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