This is the second article addressing medical concerns and questions in the hospital setting. It is in response to a blog forum on the Homestead.org website, discussing the case of a patient, whom I have designated as Ms. S, who appeared to have suffered from probable small bowel obstruction, caused by compromised blood supply to a prior ileostomy site. Her husband, Mr. S, chronicled her difficulties after abdominal surgery involving resection of the compromised intestine, as well as her hospital care.
We return to the story now, at another very important point in the clinical course. Mr. S commented on December 1 that he was concerned about his wife receiving the pain medication dilaudid (hydromorphone – a very potent narcotic used for pain relief for kidney stones and cancer, and after surgery, for example), stating that it was “having a detrimental effect.” At this point, Ms. S had been transferred out of the ICU for a second time. Apparently, there was initial concern among the medical staff that Ms. S was withdrawing from another medication. But Mr. S describes, fairly accurately and with an impressive chronology at least suggesting causality, the effects of dilaudid on her behavior. For example, on December 1, Mr. S entered “… she was awake, alert, fairly calm and quite coherent. She asked the nurse for pain meds, they gave her dilaudi[d] [through her PICC line, a more permanent form of intravenous access], and within about 15 minutes she was having spasms, going delirious, and was incomprehensible in speech.” He goes on to describe in another post that day that Ms. S also had hallucinations after receiving dilaudid. And, more importantly, he recounts that she “never had trouble controlling pain during previous operations using hydrocodone [another less potent narcotic]; didn’t use it very much either, and it never was a cause of this sort of behavior. That was due to other poorly chosen drugs, which were life threatening, such as tramadol [a partial opiate used for pain relief] combined with flex[e]ril [a muscle relaxant notorious for causing drowsiness].” At this point, he “… suspect[ed] that the effects of the dilaudid were mistaken for something else” and suggested to the general audience that he was going to request holding the medication, and monitor Ms. S to see if her symptoms persisted (which would happen if she was withdrawing). He also postulated using another pain medication (hydrocodone) as an alternative to dilaudid, since it had worked so well in the past. Several members in the blog forum respond with posts recounting their own negative experiences with dilaudid, and encouraged Mr. S to request that the dilaudid be discontinued.
I would like to include one of my own opiate “horror” story at this point. My grandfather has had several major hospital stays in his life. He has suffered several heart attacks, a broken back after falling off a roof, and esophageal and gallbladder surgeries. My grandmother often recounts a time after his fall when he was recovering, and was prescribed narcotic pain relievers in the hospital. She came to visit him in his hospital room, and he did not know who she was, even though they had been married more than thirty years at that time, or even that he was in the hospital. My grandfather never took any medicines unless it was absolutely necessary, and even then he would begrudgingly take one or two ibuprofen for his muscle aches, but very rarely. Needless to say, he was completely naïve to the narcotic medication he was receiving. She asked the doctors at that point to stop prescribing the medicine, and perhaps try something less potent. My grandfather received acetaminophen (Tylenol), and was still sore, but not nearly in as much pain as he would have been not having any medication. He was also lucid enough to get up, take care of himself, use the lavatory, and was discharged several days afterward.
To my grandmother’s surprise, she received a phone call from one of the nurses at the hospital a couple weeks after my grandfather was discharged. The nurse stated that she had taken care of my grandfather during his hospital stay, and that he had promised her a calf in exchange for her giving him his narcotic pain medicine (this was before it was discontinued)! Naturally, my grandmother had a few choice words for her, hung up, and never heard from the nurse again. But I recount this story because it shows how potent these medications are, how careful you have to be in taking them, and some of the effects it can have on reasoning and judgment, even in strong-willed, healthy, responsible individuals. Narcotic medications, like everything else in medicine and life, are a tool. They have a defined role, a specific patient population that they are designed to help, and can be of great benefit and offer immense relief – when they are used PROPERLY and after knowing the SIDE EFFECTS and CONTRAINDICATIONS.
Mr. S, like my grandmother, agreed about discontinuing the medications and informed us that he had had a conference with the doctors to discuss the matter. He goes on to note in a blog December 2 that his requests were accepted, and that the medical staff discontinued Ms.S’s dilaudid and lorazepam (or ativan, a powerful sedative medicine in the same class as xanax and klonopin, which can be used as an inducing agent in anesthesia, to help treat alcohol withdrawal symptoms, and is used to stop seizures by quieting neurons in the brain). Mr. S then goes on to share on December 3 that he was formally a psychiatric aide, and was trained to observe symptoms of addiction and withdrawal. He states that he was “soliciting opinions” at the beginning of his entry, then lists a pertinent side effect profile for dilaudid, which includes significant neurologic manifestations. After this, he presents a very informative synopsis for the recent admission from November 24 to December 3, recounting his concerns for the hospital course, especially her transfer back down to the ICU for “withdrawal symptoms,” as well as his requests to nursing staff that she be taken off both the dilaudid and ativan (which was started to treat the aforementioned “withdrawal symptoms”).
I actually learned the most about Ms. S’s hospital stay from this summary. It was very insightful. I hope that he presented this information to the physicians during their conference as clearly as he did here. At this point, as will become evident shortly, I feel that it is important to note also that I am trained as a neurologist. As such, I am usually consulted by other services in the hospital (especially surgical services) for patients who are experiencing “altered mental status” or AMS (whatever that means, but that is my own pet peeve). Causes for AMS are vast, as you might imagine, and range from the relatively mundane (poor sleep in the elderly causing delirium) to the devastating (end-stage organ damage like liver or kidney causing metabolic derangements that are irreversible, or a catastrophic global stroke leaving someone in a persistent vegetative state). In my experiences so far, nine out of ten cases of AMS are one of three things: delirium in an elderly, weakened individual caused by pain, poor sleep-wake cycle (which, in the hospital, is constant), and unfamiliar surroundings; infection (urinary tract infection, pneumonia, bacteremia or early sepsis); or medications. My recommendations, besides imaging of the brain to rule out more worrisome (but less likely) conditions, is to promote adequate sleep hygiene (enough sleep, at the right time), orient the patient to the fact that he or she is in the hospital, check for infections with treatment as necessary, and STOP OR REDUCE (as much as possible) NARCOTICS AND SEDATING MEDICATIONS. In addition to these medicines, patients – especially elderly individuals, should avoid antihistamines and anticholinergics, such as benadryl, for example, which are sometimes used as sleep aids, because they can have a paradoxical effect causing agitation and confusion (due to the relative balance of the neurotransmitters acetylcholine and dopamine in the brain, and the effect these medications have on this balance). There is actually an example of this in the blog forum from December 3, recounted anecdotally.
Mr. S was absolutely right in his observations, concerns, questions, research and approach to the matter. I just wish that it had not taken so long for the symptoms to be attributed to the appropriate source and corrected. Several of the responses to the December 3 post recount similar ordeals, where people had to fight for hospitalized loved ones who were getting inappropriate treatment. There is one in particular, from December 4, which tells how a daughter had to fight to get medical staff to order a brain MRI for her father, who was being treated for alcohol withdrawal with lorazepam, and was subsequently found to have an intracranial hemorrhage. And there is another post that accurately describes some physicians’ mentality about polypharmacy – adding additional medications to treat the side effects of the first, inappropriate drug. As a brief aside, there was a jest (I hope) about giving away some unused prescription medications (in this case, flexeril, a power, potentially sedating muscle relaxant). Please do not take medications that are not prescribed for you. As this blog forum shows us, improper use of medications can have grave consequences. Medications are powerful tools, or dangerous weapons, depending on the hands and thought used to wield them.
And in Ms. S’s case, the inappropriate medications did lead to a further complication – difficulty breathing due to a fluid build-up. It was originally attributed to the ativan, which does have decreased respiratory drive as a side effect. However, when her breathing did not improve after the medication was discontinued, proper imaging and diagnostic testing were done to show “… a pool of fluids [that had] been building in her abdomen, causing breathing difficulty.” It is unclear from the posts what the source of the fluid was – whether drainage from the surgery (serous fluid, resulting from leakage from injured blood vessels, like the yellowish fluid that weeps out of a cut after the blood), or blood from the initial surgery and post-op bleeding. The doctors placed a catheter into Ms. S’s belly to drain the collection and keep it from recurring.
As a result of the missed diagnosis, though, she required assistance with ventilation. I am not sure if it was actual intubation (the tube down the mouth and into the trachea to aerate the lungs) or masked ventilation (like BiPAP, for example, which is a mask hooked to a machine that helps facilitate taking breaths, and is used by people with sleep apnea at night). Based on Mr. S’s observations (which I have not had cause to question yet), however, since she appeared to be responding to Mr. S and was conscious that he was there with her, I have difficulty picturing her being fully intubated without sedation, since the tube irritates the throat A LOT, causes people to gag, and patients usually have to be restrained or completely knocked out if they require it to breathe so they do not self-extubate (i.e., yank the tube out and cause even MORE irritation and potential damage).
There is a lot of concern in his posts, and several other responses again offer encouragement by sharing episodes where loved ones required assistance with breathing, all of which were temporary. A subsequent post informed us that Ms. S was suffering from pneumonia as well. Her body was having difficulty with all of the insults – the residual medications in her system, the fluid collections affecting her breathing, pneumonia (which was probably another cause of her breathing difficulty, since an earlier post also mentioned that she was only on antibiotics at that time), and liver and kidney dysfunction. The liver and kidney are very important in filtering out medications and toxins, both natural and artificial, from the bloodstream. When either of these organs is not functioning properly, toxins and medicines can build up in the body, and cause confusion and encephalopathy.
There one thing that I did not mention earlier, but, while initially viewed as a “duh,” common sense sort of statement, and it is glossed over by many patients and physicians alike. Pain is how your body tells you that something is wrong with it. I know, earth-shattering, right? But bear with me – I am going somewhere with this thought. You get up in the morning and have your typical breakfast, and then you notice that there is pain when you chew. What do you do? Do you say, “Oh, I have a pain,” then go about your day? Well, some of us do, if the pain is transient, mild, and perhaps associated with that canker sore on the inside of your cheek where you bit the side of your mouth. But, in that case, you identified the source of the pain – the canker sore – and diagnosed it as mild and transient, not life-threatening. What if it was not that simple? What if the pain arose from a cavity in your left upper molar? Again, if it was mild, and went away, I imagine most of us would monitor it and tell the dentist at our next appointment (which reminds me…). But what if it was a big, ugly, bleeding ulcer with pus and junk oozing out of it, at the base of your tongue, and you smoke like a chimney and chew two tins daily for the past thirty years, and you have a mild fever and cough? Would you take two acetaminophen to relieve the pain and go about your business? If you are, you would be masking some very important warning signs from your body about the oral cancer that is gestating. But many patients, their family members, and even nurses and doctors, treat pain, and many other new symptoms, like headache, shortness of breath, and weakness, for example, in the hospital without first doing a work-up to know the source. Pain is the body’s alarm system – it should be heeded and investigated fully, instead of dismissed and muted.
We have learned several lessons from the Sandpainter blog forum so far. But I feel that it is very important to point out that the mismanagement of pain symptoms can cause significant complications. Any new symptom needs to be investigated, in order rule out a serious medical condition. It should not be dismissed as mundane and medicated nonchalantly. The difficulties experienced by Ms. S after her surgery did not need to happen, but are unfortunately rather common. Please remember to ask about any new medication – why it is being prescribed and for what symptoms, what is the desired outcome, and how long is it necessary? And if you have any concerns, or feel that the medication side-effects are outweighing the benefits, request that the medication be stopped, and alternatives suggested. You and your doctor are a team, and you need to work together for the best outcome in your health. Your doctor has the medical background and training, and can recommend diagnostic testing and treatments. But you are the leader in your treatment, and you know whether or not the recommended therapy is working. You need to let your doctor and medical team know everything that you are feeling, and what you are thinking. If your healthcare provider is not listening to your concerns, however, you need to fight to make your voice heard. That is what Mr. S did in this case. And that is the most important lesson from this portion of the blog forum.