Stop Medical Gaslighting to Empower Your Patients
"Gaslighting" happens when one person tries to convince another to second-guess their instincts and doubt their perception that something is real. Medical gaslighting happens when health-care professionals downplay or blow off symptoms and try to convince patients that they are caused by something else—or even that someone is imagining them.1
Have you ever heard a patient referred to in terms like these (from a petition on Change.org?)2
I have known and heard of doctors who don’t think to ask patients about their values, goals and lifestyle, all of which are essential factors to consider when helping a patient choose the treatment for kidney failure that will work best for them. I’ve known doctors and other healthcare professionals who have assumed patients weren’t smart enough to do home dialysis if they had a high school education or less. Some have underestimated a patient’s ability to self-manage if they had hearing or vision loss. Others thought poor patients might sell their EPO if it was sent home with them and questioned a female patient’s ability to practice sterile technique if they had messy hair and wore no makeup. I have heard nurses tell a patient they’re not having the symptom they report, from cramps to a drop in blood pressure that happens before the BP monitor picks it up.
I have a friend (let’s call her Jane) who has had a kidney transplant for 21 years after being on in-center HD for 10. Her nephrologist told her had a “fantastic imagination” when she told him 7 weeks after starting dialysis that she thought she might have cancer because her hemoglobin and hematocrit were dropping, which is uncommon in a PKD patient. Before he listened, her appendix had ruptured. Jane was diagnosed with cancer of the appendix—but not before cancer cells were able to spread through her body, requiring chemotherapy along with hemodialysis. Despite being in her 30s, her doctor asked why she would choose to do chemo when she had kidney failure—without asking her goals.
Jane had diarrhea for almost 5 months until she finally convinced doctors to test for and treat Clostridium difficile. Later, during a hospital admission for GI symptoms, a renal fellow told her that her GI tract was “stone cold normal” and when I talked with her nephrologist (with her permission), he said, “She exaggerates.” Jane didn’t accept what she was told. Instead, she trusted her instincts, researched her symptoms, considered a possible diagnosis, identified an expert in that condition, made an appointment, and flew to California to get the diagnosis of small intestinal bacterial overgrowth, allowing treatment to start. During a second admission at that California hospital a radiologist reading a scan found that she had a blind loop in her intestine created during the appendix surgery. It was filled with bacteria that had been seeding her intestines for more than 20 years. Between the C diff and bacteria from the blind loop, Jane now lives with intestinal failure and malabsorption. For 10 years, she has required total parenteral nutrition for 12 hours each night. She knows her body, her conditions, medications, surgeries and is a credible reporter and self-advocate. Why didn’t doctors and other healthcare providers listen to her? How many of her complications would have occurred if her healthcare providers hadn’t discounted her knowledge and reports of her symptoms? Jane is the one who suggested this topic of gaslighting because she’s experienced it multiple times—and the result has been devastating.
How to Avoid Gaslighting
Jane asked me to urge healthcare professionals to stop disempowering patients by ignoring or discounting their concerns. Instead please listen to your patients. Pay close attention to their reported symptoms and complaints. If you can’t address the symptom or complaint, reach out to someone who can. It’s OK to know your limits—but it’s not OK to gaslight your patients. Instead:
- Encourage your patients to pay attention to what their bodies are telling them.
- Teach them how to collect the data needed to get their healthcare providers to pay attention to their symptoms, including a description of the symptoms, when they occur, how long they last, how severe they are, and what makes them better or worse.
- Help them know what to report, when to report, and to whom to report these data.
- Encourage them to believe in themselves and to advocate for what they need and deserve.
- Support them by calling out any mischaracterizations of them that you hear and help them correct any they hear.
Conclusion
Gaslighting has to stop before we can say we want patients to be active participants in their care or that we are providing our patients respectful, individualized and patient-centered care.
Finally, doctors, in case you’ve forgotten the oath you took upon becoming a doctor…
“The Hippocratic Oath: Modern Version
I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.
I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.
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Written in 1964 by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University, and used in many medical schools today.”3
- Booth, S. Is Your Doctor Gaslighting You? Here’s What To Do. 9/5/2018. https://www.health.com/mind-body/is-your-doctor-gaslighting-you.↩
- I Told You I Was Sick. Stop Power-Hungry Doctors from Bullying, Gaslighting, and Blacklisting Their Patients. https://www.change.org/p/stop-power-hungry-doctors-from-bullying-gaslighting-and-blacklisting-their-patients↩
- The Hippocratic Oath: Modern Version. https://www.pbs.org/wgbh/nova/doctors/oath_modern.html↩
Comments
Lanoka Livingston
Jul 20, 2020 9:50 PM
I get so frustrated in trying to talk to the health care group (doctor, nurses, social worker) and have them respond to me like I am a child.
Beth Witten
Jul 20, 2020 10:45 PM
Tracy Pratt
Feb 10, 2020 10:24 PM
Beth Witten
Feb 13, 2020 8:32 PM
Lois Kelley
Jan 20, 2020 3:07 PM
Great Article. Thank you Jane!!
Beth Witten
Feb 13, 2020 8:22 PM
Heather
Jan 18, 2020 9:35 PM
LB
Jan 16, 2020 8:34 PM
Track your symptoms, follow your intuition and advocate for yourself always. Ask questions. Take notes if you want to because it can be challenging to recall details when you’re not feeling well.
Bring someone with you if you need support and a witness to what was said and done during an appointment.
You have to live with the outcome; the practitioner doesn’t.
Beth Witten
Feb 13, 2020 8:19 PM