Level of vocabulary to use with patients

Here's an interesting dilemma I noticed today. How do you talk with patients? Do you use complex medical jargon so that the patient is completely lost? Or do you tone it down to an eighth-grade educational level (supposedly that's the average reading level in the United States?!) so that they can understand it? On one hand, we are accused to being lost in our own ivory tower speaking techno-babble that the "commoners" don't understand - perhaps in an effort to befuddle them and make them believe that we are doing "important things". On the other hand, when we try to use simpler words some patients might feel insulted and patronized. How to choose the right balance?

A good friend of mine was just recently admitted to the hospital for an acute stroke. I won't dwell on the ethics of having someone I know as a patient, but suffice it to say that luckily, as things turned out, I never did round on him nor follow him as a patient. While fortunate from an ethical point of view, this ended up being a detriment in my later interactions with him. You see, they saw some unusual spots in his MRI and wanted to do a slew of additional tests. It didn't help matters at all that, being a very popular guy, many friends and family members were coming by at all hours visiting him. As it turned out, many different family members got only a piece of what was going on, and in the end the poor guy was confused as to what the plan was or why he was even in the hospital! He became to frustrated he ended up having to call up a friend who's another physician at the hospital to try and find out what's going on.

It was at this point that I discovered he was in the hospital, and I had only a brief conversation with him. But it was clear that he was confused as to what he was being worked up for. I managed to track down the resident and told her the issue, and she re-iterated that part of the problem was that she kept explaining things to different people.

Nevertheless, we went back to his room where I stood with the resident who outlined the entire reason for his extended stay and why we were working him up. She used all sorts of technical words and I could see that the poor guy was getting lost. So I waited until the resident left and I asked him if he had any questions. He said he understood most of what the resident said, but the thing that's really concerning for him is why did he get a stroke in the first place, being relatively young for strokes, and what's the odds that he might get another one since imaging showed a history of multiple old lacunar infarcts?

It was one of those rare moments that I felt I could actually help someone as a student - not relegated to simply observing or doing the biding of a resident/intern/attending. I explained the whole diagnostic process to him in detail - starting with the initial MRI findings which were repeated, followed by additional tests including a lumbar puncture to exclude an infectious etiology, and that the fact is we may never know the reason for his stroke. I explained that we were working him up for vasculitis or other hyper-coaguability studies, but I thought that the odds of one of those tests yielding an answer was rather low. We both acknowledged that he's been a heavy smoker (in fact, I just found out right then and there that he had quit for 3 months prior to the stroke - what injustice!) and that smoking cessation probably helped the most in preventing a recurrence more than the anti-platelet therapy they were going to start him on (Plavix).

While I told him that the answer was simply, "We don't know" and we'll likely not know - he seemed to appreciate this much more than the former complete unknown. Sometimes, I guess the fear of the unknown can be great, but understanding helps to alleviate some of the fear even if the final answer still eludes you.

In retrospect, I wonder if smoking cessation was what triggered his stroke? Could his arteries be so accustomed to the nitric oxide present in his blood that the abrupt withdrawal resulted in vasoconstriction and then a stroke? Hmm...an idea for a literature search...

When to speak up

As we were rounding this morning, the patient we saw was clearing getting quite agitated. He was suffering from an exacerbation of myasthenia gravis (MG), and to compound things he has a wife at home with muscular dystrophy. Unfortunately, as physicians, we often focus on the "important" things - items/diagnoses that will kill you. Then, we work on other more symptomatic relief. Yet this patient was not at all concerned about his muscle weakness or difficulty walking - he wanted, above all, to be able to eat! See, his MG had made it difficult for him to even swallow food, and at one point he was even choking on liquids. Despite our best intentions, he felt his concerns about not being able to eat was not being attended to - rather our focus on his over-all well being was clearly getting annoying to him. We figured that the diet could always be changed to accomodate his dysphagia, but for him - food was the main reason to live. In the end, we finally did get there - a compromise was made (no dietary restrictions given - he would choose himself which foods he thought he would be able to eat given his fluctuating severity of dysphagia), but for quite awhile as we stood in his room I felt like saying something - some to smooth the waters and try to act as an interpreter to get him to understand our perspective and vice versa. Instead, I bit my tongue. I didn't want to speak out as the attending was talking with the patient, and I also didn't want to appear to imply that the attending was not making a connection with the patient's true concerns. Sometimes, I get a feeling that they do it on purpose - they do not wish to address those concerns for a specific reason, perhaps because they feel it will steer the conversation towards a route they'd rather not explore or discuss. Othertimes, I think it's just plain mis-communication, often under the umbrella of traditional medicine. It's times like these that I have to consider - just how much of a patient advocate should I become? Do I jeopardize my own educational career to further this patient's interests? What about my own? In general, a happy patient is one who will increase your educational stature/grade/performance, but not if it comes at the cost of irritating an attending. What to do?

Multiple Sclerosis Clinic

Today we saw a number of multiple sclerosis patients in clinic today. For the most part, these were young to middle-aged patients all doing well, coping well with the relapsing/remitting nature of this chronic illness. This - despite the lack of effective treatment or therapy and lots of trials/guesswork. Amazing how strong hope lives in people - is it denial or survival? The responses sure do vary, too - from patients who remain eternally optimistic despite the worst prognosis, e.g. primary progressive MS, to those who overly focus on their deficits to the point of creating new illnesses that lives only in their minds (yet I'll bet are just as real as a true disease process).

Most of these therapies, like insulin-dependent diabetes, require daily or every other day injections. Many bring with them serious side effects. And yet, for many, these therapies, like insulin, are preventative as opposed to frankly therapeutic. They are designed to prevent recurrence of MS (or in diabetes, prevent diabetic comas). For this promise (a promise which may remain unfulfilled - a realization that most of these patients are cognizant of) - they are ready to suffer injection site soreness, flu-like illness, and frequent self injections.

Yet - why should these patients trust us? We spew out data - regurgitate studies, etc., and for the most part the patients go along with the proferred promises - is it with hope on their part, or blind faith/trust? Does it matter?

For that matter - even when told about the serious potentially fatal yet rare risks - why would one choose one drug over another, safer, drug? It's true that one is more convenient - monthly dosing versus every other day, but is that worth the small yet finite risk of certain death from an adverse reaction? The choices these patients make confuse me - I can make no sense out of them, presumably because I can't fathom their motives - be it blind faith in science, medicine, or simple hope or instinct for plain survival?

Spending time with patients

I've alluded to this before, already, that I'm against the constant rush of medicine from patient to patient. Today was another example. We had a patient who's been abused as a child resulting in traumatic brain injury on top of pre-existing cerebral palsy who's actually been doing quite well, married and working a regular job and ambulates around the house but uses a wheel chair outside her home. She came in for an acute exacerbation of her back and leg pain - pain which was previously well controlled by her pain management specialist - likely caused by some minor trauma worsened by her anxiety/frustration/stress. It was rather clear that the majority of her problem lay in coping with the new pain and the accompanying mental anguish. Her moods were rather labile as we later found out - during our interview she was extremely pleasant, sometimes tearful, but always polite. When we returned to check up on her she suddenly exploded in a fit of anger that rapidly became tears of frustration complaining that her pain was not being adequately treated. I felt truly sorry for her, and when the resident left to find a nurse she demanded that I stay by her side. I did feel a bond with her as I had interviewed her first, and could see that what she needed more than any medicine was simply someone to listen to her. She continued to cry and remained anguished despite my attempts to calm her down, and finally the resident called me over and I left her hurriedly. As we walked away from her, I thanked the resident for pulling me away but now I regret my action. I had clearly abandoned her in her moment of need. I used the excuse that my resident told me to follow her as an explanation for why I abandoned her, but that was a very weak excuse. She wanted to call her husband, probably someone who would listen to her and comfort her, but unfortunately my cell phone didn't have reception in the hallway. That was one of the major issues, I felt - her lyingi n the hallway. This is someone who's struggled against so many adversities that she cannot simply lie still. She wanted a TV, a book, anything to occupy her mind. I understood - I would be in similar straights if left to lie in a bed for hours on end without anything to do. We were waiting for a room to open up on the regular floor, and there she would get much more nursing attention than lying in the ER hallway where the nurses are outnumbered by the patients in a riduculous ratio.

So what did I do? Nothing. Absolutely nothing. I fled with the tail between my legs when the resident called, and then pretended that it was a relief to leave her. It was, truly, a relief in the same manner as not having to perform some courageous act simply by the command of another. Yet at the same time there was a feeling of shame, embarassment, if not inadequacy, in running away. I wanted to return to her and tell her good bye at the very least - not dissappear suddenly without any explanation. I feared that she would feel even more abandoned and become more aggressive/frustrated which serves only to alienate her nurses more and sets her up for a long, painful, and lonely night.

Yet I was a coward - I simply followed the resident back upstairs and tried to put her out of my mind. I hope she finally was able to speak with her husband, and hopefully got the pain medication that we asked the nurse to provide. It's so bad that I'm worried about seeing her again on Monday if she's not discharged. There's really no reason for her to stay, but if she ended up in the hospital on Monday, I'm not sure I can face her honestly after abandonning her like that.

Unfortunately, much of medicine stresses the efficiency and thus my talking with her, trying to comfort her, is actually frowned upon. I feel embarassed if I were to voice my opinion that I should return and see if I can somehow calm her down some more before leaving. I knew we had lots of other things to do, many more patients to see, but is that an excuse for ignoring a patient's concerns? Where do we draw the line between efficiency and sub-optimal care? Can we truly afford an one-on-one environment? This is where I think house visits (back in those days) had the advantage. Why can't we spend that same amount of time, dedication, per patient? With all the new technology, why can't we dedicate more face time with patients? Is it all in the name of capitalism that medicine strives for efficiency?!

Clinic

Today was my first foray into ambulatory neurology or "clinic". The day went by fast, and I re-learned quite a bit about the neurological exam. In testing for hearing loss, I got confused about the bone conduction versus air conduction. For some reason I remembered that bone conduction was more sensitive than air conduction, and thus performed the test backwards. No matter - it just means I have to review much of this material.

On the floors, we encountered another interesting case. This is an elderly gentleman who's had a long history of vasculopathies (diabetes, coronary artery disease including by-pass surgery, hypertension, etc.) and had a left cerebellar infarct about 6 months ago. At that time, they found an occluded left vertebral artery and a stenosed right vertebral artery. The plan was for him to get a stent placed into a vertebral or basilar artery but when he went for re-imaging to assess his vascular status, new acute and semi-acute right cerebellar infarcts were found. Listening to his story, they may have coincided with "falls" or questionable loss of consciousness. I was then tasked with reading up on bilateral cerebellar infarcts and after clinic that day I was able to peruse Medline and gather a few articles. Regardless of the etiology, it was rather clear by a decent sized study that his prognosis was not good - those with bilateral cerebellar infarcts in general tended to do worse, had more unpredictable hospital courses, and likely (but not proven) greater recurrences. Meanwhile, in terms of etiology, I believe it's quite likely that his severe atherosclerosis (manifested by his stenotic vessels and coronary artery disease and hypertension) made him vulnerable to atheroembolic strokes. As to why the cerebellar region, several papers seem to point at the lack of sufficient collateral perfusion when stenosis is present.

You can imagine my surprise, then, when cardiology came up and after an echocardiogram showing improvement in his ejection fraction (35%->45%) but questionable new lesions in a perfusion study was considering re-vascularization procedures! I asked the fellow if they were at all concerned about additional strokes given his severe atherosclerosis, and while she acknowledged that it was a risk, she felt it was not a great risk as the strokes did not appear to be embolic in nature but rather more consistent with hypoperfusion. I disagree with that notion, given that most hypoperfusion infarcts are not territorial, tend to be small (<2cm),>2cm) while his new infarcts from two different incidents were less than 2cm there were still localized to the posterior inferior cerebellar artery (PICA). Given his stenotic/occluded vertebral arteries, I fear he is in grave danger of new cerebellar infarcts. Since he was previously ambulatory around the house and didn't give any indications of cardiac deficiencies, e.g. shortness of breath after light exertion or chest pain indicative of ischemia, I'm not sure if re-vascularization is appropriate for him. If he were my grandfather, I think I would have resisted on the grounds that the risks are too high. Until he becomes truly symptomatic from a cardiac viewpoint, I don't see the need to do such an invasive procedure. His reason for admission was really from an incidental finding on MRI indicating acute cerebellar infarct, but he remains asymptomatic except for his "falling spells". Once we've ruled out syncope as the case of the falls, then I think it makes much more sense to "fall-proof" his home, perhaps physical therapy/walker, rather than continue to meddle with his body. I would hate to see him reduced from an ambulatory, semi-independent person into a comatose or severely disabled from additional cerebellar strokes. But as a student, I can do little but stand by and watch. Should I have been more vocal in my opinion with the fellow? She got her information from the notes left by Dr. Gerber the attending who has vastly more knoweldge and experience than I. Where exactly does the medical student stand as a patient advocate?

Rounds with Dr. Gerber

I'm rather excited about Neurology and am now wondering if I've made the wrong choice to pursue Internal Medicine! We had a grand total of 4 patients on our census, and with the 3 residents, 4 students, and one attending, we outnumber the patients 2:1! But that's not what excites me about neurology. For the very first time I was able to see evidence-based medicine at the bedside. We have 2 rather unusual cases, and after discussing them the attending, Dr. Gerber, went immediately to PubMed and searched to find case reports, reviews, articles, etc. that would substantiate his hypothesis or generate alternative explanations. But I'm also missing an important point here: Dr. Gerber, the attending, performed a full physical after a thorough, focused, history on every patient while we were rounding. Amazing! Never before have I seen an attending perform a full physical, often relying on the reported abnormal findings from the residents and focusing on the problem at hand. While there's nothing wrong with either approach, I feel that I learned much more from a complete exam than a focused one. The former has the advantage of being thorough, but the latter is much more efficient.

This makes me realize how important it is at various institutions to enforce a limit on the number of patients a person sees. While I understand that part of the training is how to handle a large number of patients effectively and efficiently, I also feel that this "rushed" medicine doesn't give patients the full attention they need and reinforces the message that it's ok to do just the minimum in order to get through all the patients. This might be ideal setup for future practice where your livelihood is dependent upon the number of patients you see, but I feel it's completely contradictory to the idea that we should be the patient's advocate.

The transition

I didn't get to see any patients today - it was mostly lectures in the morning followed by case-based discussions. Once again I was reminded of how much I have forgotten, and yet also how much I still retained. Bits of pieces of random knowledge flit through my head as we go around the table asking and answering questions. All I recall from Neuroscience was falling asleep staring at the pictures of brain slices projected on the wall, and hallucinating about Mickey Mouse ears in the spinal columns. Yet, random items like the "reticular activating system", "corona radiata", jump into my head without bidding. Nevertheless, unable to make sense of much of the jumbled up bits of information, I'm dreading all the reviewing/reading I will need to catch up. I write, "Get textbook" as one of my "To do" items, along with a list of new terms I just encountered.

This transition is reminiscent of my return to medical school from graduate studies. For the past two and a half months I've been spending time in my old research lab trying to wrap up an old project and starting a new, exciting project. When I'm in the lab, I feel on top of the world - confident in my surroundings and familiar with the words, phrases, etc. of my field. When I'm in the hospital, I feel like a first year medical student all over again - timid, unsure, and uncomfortable in the basic tasks of getting a history/physical and formulating a differential. I find I much too often zoom on on a particular diagnosis and have a hard time pulling back and considering other options.

It's weird - in science I can often scrutinize the reports of other people's work as well as our own result and often bring up alternative explanations for the results. I do this to challenge the conclusions and when I'm out of objections I finally consider the results/conclusions valid. Why is it that in clinical practice I'm often unable to do this? Given a presentation, certain ideas jump into mind and I have a hard time thinking of others. Part of the problem, I believe, lies in my lack of confidence and lack of fund of knowledge, but partly also from the practice of medicine itself. I like coming up with a hypothesis and then testing that hypothesis with conclusive, diagnostic tests. However, oftentimes in medicine this is not possible. We can't always perform a biopsy to see what's going on. I feel that medicine is all about gambling - we all strive to beat the house by knowing the system, knowing the odds and betting on the odds, but rarely do we get a definitive answer. Empirical trials of drug therapy are all too common, and many of the "syndromes" and "diseases" are defined not by pathohistological/molecular/genetic standards, but rather descriptions. So many different causes can all yield similar outcomes, yet we all lump them together into a single syndrome. And then on the other hand, we have the genetic/phenotypic variability inherent in individuals that take a single causitive agent, e.g. infection with B. burgdorferis or Lyme disease, and generate multiple, different outcomes. What is medicine, then, if not simply guessing? We take a collection of symptoms and guess at the most probable cause (based on historical data) and then attempt to change the course (often with empirical trials).

Ever wondered how they got the "probability of precipitation" estimates in weather forecasting? That's right - it's a guess based on historical data compared to present day observations. Medicine is no different. We're simply glorified weather forecasters or car mechanics (more on that analogy perhaps in a later post), and that irks me.

It's odd that many physicians downplay the role of imaging - they pride themselves on being able to predict the outcome without resorting to expensive MRIs, CAT scans, etc. And yet the gold standard often remains "taking a look" - be it a surgical operation for a first hand look, a biopsy specimen for microscopic examination, or MRI/CT scans for imaging without having to open up the body. I see nothing wrong with looking at the inside of the body no matter how confident you might be in a certain diagnosis, because as I've alluded to before, it's most likely drawn on nothing more than probability, guesstimates. I believe that if we ever develop a truely non-invasive, fast, non-toxic internal imaging system, it would revolutionize medicine and change it from a "practice" to a "science". The alternative, of course, would be some sort of no-risk surgery. This idea, however, is what will ultimately doom healthcare with exorbitant costs - but more on that later.

Medicine in Contemporary Society Requirement

Part of our school's graduation requirement is some kind of ethics/morals projects titled "Medicine in Contemporary Society". I chose the diary option as it's the most flexible from all the other choices (formal lectures, supervised projects, etc.). I often find myself holding opinions rather different from the mainstream, and I felt that writing a diary entry reflecting on my clinical experiences would be a great medium to express some of those opinions without having to argue for them (not that I don't believe in them sufficient to stand up for them, but sometimes it does get tiring to keep explaining myself). So, I'm going to go ahead and write them up in here and then print it out at the end.

Today we have off for Martin Luther King's day. Tommorow, I begin Neurology.