Bioethics Forum Essay
Ending Medical Gaslighting Requires More than Self-Empowerment
Over the last few years, there’s been much discussion about gaslighting in general, and medical gaslighting in particular. Headlines include “How to Address ‘Medical Gaslighting’,” “Feeling Dismissed? How to Spot ʻMedical Gaslightingʼ and What to Do About It,” and “How to recognize ‘medical gaslighting’ and better advocate for yourself at your next doctor’s appointment.” Ilana Jacqueline’s forthcoming book, Medical Gaslighting: How to Get the Care You Deserve in a System that Makes You Fight for Your Life, is the culmination of much of this reporting.
Patients who are members of marginalized groups—women, Black people, trans people, elderly people, disabled people—are often dismissed, minimized, or altogether ignored by health care professionals. Over time, this can lead to gaslighting in which patients question their thoughts, feelings, symptoms, even themselves. As a result, they have difficulty advocating for themselves in medical contexts. This can result in delayed or missed diagnoses and ultimately to severe and enduring health (and other) consequences.
Many of the articles and other publications about medical gaslighting argue that if patients were better able to speak the language of health care professionals, they’d more likely be heard and taken seriously. They’d be better able to advocate for themselves when injustices and harms like gaslighting occur. Their situation and relationships with health care professionals, their care, and maybe even their health outcomes would improve. Thus, the argument goes, we ought to focus our attention on empowering patients to take charge of their health by equipping them with tools and strategies to educate themselves. Doing so will enable them to receive better medical care.
The problem with this argument is that it puts the responsibility on victims of medical gaslighting to do something about it. This is a worrisome response, as we discuss in our recent book, Microaggressions in Medicine. First, the suggested solution is not only a form of (unintentional) victim blaming, but it comes with ableist, classist, and racist implications regarding how people “ought” to communicate if they want to be taken seriously. Second, this solution fails to acknowledge the systemic nature of the problem, namely, the gross imbalance of institutional, professional, and epistemic power between health care professionals and patients.
Receiving high-quality medical care shouldn’t depend on one’s medical literacy, articulateness, education, or any other contingent factors pertaining to one’s identity. Most people don’t have much, if any, medical literacy, access to medical journals, or the ability to differentiate between more and less credible sources in a world with endless, often interest-driven, information and medical advice at our fingertips. Many cultural and social norms dictate that expert knowledge like that of doctors is not to be questioned. And many people – for good practical reasons–know that if they do question or challenge doctors, they’ll be viewed as “difficult,” “noncompliant,” or “angry” – particularly egregious, yet common stereotypes of Black women – which come with a variety of harmful repercussions for the kind and quality of care they receive.
Thus, we should avoid any recommendations that implicitly blame patients, their identities, cultures, communication styles, or social situations for their sub-par, inequitable care. Moreover, we should avoid putting the onus on patients–who are already ill, vulnerable, and often powerless in the health care system–to bring about systemic and structural changes.
Our position is that all patients deserve high-quality medical care. It is not up to patients to ensure that they receive it. Health care professionals and administrators should hold themselves and their teams accountable to make it so.
Of course, providing high-quality care to all patients is enormously challenging in our current nonideal health care system: clinicians are spread thin or burned out; they often lack the requisite time, resources, and support to have meaningful communication with patients; and many must adhere to productivity demands set by health care corporations that can compromise the kind and quality of care they’re able to deliver. Creating and maintaining conditions that lead to more just and equitable health care delivery is part of the structural piece of this complicated puzzle that’s worth paying attention to and points to issues that go beyond the need to simply “empower” individual patients.
Medical gaslighting is a real problem for marginalized patients. To fix it, we must place responsibility not on individual patients, but on medical educators, medical professionals, and health care institutions: those with the real power to make much needed structural and systemic changes and the moral obligation to treat all patients well and ultimately, to do no harm.
Lauren Freeman, PhD, is a professor of philosophy and director of the MA in Applied Philosophy at University of Louisville.
Heather Stewart, PhD, is an assistant professor of philosophy at Oklahoma State University.
I am not sure why you call this gaslighting. The fact is that, increasingly, people’s complaints are ignored by physicians. I have had that experience even as a medical student, when I became very ill suddenly and was new to the country. I went to see the medical services at the University and I was accused of malingering. I did not push hard enough, and it cost me. While I recovered, it was some two years later when I finally found a physician who actually listened, believed and made an accurate diagnosis. And yes, that gave me back my health. Subsequently, when my third child got suddenly ill at 7days of age, the paediatrician on call for my own paediatrician, called me a hysterical mother. I gave it to him with all I could. I remembered that I had the phone no. of my own paediatrician, called him a few hours later and the child was well looked after. More recently, as I aged and acquired some illnesses, I was given options that did not satisfy me. I was not happy. I pushed back and not always nicely or politely. During hospitalisation, I also found the staff useless and detached and unwilling to collaborate. It resulted in a 1/2 hour speech to a senior resident. To his credit, he learned the lesson. What this teaches me is that healthcare professionals, especially physicians are trained as technicians and are not trained adequately in the art of medicine, that is to treat people and not uniform machines. The time is well-past due for them to re-learn a bit of the old “art of medicine” as a healing endeavour. I was well-trained in those “arts”, starting with my own family doctor who taught me empathy and that each patient is unique. And that teaching was by his behaviour, peppered by a few well=placed anecdotes. More recently, in Medscape, an older Internist lamented the loss the the general internist practicing a more advanced form of family medicine. How right she is… I miss my internist who looked after me for many years… All the theoretical teaching is for naught, if teachers do not lead by example as well. To the credit of the University of Torontio, they now have patient teachers to teach students how to deal with patients properly, regardless of class, education, status, etc. etc.
This article hits a personal chord and poignantly describes our recent family experience at a large medical center. After a diagnosis of locally metastatic melanoma, my 90 year old mother was offered, surgery, radiation or immunotherapy. I have worked in healthcare for 40 years, but I am not a physician. I believed I had performed my due diligence researching the risks/benefits of this promising new novel therapy. The elderly usually have multiple co-morbidities which place them in a much higher risk category then the patients used in clinical trials. This possibility of life threatening severity was relayed in one sentence, through our discussion with the oncologist. If we had been given fragility assessment tool to work through, to determine if this was the very best treatment for a 90 year old to receive, very possibly would have ruled this therapy out, and a palliative course providing good pain control and quality of life would have been seriously considered. Unfortunately, believing and trusting our oncologist, my Mother had the immunotherapy. She was hospitalized after the first dose, and then sent home. After the second dose she suffered life threatening side effects, that left her in hospital for 6 months, and she eventually succumbed to her illness. After she was admitted, I did more research and discovered this treatment is not well tolerated, nor represented in the very elderly population. In the interests of transparency, this would have been information we would like to have known during the consent process. During this 6 month horrific experience, when I brought up the fact that she was 90, and likely should not have received this treatment, and the reply was always “she signed the consent”. A paper authored by some of the physicians that treated her spoke to the contrary for success of this treatment in the very elderly. This makes one wonder, if she would be another statistic for a future paper. Transparency during consent is paramount, God help you if you have no one to advocate for you, and they had better have a background in healthcare.