They are Not Their Disease: Clinician and Providers Need to Feel That

by Pat McBride, PhD, CCSH

In the United States, roughly half of the entire adult population suffers from at least one sort of chronic, incurable illness, including diabetes, cancer, heart disease, arthritis, and sleep apnea.¹ Having any of these disorders can pose major challenges to an individual’s life, due to strict medication issues, access to appropriate care, ability to pay for or tolerate treatment offered, and lifestyle changes. While dealing with the medical nuts and bolts of a sudden life changing diagnosis, many patients may have trouble in dealing with the “idea” of the diagnosis and how they will psycho-socially incorporate it into their lives.

Much of the literature on how people deal with their disorders focuses on how people perceive and experience their illness. The focus here, being on the disease itself, not the person who is living with it. As providers, when looking at illness perceptions we immediately think of things like quality of life, adherence to therapy, treatment-seeking-behavior and long-term management for the disorder. When treating obstructive sleep apnea, which by the way is one of the most the most highly contested diagnoses² we must also be mindful of the concept of illness identity³ in the patient. Illness identity not only expresses how the patient views the disease process and treatments, but also how having the disease affects the way they think about themselves and their ability to integrate the disorder into their active identity. Simply put, patients who strongly refute their diagnoses tend toward sub-optimal disease management and adherence to therapies which improve quality of life and clinical outcomes. Whereas those individuals who accept their disease process and integrate it into their lives aside from other self-defining identity assets tend to follow treatment recommendations and self-management protocols, improving their quality of life and long-term health outcome. How we as providers help navigate people from rejection to acceptance has, in my opinion, everything to do with our ability to show clinical empathy in a meaningful way to our patients.

Our ability to show empathy helps navigate people toward acceptance.

When we think of empathy outside of the patient care setting most of us would agree that empathy is a mode of understanding that specifically involves emotional resonance. We react to and become attuned to other’s experiences. However, most clinical providers understand empathy as a form of detached cognition, which in a post pandemic world is less than ideal. On the one hand, we must remain detached to care for patients reliably and objectively, while on the other, reconciling patients’ needs and desire for genuine empathy from their doctors. The operative word here being genuine. Good care providers understand the science whereas great care providers understand science and how to apply it to people. Why? Because they can communicate effectively through clinical empathy and become emotionally attuned to the patient experience. Emotional attunement is absolutely not the same as becoming emotionally “involved” in the patient’s disease process or emotional issues. Emotional attunement operates by shaping what we as providers can imagine about another person’s experience.⁴ When clinicians can imagine what another person is going through, they can find themselves resonating authentically.  It is not necessary that any of us have had the same or similar experience personally as the patients are. Emotional attunement provides a kind of involuntary backdrop to the situation at hand and is just part of ordinary communication between patient and provider in a clinical setting. By careful observation of and attuning to even small comments made by patients, we can get a nonverbal sense of where a person is emotionally in their disease process acceptance/denial or integration. Are they “sitting with it, or not?”

Emotional attunement to your patients will help you and your staff members appreciate the personal meanings behind the patient’s gestures, body language and words. Using what is called associative reasoning helps. For example, when a female patient sits looking at the floor and states that she refuses to wear CPAP in front of her husband, and takes it off at night regardless of gained benefit from and tolerance to it, associative listening may allow her practitioner to “see through” the words to the underlying issue which may be that her husband is “turned off” by her wearing the CPAP. By holding on to the emotions of her words, establishing eye contact, and observing body language, the provider can delve deeper into what may be hindering her ability to positively integrate her disorder to her identity.

The ability to use associative listening, repeating key words and phrases, noting change in vocal tone, body language and by imagining what the patient experiences can and will facilitate trust and further disclosure from patients which is essential in providing precision care. Gaining a high level of trust from patients in turn improves therapeutic efficacy overall.⁵ Establishment of patient trust in their provider has been directly correlated with better treatment adherence and acceptance of their disease process, regardless of what the disease process is. Better acceptance means positive identity integration. Furthermore, empathy in a clinical setting has the additional benefit of substantially decreasing depression and anxiety.⁶

Finally, treating patients in a post pandemic world will never be what it once was, nor should it be. Most of us would likely agree, that it is imperative that we never lose our curiosity about our patients and their lives, and frankly our place in their lives. Afterall, each and every patient brings something unique to our table that may improve our lives in ways they will never know. The old models of clinical detachment in the world of medicine and dentistry no longer serve the patients or doctors well, and post pandemic Zoom medical appointments are not always the appropriate answer to our current healthcare crises. We all need connection, and folks with chronic disease processes need far more “touches” than healthy people. Patients want their providers to be actively engaged and empathic to their needs, and if Roter et al. are to be believed, those of you who engage patients with psychosocially oriented communication styles and empathy will experience burn out far less frequently than your colleagues.⁷ People may argue that clinical empathy is not practical but using objective reasoning alongside of empathy can enhance any diagnosis rather than detract from it.

Without thinking about it, a few small changes in your listening and communication style may make you the one provider who captures the influence of illness on your patient’s sense of self. If you do, it will be something they will never forget and always be grateful for. It’s powerful stuff at the end of the day. Whether or not you can help navigate them from absolute rejection of their disorder towards a place of acceptance and even on to perceiving their lives as improved after diagnosis, the time you spend moving away from clinical detachment toward a place of true clinical empathy will serve you well.