Monthly Archives: May 2014

I Know You Feel Like Your Doctor Doesn’t Care, But That’s Just Because He Doesn’t

27 Tuesday May 2014

Posted by in medicine

≈ Leave a comment

Tags

, ,

I often get patients telling me they feel like I’m really listening, like I really care. Unlike that other doctor, Dr. So-And-So. Sometimes I’m surprised by the name they drop as so many of my colleagues genuinely care about their patients and have, as far as I’ve observed, a good bedside manner. Some patients will always complain, regardless of how physicians behave. We tend to hold our doctors to a pretty high, oftentimes impossible standard. Other times, I’m not so surprised to hear Doc So-and-So has rubbed them the wrong way. Some physicians certainly have a gruff bedside manner. And others, probably more, are nice enough to patients, but don’t really feel the kind of empathy and concern patients expect from their doctor. They follow the script, but you feel like they don’t care the way you want them to. Having spent time behind closed doors with medical students and residents, I can tell you, you’re probably not wrong.

Multiple studies on the empathy levels of medical students, residents and practicing physicians have shown we tend to have less empathy than the average person. One study in the journal Academic Medicine showed that empathy levels actually decrease as medical students move along in their training. Cynicism goes up, compassion goes down.

The widely accepted reason for this is, basically, that medical training is a real bitch. The first two years, where students are taught the science of medicine in a classroom setting, are competitive and stressful. Actually, the words competitive and stressful do not convey what we go through. I’m talking people crying in the halls after exams, weeping and gnashing of teeth. Eating disorders and binge drinking galore. Keep your grades up or get the hell out. I once asked for an extension that I thought was pretty reasonable. My son was in the ER getting IV fluids for dehydration and would possibly need admitted to the hospital and the exam was the next morning. It was the only time I’d ever asked for an extension. I knew leaving sick toddlers at home with my mom, no matter how sad and guilty it made me feel, was part of the deal when I started medical school. I thought the fact he was in the hospital and that I wasn’t one to ask for special treatment might cause them to grant the extension. The professor refused my request and went further. He said, your scores haven’t been that great lately, you’d better do very well on that exam or maybe you’re just not cut out for med school. Damn.

Empathy levels drop even further after the third year of medical school. That’s when you finally start seeing patients so you’d think the battle weary medical students would become more compassionate, not less. That thinking ignores what third year of medical school is really about: pimping. I recall the confused look on my husband’s face the first time I mentioned getting pimped on rotation that day. I’d forgotten the term has another meaning altogether outside the medical bubble. Pimping here refers to a style of teaching employed by attendings with medical students and residents. Oh, how civilized that sounds! The attending, generally an intimidating person who makes no effort to make you feel comfortable in the least, asks you a series of questions about medical facts. A surgeon might ask you to list off the blood vessels and nerves that run through the area he’s currently operating on (as you stand in an awkward, turned and bent over position holding a retractor with each hand). He then might move on to having you trace the blood vessels back to their origins. You’ve just spent two years drinking from the proverbial fire hydrant of medical knowledge, so you search your cluttered, fact-saturated mine desperately looking for the answer. If you fail to produce (which every one of us does at some point), you’re made to feel very small.

As you progress, your wrong answers or, worse yet, no answer at all, move from eliciting comments and looks that merely make you feel like a moron, to comments like, “You’re going to be a resident next year. What if a nurse calls you in the middle of the night with a patient in such-and-such a condition and you don’t know the answer? People’s lives are going to be in your hands. Haven’t you thought about that?”

This is part of the explanation used to defend pimping. If we’re going to be in high presure situations with patients’ lives hanging in the balance, then hadn’t we better learn to deal with pressure? I’ve yet to see the research showing that idea is valid and I doubt I ever will. Because it’s not. What I do see is the culture of physician training where change is resisted and the hierarchy fiercely protected. New doctors really ought to show appreciation for their suffering. It’s how mere humans become physicians.

I have to admit, I’m guilty of it myself. My residency recently moved from 24 hour call shifts to 12 hour ones. It really bothered me. I mean, really bothered me. And I couldn’t figure out why. We know from the research that sleep deprived residents make more mistakes in patient care and also get in more car accidents on their way home. The work hours of residents have decreased in recent years as new guidelines were instituted. We cap out at 24 hours of direct patient care now (no more 30 or 36 hour shifts). First year residents aren’t even allowed to work 24 hour shifts anymore. There’s also a minimum number of hours you must be given off between shifts and a weekly cap on total hours. (An average of 80 hours per week over a four week period). We’re also supposed to have at least one 24 hour period off of work each month. Are these guidelines followed to the tee across the board at all residencies? Oh hell no. But, the point is, the times they are a-changing. Now, back to me and my own old fashioned ways. I was really bothered by the end of 24 hour shifts at my residency and I couldn’t figure out why.

After much soul searching, and many discussions with my fellow residents (none of whom minded the change at all) that ended with “You’re seriously not upset? Really?!”, I came to realize I was so upset because it took away some of what makes being a physican special. There aren’t too many professions out there who work 24 hours shifts on a regular basis for several years straight. Residency is grueling (and mine is one of the kindest ones out there) and people know it. For me, we endure this because medicine is a calling. Not just a job or career or profession. I wouldn’t give up so much time with my husband and children for a mere career. I wouldn’t ask them to make the sacrifices they do for my profession. I do these things because I have been called.

There is no clocking out when you’re a doctor, especially not during residency. I remember the time intern year when I needed to talk to the family member of a patient about placing the patient on hospice for her terminal condition. I’d been there since 6am when I placed the call to the patient’s son at 4pm that afternoon. I’d already spoken to her older son and he felt hospice was the best thing for her, but he wanted me to talk to his brother and him together before making the decision. Her younger son was audibly upset as I told him what I needed to discuss with him. His mother hadn’t been doing well for a while, but who’s ever ready for their mother to die? He told me he was at work, but he would be getting off at five and could come over right after. I was supposed to be done at five o’clock, barring any disasters (always a possibility when you’re working inpatient service), but I told him I would wait. He said he worked about twenty minutes away, maybe half an hour with traffic. I was missing my babies, ages 8, 6, and six months and I knew they were missing me (not to mention how my mom, the one who’d been watching them for twelve hours, felt). But I also knew this family needed me to stay. This was not something I could sign out to the intern coming in to begin night shift. This was something I needed to do for my patient.

Traffic was heavy and then there was an accident. He didn’t make it in until 6:30. I sat at the computer in the ICU, going through emails, finishing up notes from the day’s admissions, waiting. He eventually got there and apologized for being late. I told him he didn’t need to. And I meant it. We talked about his mom’s condition, about their options. Her sons talked about what they thought she would have wanted. The younger son cried on his wife’s shoulder. And then they made the decision to make her hospice. They thanked me. I told them how much I’d loved taking care of her and assured them of how loving and brave their decision was.

I left then, headed home to my family. Soon after, the upper year on night shift called to let me know my patient had passed. She lived less than an hour after the uncomfortable BiPap machine was removed and the morphine drip started to make her comfortable. She passed peacefully with her sons at her side. I cried a little, but there was dinner to be cooked and homework to be done. The baby needed a bottle. I needed some sleep.

I look at the changes being made in medicine these days and I worry it is losing its identity as a calling. Family doctors once saw their hospitalized patients in the morning before going to the office. If their hospitalized patients needed something in the middle of the night, they fielded the call. Now, family medicine is being divided into hospitalists and outpatient docs. Small practices expand bigger and bigger, cutting down on the frequency of call for each doc. Graduating medical students look at the lifestyle a particular specialty will provide as much as the kind of relationship they will have with their patients. Will medicine soon be little more than a job? A paycheck you put your hours in for? Clock in, see patients, clock out.

Perhaps this is what the older physicians worry about when they think about giving up things like pimping and 100 hour weeks. And perhaps, in order to hold onto our humanity,we must remember that not only are our patients feeling human beings, but so are the young doctors we train. We are human beings with limits. Limits to what we can do physically and to how much we can take emotionally.

In the end, it is not 24 hour shifts that makes medicine a calling. It’s certainly not the battle scars of impossible exams and pimping. It is the compassion we feel for our patients. What determines if it is a calling is the motivation that brings us to this job with its blurred borders of where it ends and the rest of us begins. You can go without sleep and endure overhwhelming stress with a hardened heart. You can bring this sacrifice and an abundance of medical knowledge and procedural skill to your patients, but if you don’t really give a damn about who they are, you aren’t really a physician. All the technology and constant outpouring of new medical knowledge and developing of drugs doesn’t change what is most important about us. We are healers, much more powerless than we like to admit. If we can serve with a humble heart and keep from doing too much harm along the way, I’d count that a worthwhile medical career. And I bet my patients would too.

Mom, I’m Dooone!– The things no one can prepare you for when you have a child with autism

26 Monday May 2014

Posted by in parenting, special needs

≈ Leave a comment

Tags

, ,

As I put the finishing touches on my son Mies’s tenth birthday cake, the same army themed cake I’d made at his request for the past three years, I heard a muffled, “Mom, I’m doooone,” coming from the bathroom. Mies was ready for me to come wipe his butt.

Mies has been potty trained since he was five, but, now ten, is still unable to clean himself up and has frequent accidents. It’s one of those things none of the books on autism prepare you for.

It limits the opportunities open to Mies and the activities we as a family can engage in. It is an ever-present topic at IEP meetings. Mies’s teachers insist on barraging the poor kid with “social stories” about stopping what you’re playing and asking to use the restroom politely and appropriately, but that’s not really the issue with Mies.

The sensory issues children with autism have don’t stop at the bathroom door. Some can’t stand the smells and feelings involved and refuse to be any more part of it than they have to be. Some, as in Mies’s case, simply aren’t mentally connected enough to their bodies to feel its cues before it’s too late. Most of the time he does, but even an occasional miss at age ten is a problem.

We’ve managed to cut down on the pants wetting by watching for the scootching around of the pee pee dance and telling him to go, even though he insists he doesn’t have to. It’s not as easy to prevent the other accidents.

I notice he’s not embarrassed the way I would have been at his age, but it makes him sad because he’s afraid we’ll be mad. Mies falls apart any time he thinks he might be in trouble, crying with a look of such pure, wounded disappointment in himself on his face, it breaks my heart every time. No one tells you about that either. He’s truly the sweetest, most sensitive soul I’ve ever meet.

They tell you about the meltdowns, but not how they will get harder to take as the years go by, not easier. It’s not possible to get used to your child becoming completely overwhelmed by the feelings he cannot name, going into screaming, crying, thrashing fits over the most insignificant things. You take him somewhere where he will be safe and where the other kids will be at least somewhat removed from the noise and the stress of it. You listen to the screams and his kicking the wall as you try to keep busy. You try not to lose a little piece of your heart each time, but you never quite succeed at it.

No one can convince you, when your child is first diagnosed, that it will ever get easier, ever hurt less. How can the loss of the dreams you held for him ever be okay? And yet, you grieve, the wound stops stinging with every bump, just as the parents on the message boards said it would. That is, most of the time. Just as you’ve gotten used to the healing, to the wounds turned to scars, you find out there will always be bad days. Just less of them. You still have days when you cry, when it feels like no time has passed at all since that moment that changed your life, when before was divided from after.

You sit through speech therapy sessions, wondering if he will ever speak, trying to picture what it would be like if he never did. Maybe you pray that doesn’t happen. Then, one day, for some of us, it happens. He speaks his first word. And you feel joy of such intensity, relief, gratitude. You feel sadness and heartache too, and the guilt that follows. Always the guilt lurking somewhere.

You will never feel you’ve done enough, no matter how many battles you fight for him over IEPs. You grow patience that would shame the saints, but there is always more you could do. You will never be that mother in the Lifetime movie, so determined to save her child, she does. No one tells you this guilt and helplessness will be the undercurrent of your life now. Or if they do, you don’t remember anymore with all there is to keep in your mind now.

The books you read can only tell you so much because they are about autism. They are not about your perfect child, beautiful in his whole. The doctors you ask your questions of don’t take the time to look in his eyes and see the holy in him.

I wash my hands (twice, for good measure) and return to piping the green icing onto Mies’s cake to look like grass for the little toy soldiers to hunker down in. He runs around making the machine gun noises only he can, fighting his ongoing, never-ending solitary battle against the Germans. But he’s not really fighting alone. I am there with him.

All it took was about 100 water balloons

25 Sunday May 2014

Posted by in parenting

≈ Leave a comment

Tags

, ,

We survived our first Electronics Free Sabbath today. Poobah and I were discussing the boys’ increasing dependence on iPads, iPhones, and computers when he suggested that we ban electronics on Sundays until 7pm. I liked the idea instantly, but we figured it wouldn’t go over well with the boys. To put it lightly. I suggested we plan out fun family activities so we could pitch it to them as some fun we were adding in, rather than something they loved we were taking away. Poobah liked the way I was thinking, and began setting things up.

We began our day with a big Sunday breakfast, a tradition in my family. Growing up, my ex-Christian parents still held Sunday as a special day. We didn’t go to church, but we rested (the only day of the week my farmer father didn’t work) and had a big special breakfast and a big dinner, generally at four in the afternoon, farm-style. So, I got up and cooked us all eggs (egg whites for Poobah, guardian of his uber-low LDL), hash browns, and soysauge (don’t tell the kids, they think it’s dead macerated pig. Soy is really so disgusting compared to real sausage after all). We finished our orange juice and off to church we went.

Sounds so simple, but here’s what really happened: Poobah scrambled to clean up the kitchen while I scrambled to get dressed with Princess crying her head off the entire time saying “Door” over and over again in an attempt to convince me to let her outside. Soldier Boy attempted to get dressed on his own but turned into a weeping puddle when he kept putting both legs into the same leg of the pants. Tree lamented church being a “waste of time” (as opposed to playing on his iPhone) and sat moping on the couch until we’d told him to get in the car for approximately the 56th time. The Ax, oddly enough, put his shoes on and went and sat in the van without even being told to do so. Little miracles all around.

We eventually managed to get on the road but only after realizing Soldier Boy was missing when our head count came up one short. I found him wandering the basement whereupon he explained to me he’d attempted to go out to the car when Poobah told him to, but he hadn’t been able to get the front door open (he has issues with doorknobs). I asked him why he didn’t just ask for help, but he didn’t know why. Out the door we went.

We arrived at church only ten minutes late which is pretty darn good for us. The parking lot was crowded, presumably for Memorial Day. Poobah commented that this must be a western Pennsylvania thing. We grabbed Princess (her shoes had been forgotten in the flurry of morning activity so we carried her across the gravel parking lot) and herded the boys toward the door. Poobah did a body check for contraband on the boys (minus the pat down) which didn’t turn up any hidden iPhones or the old iPad in the seat of their pants tricks. We left the three boys with Princess in the nursery and went in and found two seats towards the aisle, in case we needed to get out to the nursery in the middle of service (which we do about 100% or so of the time).

We arrived as the singing was slowing down and the Memorial Day honoring of the veterans was commencing. We sang “God Bless America” as the ushers circulated the collection plates. I didn’t sing along as I don’t feel comfortable doing anything very patriotic when I’m in the company of those who don’t recognize the imperial atrocities the US government has visited on various developing countries throughout history, in addition to the good the ideals and the people of the nation have done along the way. The preacher then began to preach on a passage about Saul from book of Acts and we sat listening, Poobah more engaged than I. Soldier Boy came in, a few minutes before the kids were to be dismissed for children’s church. Tree came in, preferring the teenage boredom of the service to the teenage boredom of watching the baby in the nursery. Soldier Boy was soon dismissed and Poobah and I focused on the word the preacher was giving.

My mind drifted elsewhere as he spoke with fire and a dash of brimstone, to what we’d have for lunch and what I might wear when I gave my talk on autism to a group of physicians later this summer. I got the general gist of the sermon, but probably not to the extent I was supposed to. I did clap when the preacher talked about how much he loved when sinners came to church. Jesus surrounding himself with sinners and prostitutes had always been one of my favorite things about the gospels.

Church ended and I tended the brood as Poobah went up for prayer. I watched Princess as she walked up and down the steps in the lobby (“steppies” being her greatest passion in life right now) as the boys beat one another up in the nursery. A concerned older gentleman said to me that I’d better go check on them as one boy was kicking the other one. I looked in the room and saw The Ax on the floor, giggling, with the much bigger Soldier Boy poking him with his foot. I told the gentleman they were just pretending but he insisted they were not. To placate him, I went and in and told the boys to go outside and play. Princess remained at her station on the steppies, mastering the craft of going down them holding onto the rail, instead of mommy’s hand.

Poobah came out and we made our way to the minivan. I let Princess walk up the cement steps between the two levels of the parking lot despite being barefoot and got a disapproving comment about doing so. Tough crowd. We came home and I packed up peanut butter and honey sandwiches as Poobah loaded up the bikes for our afternoon adventure. After a diaper change, the boys getting out of their church clothes and into their play clothes, sunblock application, homemade lemonade made and distributed amongst five bottles, the cooler filled with berries and watermelon, and everyone peeing in the potty (or at least trying after being told they had to after whining that they didn’t have to go), we were on our way.

I rode in the back with The Ax and Tree (long story) while Soldier Boy entertained Poobah with tales that only half made sense to him, appropriate, as I imagined he was only half listening anyway, focused on finding us the out-of-the-way park we’d never been to before. Princess snoozed, luckily, preventing her from being Miss Crankerpants for the rest of the afternoon. It turned out Poobah’s map wasn’t of the best quality, so we made some loops and hit some dead ends before arriving there, guided more by his inner compass than the map. We were all excited to get out of the van and get some lunch. We ate and played on the playground. Soldier Boy was already on the swings by the time I made my way up the little hill to the playground, chatting up a seven year old little girl next to him. Soldier Boy and The Ax were both incredibly social, completely at ease wherever they want. They’d apparently gotten it from their dad as I was a shy kid and am a shy adult now.

We ate. Princess found some steppies to work on and some pretty big slides to go down (she knows no fear). The boys played on the big spinny thing playgrounds tend to have. Soldier Boy found a fort for himself and a stick for a gun. That’s about all he needs in life.

We played a while and then Poobah readied the bikes for us. Cooler away, helmets on, let’s ride. The Ax was struggling with his bike a bit. He only just really began riding well this summer and he was having a somewhat off day. Soldier Boy was happy as usual on his bike. He’s unable to balance a bike, related to his autism and issues, and is legally blind so we have a tandem type bike attachment with two wheels that attaches to the back of Poobah’s bike. Soldier Boy weighs a hundred pounds and can’t really pedal much, so it’s lucky for me I married the fit man I did. Princes was excited, sitting in her little seat attached to my bike. Tree was riding all around the parking lot, waiting for the caravan to leave.

We made our way to the trail, but it didn’t start well. The Ax was struggling with his bike and getting very upset with each fall. The trail started out uphill and little Ax just wasn’t ready for that so early in his bike riding career. We made our way long with me and Princess holding back to stay with The Ax It soon became apparent this wasn’t working, though. We canceled the bike trip and headed back to the playground. We played a while longer and drank our lemonade. We headed home around five. The ride home went smoothly.

When we got home, it was 5:30 and the kids were jonesing for some electronic time. Some serious moping began to set in. Poobah and I were in the kitchen discussing plans for the next day and I mentioned the water balloons we’d bought last week. I told him perhaps we could play with those tomorrow as well. Poobah, however, had a better idea. We could defeat the e-withdrawal the kids were going through with a good old fashioned water balloon war. I’ll admit I groaned a bit, knowing I was the designated water balloon filler-upper and tie-er-offer. But I put on my brave solider face and began to prepare to go to war.

Poobah brought a bin and put it on the dryer. I stood at the sink between our washer and dryer and commenced prepping the artillery. Soldier Boy and The Ax were on board and a bit giddy with anticipation, bit Tree was still sitting sullenly upstairs. As I filled, little Ax went upstairs and convinced Tree to join us. We were all excited. It was Poobah and Soldier Boy versus Tree and The Ax. Princess would no doubt wind up as collateral damage. They quickly used up the stockpile I’d supplied and starting coming in to ask for more. They were throwing them as fast as I could make them, faster actually. They all got in some good hits, their favorites hit being, of course, the ones that landed on Poobah. He was a good (soaked) sport and gave it back without mercy. Eventually my fingers grew weary from tying off so many little balloons and I called the battle over ( I looked on the balloon package and realized we’d gone through a good chunk of a bag containing 200 balloons). But not before getting in one shot myself: I launched a balloon from within the basement right at Poobah’s head as he bent over to help the baby. Line drive, direct hit, I sunk his battleship. He commended me on a good shot as he shook the water from his hair.

By this time, it was 6:45 and the kids were ready for the electronic fast to be over. They managed to maintain their cool and Poobah showed them some mercy, letting them break the fast five minutes early. I’d just finished making dinner at that point, but I gave them a five minute stay to get a quick fix. We ate a nice family dinner with Tree’ leftover birthday cake for dessert, and then the boys played their respective devices and Poobah watched the baby as I rinsed the dishes and swept the floor (Poobah washes the dishes but every now and then I do remember to rinse them so they aren’t crusted over when he washes them later on. Want to paint an accurate picture here, credit goes where credit’s due and all that).

All in all, it had been a great day. No meltdowns, no sunburns or broken bones, no one going into convulsions from lack of screen time. Good family time spent doing something together instead of sitting in the same room, staring at screens next to one another. We’d managed to pull them out of their games and into this thing called life. Let’s hope we keep doing it, a little more each day.