Five years into my practice as an academic allergist/immunologist, my perceptions continue to evolve. Though once primarily informed by my mentors’ wisdom, I continue incorporating my experiences as both physician and autoimmune patient to guide my practice. Though we all know medicine isn’t like it used to be, nostalgia is bittersweet. In its wake, the real question remains: how are we going to respond to ongoing changes and fight for the health of our patients and our colleagues?
From the loss of autonomy with the advent of managed care and corporate takeovers, we find ourselves practicing under increased pressure from all sides. Less time and resources to help sicker patients. Answering not only to our patients’ needs but those of insurance companies and other interested parties whose motives are less than altruistic.
We also cannot forget that, as a whole, physicians look different too — less white, less male, and less willing to devote 80+ hour weeks to our profession. All of these factors and many more are contributing to physician burnout at alarming rates.
In many ways, our patients have changed too. The once common, paternalistic physician-patient relationship is evolving. In the wake of the Me Too and Black Lives Matter movements, many of us are learning a whole new history of generations of medical trauma that go far beyond the cursory lesson on Tuskegee.
Additionally, with the immense growth of social media, health influencers, and celeb gurus, it is not uncommon to have patients arrive at our offices with particular concerns, questions, or even a list of diagnostic testing they want to be performed. They are aiming to play an active role in their evaluation and treatment but without a full understanding of the differences between our training and that of the resource they have come to like, know and trust.
Within the pressure cooker practice, we default to cognitive biases. These biases encompass over 50 different ways our brain seeks to lessen our burden and get us through the demands of the day. These biases are pervasive, and when the tables are turned, we are not spared from their effects. See, it turns out even being a board-certified immune system expert didn’t spare me any of the frustrations and biases common to the workup of an autoimmune condition.
Now, having immersed myself within the invisible and chronic illness communities since my own diagnosis of Sjogren’s Syndrome, I have learned these biases are more commonly described as “medical gaslighting.”
“Medical gaslighting” is a phrase used to describe doctors or medical practitioners who blame a patient’s illness or symptoms on psychological factors or deny a patient’s illness entirely, for example, wrongly telling patients that they are not sick.
In hindsight, I had symptoms for years before my own diagnosis. Symptoms that slowly progressed over the course of my medical training but were either ignored, dismissed, or pushed aside by both myself and my colleagues.
I distinctly recall a visit to my primary care doctor for low back stiffness as an intern. “It’s probably just from rounding all day” or premature closure bias?
Querying my OB/GYN about pain with sex later in residency. “You are just a newlywed, nothing to worry about” or representative restraint?
Talking with my optometrist about my inability to tolerate wearing contact lenses when I started fellowship…” It is just run-of-the-mill dry eye, use some artificial tears” or zebra retreat?
Hypothesizing with my partners about a random episode of anaphylaxis as a second-year fellow. “Likely just a perfect storm and nothing to worry about” or outcome bias?
Shuffling through the fatigue and fog that seemed unending, but I chalked up to being both a new attending and mom. “Probably just lack of sleep and postpartum depression” or psych-out error?
No matter what we term these situations, they don’t occur without consequences. Many patients will stop seeking care due to “poor physician-patient relationships, feeling rebuffed or treated with disrespect, and being denied care.” Research has also demonstrated that the mislabeling of a psychiatric diagnosis can delay rare disease diagnosis by 2.5 to 14 times, according to a survey of 12,000 European patients. This is particularly concerning when the average time to diagnosis a rare disease stands at 4.8 years.
So how can we start to rebuild therapeutic trust with our patients?
1. Actively listen and validate the patient’s experience. We can never fully walk in the patient’s shoes but we can listen. More importantly, we can let them know they have been heard even if we can’t fully explain their experiences.
2. Be upfront with patients about expectations, limitations, and boundaries. Consider letting patients know the length of appointments, if you are able or willing to block additional time when necessary, and the ground rules for communication between visits or for lab results.
3. Be willing to rethink. Psychologist Adam Grant recommends staying humble, maintaining a healthy sense of skepticism and approaching the world with curiosity. Despite knowing now more than we have ever known about the human body and physiology, our work is not done.
Let us not forget the story of Dr. Semmelweis, who demonstrated the importance of hand-washing in Austrian maternity wards in the mid-1800s. The bias known as the Semmelweis reflex is a tendency to reject new evidence that contradicts established norms or paradigms. Sadly, Dr. Semmelweis was so ridiculed that it led to his own public burnout, forced hospitalization, and early death.
More necessary than ever, we need to continue to work towards system-wide change that allows physicians the ability to practice the art and science of medicine in partnership with our patients. The real goal? A win-win-win solution with healthy patients and physicians and a lower cost of care.
Kara Wada is an allergist-immunologist.
Image credit: Shutterstock.com