One of my college professors once told me, “Iris, if you listen hard enough, the patient will tell you what is wrong with them.” Apparently, I had been complaining a little too much about all of the potential diagnoses I was expected to keep in my head and was feeling unprepared and overwhelmed at graduation time. This was my professor’s way of calming me down.
Turns out, her advice was spot on.
On a daily basis, we all encounter patients who we simply cannot help enough. Personally, I am particularly frustrated with my inability to help patients with hypermobile Ehlers-Danlos syndrome. And don’t get me started about the challenges of our fibromyalgia patients, who desperately need us to do something although that “something” is rarely obvious.
It’s times like these when I remember my professor’s advice, take a deep breath, look my patient in the eye, and ask them to tell me their story. Nothing fancy, nothing complicated. They talk, I listen.
I can’t tell you how many times, at the end of telling me their story, patients have come over, hugged me, and said, “I always look forward to seeing you. You always make me feel better.” I often have to tell them, “But I didn’t do anything. I haven’t offered anything to fix what’s wrong with you.” Their response? “But you listen, and you care.”
Let me give you an example.
JT was 26 years old when she first came to see me after having been to a number of previous healthcare providers and failing to obtain the relief she needed. She initially complained of persistent joint pain that was worst after exercise, lifelong history of “clumsiness,” unusual flexibility that always impressed her friends, and a 7-year history of dizzy spells and near syncope. I didn’t rush to a diagnosis or a quick fix. I listened to JT’s story and ordered a panel of lab tests. Then I thought about the information I had collected. It all helped me reach a diagnosis of benign joint hypermobility syndrome with features of positional orthostatic tachycardia syndrome.
I initially set JT up with a physical therapist I trusted and referred her to a cardiologist who specialized in the treatment of autonomic neuropathy. She was relieved to receive a comprehensive plan of care and a formal diagnosis to explain her unusual collection of symptoms.
What we really need to do more than anything else is to listen to our patients, and that can be done regardless of whether they are sitting directly in front of us or in front of a computer 250 miles away.
Then there was KW, a 60-year-old female with recurrent sleep problems, chronic widespread pain, headaches, paresthesia, and irritable bowel syndrome. During our initial conversation, KW told me that she had recently been suicidal due to the constant battery of healthcare appointments and tests she had been through with no conclusive answers provided to her. I eventually diagnosed KW with fibromyalgia. Again, she was relieved to finally have a name to attach to her symptoms, even if I couldn’t offer any immediate relief.
These are just two recent examples of patients who I helped more by listening than anything else.
There has been considerable discussion about how telemedicine can never work in a specialty such as rheumatology where we traditionally have relied upon touching our patients and evaluating their joints. I disagree, and as shown throughout this issue, the data is there to support me.
What we really need to do more than anything else is to listen to our patients, and that can be done regardless of whether they are sitting directly in front of us or in front of a computer 250 miles away. By listening to our patients, we’ll be able to tell if they are struggling with their current treatment regimen or if they perhaps have an additional undiagnosed or misdiagnosed autoimmune disease that we need to address.
Certainly, there are issues that need to be solved! As an example, there have been lengthy discussions about MIPS and MACRA and how a telemedicine visit can be coded to make it financially viable. I’m hopeful that we’ll figure out some of those things in the near future.
While telemedicine won’t allow me to hug my patient, it will allow those individuals who live 3 hours away or who work full time and can’t afford another day off to “see me” while sitting in their home or place of business. Maybe I won’t be able to bill as much as I would for a traditional face-to-face visit, but as long as there is reasonable financial remuneration, I can certainly see telemedicine playing a vital role in our future.
I recently read a study report that drove home the need to be more flexible with my patients. The takeaway from the study was that fibromyalgia patients are less likely to commit suicide if they see their healthcare provider more often! 1 It was the kick in the butt I needed not to ignore my patients who need the most care. How often have we all been tempted to postpone a follow-up visit for 6 months or a year in someone who we don’t feel we can help with a pharmacologic solution? It’s at these times that we need to remember one thing, nursing is about caring and listening to our patients, even if there is no quick fix. Sometimes, a compassionate ear is what our patients need most of all.
Iris Zink, MSN, NP, RN-BC is a nurse practitioner at Lansing Rheumatology in Lansing, Michigan
1. McKernan LC, Lenert MC, Crofford LJ, Walsh CG. Outpatient engagement lowers predicted risk of suicide attempts in fibromyalgia. Arthritis Care Res (Hoboken). [Epub ahead of print]