Simpler instruments, such as the Patient Experienced Symptom State (PESS), may be used to screen for patients in need of more detailed impact evaluation.22
With the dual-target proposal, we seek to ensure the patient’s perspective is reinforced as the central target of disease management. Controlling the disease process, the current target, is an important means to that end, but not a sufficient warranty, as seen above.
Empathy
The health professional’s goal is to serve the patient’s interests in the best possible way.
The patient knows things the clinician often ignores: the symptoms, their intensity and their relative impact on their quality of life. Similarly, the clinician knows things the patient may ignore or be unaware of: that controlling the disease process is pivotal to helping the patient achieve their quality-of-life goals and to prevent irreversible structural and functional damage.
This lack of mutual awareness may lead to unintended consequences, such as the use of stronger medications than the patient feels is warranted or the withdrawal of agents that seem to be working. Because neither the clinician nor the patient wants this to be the end result of the encounter, we must seek solutions that limit the likelihood they will occur.
We believe the treatment target should incorporate the improvement of the patient’s experience beyond mere disease control. That imposes the requirement on the clinician to understand the needs and desires of the patient through active listening in a context that rheumatologists master exceedingly well: true doctor-patient relationships.
Active listening requires not just time, but presence. Presence is when we engage our patients without interrupting, judging or minimizing. It is more than clock time, and although it may appear ineffable, patients know when the doctor is present during their visit. As Ronald Epstein points out in his book, Attending, doctors often don’t do this well.23
A study from the Mayo Clinic supports this: The researchers qualitatively analyzed patients who were discordant in their global response with their providers’ findings. Such patients generally felt they weren’t being listened to and experienced a gap in empathy.24
Nothing will assist us more in our effort to achieve disease control and address the patient’s goals than placing the patient’s views and experiences at the center of the target. The dual-target strategy may play an important role in framing and promoting this path.
Ricardo J.O. Ferreira, RN, PhD, is a specialist nurse and researcher at the Rheumatology Department of Centro Hospitalar e Universitário de Coimbra, and researcher at Health Sciences Research Unit: Nursing (UICiSA:E), Nursing School of Coimbra (ESEnfC), Coimbra, Portugal. He currently serves as chair of the EULAR Health Professionals in Rheumatology (HPR) Committee.
