Hopefully, you are familiar with the patient Bill of Rights that was drafted by the federal government’s Advisory Commission on Consumer Protection and Quality in the Health Care Industry in the late 1990s.
It was created with the following three overarching goals:1
• To ensure that the healthcare system is fair and works to meet patients’ needs
• To give patients a way to address any problems that they may have
• To encourage patients to take an active role in staying or getting healthy
As part of these rights, patients are urged to learn about their treatment options and take part in decisions about their care. Knowledge is power, and empowering patients with knowledge can help guide them make the best decisions for their safe and effective care.
Sounds great, right?
Unfortunately, the reality of the healthcare environment is that some patients refuse to make the best decisions for their care even when armed with reams of high-quality information. Take, for instance, a patient of mine who I will call Ms. No (or MN, for short).MN was diagnosed with systemic lupus erythematosus (SLE) in 2009. She initially presented with joint pain and fatigue. She had 4 tender and 2 swollen joints. Her labs were off the charts, with results that were positive for anti-Smith antibodies, anti-nuclear ribonucleoprotein, and anti-Sjögren’s-syndrome-related antigens A and B. Despite all this, MN continued to work full time on an assembly line screwing lids onto vitamin bottles 8 hours a day.
After making our diagnosis of SLE, we started MN on twice-daily hydroxychloroquine (HCQ) 200 mg and daily prednisone 2 mg. She was also taking high doses of daily NSAIDs to help manage her pain. Accompanied by her daughter at every follow-up visit to ensure that MN understood every component of her treatment plan (MN’s English was spotty), I initially felt confident that we were all on the same page.
And for three years, things went reasonably well. We were able to wean MN off of daily prednisone, and her disease remained relatively stable, with minimal joint pain. Things didn’t start going sideways until 2012, when MN arrived for a routine follow-up with mild malar rash, increasing knee and shoulder pain, mild elevation in liver enzymes, skin greying, and increasing fatigue.
We reduced the HCQ 200 mg from twice a day to once a day in an effort to reduce the skin discoloration and told MN to stop taking NSAIDs. Knowing that this would likely cause her pain to spike, we encouraged MN to try to reduce her work schedule or ask her employer for accommodations that would let her sit down during her shift. She adamantly refused to consider our recommendations. Even as her daughter pleaded with her to consider that her job was not as important as her health, all we heard was “No, no, no!”
Fast forward a few months later, and MN landed in the hospital with thrombocytopenia, which required a high dose of prednisone, intravenous immunoglobulin, cyclophosphamide, and several transfusions. Despite this episode, MN was as stubborn as ever when she returned to our office. We suggested to her that she might want to try belimumab and again pushed for her to consider stopping work. “No, no, no,” was all we heard.
More than three years went by. MN continued to work despite recurrent infections, alopecia, increasing fatigue, and persistent joint pain. We added mycophenolate mofetil to her regimen and brought back daily prednisone as well. Despite our frustrations, we kept at MN regarding a trial of belimumab and the need to cut back on her work responsibilities. Alas, MN was still extremely prideful and would accept decisions made only on her terms. Her daughter, who had quit school to care for her mother full-time, was as frustrated as we were.
Over the next 2 years, MN’s health continued to deteriorate. She was diagnosed with interstitial lung disease in early 2016 and continued to suffer from severe greying of the skin and alopecia. Later that same year, she was admitted to the hospital with cardiac palpitations, shortness of breath, and oral candida. A pericardial effusion was diagnosed and successfully treated.
Shortly after her discharge, MN was due for another visit to our office. I was again ready for a fight. This time, though, there was another combatant who came along with MN—her son.
MN’s son was initially furious with me—“Don’t you see my mother is dying right before your eyes? What is wrong with you?!?!” He even started to cry out of fear for his mother’s future. It was a powerful moment. And finally, it gave us the breakthrough we needed. MN could no longer ignore the impact her stubborn refusals had on those around her and agreed to (finally!) truly listen to the recommendations we had been making for years.
She defended me to her son, explaining to him that her declining health was due to her obstinance and not to any mismanaged care on my part. I told her the best thing she could do for me is to listen to her son and allow me to become a partner in her care. MN agreed, and soon after quit her job and began a regular schedule of belimumab infusions. It’s a tragedy that so many negative health impacts had to happen before MN finally agreed to a treatment plan that aligned with her symptoms, but better late than never.
As rheumatology nurses, there are sometimes limits to the help we can give our patients. It is within their rights to seek out information and participate actively in decisions surrounding their care, which means that it is also within their rights to tell us “no” over and over and over. It can be frustrating, especially when we see the impact their refusals have on their care, but we nonetheless need to remain respectful and professional, hoping one day for that breakthrough to come.
Jacqueline Fritz, RN, MSN, CNS, RN-BC,
is Owner and Coordinator of Education at the Medical Advancement Center in Cypress, CA. Her primary responsibility is working as an advanced practice nurse for a large rheumatology practice where she is involved in patient visits, research programs, and infusion center coordination. In addition, she enjoys speaking, teaching, and learning about immunology.
1. Agency for Healthcare Research and Quality. Consumer Bill of Rights & Responsibilities: Executive Summary. Available at archive.ahrq.gov/hcqual/cborr/exsumm.html. Accessed December 8, 2017.