By Ellen Fink-Samnick DBH, MSW, LCSW, ACSW, CCM, CCTP, CRP, FCM
There is one voice in healthcare that case managers must never become too busy, too technologically dependent, or too professionally confident to hear: the voice of their patient. October is Patient-centered Care Awareness Month, and an appropriate time to share this vital messaging.
Patients live inside their bodies, which encompasses their symptoms, their fears, their functional limitations, and their everyday realities. Families and caregivers provide another layer of essential information: changes in a patient’s behavior, cognition, activities of daily living, medication responses, appetite, mobility, mood, or overall condition that may not be visible during a brief clinical encounter. Yet, despite decades of emphasis on patient-centered care, shared decision-making, and population-based practice, the lived experience of the patient is still be minimized, questioned, and dismissed. This is not a communication problem, but a patient safety problem.
My experiences during an emergent visit to a specialist several decades ago were an initial flag to how big a safety problem this issue was. I was a 4o-year old female who was referred by her primary care physician for severe pelvic and lower extremity pain. During the visit, the practitioner stated, “your symptoms are not typical, but nothing to be concerned about. They are most likely stress related. You are knowledgeable from being in healthcare, so trust me as your physician. Let me know if anything changes further”. I was stymied!
- I stopped reporting symptoms.
- I stopped asking questions.
- I stopped challenging my unexplained diagnosis, and
- I did not follow-up with that specialist.
Patients and providers do not always disagree, but this was far more than disagreement. I was an intuitive and informed patient who knew that something was wrong within her body, and got little validation of that fact. My voice was dismissed, devalued, and distrusted.
The consequences of this situation and the actions of a physician who didn’t value my voice appeared one year later. Over this timeline I experienced three bouts of what my pulmonologist diagnosed as “viral pleurisy” and repeated episodes of 10/10 pelvic pain. There was an emergency hospitalization, a discharge, and then an emergent 8-hour surgery within the week. I was diagnosed with a rarity, though finally an answer: Stage 4-Endometriosis had invaded my lungs, my kidneys and other organs. Lengthy and costly hospitalization, surgery, and treatment followed. The emotional wear and tear of these events on this patient, my family, and support system were unfathomable.
When Listening Becomes Medical Gaslighting
The term medical invalidation or gaslighting has entered contemporary healthcare conversations. Patients increasingly describe experiences where their symptoms or concerns are minimized, dismissed, or attributed to something other than a legitimate clinical issue. Incidence of occurrence ranges from 45% to 85% of distinct populations (Fagen et al., 2023; Nowaskie et al., 2025). Ng et al. (2024) frame medical gaslighting to characterize those negative patient experiences that occur when genuine clinical concerns are inappropriately dismissed or invalidated. This action is different from clinical disagreement between the patient, family, and the care team. Practitioners may question a patient's interpretation of the information that was shared. They may broach an alternative diagnosis, or explain that the available evidence does not support a particular diagnosis. Medical gaslighting is a blatant disregard of symptom presentation, and by the person who knows their body best: the patient.
Healthcare professionals do not always agree with patients. Diagnostic uncertainty is real. Some symptoms are nonspecific. Some tests may not be clinically indicated. Patients may receive recommendations that they do not understand or agree with. These circumstances do not require us to invalidate the person experiencing the problem.
There is a big difference between saying: “The evidence does not support that diagnosis, but let's explore what you are experiencing.” and: “There is nothing wrong with you.”. The first response preserves the patient's dignity and worth, while keeping a path toward clinical inquiry open. The second slams the communication door shut.
The Patient Knows Something the Practitioner Does Not
Professional education and expertise does not eliminate the value of lived experience. Clinicians should be able to connect symptom presentation to disease process. Case managers understand the healthcare system and how to coordinate care for their patients across every touchpoint of care. Social workers are proficient in the biopsychosocial context of care and resource navigation. Nurses are educated to recognize subtle signs and symptoms of illness. Pharmacists are trained to understand medication interactions. Yet only the patient intimately knows what it feels like to live with the condition. That distinction matters.
The patient may be the first person to recognize that a symptom feels different, and is a cause for concern. A caregiver may notice that an older adult is suddenly confused or significantly weaker than during a prior visit. A parent may know that their child's behavior has changed dramatically. A person living with chronic illness may recognize that a familiar symptom pattern has changed. A patient receiving behavioral healthcare may understand that something about their functioning, mood, sleep, or thinking is inconsistent with their usual experience. A person may experience debilitating abdominal pain levels that make it difficult to function, focus, or even rise from a sitting position. The latter was my reality on the day that I was hospitalized, and finally under the care of a specialty group who recognized that these symptoms mandated emergent attention.
Observations of this severity should not automatically dictate clinical conclusions, but deserve clinical scrutiny. Listening to a patient’s voice does not mean that a practitioner (or case manager) automatically agrees with the reporter. Listening means that the person took their patient’s voice seriously enough to explore the issue(s) further.
Research supports this distinction. Patient complaints and concerns can contain meaningful signals about diagnostic safety. Giardini et al. (2021) analyzed patient complaints about provider dismissal and found a high volume of cases that involved diagnostic errors and missed opportunities to accurately and proactively diagnose. Study conclusions noted the value of using patient complaint data to identify patterns of diagnostic safety concerns and opportunities for improvement (Giardini et al., 2021). The patient's voice is not anecdotal noise; it serves as vital safety intel.
The Harm of Symptom Dismissal
The consequences of dismissal transcend a poor patient experience. When patients repeatedly report symptoms that are minimized, they experience frustration, loss of trust, delayed diagnosis, and reluctance to seek additional care. Emerging scholarship on symptom invalidation has linked these experiences with altered beliefs and emotions, changes in healthcare-seeking behavior, and diagnostic delays (Ng et al., 2024).
The costs of this missteps are equally valuable. Billions of dollars are spent annually due to delayed or missed diagnoses (Fink-Samnick 2024; Fuss et al., 2024). The economic impact of avoidable costs stemming from delayed diagnoses has ranged from $86,000 to $517,000 per patient (Glaubitz et al., 2025). Endometriosis alone incurs an economic burden of $78 to $119 billion annually from delays in diagnostic testing of patients and lost workdays (Penzer & Schweikart, 2025).
ECRI's 2025 patient safety analysis places this concern within a larger systems context. Complex patients, multiple communication technologies, time pressures, and cognitive biases can make it more difficult for healthcare professionals to consistently provide empathetic, patient-centered care (ECRI, 2025). This is where case managers should be particularly careful.
The Case Manager's Critical Role
Professional case managers occupy a unique space in this conversation. We function at the intersection of the patient, family, healthcare team, payer, community resources, and broader healthcare systems. We have more opportunity than other professionals to hear the patient's story, and often over time. Case managers prioritize clinical and fiscal outcomes, which emphasizes the need to be proactive with screening and assessment of the patient’s presenting problem.
Case managers should ask reflective questions that leverage their ability to get to the core of any issues sensed, and in the moment:
- What is the patient telling us that may not be reflected in the medical record?
- What changes has the family or caregiver observed?
- Have we clearly documented the patient's concerns?
- Has the concern been communicated to the appropriate member of the care team?
- Have we distinguished disagreement from dismissal?
- Are implicit biases influencing how the patient's story is being interpreted?
- Does the patient understand the plan of care?
- Does the patient feel heard?
These are not reflective questions, but mandatory safety practices.
Patient-centered care requires attention to patients' experiences, needs, preferences, and perspectives, with meaningful and reciprocal participation in all decisions about their care. The patient's voice is not an optional addition to clinical care. The safety intelligence gained heeds case management’s obligation to the Quintuple Aim (Nundy et al., 2022): patient- and family- centric care rendered at the right time, for the right cost, by a workforce who embraces the work, and delivered in a manner that is inclusive and accessible for all who need it.
References
ECRI. (2025). Top 10 patient safety concerns 2025. ECRI.
Fagen, J. L., Shelton, J. A., & Luché-Thayer, J. (2023). Medical Gaslighting and Lyme Disease: The Patient Experience. Healthcare (Basel, Switzerland), 12(1), 78. https://doi.org/10.3390/healthcare12010078
Fink-Samnick E. (2025). Medical Gaslighting's Universal Truth. Professional case management, 30(3), 111–115. https://doi.org/10.1097/NCM.0000000000000796
Fuss, A., Jagielski, C. H., & Taft, T. (2024). We didn't start the fire…or did we?-a narrative review of medical gaslighting and introduction to medical invalidation. Translational gastroenterology and hepatology, 9, 73. https://doi.org/10.21037/tgh-24-26
Glaubitz, R., Heinrich, L., Tesch, F., Seifert, M., Reber, K. C., Marschall, U., Schmitt, J., & Müller, G. (2025). The cost of the diagnostic odyssey of patients with suspected rare diseases. Orphanet journal of rare diseases, 20(1), 222. https://doi.org/10.1186/s13023-025-03751-y
Giardina, T. D., Korukonda, S., Shahid, U., Vaghani, V., Upadhyay, D. K., Burke, G. F., & Singh, H. (2021). Use of patient complaints to identify diagnosis-related safety concerns: a mixed-method evaluation. BMJ quality & safety, 30(12), 996–1001. https://doi.org/10.1136/bmjqs-2020-011593
Ng, I. K. S., Tham, S. Z. L., Singh, G. D., Thong, C., & Teo, D. B. (2024). Medical gaslighting: A new colloquialism. The American Journal of Medicine, 137(10), 920–922. https://doi.org/10.1016/j.amjmed.2024.06.022
Nowaskie, D. Z., Blackwood, D., & Garcia, F. (2025). Pervasive systemic disparities: medical-related gaslighting, trauma, and distrust among LGBTQ+ people in the United States. Frontiers in sociology, 10, 1488888. https://doi.org/10.3389/fsoc.2025.1488888
Nundy, S., Cooper, L. A., & Mate, K. S. (2022). The Quintuple Aim for Health Care Improvement: A New Imperative to Advance Health Equity. JAMA, 327(6), 521–522. https://doi.org/10.1001/jama.2021.25181
Penzer, A. J. and Schweikart, S.S. (2025). Using policy and law to help reduce endometriosis diagnostic delay; AMA J Ethics. 2025;27(2):E104-109. doi: 10.1001/amajethics.2025.104.
Happy National Case Management Week. This week, we RECOGNIZE the case managers who make a difference every day through advocacy, coordination, problem-solving, compassion and connection. CMSA has a full week of education and celebration planned, and we hope you'll be part of it. See the schedule: bit.ly/3PR89WG
Bio: Dr. Ellen Fink-Samnick, is a distinguished author, educator, and thought leader in the healthcare industry, who specializes in health equity, integrated care, interprofessional ethics, professional case management, quality improvement, and trauma-informed education and leadership. She is a faculty member, academic advisor, and the IRB Coordinator for the Doctoral Program at Cummings Graduate Institute of Behavioral Health studies. Dr. Fink-Samnick actively participates in a diverse range of national leadership and consultant roles within the industry. Her extensive academic contributions include authorship of seven scholarly texts, over 100 articles, and other valuable knowledge content.