February 09, 2023

How Do You Prevent Errors in Your Care?


Breast cancer is pink. Colon cancer blue. What color is the ribbon for hospital-associated infections?

Did you know that more people die per year from healthcare-associated infections than from breast cancer? (The stats: 99,000 according to the CDC vs. 40,000 according to the National Breast Cancer Foundation. The CDC number doesn’t even include people who die from medication errors or surgical mistakes.)

Suffering from medical errors and healthcare-related infections isn’t heroic. There is none of the cultural glam factor that’s ascribed to battling cancer, no Hallmark MRSA cards. But I’m still into making medical error reduction the cause du jour.  The best that can happen is that it will save my life.  And it is hugely more comprehensible and quickly fixable than finding a cure for cancer.

At my recent University of Chicago appointment, a piece of paper called “Speak Up” was sent to my home before the appointment, a nurse read it to me before the doctor entered, and it was posted in plain view in the exam room. The paper said, If you feel comfortable, please feel free to:

1. Ask everyone to identify themselves and wash their hands.
2. Have confirmed your name and DOB before taking meds or treatment.
3. Ask your doc or nurse to fully explain labs, tests, or medications ordered.
4. Ask to speak to a clinic manager to address any concerns.

How freaking fabulous. Never before had I felt so encouraged by a hospital to take charge of my care.

Have you ever suffered from medical errors or healthcare-related infections? What other patient safety points would you add to this list? Would you feel comfortable speaking up in this way?

Read tips from Greg, a stellar patient watch dog, in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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  1. alk Says:
    February 9th, 2010 at 12:03 PM

    I once asked a nurse in the ER to wash her hands before working with me. Her response: We have excellent care here and follow protocol. My reponse: Please wash your hands. She did. I don’t care if she was annoyed. I also kick out residents — not for routine stuff. I don’t care if they are in the room listening and learning, just don’t want them doing the work. You gotta stand up for what’s important to you.

    I love that list you received. Love a good hopspital that shows through their interactions with patients that patient care is actually what it’s all about.

  2. Leslie Rott Says:
    February 9th, 2010 at 3:57 PM

    Ever since I got a case of cellulitis - and was hospitalized for it - presumably from a vaccine that was administered incorrectly, I have noticed other inaccuracies in my care. For instance, my doctor re-prescibed medication with the wrong dose, indicated that I needed a seasonal flu vaccine - which I had already received - when I actually needed the H1N1 vaccine, and my doctor’s office recently gave me the incorrect lab order. For the most part, these were *small* errors, which I caught. But all those cases I’ve heard about operating on the wrong person or the incorrect appendage don’t really surprise me. Doctors are so busy and over-committed these days, we have to double and triple check. Afterall, doctors are human, too!

  3. Cathy Bueti Says:
    February 9th, 2010 at 4:58 PM

    First of all I have to say that picture made me chuckle! Seriously though as for this topic….I work in healthcare in addition to being a patient. MRSA and C-diff are running rampant in nursing homes. Part of it I think is that the direct care staff don’t follow proper infection control precautions. I am always making sure I wash my hands before and after each patient I see and glove when indicated. I think part of the problem is how crazily overworked healthcare staff is. And some patients unfortunately cannot question or double check that the staff is doing the right thing. At least not some of the elderly patients I work with.

    When I am the patient I am vigilant about handwashing and gloving …..And I will tell my docs or nurses working with me to do so if they do not in front of me. I actually had a lab tech attempt to take my blood without putting any gloves on and when I asked them to they looked annoyed like I was crazy for even noticing!

    There is so much scary sh** going on in hospitals these days that the best we can do as patients is question, challenge and watch. Be vigilant and assertive enough to say “Please wash your hands”!! Handwashing is infection control 101 and can help in many ways!

  4. Greyash Says:
    February 9th, 2010 at 6:28 PM

    In 1999 I had my gallbladder out - after 8 months of pain and 8 months of no one being able to find the source. It was gangrenous by the time it came out. My temp was 105. I got a staph infection (abdominal abcess) in my gut. I was in the hospital for 28 days trying to cure that. I had a drain in and they had to keep doing CT scans to move it around to make sure it was draining all of it. They weren’t sure that I would live. I did. I din’t sue, or blame anyone, the doctors really fought for my life (they weren’t sure I’d make it a couple times.)

    Seven years later I was diagnosed with metestatic thyroid cancer. One of the first things the endocrinologist I finally hooked up with asked me was had I ever had a large exposure to radiology tests such as CT scans in a short period of time. Sure, 15 in 28 days, does that count? Yep, it does. They think that’s where my thyroid cancer came from.

    So, besides bringing my own file to new doctors (because somehow it is hard to pass my file along), and demanding nurses and certified nurses assistants wash their hands (or use the foam) in my sight instead of outside the door (I mean, I did almost die from staph once already), I also ask which tests are really necessary and don’t get them if they aren’t.
    Yes, I’m probably seen as a difficult patient. I try to be pleasant. I say thank you and am sincere. I thank my nurses at the hospital for my care as well as my CN’s, but if they don’t “foam in and out” or wash hands, you bet I say something.

    I started having terrible migraines after my second neck surgery. Sometimes I need to go to the ER for IV meds for them. It used to happen more often, but I’ve gotten a good neurologist now and he helps me keep them under control now. Almost every time the docs wanted to give me a spinal tap and a CT scan. After the first time I figured out that I could refuse. If I tell them it is a migraine, exactly like all the other migraines I get and I just need pain relief, then they make me sign a waiver (so if my head explodes I can’t sue them) and they don’t make me take the tests. But every now and then there is some young doc that wants to do every test in the book. I tell him my gall bladder/ thyroid cancer story and he re-thinks his view point….

  5. Barbara Olson Says:
    February 9th, 2010 at 10:18 PM

    Here’s proof the Twitter connection works! Great post, Kairol. Thanks for sharing these great practices. When engineers study what makes a process reliable-whether you’re running a chipper-shredder or running a patient care unit-the opportunity to detect an error that has been set in motion is an important variable. An error of omission (such as “not washing hands’) that arises close to a patient is tough to fix because there are few opportunities to catch it. (Clinicians may forget to wash their hands, a simple human error. Or they may choose to bypass handwashing, a risky behavior.) In either case, patient engagement is the last, and sometimes only, level of defense that derails errors like these. (The notable exception is when bar-coding is used. Bar-coding puts another layer between the patient and a clinician who has made a selection error.)

    The speak-up campaign you describe sounds rigorous. I like how visible it is. I had a series of ultrasounds recently. While I was banded (and checked the accuracy both times), my armband wasn’t checked by the sonographer on my second visit, something I didn’t think about until recounting the story later. A visual cue like the “speak up” process you describe would have helped me (and the sonographer) stay focused.

    I’ve read the other comments here, and I suspect it’s hard to accept how often near-misses occur. As the processes used to deliver care become more robust, we may not have to rely on so many “error aversion” actions, especially those that involve patients. (I’ve debated this with patient safety experts in the past.) But healthcare remains very reliant on the ability of humans to perform perfectly (not a realistic expectation). In the meantime, I think you’re on the right track when you “speak up.” BTW: “Speak Up” is actually a campaign sponsored by The Joint Commission. Not sure if what you experienced used TJC materials, but here’s a link to the website: http://www.jointcommission.org/PatientSafety/SpeakUp/

    Thanks again for sharing this!
    - Barb

  6. Rebecca MacKenzie Says:
    February 9th, 2010 at 10:32 PM

    Oh man, you really got me yelling out loud with this one. I got MRSA from the hospital AND had double the bills after they gave me medicine that I was clearly allergic to. I am severely allergic to sulfa and doctors prescribed it to me TWICE with my MRSA infection. So, not only did the craptards make me sick, they gave me two horrible allergic reactions.

    What do I do? I now do my own research. I specifically ask if medicine has any of the items that I’m allergic to and I stress my allergies. Then, I go home and research it myself before I take it. I think it’s insane that I have to do that much, but it is so true that I am my best advocate.

    I also make sure that hands are washed, and even make sure syringes are just opened out of the package. Call me paranoid, but I can’t afford triple the bills and I can’t control my cancer, so I will certainly make sure that the things I can control are kept in line.

  7. Kairol Rosenthal Says:
    February 9th, 2010 at 10:35 PM

    Thanks everyone for sharing your stories. Kinda ridiculous how little we talk about patient safety in the cancer and chronic illness community. I think it is one of the most proactive important ways we can exert a modicum of control over our health. And thanks too for the addition of the word “craptards” to my vocabulary.

    Great to have your comments Barb. You are a smart cookie. It doesn’t seem like the Speak Up program at University of Chicago is related to the one from the Joint Commission. But thanks for the link. There are so many useful tips and brochures on the Joint Commission site that I can’t wait to share with other patients.


  8. Jetty Says:
    February 9th, 2010 at 11:24 PM

    My husband get so angry when he sees that commercial (might not be on anymore) where the doctors have a musical moment where they talk about how you have to ask questions of your doctor because they cant “read your mind”. When I was sick, they refused to listen to me about my reactions and I ended up in the hospital for a week with a non dropping fever, and after that my husband became incredibly active in checking all my medication first and TWICE we had to call and complain to the Pharmacy for filling two scripts that combined could have killed me, they blamed the Dr, we called the Dr and they blame the pharmacy. Never any responsibility so you have to take it in your own hands and that is sad. You should not have to tell your doctor to wash their hands! Love Love Jettychan

  9. Tabstar Says:
    February 10th, 2010 at 2:32 AM

    When I went in for my liver lobectomy and resection, I was shown documents that I was to sign with the description of the surgery that was to be performed on it. I read it and then I noticed that something was missing. It only said a L lobectomy and R 4/5 7/8 resection.

    I pointed out that my gallbladder was being taken out also, but that wasn’t on the form! The Doctor said, “oh, well we’ll have to wait and get that sorted out…” so whilst laying on that horrible metal slab, arms laid out for the IV etc. the Doctor made a phonecall, came back to me and said, “You’re right, but the specialist has to come and sign it! And they aren’t allowed to have L and R either”, so he put LEFT and RIGHT corrections and then after the specialist came down to the ER and signed, I signed.
    Everywhere I went, I was asked my name and dob and what I was doing there. It got annoying but at least there were no mistakes!
    Imagine if they had gone in and NOT taken the gallbladder and might not have realised and then had to go back in later and take it! Ooouuchhh!!

  10. Laura M Says:
    February 10th, 2010 at 11:59 AM

    Not actually for me, although I have caught little sceduling errors along my path. But a few years back, a friend had an irregular heartbeat after his colon was resected for diverticulitis. The surgeon was prepping him for a pacemaker implant when I asked if the slow/irregular heartbeat could be a side effect from any of his meds.

    The surgeon got very impatient and said no. But when we talked to the anesthesiologist, he said he’d check. Turns out one of the meds was causing it. Took him off and voila’! No pacemaker needed.

  11. Tara Says:
    February 10th, 2010 at 4:26 PM

    My hospital has those speak up type signs, signs encouraging patient rights, and signs that say they strive to provide excellent care and “have we answered all your questions?” So you would think the hospital would be receptive to when a patient brings up concerns and maybe make less mistakes. Not so! And they hate when I ask questions. I get so mad at the hypocritical signs!

    After I noticed several mistakes and was suffering as a consequence, I began questioning/double checking alot, and was often dismissed by the staff, only to be proven correct later. I also caught wrong dosages, drug interactions, etc.. So like others have said, it’s sad, and I had no idea just how proactive you have to be, but do research when you can, repeat allergies, check for interactions, and double check what they are giving you/doing to you.

  12. alk Says:
    February 10th, 2010 at 8:24 PM

    One more thing, I think it’s also important to correct your medical records. My medical notes from the surgeon who performed the total thyroidectomy had in his notes that my sister had thyca as well as me. In fact it was my first cousin. I don’t wish cancer on anyone and don’t want a record saying my sister had thyca when she doesn’t (although she does have graves- 3 generations of women on my mother’s side of the family have different thyroid issues, but just 2 of us w/ cancer) So I faxed the dr and asked to have it changed. I don’t want that inaccuracy in my records. Don’t want to connect my dear sister and cancer. Reminds me I have to follow up and make sure they changed that….

  13. Pat Steer (Gaelen) Says:
    February 10th, 2010 at 9:46 PM

    Three surgeries, 75+ infusions, five hospitalizations since 2000 - oh yeah, there have been some mistakes. Some I’ve caught. Some, I haven’t been in a position to catch. I was given Benedryl as an infusion pre-med, and then I would then sleep through several IV bag changes. The first one or two bags hung were (usually) right; the intervening ones? I hope so…

    The first surgery, an attempt to do a liver resection, I received an IV anti-seizure med as a precaution because I couldn’t take Keppra orally. All I remember is asking the nurse what she was hanging now. About 4 hours and an emergency CT scan later, I woke up - sort of. Those hours are just gone - but oddly enough my chart doesn’t indicate how severe my reaction way. Same surgical recovery, I was on a PCA pump with pain meds - and the liver resident told me I was ‘overdosing myself’ and was ‘using the pump too much.’ Um…no…the only way a patient can overdose on a PCA is if the doctor writes the baseline dose for too much drug, or sets the PCA timer too short. That would be her mistake, not me overdosing myself!

    It helps to remember that the NYC hospital I go to is a teaching hospital. And I joke with all of them (when I’m up to joking) that for a living I used to teach vets and scientists how to do procedures - and that my rotations were always the toughest. I have no problems questioning a doc or nurse about what they’re doing. The issue is when I’m NOT capable of advocating for myself. It’s one thing to ask about hand-washing or my ID when I’m getting the IV for a CT scan contrast. It’s entirely another thing to be my own advocate when I’m so ill I’m not really aware of what’s going on around me.

  14. C Says:
    February 11th, 2010 at 1:26 AM

    My story is about trusting your gut instincts.

    When I went in for my thyroidectomy, I met the anesthesiologist for the first time as I was being prepped. He did not look at me, did not sincerely engage with me, and seemed extremely distracted like he was going through the motions. I had a bad feeling about him as this was happening and I pondered walking out, as I had not been medicated at all yet. But I went through with it, with my first memory being the most extreme, horrific pain I have ever felt in my entire life. My next memory is someone talking about how the IV line failed during surgery and I woke up too soon. I opened my eyes and saw someone struggling with the line, then switching arms. By this point I was crying and asking for help, while being ignored.

    Needless to say this has fucked me up permanently (PTSD) and I basically freak out now anytime there is the tiniest shred of evidence that I could have cancer again.

    The moral of the story? If you have that unpeaceful, uneasy feeling about your care or anyone involved in it, trust it. Having surgery that day was not 100% necessary for me at all, besides the fact I had already waited a month to have it and I did not want to wait anymore. That was one of my fleeting thoughts when I decided to stay.

    To wrap this up, I complained to the hospital and when I ran into the expected brick wall there, I had the doctor investigated by the state medical board. Nothing happened of course!

    I received a number of amusing explanations as to why this happened, none of them true based on what I originally overheard when I came out of it. But the thing that stood out the most to me, is that this has been branded as an acceptable error, despite how easy it would have been to catch it and take care of it without my knowing anything had ever happened.

  15. LD Says:
    February 11th, 2010 at 12:06 PM

    Please ask your doctors/nurses/whoever to clean their stethoscopes, with an alcohol swab, in front of you.

    Doctors NEVER clean their stethoscopes, just go from one person to another forever!!

    And, if they’re wearing a tie, it’s a massive germ collection and should be tucked into their waistband, not hanging over your precious body or face!!

    Thanks for the tips, proactive is the only way to be.

  16. Kairol Rosenthal Says:
    February 11th, 2010 at 12:58 PM

    Great stethoscope and tie advice!

    Tara - I agree that the “we are here to help you” posters around hospitals make me want to vomit. Some of them are posted because of regulation, some are posted by the PR branch of hospital admin. They feel like an insult. The posters that I saw, however, had zero praise for the hospital and absolutely no customer service lingo. It seemed to really becoming from a place of smart patient safety. There were no vague “have we helped you questions” but specific questions about whether the patient comprehends procedures and medication and the title of the person to speak to if you needed help. This campaign rocked. They might need to hire me as their spokesperson!

    C - Sorry to read about the hell you went through. Your comment raises an excellent point. I don’t think it was your gut alone - you seemed to have engaged your eyes and ears to make some astute observations. It’s a great reminder to me to look and listen to how medical staff are conducting their business. Keen observation is key.

    I had a horrible surgical experience that left me with PTSD around anesthesia and outrageous fear of ever having surgery again. Well, I had to have surgery again. I put it off for a long time, but cancer is cancer and it had to come out. When I got to the hospital I asked to meet with the anesthesiologist. I told him about my problems the last time.

      I asked him for what specific steps he could take to make sure it didn’t happen again. He told me specifically what he would do and how it would result in a different outcome.

    Yes it helped that he was a total sweetheart with a french accent, and literally held my hand while he spoke to me. My experience the second time around was totally different. At one time I had considered going to therapy for my surgery PTSD. It looks like what worked for me was going through it a second time and having a more positive outcome. I hope you never have to have surgery again, but if you do, remember it is possible to have a different experience. I’m living proof!

  17. C Says:
    February 11th, 2010 at 1:43 PM

    Kairol, When I have imagined myself being in a situation where I have to undergo some kind of surgery (I’m only 30, odds are I will have other surgeries), I have envisioned the game plan that you described.

    I did go to therapy for mine, but it was CBT. I also conducted my own version of exposure therapy by walking down the hallway they wheeled me through afterwards and getting as close to the PACU as I could (the door) until I didn’t panic anymore. I wouldn’t say I am better or healed but I am a lot better than I was.

    I am very observant; my endo described me as “attentive times three” in her notes and this was before the PTSD!

  18. Kairol Rosenthal Says:
    February 11th, 2010 at 2:05 PM

    C - You are remarkably brave. I might contact you for a quote next time I write about handling PTSD. I’m really amazed by what you have done to face your situation. I don’t know that I am that brave.

  19. carolbe Says:
    February 12th, 2010 at 5:23 PM

    I took a purple Sharpie and labeled my breasts YES and NO before my mastectomy.

  20. ThyCaGrrl Says:
    February 12th, 2010 at 5:24 PM

    I second what others have said about being an advocate for yourself. I had a bad experience many years ago with a health-care office staff member not following all the required insurance pre-requisites (but saying that he had) that resulted in a big medical bill I had to pay. That experience taught me to read everything, verify everything, research everything and write everything down.

    I was lucky that that harsh awakening involved only money (and not my health). In the years since, I’ve had several scary “OMG what if I had not caught/read/questioned that?” moments. The biggest was after my thyroidectomy when I requested copies of the pathology reports. My slides had been sent to Johns Hopkins for a second opinion (standard procedure for my endo’s office). I got copies of both pathology reports from both my surgeon’s office and my endo’s office.

    Three problems: 1-The JH report had the first page of another person’s report attached to mine. 2-The JH report had the wrong date listed on the slide for my thyroidectomy (not a big deal at the time, but I was worried about it being needed for comparision or something like that in the future and their not being able to find it because it was misfiled.)

    3-The report I received from the surgeon’s office looked a little different from the report I got from my endo’s office. As it turns out, my endo’s office had received a shorter summary report, for some reason. I faxed them the longer report, along with a detailed cover sheet pointing out the errors, noting that the longer report mentioned tall cell features, and asking if the RAI dosage would need to be adjusted. My endo called me 15 minutes later and confirmed that yes, that bumped me up to the next level of reoccurance risk and yes, my dosage of RAI would need to be increased. !!

    So in addition to the other great suggestions mentioned by other commenters, I would add “get copies of all reports/test results and read them” to the list. I would also suggest:

    *Requesting the package insert from the pharmacy the first time getting a new medicine filled. That’s got more info that what’s listed on the usual pharmacy printout.

    *Having a written list of medicines you’re currently taking (and dosage, etc.) and a written list of past surgeries and health problems. That way I don’t have to try to remember from scratch each time I’m filling out a form. I just pull my lists out of my purse (and give them to the office staff for them to photocopy or work off of when they’re updating their electronic medical records.)

    *Having a trusted friend or family member stay with you while you’re in the hospital, if at all possible. My ex-mother-in-law was an absolute godsend when I was in the hospital for a week following surgery (non-thyca related) and too hazy to concentrate on what the nurses were saying.

    Thank you so much for this blog, BTW. I’ve been lurking for the last couple of months now.

  21. Lucie Says:
    February 14th, 2010 at 9:38 PM

    I got cancer because of medical mistakes. Two misread tests and ten ignored visits from me to say something was wrong. When it was diagnosed, finally, I was 27 and I found out it could and should have been prevented:( Its difficult to believe a medical professional after that.

  22. anonymous Says:
    February 14th, 2010 at 10:17 PM

    My personal mantra is: Assume nothing and trust no one. It’s not that I think health care professionals are careless and lazy, it’s just that there’s always some potential for human error.

    While I think the “speak up” campaigns are great, I worry they send a false message that if only you do XYZ, you won’t fall victim to an error (and by extension, if something goes wrong, it’s your fault because, well, you didn’t speak up).

    I’ve had a medical injury that was severe enough to require corrective surgery. For a long time I blamed myself, feeling that I should somehow have been able to prevent it. Now, of course, I realize that it was such a rare and unusual situation, there was no way I could have anticipated it. And at some point the clinicians have to take responsibility for exercising bad judgment. I don’t know how you protect yourself against this, other than just being very vigilant and not taking anything for granted.

    I get copies of everything. I research on PubMed and other reputable sites to make sure my health care falls within the appropriate standards. And I really have learned to listen to the little voice inside my head when it tells me something isn’t quite right.

    This is for carolbe: There’s some good research out there that indicates patients *should not* mark their own surgical site, at least not outside the presence of the surgeon who’s doing the actual cutting. The surgeon must be fully engaged in the process and mark the site himself/herself. Bilateral markings can easily be covered up by surgical drapes and lead to confusion in the OR. I’ve heard that site markings can sometimes get blurred or rub off - another reason not to do it yourself the night before your operation. And if you write “no” on a body part, and the hospital’s policy is to have the surgeon sign the site with his/her initials and your surgeon’s name happens to be Norman Oliver, what happens then? Bottom line is the safest practice is for the surgeon to sign the site. I personally think consumers need to become more knowledgeable about safe practices, mainly so we can be better partners and so we can quickly speak up if someone takes a shortcut or misses a critical verification.

  23. MJ Says:
    February 24th, 2010 at 1:07 AM

    Hmmm … Medical errors & omissions - my Aunt “Spoke Up” about her abdominal symptoms for years, and was shoo’d away with no more than a roll of Tums. By the time the Dr. finally examined her, she had terminal stage 3c ovarian cancer. She passed away in July. I miss you Aunt Tinker :(

    On the more humorous note of “unsafe” practices, when I pointed out to my Dr. that she was prescribing me an antibiotic I was allergic to, as noted in the file she was reading, her reply was, “Well, maybe you’re not anymore!” Seriously.

    It’s probably obvious by now, but I won’t be chiming in on Kairol’s earlier blog post about “positive” experiences with healthcare professionals.

  24. JohnL Says:
    August 12th, 2010 at 1:01 AM

    This goes beyond the obvious hand washing, med mix-ups and document errors, but it requires educating oneself about their own cancer, the tests, scans and biopsies that are performed, and learning the medical jargon. That can be a tall order for some people depending on their education, general intelligence (IQ), access to medical reference materials, ability to learn complex jargon, and knowing how to read/use medical studies and references properly. It’s my health and my life that’s in the balance, and therefore it’s my responsibility to be my own best advocate to ensure proper care and treatment.

    I have my own medical file now that includes all test, scan and biopsy results. By educating myself about my cancer, the surgery (a modified radical neck dissection), how PET/CT scans work, a little about what the imagery means, and how IMRT radiation is generally used to treat head/neck SCC, I’ve been able to have intelligent conversations with all my doctors about what we’re doing, where we’re going with it, and most important, why (the rationale). We were initially headed for a much larger radiation field on my head and neck which would have required a PEG, daily injections to save remaining salivary glands from total destruction, and pills to keep the injections from making me nauseous during radiation (while under a tight fitting shoulders-up mask to prevent movement during IMRT). We were assuming the primary source of the SCC was only suspected, but not sufficiently confirmed. A simple question about how the pathologist’s biopsy report on all the stuff that was removed during the radical neck dissection, and exactly how it was worded caused the radiation oncologist to call the pathologist for clarification, and have another discussion with my ENT surgeon. It was a subtle, easily missed nuance in the wording, and I blame the pathologist for how he wrote it (could have had greater clarity), not the radiation oncologist. Even so, English is inherently an imprecise language, in spite of very specific professional jargon use in an attempt to eliminate ambiguity and make the language precise. By going through the pathology report together in some detail, we jointly caught the subtle ambiguity.

    That clarification changed the radiation strategy substantially by nailing down with much greater certainty the primary source of the SCC that had metastasized to regional lymph nodes. The much wider field would have also done the job just as well, but the more massive side-effects from the overkill (much wider field) were greatly reduced by a radiation field that specifically targeted the areas it needed to. Even though it was still a big challenge to get through, the more specifically targeted radiation plan eliminated the need for a PEG (just barely) and we didn’t need the daily injections or pill to mitigate the injection side-effects. Recovery from the IMRT was easier and faster afterward.

    Bottom Line: it resulted in an equally effective radiation therapy with much less morbidity, both temporary and permanent.

    It’s unlikely that everyone is capable of (or even desires) comprehending and critically analyzing with their physicians what they are doing and why. Worse yet, my parents’ generation was taught that medical doctors are Gods to be revered and never, ever questioned about anything they say or do. Sadly, some of that attitude toward doctors persists. Unfortunately, one won’t always get maximum efficacy with minimum morbidity unless they make some attempt to manage their own medical treatment and care with their doctors.

  25. Kairol Rosenthal Says:
    August 12th, 2010 at 7:19 AM

    “Even so, English is inherently an imprecise language, in spite of very specific professional jargon use in an attempt to eliminate ambiguity and make the language precise. By going through the pathology report together in some detail, we jointly caught the subtle ambiguity.”

    John - I really appreciate your comment. I have learned with the simple ability to read carefully and question basic logic, I have greatly changed the course of my care and avoided unneeded treatments that had a huge long term side effects.

    You are right, not everybody has the time, skills, or desire to engage in this detailed, logical thinking. But I have met many who have and they range from people who are engineers to those washing dishes for a living and only have a GED. Health literacy is a fascinating subject. Until we find a cure for cancer, I believe that greater health literacy is one of the next best tools a cancer patient can have to change the course of their care and hopefully their disease.

    Wishing you all the best,


  26. Bee Says:
    January 31st, 2011 at 6:53 PM

    My experience have not been so plesant with an opthomologist and yet I am being told that everything that was done to me was correct. I went for my yearly eye examination and the wrong eyedrops were put into my eyes. A very long lasting dilating drop was put into my eyes, I have complained to the doctor’s office as well as the hospital and they have blown me off. My records are incorrect I was sent a part of someone else’s file and they said that was ok too. Also, I left the hospital with a needle that was used for an IV was left in my arm. That is just my story, my minor daughter has one too. She was given a medication called Methotrexate for an illness that she did not have. The doctor said she had Juvenille Rheumatoid Arthiritis, I begged him to test her and he didn’t it wasn’t until she started to losing her hair is when I told him I would not give her another injection until he test her for what he said she had. She was 6 years old, then her next experience was at the dentist office she was told she needed a root canal, the insurance co. was notified and she simply did not believe she needed it, she was right. I contacted the Med. Board and the Dental Board and they said that they did nothing wrong. It is terrible that people have no one to stand up for them I guess some of these doctors can take your life and they have done nothing wrong. So very sad and I guess I am considered a difficult person not only a patient because I will advocate for myself and my children no matter what it is because no one cares about you so you have to take care of yourself!

  27. Do Not Speak UP! Says:
    November 30th, 2011 at 5:33 AM

    Never go to a hospital or doctor’s office alone. Always obtain legal council prior to obtaining medical care and let the staff know that you will not tolerate abuse. Show them your lawyer’s card.

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