before we knew the importance of an aggressive treatment strategy to prevent the destruction that this disease can cause. Consequently, AP’s joint erosion has been significant.

AP has been on numerous therapies over the years, including most of our oral disease modifying anti-rheumatic drugs such as methotrexate, leflunomide, cyclosporine, and sulfasalazine. She’s been off and on oral steroids, a likely contributor to her secondary diagnosis of osteoporosis. AP has even cycled through several biologics, including etanercept, adalimumab, and, most recently, infliximab.

When I saw AP for a recent routine 3-month follow-up, we began the visit as we always do, with me asking her how she’s been doing. AP is one of those patients with a higher pain tolerance than most, likely because she has had PsA for so long and has learned how to get through the day despite her chronic pain.

In our office, we use a RAPID3 for all of our patients with inflammatory arthritis. All too often, I find that a lot of patients will score their current level of pain as “low” even if I objectively observe a high degree of disease activity. Following this pattern, at this visit, AP scored herself in the “remission” category, although that was not what I saw on my physical exam. She had numerous inflamed joints and her psoriasis appeared worse than it had during previous visits.

When I brought up this dichotomy with AP, she insisted that she was “doing good.”

“What does ‘good’ mean to you?” I asked her.

She told me that she defines “good” as having the ability to do what she needs to on a daily basis. It may involve overcoming some pain and swelling related to her arthritis, but AP said that she was OK with that. While she mentioned that she had been unable to take her dog for many short walks recently despite some improvements on infliximab, AP said that she at least had been able to wash her hair and leave the house, which were both a challenge on previous medication regimens. Even though her arthritis was not “perfect,” AP told me that she was reluctant to make a fuss that would necessitate a change in her medication regimen in fear of returning to her previous, lesser state of health.

My initial reaction to her response was, quite naturally, surprise. We practice in an era where being aggressive with therapy is consistently emphasized, and a variety of options are available to us to help patients reach remission. If one approach has lost efficacy, or is simply not efficacious enough from the beginning, it’s generally time to make a change. I try to hammer that mantra into all of my PsA patients and had certainly talked to AP at length about it over the years.

Consequently, I had to stop myself for a moment after hearing AP’s response. Was there something about this philosophy of early, aggressive treatment that AP didn’t understand? Did she simply believe I had been blowing hot air all these years we had been together as patient and provider?

It was a good time for me to take a deep breath, consider AP’s state of mind, and meet her where she was both physically and emotionally. Sometimes, with some patients, this may mean not making a change in treatment as rapidly as we would like and allowing the patient to wrap their head around their circumstances. But with AP, so long a patient and a friend, I was forceful in telling her that “good” is not good enough for me and that when I notice more swelling in her joints and worsening psoriasis—as I did at this most recent visit—it makes me wonder whether her medication regimen is working as well as it should.

Nonetheless, I agreed to hold off on making any changes to AP’s medication regimen until receiving updated radiographs and lab results. We agreed to talk again after her next infliximab infusion.

At this next discussion, armed with X-rays showing a progression in her joint disease and no further improvements in her arthritis, AP did agree to make a change in her treatment. After cycling through three anti-TNFs, I suggested picking a biologic with a different mechanism of action. While reticent to try something new—there’s the fear of returning to her lesser condition—AP finally agreed to give tofacitinib a try. It’s been about 6 weeks, and AP appears to be responding nicely.

There are a few lessons to take away from my experience with AP.

The first is that some of our patients with long-standing disease may tell us they are better than they actually are. They don’t mean to deceive us, but they are just so used to their circumstances that they have accepted a certain level of pain and discomfort. It’s our job to ask the right questions to figure out the real truth.

The second lesson has to do with the art of medicine. I truly believe that nurses and advanced practice providers are gifted in our understanding of the “soft skills” of patient care. We know the importance of meeting our patients where they are and how to read between the lines of their dialogue with us. While a part of me wanted to rush AP off of infliximab and onto something else, I knew I needed to be patient and not rush AP into a change that would make her uncomfortable. She needed to feel as good with the change as I did. Once I was able to get her onto the same side as me, it was a much easier conversation about what she could expect on a new regimen.

“I truly believe that nurses and advanced practice providers… know the importance of meeting our patients where they are and how to read between the lines of their dialogue with us.”

Hopefully, AP will continue to do well on tofacitinib for the near future. She’s back to daily walks with her dog, which I know makes her happy. And when I start hearing that she’s feeling “great” at our periodic check-ins, I’ll be happy too.

 

Amanda Mixon, PA-C
Amanda Mixon, PA-C, is a physician assistant at Arthritis and Rheumatology Clinic of Northern Colorado in Denver, Colorado and a Board Liason for the Rheumatology Nurses Society.

 

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