I have spent some time thinking over the things that went wrong with my father’s most recent engagement with the healthcare system. One that he ultimately did not survive. I wrote about some of my concerns previously, but I feel that I need to come back to this topic. If you would like to get a copy of the ECRI 2025 top 10 safety list, follow this link and sign up. But, one of their top 10 concerns is “the risk of dismissing patient, family, and caregiver concerns.
If you go back a bit in time on this blog, you will find the painful history of what happened to my father, despite my background as a physician and a focus on patient safety. Although I was in a different state, I called the nurses and asked the physicians to call (they didn’t). That led to a cardiac arrest and a very long recovery. In September of last year he was readmitted to the hospital after he was sent home with his first ever kidney stone. Upon readmission he clearly was uroseptic, but strangely the physician seemed to be doing very little. Once again, I find myself asking nicely but finally demanding that the physician call me. I asked the physician what he thought was going on and his said that he thought my dad was septic. I agreed, but then I asked why they were not doing the many things that you do when a patient is septic. Only then, did they start doing what they should have been doing all along. The physician seemed to think my dad was demented and also could not swallow, so they were not feeding him. I know that my mother had already said that he was eating fine prior to admission and as I argued with his doctor, I finally said, “my father is not demented, he is delirious and if you were delirious you would not be able to swallow either”. This was the beginning of one episode after another of physicians ignoring my concerns and my background as a physician. It was maddening, but not the last time we would struggle with physicians who did not take our concerns seriously. Turns out we are not alone in this problem.
A recent survey noted that 94% of respondents reported that they felt instances where they felt their symptoms of concerns were ignored or dismissed by their doctor. This can make people feel as though their physician is “gaslighting” them. What is happening here is that the medical team invalidates a patient’s clinical concerns without proper evaluation. This may be unintentional, stemming from cognitive biases, preconceived notions, or unconscious biases. But the behaviors include dismissing symptoms, minimizing severity, ignoring patients, misattributing symptoms, refusing to do follow-up tests, and condescending attitudes. If it can happen to a physician advocating for a parent, it can most certainly happen to pretty much anyone. But the impact is significant leading to misdiagnosis, delayed treatment, prolonged suffering, and emotional distress. Fair to say that we felt all of these as we tried to deal with the decline and ultimate death of my father.
While this can happen to anyone certain populations are at greater risk. Women, people of color, older adults, and LGBTQ individuals, are more likely to experience medical gaslighting due to structural discrimination and preexisting biases. I have to wonder…my father was old and I am a woman, how much did that contribute to the fact that we felt we were not heard by the medical teams.
Despite everything, I don’t believe that health systems are full of terrible people. The environment of today’s health system is fast-paced and high-pressure. Healthcare professionals care for an increased number of complex patients, often communicate with multimodal technologies, and increasingly have limited amount of time to spend with each patient. When working within a misaligned system that does not facilitate empathetic patient-centered care, and fails to recognize preexisting biases, it should not surprise us that healthcare professionals may become dismissive of patient and family concerns.
So, what’s to be done?
Given the sustained pressures on health systems with increasing patients and potentially reduced revenue sources, it is hard to imagine that providers are going to be able to change the way they engage with patients. Still, the following can be suggested:
- Culture, Leadership, and Governance: Prioritize patient trust, address medical gaslighting behaviors, limit dismissive language, and make efforts to allow adequate time for patient interactions.
- Patient and Family Engagement: Provide tools to help patients articulate their concerns, ask open-ended questions, and empower patients to seek second opinions. Encourage patients and families to insist they be heard and make certain they know how to contact patient advocates when they have concerns.
- Workforce Safety and Wellness: Train healthcare professionals in empathetic listening and bias mitigation techniques (this one is hard given the current administration does not believe in this).
- Learning System: Implement severity scoring for patient complaints, use simulation training, and educate clinicians on complex medical conditions.
Last – consider basing provider bonuses and advancements on the feedback received from patients and families. We must find ways to ensure the voice of the patient and family are heard.