Thursday, March 25, 2010
Expectations, revisited.
My eyes welled up. I wished her well, thanked her for the privilege it has been getting to know her and help take care of her, thanked her for everything she has taught me. She cupped my chin and told me that I'm going to be a great doctor, and that she'll keep me in her prayers. I tilted my head up to drain the tears, to no avail. I needed to leave. I wished her well again, and left. I felt useful and proud and all the other things you'd think one would feel after a moment like that. But I also felt so profoundly sad. My patient isn't well, she's not going to be well. I spent 5 hours tracking down all her specialists for follow-up and jumping through hoops to get her portable oxygen to take home with her -- and after all of it, she's still not well. And I'm not well because of it. She has no concept of how unwell she is -- because neither her real doctors nor I did anything to frame it for her. Her expectations are entirely dependent on the words that leave our mouths.
Yesterday, we got biopsy results back from my first patient. He was discharged Monday with the label of a disease, a 10% understanding of that disease, and an absence of discussion about its prognosis. Not because this gap wasn't identified; it was truly because nobody really knew. But then the biopsy results came back, and it was not what we told him that he had. Instead, he actually has one of the first things I wrote on my initial assessment note the day I met him (based on a silly "flag fact" that I internalized during my Step 1 exam prep - if a question steam says that someone gets kidney disease 10 days after an upper respiratory infection, it is always implicit that they have IgA nephropathy -- and therefore, any question asked thereafter needs to operate with the presumption that the patient actually has IgA nephropathy). Nobody talked about IgA nephropathy, because of a really unique lab finding that he had - pointing to a specific category of diagnoses (an ANCA-associated vasculitis). Nobody read my note. When I asked a question about a particular lab test that would point to IgA nephropathy, I wasn't confident or articulate enough to explain what I was thinking. I let it go. Clearly, I reasoned, my thoughts were unfounded. I didn't step up.
Now we know that he has IgA nephropathy and the other diagnosis. There is no treatment for IgA nephropathy. He needed treatment for the other diagnosis, which he continues to receive. The treatment would not have changed. What does change is what happens next. This combination of IgA nephropathy and ANCA vasculitis is often fatal. When this guy left my care, he had no expectation that this was even on the table. Nobody talked about prognosis for ANCA vasculitis; it's so variable. But for optimistic people, the absence of specific cautions implies a reasonably positive expectation. So when this guy eventually hears from his primary nephrologist that he has this other disease process that he's never heard one word about after 2 weeks in the hospital, what will he think? He'll feel crushed. Alone. Mistrustful of the competence of those taking care of him. Not because anything is different, except his expectations. We didn't help shape his expectations - and those developed of his own devices are so drastically different from the reality he is about to learn.
And when I really started to appreciate this last night, I was the one bawling. My expectations were violated, too.
Wednesday, March 17, 2010
Learning to Listen
I stopped dreaming that My First Patient was going to die. Not because he necessarily got better (as alluded to in my previous post, "getting better" = upgrading to lifelong dialysis -- so I guess, yeah, he got better). But because I'm now helping to also take care of My Second Patient, and I simply don't have the emotional resources to obsess over two people. How do people have practices? How do people have children?
My Second Patient is an elderly woman with congestive heart failure, chronic kidney disease, hypertension, and a slew of the other usual suspects, and came in on Monday with progressively worsening shortness of breath and fluid buildup. Our job is to a) help her breathe better, and b) figure out whether to blame the kidneys vs. the heart vs. some other entity. Three days later, she still can't breathe too well (even on oxygen!), and we haven't been able to get rid of much fluid with diuretics.
The worst part is that she lives 2 hours away (this is the closest big hospital), far away from her husband or anyone else who can be here to hold her hand. So I do.
I am so attached to this lady that it's sick. I've come thisclose to snuggling her. I also came thisclose to slapping my senior resident who marched into her room yesterday, leading our amusing-looking pack of lapdogs, poking and prodding her while spouting frightening jargon. When I returned to her room later to "translate" (from Medical to English), her eyes were red and moist. She had been crying.
I, too, am tearful often around this lady. Not because we have the "intimidated, confused, and alone" thing in common, which we do. I get tearful because she makes me feel like I might actually one day be a decent doctor. When I am forced (by my conscience) to explain test results and treatment plans (presented completely differently than the residents do: "today we're going to do x to you" doesn't exactly do wonders for one's locus of control) at the level of some fuzzy grey zone between sub-technical and respectful-lay (perhaps resembling Wikipedia-level medicine -- i.e., how most medical students learn anything that makes sense), I appreciate that I don't suck at it. I get nonstop practice at tetering on that fine line between "neutral" and "non-neutral." Everything matters here. Your tone, your facial expressions, your body language. The moments you create for people might actually be some of the only human interactions for the day. Their singular insight into "what's going to happen to them" that day, or ever. These moments matter. You can't butcher them or rush them. Or skip them (as My First Patient was about to be whisked off to the OR to have a catheter placed for dialysis, I asked whether any of his real doctors had told him. I nearly puked when I heard the answer.).
Today on rounds, my attending called out a senior resident for his ineffective nonverbal communication skills. It was a resident I actually like, who is actually pretty gentle and friendly with patients -- doesn't interrupt, is pleasant and reassuring. But my attending called out for the way he interviews patients while standing up, towering over them, with his arms crossed against his chest. I was very moved. Moved because FINALLY, for the first time on this rotation, someone called attention to everything I've been complaining about since I got here. Somebody finally said this wasn't ok. But the thing was, the resident didn't take this feedback constructively. Instead, he argued of the merits of "asserting one's self" with a patient, setting boundaries, "letting them know how it is." He didn't drop the "c bomb," but I thought he was going to.
"There's room for compassion sometimes..." he began. "But sometimes you just need to let the patient know that you're calling the shots."
This is who they leave me alone with, to teach me how to be a doctor.
My attending didn't bother to argue. I assume he chalked it up to a lost cause. But since he still had the floor, he continued.
"Sometimes you don't need to say anything at all. Sometimes you just listen. Everyone has a story."
One of the upshots of a) knowing relatively little about what's wrong with really sick people and how to fix them (or at least how to apply the stuff I know), and b) having relatively few responsibilities besides showing up early, hanging around late, and undergoing the various humiliating rites of passage associated with third-year med student life, is that I have all the time in the world to figure out other ways of being useful. I've found that my 'usefulness niche' is to listen to people's stories -- to look them in the eye, smile, and shut the hell up.
It's amazing what people tell you when you shut up.
I've created a construct of "listening quotient" -- how much listening will I do during any one enounter. The LQ is calculated on the basis of several factors: a) the look in a person's eyes -- are they scared? are they lonely? are they confused?; b) has any other human being interacted with him or her lately?; c) if I were in his or her place, how much and in what capacity would I want me there?; d) what is my purpose: data acquisition, comfort/assurance, interview practice, etc?.
Today, for example, I was tasked with performing a rectal exam on My Second Patient. I'd never performed an unsupervised rectal exam before, nor had I performed a rectal exam on a patient who didn't show up for an annual physical expecting to have one. I entered her room, and found her short of breath and distressed after experiencing an adverse drug event. Seriously? A rectal exam in the middle of this? Game over. So because I had the time, and because I did genuinely want to understand what she had experienced (so that I could relay it back to my team), and because I wanted her to feel like she had been heard, and because the LQ earned by knowing that I was about to impose discomfort, awkwardness, and potentially pain, we chatted for a good half hour before I explained why we were recommending (if it were ok with her) that I perform a rectal exam. I apologized profusely, etc. etc. about the nature of the exam, and helped her to roll over into the most appropriate (and comfortable, as I can attest via my experience as a patient) position. As a 400+ lb. woman, it was a challenge to attend to her modesty, comfort, and self-consciousness while helping her get into position. I'm not sure that I did a good job. And when it was all over (post-tissues: I ALWAYS give tissues; my doctors never did), we chatted again for another half hour. The blood I saw on my sample earned an even higher LQ, anticipating what I might one day have to tell her.
Tonight before I went home, I went in to check on My Second Patient. We went over some of her test results (good), and the plan for the next day (hopeful). She told me that her husband was visiting shortly (great!). And then, all of a sudden, she started bawling. I touched her arm.
"I'm so scared..." she said. My hand remained on her arm. I said nothing.
"Thank you. You make me feel so much better. You come with me to all my scary procedures, and you teach me about what's going on."
It's amazing what people tell you when you shut up and listen.
Snapshots from Week 1 on the Wards
I had so much to reflect on from my first week of inpatient medicine, so much I wanted to capture and document here in a format that I could look back on, a format that would keep me honest. But I didn't. Instead, I ranted to my roommates (I'm living in a dorm with four other med students, right across from the hospital), I ranted to my boyfriend. And I emailed my preceptor at the clinic.
I'll paste those emails here, more raw than I'd be able to re-create. His responses were what was epic about the exchange - but I think it's probably poor form to post someone's emails on the Internet, unbeknownst to him or her. But here's at least my end, for me to remember.
Thursday, March 11, 2010 -23:31.
Life is ok here. Slightly less disoriented as the days go by. Getting pretty good at writing notes, functioning on little sleep, and mildly to moderately competent at presenting without sounding like an idiot. Oh, and yesterday I found out that I passed my Boards.
I started my first rotation on Monday. Renal. Everything very interesting but exhaustingly sad and frustrating. Even the people who “get better” don’t actually really get better. It's almost like there is a drop-down menu: 1) dialysis now, 2) dialysis later, 3) death.
My first patient is the sweetest, nicest old man. I spend most of my day with him and his wife (a nurse), translating all the minutiae of his treatment plan (they totally care, and nobody ‘gets’ that they really, truly want to know every single thing that’s going on). They’re so scared, and they experience a greater sense of control by having specific data points to track. But all the data gets worse every day. Prior to a few months ago, he had no renal problems at all – and suddenly, he’s days away from dialysis. Diagnosis is still undetermined (repeated a biopsy today) – but he might actually have Wegener’s. I didn't know people actually got that. His renal function gets progressively worse, his sugars are skyrocketing from all the steroids he’s getting, and he has incidental lung findings that might be consistent with IPF (you taught me about how bad that on my last day at clinic; my first patient wasn’t supposed to actually have it…)
Most nights, I dream about him dying.
While I was at a lecture today, he had an ischemic cardiac episode (ST depression on ECG, initial biomarkers were negative but it was probably too early). I later found out he had to call 3x before anyone came to him. He had told me about overnight chest pain on pre-rounds this morning (which he later explained felt exactly the same as this episode), and my team unanimously concluded this was anxiety when I presented to them. Then, this happened. I felt horrible. I was too wimpy to advocate for him; I merely reported facts and didn’t dare express my differing opinion – even though, technically, this is an environment where I could have.
My residents frequently comment on what a great case this is for me to see as a student – an ANCA-positive vasculitis with possibly related lung findings (my one useful contribution to life was to suggest testing for anti-GBM antibodies, since that commonly but unfamously can show up ANCA-positive). But it doesn’t feel great. It feels awful. Every time he asks me if he’s going to get better and stop getting infused with all the poisons we’re giving him, and I have to find some horrible way to balance realism with whatever we’re waiting on for x day, it’s just awful. Important learning experience and preparation for what is to come, of course, but awful nonetheless.
Saturday,March 13, 2010 -11:30
Yesterday was a good opportunity to focus on all the non-"know how" parts of medicine, and to feel useful that way. It was a really scary day for my patient -- tunnel cath placement and start of plasmaphoresis and dialysis (all of which were decided last-minute, so he hadn't psychologically prepared for it). I had time to spend the whole day with him and talk about his fear, intervening/translating when various characters communicated sub-ideally (including eeeeeevery resident here, who all either spout nonstop jargon or deliver all news at the level of a first-grader; no middle ground). I hope I'm not naïve in thinking that piss-poor communication skills are not soley the result of time pressures that I don't yet have.
It's good that I'm literally forced, all day long, to practice educating him and his family at appropriate levels for all of them, and framing horrible test results and horrible treatment options (my new gripe that may prove to top "compliance" the longer I'm here, is the whole "we're going to do x to you today" without bothering to create even an illusion of perceived control).
I've been spoiled in spending so much time watching you communicate about difficult issues so expertly. But I forgot how instructive to watch how NOT to handle something, too - and attaching what I learn to this emotional memory, I hope will last. For example, we were recommending cyclophosphamide (communicated as "we're going to start you on cyclophosphamide" without a discussion of what it is or its risks) -- and the wife's eyes bulged out of her head. She clearly recognized the drug name and assumed her husband had cancer and that we weren't telling them, so started asking vague questions so as not to alarm her husband. The resident could have cleared this up so quickly, but didn't pick up on what the issue was instead was awkward and vague and ending up scaring the hell out of them. I don't think I'll ever forget that, the importance of inhabiting people's responses to be able to anticipate future response. I've been able to ask these folks all sorts of questions about their reactions to various events and interactions. I won't ever be able to spend an hour on that after clerkship - but hopefully I'll remember to ask at all.
I'd like to be at a place where I don't get tearful when I come home every night and show up to the hospital rehearsing my coping mechanism for finding him dead. Does this get easier?
In other news, today I saw the chalky blue-grey skin changes of amiodarone that I memorized and regurgitated for Boards but had never even seen a photo of. Seriously not ok.
Monday, March 15, 2010 -- 20:12
Today I pissed my supervising intern off by asking if I could call for a (free) dietary consult to teach my patient (who is actually getting better!!!) about how to adjust to his new restrictive diet. "It's too much information." A complete misread on who this guy is. He wants information. He wants to understand. He gets anxious without being able to have any expectations, or at least accurate ones (bonehead covering attending over the weekend told him he could go home today, without determining that plasma exchange isn't done as an outpatient here - Imagine his disappointment to learn that it's actually an entire week extra).
On the flipside, I'm now helping to take care of a new patient who's at a totally different level of what she understands and wants to understand. 78 year old woman, very much of the "doctors do no wrong, I entrust myself completely in all of your hands" mindset. I'm sure that I'll learn a lot about how differently I'll likely communicate with her than with the first guy. It's a tricky balance between making people feel comfortable and safe vs minimizing the fact that their kidneys are shutting down. It's entry-level "giving bad news" practice.
In other news, I independently diagnosed a real person for the first time. It was a result of relying on a flawed heuristic (I'd read someone's memoir a few weeks ago about missing ischemic colitis in a little old lady with a GI bleed) instead of legitimately knowing that the other potential causes I did know about were more common. It was the first time I had an original intelligent contribution within the borders of the state of Maine, and it didn't even earn a "good thought" (universal validation of medically intellectual legitimacy, of course). It was more "let's order a lactate to humor the silly medical student to make her feel like part of the team." I was kind-of furious at myself about how proud I was to be right, especially since I arrived at it completely unscientifically. But as a wise man once told me: "tis better to be lucky than to be good." I probably butchered that, sorry.
Tuesday, March 9, 2010
Time.
"They" told us that everything becomes different now. All that matters is "our patients" -- the ones that were mentioned so infrequently during Orientation last week that I actually forgot (for at least a few hours) that I'd interact with any. Then, you show up and get thrown into this crazy, chaotic world of beeping alarms and White Coats walking around and spitting out numbers, minimizing human interaction wherever possible. The detachment is palpable.
A few hours into my day yesterday, though, I was told about a new patient coming into the Emergency Department after being sent in by his doctor urgently after discovering insanely elevated blood levels of potassium and creatinine. I was told he'd be "my" patient, and was later told to show up at the ED and interview "the guy in A8." I've gone into rooms to interview patients before: I could do this, I figured. So I found my way through the labyrinth of my new world, walked right in, sat right down, and... everything became different.
Over the past 36 hours, "the guy in A8" really has become "my" patient. I arrive at 5:30AM to check on all his labs and examine him. I present his updates to my team. I write up notes for his chart, write medication orders (seriously?), and spend most of the day with him and his family. I pop into his room periodically to give him "life updates," as I call them - what's going on with various tests, medications, and how the team is thinking about solving his case at x point. Because you know what? NOBODY ELSE IS.
"Be careful about giving patients too much information," cautioned my intern today. "You might make them anxious."
In addition to textbook resolution of his hyperkalemia, my patient was given insanely high-dose IV steroids yesterday to treat his mysterious kidney disease (which, in actuality, may be something that House throws out on his differential every episode but that we were taught in school that nobody actually gets...). Today, the team suggested adding another insanely potent immunosuppresent: a cancer drug, cyclophosphamide. Silly post-USMLE Step 1 jaw-jerk reflex goes off about the only thing I know about cyclophosphamide: that it can cause fatal hemorrhagic cystitis, and should be given with another drug called Mesna to inactivate its dangerous metabolite. Shot down. Silly med student. I pushed the issue with two interns, an attending, a pharmacist. I'm paranoid that this was my one opportunity to be useful, and I couldn't "sell it."
"So, we're going to start a new drug on you," says the intern to My Patient. I shudder. We're just going to do x to you. Not 'recommend.' No 'what do you think?' - no 'is this ok with you?'
"What is it?"
"It's a drug that shuts down your immune system."
"What's it called?"
"Cyclophosphamide."
Patient's wife (a nurse)'s eyes bulge out of her head. I instantly detect that she recognizes the drug name and thinks that her husband has cancer, and that we're not telling him. I try to intervene. Intern obfuscates with vagueness. My patient interrupts.
"Do I have cancer?"
Finally, it occurs to me how to explain that different drugs are used for multiple purposes. Everyone quiets down. But I deeply regret those 2.5 minutes where these lovely people felt in the dark about their lives. There was no need for it.
I continued to obsess over it, until I alleviated my hang-up by finding an article that documented that cyclophosphamide is the standard treatment for what we think he might have. I printed it. I don't know whether they cared what it said. But I did know that they cared that I knew they were scared and confused.
Tonight, it's time to leave. I tell the intern that I'm going to tell my patient that his cyclophosphamide first dose is coming tonight. That's when I was cautioned about the perils of keeping people informed about the whats, whens and whys of introducing toxic cancer drugs into their bodies, without thorough discussion of side effects. I did it anyway.
"Am I going to have to take this forever?"
I can't protect my patient from his kidneys or his medicines, or the cold alienation of his surroundings. I don't know whether my presence in his room contributes any real difference. I've never wanted to fix someone so badly. I hang onto his every little detail that comes out of his mouth, hoping that I'll catch some subtle little detail that everyone else blew off. I exaggerate the things I hear. I've been reading for hours about reactivated rheumatic fever. Nobody gets that. But then again, nobody gets what everyone thinks he has...
People say that the value of the third-year medical student is how much time we have. Unlike actual doctors managing dozens of patients, all of my energy and cognitive resources are invested in one man. I technically have oodles of time to indulge my tangents. But when you think about a round, little old man lying alone in a hospital bed -- caught in a balance between his kidneys trying to kill themselves and the toxins we gave him threatening to kill him first -- there's never enough time in the world.
Tuesday, March 2, 2010
Milestones.
I couldn't make his heart pump stronger. I couldn't get him out of the hospital and back to his real world any faster. He didn't have an overwhelming desire to unburden himself of his innermost concerns. He wasn't looking for anyone to listen to him and support him. He just wanted to go home, and I could do absolutely nothing to further that end.
I didn't belong in that hospital. I didn't belong in that coat. I was an imposter, completely disconnected from any of the privileges of existing under those conditions. I knew it before I walked into Mr. Smith's room that I would feel awkward and guilty for draining his resources without serving any purpose of any kind. It was an experience of profound uselessness that scarred me, inspiring a borderline-pathological, obsessive sensor to evaluate my contributions to any patient who has allowed me to learn from him or her ever since.
Exactly one year later, imagine the irony of beginning my third-year clerkship. Yesterday, I drove and moved myself to Portland, ME (a feat in and of itself: my car was so packed that I couldn't see out the back OR side windows... that I made it here alive without rendering irreparable harm to myself or others is pretty mind-blowing) to start my new life. And this morning, I strutted into the hospital - garbed in White Coat, of course - with a confidence that I could not even have imagined a year ago.
Day 1 of orientation was pretty chaotic. Lots of info, lots of hallways, lots of disorganization. But as I walked those hallways, I felt something completely foreign to my inpatient experiences to date (see also: my "Operation: Own Your Discomfort" trips with my preceptor this Fall). I felt like I kind-of, sort-of, just-a-little-bit... belonged there.
The first day was concluded with my first patient interview as a third-year student.
Assignment: "Go see Mr. Jones. Don't take a history or perform a physical exam. Just talk with him about what it's like to be in the hospital." The same exact assignment from a year ago.
"I heard a little bit about your experience from Dr. X. What has it been like for you?"
Twenty thoughtful minutes later, I found myself discussing this man's use of narrative to construct a meaningful experience of his frightful events (cardiac arrest, followed by an induced coma). With each rendition of his story, he recounted, he felt more and more appreciative for his life and the people around him. He selected his details, framed their context and consequence -- all of it shaped exactly as he needed it to be. His story was his coping mechanism, his structure. His way of establishing control in the face of chaos.
As his words fell upon my eager ears, I was surprised at how natural it felt -- it felt just like interviewing a patient at clinic, as I'd done so many times before this year. Granted, he was not in acute distress. I don't think clearly or feel comfortable/confident/anything remotely positive whilst in the presence of someone in acute distress: this is definitely going to be a challenge, and one that simply did not present itself today. But for now, in the moment, I felt like I truly did belong.