Great advice, Theresa, especially the part about starting polite, saying “I don’t understand” until you do, and transitioning to a mad but measured response if all else fails. I am deeply appreciative of my medical training and how it helps me as a patient; I hope to develop a course for folks in my community which would arm them with some of that information and make being a patient less stressful.
I was hospitalized for dehydration following my first chemo treatment for breast cancer in 2021; and while in the hospital was diagnosed with a severe case of thrush as well - which I proceeded to get after each treatment, making eating and drinking even more difficult. I begged my oncologist's staff (Onc was on maternity leave and being covered by various docs) to pre-treat me for thrush or even just call in a scrip so I could have it at the ready; but they would not. Each time I had to wait until it surfaced then beg for them to call in a prescription - despite sending them studies showing pre-treating chemo patients for thrush works. I will never forget the ONC nurse said to me, "I don't know what the problem is, none of our other patients get thrush." As though I was either being a whiner or was doing something to give myself thrush. UGH.
This is fantastic advice and I couldn’t agree more. I remember having my 2 year old in the ER where nobody knew me. It was the first time I had been a mom, a nurse and a patient wrapped into one. I was very unhappy with the care, but said nothing. That day was a turning point for me and now I speak up!
During my husband's last hospitalization, for pneumonia, the cardiologist covering "discovered" his CHF and wanted to intervene aggressively. Our team had determined 1 1/2 years prior that we would not have any more invasive procedures because they can't address his basic health issues and each time he is permanently diminished. The cardiologist screamed at me in front of my husband, "He could die! Do you understand that? He could die!" We left against medical orders. Our usual cardiologist and the rest of the team affirmed at check-ups that we had done the right thing, but it was certainly stressful.
Thank you for this. I’ve learned how to advocate for my patients, and as a patient I speak up as well. No more are there RNs in ambulatory care, unless at an academic facility. I learned that fact again today when I’ve waited for clinic staff or my pulmonologist to call me with my in clinic sleep study results completed 3 wks ago. I’ve been on cpap x1yr. I stopped because of difficulty with the masks (4changes), and being awakened nightly. My sleep was not restful nor would I ever say, as every MD has told me-- I have patients who LOVE their cpap. I received a call from the company who wants to deliver a new machine or new equipment-- they’re unclear of the order. I call the clinic and told “no one can call you with your results. We don’t have an RN and just keep your 7/5 appointment, and we charge $6.50 for your report”-- 7 wks out from the study. They have no EMR patient portal. I messaged my Tampa General satellite clinic through the portal requesting a new pulmonologist referral and I’m willing to drive 45 min to Tampa. My issue doesn’t compare to others in the article. But we all know someone with similar stories. And when I lived in Chicago- the level of healthcare access is night and day compared to Florida for instance...And if they can’t receive adequate care-- they suffer. A friend in her late 60’s cares for her 92yo mother and her neurologically impaired adult daughter. She has to drive her family 5hr to see a neurologist, as there are no neurologists in Brevard County, FL that accepts Medicaid. This is the state of healthcare. Watch BlledOut on HBO-- Steven Burrows, former LA actor/director/producer who filmed his journey to get his mother adequate care after she “bled out” for routine hip surgery. It’ll shock and disgust
This is so disturbingly ACCURATE! And it's getting worse ... I saw big changes from my initial cancer hospitalization in 2018 to the most recent in January 2023. I was completely out of the hospital for 39 months and was absolutely shocked at the difference. And, yes I AM a nurse, a former nurse practitioner, as well as a current Clinical Instructor for BSN & MSN students. Even so, I make sure my husband or adult daughter (also a RN) can stay with me during hospitalizations. Every single time I hear, "good thing you were feeling well enough to challenge 'that', it's outrageous". Breaks my heart that nursing, and healthcare in general, has become so focused on the "CYA" approach to care rather than the patient. Regardless of what is KNOWN to be effective (or not) for a SPECIFIC patient, they rely on the lovely insurance corporations' protocols that work for MOST people until you challenge that care repeatedly. It feels more like you are wearing them down than getting them to see YOUR healthcare picture. ALWAYS ADVOCATE FOR YOURSELF, YOUR PATIENTS, AND YOUR LOVED ONES.
Example - I was told by a 'chief resident' during my last hospitalization that she wouldn't discharge me because my kidney function was "persistently elevated, I'm not comfortable with that". News flash: I have atypical HUS diagnosed after a severe bout of TMA that left permanent kidney damage (all triggered by gemcitabine). My BUN & creatinine haven't been within defined limits in over 4 years. I was feeling fiesty enough by then to reply "If you can get my kidney function to normal levels I'll stay as long as you'd like". Rather than laugh and look at the history even after I explained, she was extremely upset that I challenged her notion. I feel sorry for her future patients.
Your acronym is clever, and so helpful! I think your advice is especially important for women. We’re trained by our families, schools, religions, and culture to be accommodating and not to make waves. So if the medical system is running roughshod over us, our understandable impulse is to submit lest we cause any trouble. But we need to make trouble sometimes!
Another piece of advice I would add, which unfortunately wrecks your acronym, is Remind your doctor or nurse that you are a person. My mom needs to get injections in her eye, and her doctor failed to give her appropriate anesthesia--and then scolded her for reacting to the pain! (Yes, she Transferred to another doctor.) But it would have been useful information for this first doctor to hear that most human beings don’t like having a needle stuck in their eye!
Anyway, thanks for this terrific and useful article!
Great advice, Theresa, especially the part about starting polite, saying “I don’t understand” until you do, and transitioning to a mad but measured response if all else fails. I am deeply appreciative of my medical training and how it helps me as a patient; I hope to develop a course for folks in my community which would arm them with some of that information and make being a patient less stressful.
I was hospitalized for dehydration following my first chemo treatment for breast cancer in 2021; and while in the hospital was diagnosed with a severe case of thrush as well - which I proceeded to get after each treatment, making eating and drinking even more difficult. I begged my oncologist's staff (Onc was on maternity leave and being covered by various docs) to pre-treat me for thrush or even just call in a scrip so I could have it at the ready; but they would not. Each time I had to wait until it surfaced then beg for them to call in a prescription - despite sending them studies showing pre-treating chemo patients for thrush works. I will never forget the ONC nurse said to me, "I don't know what the problem is, none of our other patients get thrush." As though I was either being a whiner or was doing something to give myself thrush. UGH.
This is fantastic advice and I couldn’t agree more. I remember having my 2 year old in the ER where nobody knew me. It was the first time I had been a mom, a nurse and a patient wrapped into one. I was very unhappy with the care, but said nothing. That day was a turning point for me and now I speak up!
During my husband's last hospitalization, for pneumonia, the cardiologist covering "discovered" his CHF and wanted to intervene aggressively. Our team had determined 1 1/2 years prior that we would not have any more invasive procedures because they can't address his basic health issues and each time he is permanently diminished. The cardiologist screamed at me in front of my husband, "He could die! Do you understand that? He could die!" We left against medical orders. Our usual cardiologist and the rest of the team affirmed at check-ups that we had done the right thing, but it was certainly stressful.
Thank you for this. I’ve learned how to advocate for my patients, and as a patient I speak up as well. No more are there RNs in ambulatory care, unless at an academic facility. I learned that fact again today when I’ve waited for clinic staff or my pulmonologist to call me with my in clinic sleep study results completed 3 wks ago. I’ve been on cpap x1yr. I stopped because of difficulty with the masks (4changes), and being awakened nightly. My sleep was not restful nor would I ever say, as every MD has told me-- I have patients who LOVE their cpap. I received a call from the company who wants to deliver a new machine or new equipment-- they’re unclear of the order. I call the clinic and told “no one can call you with your results. We don’t have an RN and just keep your 7/5 appointment, and we charge $6.50 for your report”-- 7 wks out from the study. They have no EMR patient portal. I messaged my Tampa General satellite clinic through the portal requesting a new pulmonologist referral and I’m willing to drive 45 min to Tampa. My issue doesn’t compare to others in the article. But we all know someone with similar stories. And when I lived in Chicago- the level of healthcare access is night and day compared to Florida for instance...And if they can’t receive adequate care-- they suffer. A friend in her late 60’s cares for her 92yo mother and her neurologically impaired adult daughter. She has to drive her family 5hr to see a neurologist, as there are no neurologists in Brevard County, FL that accepts Medicaid. This is the state of healthcare. Watch BlledOut on HBO-- Steven Burrows, former LA actor/director/producer who filmed his journey to get his mother adequate care after she “bled out” for routine hip surgery. It’ll shock and disgust
you. https://www.burrowsofhollywood.com/bleed-out/
This is so disturbingly ACCURATE! And it's getting worse ... I saw big changes from my initial cancer hospitalization in 2018 to the most recent in January 2023. I was completely out of the hospital for 39 months and was absolutely shocked at the difference. And, yes I AM a nurse, a former nurse practitioner, as well as a current Clinical Instructor for BSN & MSN students. Even so, I make sure my husband or adult daughter (also a RN) can stay with me during hospitalizations. Every single time I hear, "good thing you were feeling well enough to challenge 'that', it's outrageous". Breaks my heart that nursing, and healthcare in general, has become so focused on the "CYA" approach to care rather than the patient. Regardless of what is KNOWN to be effective (or not) for a SPECIFIC patient, they rely on the lovely insurance corporations' protocols that work for MOST people until you challenge that care repeatedly. It feels more like you are wearing them down than getting them to see YOUR healthcare picture. ALWAYS ADVOCATE FOR YOURSELF, YOUR PATIENTS, AND YOUR LOVED ONES.
Example - I was told by a 'chief resident' during my last hospitalization that she wouldn't discharge me because my kidney function was "persistently elevated, I'm not comfortable with that". News flash: I have atypical HUS diagnosed after a severe bout of TMA that left permanent kidney damage (all triggered by gemcitabine). My BUN & creatinine haven't been within defined limits in over 4 years. I was feeling fiesty enough by then to reply "If you can get my kidney function to normal levels I'll stay as long as you'd like". Rather than laugh and look at the history even after I explained, she was extremely upset that I challenged her notion. I feel sorry for her future patients.
Your acronym is clever, and so helpful! I think your advice is especially important for women. We’re trained by our families, schools, religions, and culture to be accommodating and not to make waves. So if the medical system is running roughshod over us, our understandable impulse is to submit lest we cause any trouble. But we need to make trouble sometimes!
Another piece of advice I would add, which unfortunately wrecks your acronym, is Remind your doctor or nurse that you are a person. My mom needs to get injections in her eye, and her doctor failed to give her appropriate anesthesia--and then scolded her for reacting to the pain! (Yes, she Transferred to another doctor.) But it would have been useful information for this first doctor to hear that most human beings don’t like having a needle stuck in their eye!
Anyway, thanks for this terrific and useful article!