“This Might Hurt A Little” — Procedural Pain

First, do no harm?

This is not what I wanted to write about today. But yesterday, I woke up during an outpatient diagnostic procedure, began to feel stabbing abdominal pain, made the surgeon and clinical staff aware of this, and nothing was done about it. I was in a haze induced by the conscious-sedation cocktail I’d been given — Versed, Fentanyl, and, interestingly, Benadryl — so perhaps I was unable to articulate my symptoms as clearly as I might have. But still, I think saying, “That hurts!” and grimacing should have provided enough clues.

I was receiving a colonoscopy at the time. As far as I was able to determine, it appeared that the general exploratory part of the scope had been completed. I woke up while the gastroenterologist was removing one of several polyps that he found in my descending colon, the portion that runs down the left side of the abdomino-pelvic cavity. As a clinician, I found it interesting to see the scope screen in front of me, and to see how the polyps were caught by means of a surgical lasso (snare) and ‘burned’ off (cauterized) in essentially one step. But as a patient, I felt an abrupt stab of localized pain during every other excision. It is commonly asserted that polyp removal is not painful because the colon lining does not have pain receptors. But part of the procedure involves pumping carbon dioxide gas into the colon to allow for a clearer view, and this gas can cause abdominal bloating, cramping, and pain. Well, in my case, it certainly did. A lot. I felt like I’d been kicked by a horse. Several times. And it took several hours to go away.

Following on the heels of a week-long non-fiber diet, two days of drinking a few gallons of laxative prep, over thirty hours of consuming only clear liquids, plus interrupted sleep and no liquids the night before, let’s just say that I was pretty ragged by the time I left the hospital yesterday. I’d been looking forward to eating a normal meal after all this, but I had no appetite, couldn’t stand up straight because of abdominal pain, and ended up spending most of the day in bed, with a large heating pad over my belly. I survived, yes. And I feel better today, less haggard thank goodness, but still not quite normal.

My reason for writing this is that I do think, in the 21st century, it is unnecessary and utterly pointless for patients to endure so much pain during outpatient procedures. As far as endoscopy and colonoscopy goes, it is still common in most countries not to provide any sort of sedation or pain relief during the procedure. In the U.S., it’s the standard of care to do so, and yet, I’ve heard countless stories from American friends about inadequate sedation and pain management during GI procedures, as well as during many of the other outpatient diagnostic and excisional procedures we have to endure as cancer patients. And I ask myself why this is.

Pain is harm.

Here’s a typical story, one I’ve personally heard far too often. A woman feels a lump in her breast, goes to her primary care doctor, gets sent for mammogram, which is positive, and gets referred to a breast cancer doctor.

So, already beset with anxiety by now, she goes to the breast cancer doctor, who does a physical exam and an ultrasound that confirms the presence of the lump. The breast cancer doctor then says she needs to take a biopsy, hauls out a ‘fine-needle’ biopsy gizmo, a misnomer for what in truth looks like a large syringe that one might use to tranquilize a horse, and without further ado or topical anaesthetic, jabs it into her patient. Or, also not uncommon, she administers a local anaesthetic, and jabs the biopsy needle in without waiting for the anaesthetic to anaesthetize. And guess what? It hurts like hell. Big surprise, huh? Nothing like heaping trauma upon trauma.

And this is only the beginning, the intro to what is a frightening experience that may soon become a disillusioning one as well, as we experience endless procedural poking, prodding, jabbing, burning and poisoning, all too often administered with a baffling lack of compassion and plain old common sense.

And it’s baffling for one fundamental reason: causing needless pain and anxiety is just not good medicine.

I found an excellent article outlining clinical practice recommendations for procedural pain management, published in the July, 2011 issue of Pain Management Nursing, and posted on Medscape, that was put together by the American Society for Pain Management Nursing (ASPMN). In it, the authors assert that any and all of us ‘who undergo potentially painful procedures have a right to optimal pain management before, during, and after the procedure and should have a plan in place […] before initiation of any procedure.’ [If the Medscape link doesn’t work, you may find a PDF at this link. If you’d like a PDF of the references, please leave a request in a comment below.]

You would think it should be common knowledge in healthcare by now, but apparently it’s not universally understood that pain is, in fact, harmful. The ASPMN paper states:

Pain can cause both immediate and long-term harmful effects that do not discriminate based on age, gender, race, ethnicity, or socioeconomic status. There are limited data regarding […] the effects of procedural pain; however, it stands to reason that the effects of acute pain would apply to procedural pain. These effects consist of a variety of physical, emotional, behavioral, cognitive and psychologic manifestations, including fear, anxiety, anger, […] refusal to consent to further procedures, and distrust of the health care team, and may effect overall economic, social, and spiritual well-being.

Well, duh. Pain is stressful. It robs our bodies of the energy we need to heal, and when it is not adequately addressed, it robs us of trust and confidence in our healthcare providers. Several studies have demonstrated that post-surgical pain can tax our immune systems and throw our neurotransmitters out of whack, which can lead to increased infections, poor wound healing, and depression. For people with cancer in particular, as painful procedures pile up, it is crucial to effective treatment outcomes to prevent, mitigate and relieve as much procedural, treatment or surgical pain as possible.

So, why aren’t universal standards for procedural pain management practiced throughout the healthcare community? It certainly is not because these standards aren’t known or readily available to clinicians. Standards for the use of conscious sedation, topical anaesthetics, and local anaesthesia for outpatient medical procedures and surgeries are well-documented. Another excellent publication, Patient Safety and Quality: An Evidence-Based Handbook for Nurses, a book published by the U.S. Agency for Healthcare Research and Quality, devotes an entire chapter to pain management. In it, the authors assert that

Lack of adequate assessment and inappropriate treatment remain the major factors of undertreatment of pain. There is ample evidence that the appropriate use of analgesics — the right drug(s) at the right intervals — can provide good pain relief for the majority of patients. Thus, institutions should place their money and effort on improving these provider behaviors (assessment, prescription and administration of analgesics).

Okay, the nurses seem to get it. What about the doctors? With due apologies to my physician friends out there, who include a number of surgeons, I’ve had frequent cause to suspect over the years that a lot of people who grow up to become surgeons were the sort of children who pulled the wings off flies. Yet, survey studies have found that physician perceptions of procedural pain do in fact match up with patient perceptions of the same procedures. But the problem seems to be whether physicians perceive the pain that their patients are actually feeling when they’re feeling it. One study published in Academic Medicine found significant discrepancies between physician perceptions of their patients’ suffering and their patients’ own descriptions of suffering, concluding that physicians needed better training in their evaluation and communication skills. But another study, published in Psychooncology, found that even with special training, physicians were no better than their untrained counterparts in communicating with and helping their cancer patients through their ordeal.

Where does that leave us?

Once again, it seems that the onus is often quite literally “on-us,” the patients, to ask for what we need. CancerCare.org recommends, as many others have, that we learn to be prepared consumers of healthcare. Particularly with cancer treatment, it helps to bring someone with us to our appointments, prepare a list of questions, take notes and/or record the visit, and keep asking questions if we are not sure we understand something. Often, nurse navigators or nurse practitioners can spend more time with us and address our concerns more thoroughly. In a previous post, Delayed Gratification, I listed some resources for patient self-advocacy. They are repeated at the end of this post. The above-mentioned Agency for Healthcare Research and Quality also provides some videos that may help you improve communication with your doctors.

Before yesterday’s adventure, I had spent what I thought was ample time getting my questions answered by the nurse practitioner at the GI practice that was in charge of my colonoscopy. But it’s difficult to anticipate everything before every procedure. After the pathology results come back, I have a follow-up appointment with her. And once again, as I’ve had to do before, I’ll be providing some feedback about my experience yesterday, in the hope that it will improve a future experience for myself or someone else. However, I do hope that, as long as my polyps biopsies are negative, I won’t have to do this again for ten years! Live and learn…

In the meantime, please feel free to share your stories here. It always helps to know you’re not alone.

A few related blog posts and links:
The Price of Silence, by blogger and author Beth Gainer
Not Ideal, by blogger and author Sarah Horton
Patient Advocacy: When Disruption Creates Win Win Win, by Trisha Torrey, Disruptive Women in Health Care
Health Care Self-Advocacy: Be the Squeaky Wheel, by Care2 Make A Difference
The Patient Empowerment Network, by Esther Schorr
The Patient Power Blog, by Andrew Schorr
The Prepared Patient Forum, founded by Jessie Gruman, PhD

This entry was written by Kathi, posted on Saturday, January 07, 2012 at 07:01 pm, filed under Diagnosis, Recurrence, Screening, Health & Healthcare, Pain & Neuropathy, Surgery & Reconstruction and tagged , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

13 Responses to ““This Might Hurt A Little” — Procedural Pain”

  1. Hi Kathi,

    I am so saddened by the sh*t you had to endure. Awful, awful way to practice medicine. Barbaric. I’m so sorry for all you had to endure. It’s hard enough to have endured the week prior to the procedure, but to have pain and it not being addressed is downright cruel.

    I hope all your results are good and you are recovering from this awful experience. I will be writing a future post about pain with my stereotactic core biopsy, which was a nightmare, in a future post.

    Thank you for mentioning my posting as a reference.

  2. Reading this brings back memories of that incredibly painful hysteroscopy I had during which I nearly passed out from the pain and strained so hard in the stirrups that I’m pretty sure I bruised the sides of my ankles. I hadn’t been warned that the pain would be so severe. I did report the experience to the hospital and told them they needed to do a better job of preparing patients for the possibility that at least some women find the procedure extremely painful. I don’t believe in using the word “traumatic” lightly but it was traumatic. I’m really sorry that you went through that, K.

  3. We all have at least one of these nightmare stories, it seems. My worst was definitely the mammogram-guided wire localization that required a 2nd wire, right before breast surgery. The mamm tech had already savagely bruised my breast with the paddles. Then the radiologist missed the 2nd wire spot with the topical, stuck in the wire, and I passed out from the pain. When I woke up, I threw up bile. It was just lovely. And I still had to get half my breast chopped off…

    Rock, I seem to remember you telling that wretched story before when it happened. Makes me break out in a cold sweat reading it again. A definite ‘pulled the wings off flies’ doc you had, I’d say.

    Oh, gawd, Beth — the lovely stereotactic biopsy. Another opportunity for torture. Is it any wonder that one starts thinking that some doctors are sociopaths in white coats??

  4. After reading this post I was going to rehash in detail my two wire localizations, but you beat me to it with your horrific description. To think I had this done twice, with three needles both times, without anything more than some lido, which was a freaking JOKE… I swear those two procedures were the worst part of the entire cancer experience. I begged, BEGGED for something, anything, to help me check out. After being told no, I went ahead and self medicated before the second event (I had several unsuccessful lumpectomies) to prevent a mental breakdown during the localization, which nearly happened anyway. I remember having something close to an out of body experience in order to protect my psyche after the doctor pulled one of the needles out and restuck me without numbing the new area. (And that story, as I recall it now, needs to go on the blog.)

    If men had needles stuck in their d!cks prior to prostate surgery (or something along those lines) you’d better believe doctors would be required by law to administer generous helpings of Versed prior. I know modern medicine saved my life, but much of it seems so archaic to me, your stories included.

    Hope you’re on the mend now and congrats on getting the ten year pass.

  5. Praelior, I swear that wire localization is one of the most needlessly barbaric things about breast surgery. And you are so right about male doctors. Some of them are complete asshats.

    I really wasn’t mad at the radiologist. She really tried. She got the local and topical applied okay for the first wire & I didn’t feel a thing. But the whole thing was so awkward, with her bending herself into a pretzle to try to reach over & through the window in the mamm paddle, that there was just no room to aim the local/topical anaesthetic very well. She felt wretched that she’d missed. I woke up after fainting with her smoothing cold clothes on my face & neck. But I totally agree that they should give us something beforehand, like Versed. It’s complete & utter crap. There has to be a better way.

  6. Kathi,
    Great post although I’m sorry you had to write it – due to experiencing pain during your colonoscopy prodedure. I so agree with you, “causing needless pain and anxiety is just not good medicine.” Seems like a no-brainer and yet…

    This post reminded me of the electro-cardiogram (I think that’s what it was called) I had two weeks after my bilateral mastectomy. I had to have it in order to see if my heart was strong enough to endure the “chemo poison.” The pain was excruciating at times and I had to finally tell the technician to stop and I walked out. I felt bad. The tech felt bad. Ridiculous to feel guilty for having pain and yet that still happens…

  7. Kathi, your blog is a definite island of sanity in the chaos that is Western medicine and particularly cancer-related medicine. It is so reassuring to me to read your experiences (not that I want you suffering for my virtual benefit!!) and know that I am not some whiny pain-wimp, as most of my doctors would lead me to believe. (I wish I had ten dollars for every “Really? I’ve never heard that before.” I’ve gotten from a doctor or tech when I’ve said that some procedure or test was painful). My experience with getting my radiation points mapped made me realize that I would never hold up under torture (and could have been avoided if the techs had told me that I’d be keeping my arm in an awkward position for twenty-plus minutes, not just “a few”, so I could have settled it in properly).

    I read your recent post as well and I concur with the “Yikes! And whew” comment completely. Sending many virtual Amazonian spears your way to keep the enemy at bay.

  8. Sandra, when they say, “Really, I’ve never heard that before,” it means “I’ve never bothered to listen to that before and I’m too lazy to listen now and change the way I do things.”

    Thank you for all the extra spears!!

  9. The same thing just happened to me! On the 29th I was getting a colonoscopy and endoscopy and I woke up in the middle of the colonoscopy.
    I was the last patient of the day and I swear they were just in a hurry to push me out the door so they could all get home, under normal circumstances I would be the first one running out the door but other than waking up saying “oww oww oww!” I do not remember a thing. Not dressing, not getting into the car, not the 25 minute ride home. I remember waking up on the couch hours later wondering what the hell had just happened. I realize that the Versed cocktail is pretty good at wiping away your memory but I wonder what was going on especially when I woke the next day with strange bruises that were not there before. AND I am STILL waiting on a Pathology report from what ever the silver dollar shaped thing they removed was.
    I’ve become so disappointed and disgusted with Pain management lately, I don’t understand why the need for such stringent regulations on people with KNOWN, DOCUMENTED, last time I looked, I was a cancer patient out of treatment but still dealing with a multitude of after effects. That Neuropathy they said would go away when the Herception ended, Nope. The joint pain that has doubled with the Tamoxifen, still here and getting worse everyday. I have to get the fluid drained from my knees about every 2-3 months, I am doing what I can to manage all of this and now my docs are telling me that if my Norco script needs to be upped I have to sign “agreements” and take a level test every time I want a refill?? Seriously? I honestly wish that there was some way for them to step into my body for a day, I’m guessing they would curl up in a corner and cry. To bad I don’t have that option!
    Kathi, I love your blogs, they always seem to hit the right buttons! It does help to know I am not alone.. Thank You!

  10. It is sad to hear of all these reports of painful procedures.

    Yes, I worked in health care for decades, but not in a GI setting. I also endured the barbaric procedure of a sigmoidoscopy some 15 years ago. I went in without apprehension, thinking that people have them every day and the doctor will be there to relieve “discomfort.”

    There was no discomfort, but lots of pain. I have not returned for another, nor a colonoscopy. In light of the fact that my health is great, and I have no family history, I don’t waste time worrying about possible cancers.

    I sense that some doctors and clinics are disingenuous about the fact some some people find these procedures outright painful, and others have seemingly no problem. Although I see the benefit of not raising people’s anxiety levels which will only increase the likelihood of pain, I see no reason to lie about the possibility of real pain. When individuals do have pain following such a procedure, then the result is that individual will likely distrust a the health care environment totally. As I do now. And I worked as an RN for over two decades. Now I avoid health care, and rely mostly on my own research. The medical industrial complex in the US is so focused on their own revenues, and not nearly enough on the people undergoing the health care process, which is more and more focused on revenues, and not people’s health and comfort levels.

    Unfortunately, from the many comments I have read about colonoscopies from many different websites, it appears that the medications given to patients are not so much to make people “comfortable” but more in the goal of doing these barbaric procedures more quickly to enhance revenues. I sense that colonoscopies could be accomplished without the use of versed or propofol in more cases if the gastroenterologists would just slow down, and focus on how to the procedures at a pace and in a manner that is aligned towards patient comfort and not towards revenue production.

    And also, I believe that fewer colonoscopies could be done if studies were done using other other tests before resorting to a colonoscopy. Perhaps a Cologuard test could be used on the low risk population. Colonoscopy is regaled as the “gold standard” for colon cancer. I also have a Masters in Public Health, and know that no one test is truly a gold standard, especially if it is not used. A true gold standard is a randomized clinical trial to determine an effective process to use particular tests to enhance beneficial outcomes. And since gastroenterologists would be the doctors who would most likely be involved in such a study, I am afraid that they are all too busy making a LOT of money doing colonoscopies. The median income in the US in 2014 for gastroenterologists in the US is just under $400,000 annually. With the Medicare decision to reduce the reimbursement level for colonoscopies, some 55% of gastroenterologists said they would not accept Medicare patients according to a professional gastroenterologists association. I guess the gold mine of the reimbursement level for non-Medicare patients is more of a factor than providing meaningful health care to those particular doctors.

  11. Thanks for writing, Joeln. It’s crazy, isn’t it? I was just talking to a patient yesterday whose dermatologist performed an excision of a possible skin cancer and didn’t wait for the local anaesthetic to kick in. A patient in pain is a patient who may cause the doctor to make mistakes and even cause injuries. I frequently find myself teaching patients to speak up about these things, and not allow doctors to rush. I agree with you that, with a little planning and less focus on cramming in procedures to increase income, doctors could manage well and better. Oy.

  12. Holy moly that breast biopsy story described my oh so “fun” to use the term lightly, liver biopsy to confirm that I had a “complicated but controlled” breast cancer that migrated to my liver and the thing as it was being done made me feel like I was “stabbed in the stomach with a pair of garden shears.”

  13. Oh, lordy, Valerie. It’s awful, issn’t it?? How are you doing now? I hate hearing about liver mets. 🙁

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