What I Wish I Had Done

I wish I had held his hand more.

One week from finishing my third year of medical school, I just had my first patient die.  

Mr. Wallace* had stage IV adenocarcinoma of the lung.  He was living independently, grocery shopping in his electric-powered wheelchair.  He had been on chemotherapy and radiation and he was all set for another round of palliative treatment when he came in to the hospital.

The last time I saw him, he kept talking about how his friend was about to visit, and he was futzing with his cell phone and saying that when she came, he was going to have her put her number in his phone under "family" instead of "friends" in his contacts list.  

I'm not quite sure why.  He didn't seem to have any family, at least not any that we had heard of during his nearly-three-week stay with us.  She was a good friend of his.  I am not quite sure why it was so important to him that she be listed as family in his cell phone, but it was something that he perseverated on often during that last week.  

"When she comes," he would say, chin tilted up so he could peer through the glasses perched at the tip of his nose at the small flip phone in his hand, "When she gets here, I'm going to have her put her number under family here in my phone, instead of under friends.  When she gets here, I want to have her change her number and put it under family instead of under friends."

He repeated himself over and over.  I would say okay, that sounds great, the first couple of times, and then try to ask one of the questions I needed to ask him - "Mr. Wallace, how is your pain?"  He would ignore me and keep mumbling and muttering, rarely looking up or acknowledging my question, although I knew he had heard me.  I would smile and nod for a few seconds and then try again, "Mr. Wallace, how is your stomach feeling this morning?  Have you had a bowel movement?"

Eventually he would look at me and answer my questions.  I would lean on the side rails of his bed, trying to get a little closer to him so that neither of us felt like I was shouting at him.  I tried not to push very much or very hard on his belly - I knew it was painful for him.  I knew it was riddled with metastatic cancer that was no longer being treated.  

I was off today when he died.

My intern updated me later on in the evening - we were both surprised.  "Didn't think he was that close," she said.  I was taken aback and immediately sad.  So strange, I thought.  Mr. Wallace, gone.  He was just here.  In fact, he had been in the hospital for my entire rotation there.  He was admitted on my first day on service, and he was the first patient I was assigned that day.  

I saw him every day.  But I didn't usually linger too long at his bedside.

He talked slowly.  He mumbled and he rambled and he repeated himself and he ignored questions and he would just keep talking and talking and talking and most days I would finally end up raising my voice just above his and say "Ok, Mr. Wallace!  We'll see you a little later, then, ok?  Bye, Mr. Wallace!" as I backed out of his room.  

I wish I had been more patient with him when he kept talking and talking and talking, repeating the same sentences and phrases and questions over and over and over again.  I had other patients to see.  Other patients that had a lot of the same issues.  Elderly, hard of hearing, terminal illnesses, chronic pain, intractable nausea, hard-to-manage constipation.  

We had a very busy service.  It was a terrible call schedule.  Our team was an extra-special black cloud.  I was carrying five patients - the most, by far, that I had on any other service, all year.  We had morning rounds and noon lectures and student rounds and team rounds and notes to write and people to call and presentations to give and we had all the usual medicine clerkship lectures and exams plus a ton of extra end-of-third-year exams and random things that the school of medicine so conveniently decided to clump all together right in the last two weeks of the year, coinciding perfectly with a multitude of other deadlines.  

I was exhausted, burnt out, feeling physically terrible and emotionally brittle.  Little sleep, long hours, rare days off, constant demands.  Stretched way too thin.

But if I am very honest with myself, if I really, really think about why I didn't take more time with Mr. Wallace, or with a lot of my patients like him, it was because I felt helpless.  I felt totally impotent to help him, completely powerless faced with his problems.  He had originally been admitted for a pneumonia, but then it was one thing, after another, after another.  We had a terrible time fixing his constipation, then his diarrhea, then his constipation again.  We could not seem to get his pain under good control.  His nausea was refractory to everything we could think of.  His pneumonia cleared right up and he did not look better.  He did not get stronger again.  He did not get out of bed again.  His breathing improved only marginally.  We were only providing what amounted to palliative care, and we weren't being all that successful at it.  

I had such a hard time being with him because I knew that we were not making him better.  

A couple of hours after I learned that Mr. Wallace had died, in the middle of my ineffectual review for my exam tomorrow, I suddenly thought of him again and was overwhelmed.  As if the news had not actually sunk in when I heard it, but had just then fully absorbed and hit my bloodstream.  And I started to cry.  

I thought about the last time I went in to see him.  I thought about the first time I met him, and all the times in between.  I remembered how he had been asking for a shave.  I remembered his bald head, his hollowed-out cheeks, his jaundiced skin, the way he only sometimes wore his dentures, how obsessed he was with his cell phone.  And then I thought about how he won't be there tomorrow when I go in, and I cried.  I am still crying.

Maybe this is everyone's experience the first time their patient dies, I don't know.  But I also just thought about all the times I could have stayed with him longer, but didn't.  I thought about how I had stopped doing much of a physical exam on him when I went in to see him every morning.  I didn't want to exacerbate his pain any more than necessary.  But I wish I had.  I wish that I had touched him more.  I wish that I had held his hand more, just held it and stayed for a little bit longer.  Just listened to him for just a little bit longer.  He had to have been so lonely; I never saw any visitors in his room.  He had no family.  I am sure he probably talked so much from the moment our team would hit his door to the moment we left because he had no one else to talk to.  

I want to believe that we provided good care to him in the final days of his life.  I want to believe that I did a good job with him, that I was at least a little bit kind and comforting.  But all I feel right now is sadness, and regret that I did not do more.  Maybe it always feels this way.  Like I said, this is my first go-around.  I guess there is no way I could have known.  But I wish I had not left his room quite as soon as I did yesterday.

*Name changed to respect patient privacy and HIPAA law.

Everything Possible?

During my nursery week on my pediatrics rotation, I saw a patient in the NICU who, even in the land of unbelievably tiny, critically ill infants, was doing exceptionally poorly.  She weighed around three pounds, required assistance to breathe, had severe hydrocephalus and a ventricular assist device to help shunt the excess fluid out of her skull.  She had already spent more than two months in the unit, and she was still two months away from her estimated due date had she made it to term.  She had been born via emergency C-section when her mother went into pre-term labor as a result of an infection at 22 weeks of pregnancy.  She had a twin sister that did not survive.

For reasons that aren’t entirely clear – perhaps unreliable dating of the pregnancy and therefore the infant’s gestational age, perhaps poor communication between the patient, the obstetricians, and the neonatologist – the neonatologist who was present at her birth believed that she was around 27 or 28 weeks’ gestational age.  She had to make a quick decision at the time of birth about whether or not to intubate the infant, and she says that even though her visual assessment of the girl was that she seemed terribly small, even for a 27-week preemie, she went ahead and intubated anyway.  She says now that she doesn't know if it was the right thing to do, that she had simply acted on the information she had at the time, and that she often regrets it when she passes by the isolette of this horribly fragile, tiny baby.

Babies born prematurely suffer more adverse health outcomes than term babies, and the more premature they are, the greater the number and severity of the complications they have, both in the short-term and the long-term.  Normally, the cutoff age for viability is 24 weeks’ gestation, and babies delivered at this age have a grim outlook – less than 50% even survive – but in this case, an infant even younger than that was kept alive when prevailing best medical practices would have dictated not to resuscitate such a premature baby.  The reasons behind these guidelines are numerous and range from the sheer probability that the child will live to the overwhelming health challenges they are guaranteed to have if they do.  Another, not at all insignificant factor, is the incredible amount of resources it takes to care for them after birth.  The daily average NICU stay exceeds $3,500 per infant, the average NICU stay costs $45,000, and it is not unusual for the total cost of an extended stay to exceed $1 million.  That is the kind of extended stay that Baby 22 Weeks is currently having here in an Atlanta hospital.  It is unclear at this point whether or not she will ever be well or strong enough to leave the NICU, and if she does, what quality of life she will be able to have.  Her mother won’t entertain any sort of conversation at all with her baby’s doctors about how to manage her case other than to “do everything possible”.  

~ ~ ~

No real deep thoughts here tonight.  It's test week, so I have neither the time nor the energy to do a whole lot of reflecting or writing.  I was just doing a quick little write-up for an upcoming ethics session we have during this last week of the peds rotation.  It is supposed to be about an ethical issue that we have witnessed during the rotation, and this is what I kept coming back to.  I am curious about people's thoughts.  I am not at all saying that this baby does not deserve to live, and I really hate the economic/financial expense argument when talking about the worth of a life.  I am in awe of what doctors are able to do, both before and after birth, to save the lives of infants with conditions that, until only very recently in history, would have had a 100% mortality rate.  I'm not even totally sure there is a real ethics issue here: the obstetricians tried to keep the mother's preterm labor at bay, the neonatologist acted to save the life of an infant she believed to be unquestionably viable, the mother wanted (and continues to want) everything possible to be done for a child that she loves.  Surely mistakes were made and surely this outcome was by no means unavoidable.  Maybe it's just the tragedy of the whole situation that gets to me.  Maybe it's just that, in a medical world with so much potential to do so much good, sometimes a lot of very smart people trying their best still get it wrong.  And maybe it's not the ethics of this case that gets to me.  Maybe it's that sometimes there are just no easy answers to be had.

Bicycle Built for Two

Bicycle bicycle bicycle
I want to ride my bicycle bicycle bicycle

I want to ride my bicycle
I want to ride my bike
I want to ride my bicycle
I want to ride it where I like

-Queen, “Bicycle Race”

It won't be a stylish marriage --

I can't afford a carriage,

But you'd look sweet upon the seat

Of a bicycle built for two.

-Harry Dacre, "Daisy Bell (Bicycle Built for Two)"

~ ~ ~

In the world of hipsters and wannabes, wedding blogs and Pinterest, anyone who is between the ages of 20 and 40, or knows anyone between the ages of 20 and 40, will have already been familiar with the adorable image of a tandem bicycle on a wedding invitation (if you haven’t yet, don’t worry – it’s coming.)  However apt the image of a tandem bicycle might be for a new marriage or young love, in the unexpected setting of Parkinson’s disease, it makes an even more fitting, touching and literal symbol of not only love and devotion but even cutting edge medical promise, as well.

~ ~ ~

Parkinson’s Disease is a devastating neurological condition in which the afflicted slowly lose control over the movements of their body.  Slowness, tremors, deterioration of speaking ability and balance are some of the major manifestations of this disorder that affects an estimated 1 million Americans, and for which there is no cure.  In addition to problems with movement, people with PD also commonly suffer from depression, dementia, sexual difficulties and sleep disturbances.

PD is a progressive, degenerative nerve disorder that affects the neurons in the brain that control movement. The main neurons affected are located in the substantia nigra of the basal ganglia, which serve as the coordination center for signals coming from the cortex of the brain to the spinal cord in order to move muscles on command.  Their deterioration causes a deficiency of dopamine, a key chemical for proper brain function and the main neurotransmitter that they produce.  This is where the bicycles come in.

In the spring of 2010, Dr. Bastiaan Bloem of the Radboud University Nijmegen Medical Center in the Netherlands was visited by a patient with advanced Parkinson’s.  This man had been afflicted with the condition for ten years, and he had been left nearly unable to walk at all, with a severe balance deficit, feet that repeatedly froze on the floor and a tremor that would cause him to fall after just a few shuffling steps.

This patient told his doctor that he could, however, still ride his bike perfectly – and was determined to prove it.  So doctor and patient went out to the parking lot, and with the help of a nurse to get him on the bike and shoved off, the patient rode off in perfect control, making a U-turn at the end of the parking lot and pedaling smoothly back, all Parkinson’s symptoms vanished.  The moment he brought the bike to a halt and stepped off, he froze immediately, unable to move his legs in a single step.  The episode was filmed and photographed, and the images were published in the April 1^st, 2010 issue of the New England Journal of Medicine.

Dr. Bloem – wheels turning, as it were – then asked 20 of his other patients severely affected by Parkinson’s disease if they could ride a bike.  It turned out that they all could. 

One explanation for the finding, according to Dr. Bloem, could be that bicycling uses a different part of the brain than walking – and that this part might not be so severely affected by Parkinson’s disease.  It could be, perhaps, that bicycling doesn’t require very much input from the part of the brain that’s diseased in Parkinson’s patients, the basal ganglia.  It’s the basal ganglia that processes signals for voluntary movements, and its impairment is the reason Parkinson’s patients freeze – the part of the brain that tells them what to do next isn’t functioning.  It’s certainly possible that one of the reasons the Dutch patient wasn’t showing any sign of Parkinson’s while riding a bike is that riding a bike doesn’t require a lot of signal processing in the basal ganglia.  Nurses helped the patient onto the bike and got him going, but once he was going, he could keep doing the same thing without much thought about motor strategies.  (Gives new significance to the old adage, “like riding a bike.”)

Another theory regarding the reason for this phenomenon is that it could be that the rhythmic pressure of the pedals on patients’ feet cues the nervous system to allow a cycling movement.  He suggests that the rotary motion of the pedals may provide an external pacing cue that keeps the Parkinson’s patients on track.  Given appropriate visual or emotional cues, people with Parkinson’s can dance, walk without freezing and perform complex movements for a few minutes at a time.  For example, there are many stories about patients with PD being caught in a building on fire and finding themselves able to run down stairs and escape safely, only to have symptoms return as soon as they got outside.  But this kinesia paradox, as it is known, does not last long, and is entirely different from being able to ride a bike flawlessly for miles at a time.  Until now, it was not known that patients with Parkinson’s could ride bikes.

In fact, the "bicycle sign" might help clinicians differentiate between the Parkinson’s disease and Parkinsonism of other disorders.  Patients with atypical Parkinsonism lose their ability to cycle during the early phase of the illness, while patients with Parkinson's disease continue to ride well.  This has important treatment implications because atypical Parkinsonism disorders can often look very similar to Parkinson's disease, but respond differently to therapy.  There is a legitimate question of whether or not the bicycle sign is universally applicable, given environmental and cultural differences between patients (Dr. Bloem and his patients reside in the the Netherlands, where absolutely everyone rides a bike.) 

~ ~ ~

While there are a number of useful medications that help ease Parkinson’s disease symptoms for a few hours, advancements in significant relief have eluded Parkinson’s researchers.  In a surprising and somewhat whimsical discovery, new evidence suggests that tandem cycling may bring a longer relief from the disease’s symptoms, with improvements lasting for weeks at a time.

The serendipitous discovery was made in 2003 when neuroscientist Jay Alberts, then a Parkinson’s disease researcher at Emory University in Atlanta, rode a tandem bike across the state of Iowa with his friend Cathy Frazier, a Parkinson’s patient.  The two were riding the staewide bicycle tour to raise awareness of the neurodegenerative disease, but they also found, much to both of their surprise, that her tremors disappeared after about an hour of riding.  She told him that she felt great while riding and that it was as if she didn’t have the disease.  They also noticed that her handwriting improved.  Patients with Parkinson’s often develop micrographia, meaning that their handwriting becomes small and illegible.  Alberts’ friend Cathy had noticed the progressive shrinking and illegibility of her handwriting as her PD progressed, but during this bike tour, she wrote on a birthday card with beautiful, large, legible letters.  It made Alberts take note.

Alberts wondered if this mysterious side effect of the tandem bike ride held an intriguing medical possibility: the improved motor control in the arms and hands even though only the legs were exercising seemed to suggest that there was some change taking place in the central nervous system that improved global motor function, perhaps by triggering the release of biochemical messengers.

Now a researcher at the Cleveland Clinic, Jay Alberts has conducted several studies with Parkinson’s patients inspired by these discoveries and his passion for biking.  Many patients are able to lower their medication dosages and regain motion in extremities.  Other patients have regained their sense of smell from bike riding, which is commonly lost in PD and often one of the first symptoms that patients notice before being diagnosed.

Dr. Alberts had volunteers with Parkinson’s ride a solo stationary bicycle at his or her own pace.  Most chose a pedaling cadence of around 60 revolutions per minute, a relatively non-strenuous level of exertion.  He then placed them on the back seat of a tandem bike that had been modified to ensure that the back rider would have to actively pedal; he or she could not just passively let the pedals turn.  On the tandem, the rider in front had been instructed to pedal at a cadence of about 90 RPM and with higher force output or wattage than the patients had produced on their own.  The result was that the riders in back had to pedal harder and faster than was comfortable for them.

Tandem bike riding has turned out to be beneficial therapy for patients, but Alberts determined it was because the exercise was forced.  The challenge of pedaling much faster than normal activates the part of the brain that controls body movements and releases dopamine, which is what improves symptoms in Parkinson's patients.  According to Alberts, the medications often given for symptom improvement in PD activate certain areas of the brain or increase the blood flow there, and an almost identical pattern of activation is seen in the brains of patients who have done forced exercise.

This is an exciting finding because it contrasts with some earlier results involving voluntary exercise and Parkinson’s patients.  In those experiments, the activity was helpful, but often in a limited, localized way.  Weight training, for instance, led to stronger muscles, and slow walking increased walking speed and endurance.  But such regimens typically did not improve Parkinson’s patients’ overall motor control.

The forced pedaling regimen, on the other hand, did lead to better full-body movement control, which prompted Dr. Alberts to conclude that the exercise must be affecting the riders’ brains as well as their muscles.  His theory that was substantiated when he used functional M.R.I. machines to see inside his volunteers’ skulls.  The scans showed that, compared with Parkinson’s patients who hadn’t ridden, the tandem cyclists’ brains were more active.

Dr. Alberts suspects that in Parkinson’s patients, the answer may be simple mathematics. More pedal strokes per minute cause more muscle contractions than fewer pedal strokes, which, in consequence, generate more nervous-system messages to the brain. There, he thinks, biochemical reactions occur in response to the messages, and the more messages, the greater the response.

This raises fascinating questions not only about whether exercise can help to combat the disease but also whether intense, essentially forced workouts affect brains differently than gentler activity does, even in those of us who are healthy.  In lab animals, forced and voluntary exercise can lead to different outcomes.  Mice and rats generally enjoy running, and they will voluntarily hop aboard and run on a wheel placed in their cages.  But if an animal is placed on a treadmill and the speed controlled so that it must keep pace, often with help from a finger prod or electrical shock, the activity becomes forced.

Interestingly, the effects in animals, especially on their brains, are typically more beneficial after forced exercise.  In one study from 2008, rats forced to run wound up with significantly more new brain cells after eight weeks than those who ran when they chose, even though the latter animals ran faster.  And in another experiment, mice that were required to exercise on treadmills subsequently performed better on cognitive tests than those given access to running wheels.

A small eight-week study was launched to gauge the effects of forced exercise in which the patients underwent hour-long sessions of forced riding, pedaling at 80-90 RPM.  And the results were impressive: there was a 35% improvement in motor functioning, significant lessening of tremors and better body control for the patients who did the forced exercise compared with those exercisers who pedaled a stationary bike at their own pace, and the improvement lasted for four weeks after the cycling sessions ended.

Whether forced exercise would similarly affect healthy brains is unknown at this point, he says, as is the question of whether riding on the back of a tandem behind a stronger cyclist is the only qualifying exercise.  It seems likely that intense exercise of any kind should produce comparable brain reactions.  There is even some data showing that people who exercise intensely have a lower risk of developing Parkinson’s and other neurological diseases. 

In addition to motor difficulties, individuals with Parkinson's disease often experience cognitive declines.  And although pharmacologic therapies are helpful in treating motor deficits in PD, they do not appear to be effective for cognitive complications.  While acute bouts of moderate aerobic exercise have been shown to improve cognitive function in healthy adults, individuals with PD often have difficulty with exercise, for obvious reasons.  Another recent study looked the effects of passive leg cycling on executive function in PD, which was assessed with two different tests before and after the cycling.  Volunteers showed significant improvements on the test after exercising, and the difference between times to complete the two exams significantly decreased from pre- and post-cycling times.  It is thought that the improved executive function after passive cycling may be the result of increases in cerebral blood flow, which correlates with theories regarding post-cycling motor function improvement as well, suggesting multiple benefits from forced exercise in patients with PD. 

Regardless, bicycling offers patients an opportunity to be symptom-free while they are riding, to look and feel normal, and to get some real cardiovascular exercise even when their disease is so far advanced that they cannot walk.  The humble tandem bike was one of the Top 10 Medical Innovations for 2010 at Cleveland Clinic.  Remember how awesome that is the next time a bride-to-be tells you how totally adorable she thinks it would be to exit her reception on one.  It could add just the perfect element of kitsch to her perfectly color-coordinated DIY wedding.  But it could also hold the key to someday saving lives.

The Assignment

Our daily routine was familiar, comfortable by now.  

The doctor of the day assigned all of the new consults, dividing them up among the team.  We all split up and headed out to see our new patients and check in on patients we were following from before.  We would reconvene later in the morning to present the new ones to our attending and then round on them as a group.

The patient assigned to me was an 18-year-old girl who had just given birth to her second child.  The OB team was concerned about possible depression.  I opened her chart before going to see her, scanning for the basics about her case.  She had received no prenatal care during this pregnancy.  She had given birth in the bathtub at a friend’s house.  EMS arrived shortly, just after the afterbirth had washed down the drain, and mother and baby were brought to Grady for postpartum care.

I gathered the few things I carried with me to see patients: a few sheets of paper, folded in half; my favorite pen with the ultrafine tip.

She was awake and sitting up when I reached her room.  Her hair was tied back neatly, her face appeared freshly washed.  She was sweet, spoke softly, cooperatively answering all of my questions.

She hadn’t seen the baby much since she’d arrived at the hospital the day before and that was how she wanted it: she did not want to bond with him.  She was totally overwhelmed by the thought of having another baby to take care of, in addition to the 18-month-old daughter she already had at home.  She wanted to give this new baby up for adoption.

It was a slow day on consults and she was my only new patient, so I had plenty of time to spend with her.  I mentally ran through my checklist, making sure that I took a thorough history and that I had every piece of my metal status exam and any other pertinent information I would need to make a good presentation to my attending later that hour.  Her HPI – or History of Present Illness – was confluent with her Social History, as they almost always are in patients with psychiatric symptoms.  In her case it was interesting, and talking with patients is almost always my favorite part of taking care of them.  I think that if there is one thing that I have any natural talent for in medicine, it is just the ability to talk to people.  And I think I am okay at it because I just genuinely enjoy it.

I asked everything I could think of about her situation.  We talked about her ex-boyfriend and the father of this baby, we talked about how their relationship had been and why she had ended it. We talked about her family and her relationship with her parents and her grandmother, who lives with the family.  We talked about her plans for the future, about how she is about to graduate from high school and how she wants to go on to college and what she wants to study.  We talked about why she doesn’t feel up for raising the son she just gave birth to, and about how her family is pressuring her to keep him.  We talked about how she wants to be a good mother to the baby she already has, how she wants to provide a better future for her daughter.

Appears well-groomed and appropriately dressed.  Good eye contact.  Speech spontaneous, appropriate, normal rhythm and tone.  Endorses some depressed mood, but does not meet criteria for Major Depressive Episode.  Denies suicidal and homicidal ideation.  No psychotic symptoms, no evidence for any history of mania or anxiety.   Mood stable.  Affect euthymic, full range, mood-congruent.  Thought process logical, future-oriented, goal-directed.  Cognitively intact.  No past psychiatric history.  No known family psychiatric history.  No other medical issues.  No medications, no allergies. 

This was the first rotation that I have been officially “presenting” patients to attendings.  In medical training, this is basically an exercise in synthesizing pertinent information about a patient based on their clinical presentation and their medical record and then giving a succinct, cohesive oral presentation to the attending physician about what is going on.  Depending on the service and the attending, these presentations can be more informal or very formal, and there is sort of a basic formula that you are supposed to go through for every patient, including all pertinent information in the correct place in your presentation, starting with the patient’s “chief complaint” or presenting symptoms.

Essentially, what you are trying to do is to describe how and why this patient came to be where they are now, both literally and figuratively – to create a story about what is going on with them that will paint a clear picture in the listener’s mind, building a case to support the diagnosis you have come up with and justifying your proposed treatment plan for their care.  It is tricky, though,when you are learning how to do it.  It’s hard to do well, much harder than it sounds, harder than I had thought it would be before I had to do it myself.  And it gets even trickier when the patient has multiple issues going on, or if they have a long or complicated history, or a host of different medications.  Incomplete records and poor self-reported history compounds the difficulty level, and on top of that, every attending has his or her own way of doing and thinking about things, and all they tend to want presentations done a specific way – some want certain information in certain parts of the presentation and some want that information left till a different part of the story, or left out altogether.  It’s almost like a game, and it doesn’t take being corrected very many times to figure out what special thing your instructor du jour wants done in their patient presentations, but there is always a bit of a learning curve.

This was one of my last weeks on psychiatry.  I was finally starting to feel like I was getting the hang of presenting and writing notes and getting all the necessary information from my patient interviews.

It had been a pleasant conversation with this patient.  Hard, sure.  She was definitely in a tough spot, facing a pretty heart-wrenching decision.  But it wasn’t some horrible, senseless, hopeless tragedy, like many other patients’ situations that I have seen.  This was a fairly straightforward case, nothing spectacular or even really notable from a psychiatric perspective.  I really enjoy teenagers and she was easy to talk to.  I cared about her, listened to her for a long time – I liked her.  But it wasn’t until I stood up to go, telling her that I would be back later with my team and that we would be around to talk with her if she ever wanted us to, when she did something that surprised me.  She thanked me, genuinely and emphatically.  And not just with a simple “thank you”.  She went on: “it was so nice of you to come and talk with me.  I really appreciate it.  It’s nice just to be able to talk about this stuff.  It really helps.”  She smiled at me.  I was stopped short.

From my end, from the psychiatry consult service perspective, it was pretty simple.  No depression, no anxiety disorder, not even really any adjustment disorder.  Just a teenager with a hard decision to make, doing really pretty well, all things considered.  Certainly nothing she needed to be “treated” for.  I had screened for all the major things we worry about, made sure I had all the pertinent positives and negatives I needed for my note and my presentation. 

But it really hadn’t even occurred to me until she thanked me that maybe I had done something for her.  That maybe just my presence, my being there, my having sat down with her and listened to her, asking questions occasionally, nodding, smiling, knitting my brow, saying “tell me more about that” and “that must be really tough”…. had been at all therapeutic.  And even worse, it hadn’t occurred to me that she had needed it.

I felt awful.  There was no Axis I pathology here, no personality disorder, no capitalized-letters DSM-IV-diagnosable psychiatric condition… but there was a person.  A person going through a rough time.  A person who was hurting.  And overwhelmed.  And probably feeling like she didn’t have enough support, or anyone she could talk to that didn’t have some sort of vested interest in the outcome of her decision for reasons of their own.  And THAT doesn’t take any sort of special training to recognize.  A person having a hard day, or week, or year?  Someone who just needs to talk?  We’ve all been there.  It is all the more unbelievable and awful to me that I missed it because I am in that position, frequently and currently.  How many times just in the past two weeks have I felt unspeakable comfort and enormous relief after a good talk with someone who cares about me?

How quickly I had forgotten the difference between what I was "supposed" to do and what I was supposed to do in that visit to my patient.  There were educational objectives to be met; my grade for the rotation is based in part on my presentations and my notes, my assessments of patients and my recommendations for treatment based on those assessments.  But my reason for being here - anyone in healthcare's reason for doing this work - is to care for people when they need it.  And those two things, the educational aspect and the patient care aspect, are not always one and the same.

How easy to get mentally stuck in learning mode, and how easy to forget that, simultaneously, I also need to be in caring mode.  It is totally possible, just requires a little bit of conscious reminding myself sometimes.  I wish it didn’t.  I would always rank caring over learning in importance if asked, but maybe it takes a little more thought than that in actual practice.  I think that sometimes, as a medical student, it can feel like you have very little real impact on patients or their care, and then it's harder not to just worry about whether or not you are checking off all the appropriate boxes needed for your evaluations.  Or maybe it's just me.  Either way, my visit with this patient exposed this tendency of mine.  It genuinely surprised me, and it felt disheartening to realize that as much as I may think that I truly care about people and that I always want to put my patients first, I fall short way too often in that regard.  I thought about this 18-year old girl and felt my acute disappointment at not having recognized what she needed for a long time after that visit.  I hope that her story will help remind to me stay vigilant in remembering what my true assignments here are.

Consult

The patient was in the ICU, actively psychotic and with a dangerously low hematocrit and advanced HIV disease.

He was refusing a life-saving transfusion.

As ever, the consult to the psychiatry team was made in response to the patient’s refusal to comply with the primary team’s medical advice.  Our call was to evaluate for him for medical decision-making capacity.

The assumption was that, in this elderly, schizophrenic patient with active delusions about his personal powers and his relationship with God, there was clearly no way that he fully understood his condition or his medical treatment or the ramifications of not accepting that treatment.

It seemed, at first glance, to be a rather cut-and-dried case.  After meeting with him, our team decided that he did not have decision-making capacity since his rationale for refusal of blood products was based on his delusions. From a consult perspective, it was open-and-closed.  Textbook definition of not having capacity.

But something about the case just did not sit right. 

He was an old man.  He was certainly psychotic, but had no history of threatening himself or others.  He looked sick – his significant medical problems had left him emaciated and weak.  He had been arrested for public urination – he was homeless.  And the only thing he wanted was to be left alone. The police had brought him to the hospital when they realized that he was muttering to himself and saying some pretty strange things.

But even though he clearly had delusional beliefs, he was adamant – and consistent – about not wanting blood products or other medications.  And this was not the first time he had found himself in this exact same situation.  Being hauled into the hospital by the police, being found without capacity to make decisions about his own medical care, being forcibly restrained, having IV lines inserted, treated with medications and blood transfusions, and then being discharged again back out to the same situation he came from.  Only to have the scene repeat itself a few weeks later.  And everything about the process from beginning to end remained the same, including the fact that he was still psychotic, muttering to himself, living on the street, getting sicker and weaker, wanting to be left to his own devices and to commune with his God in his own way, and still insisting that he did not want our medical treatment, no matter what we said it would do for him.

He looked at us with such despair from his position on the bed, after all four of his limbs had been tightly strapped down to it, that it made my heart hurt.

He would not live long without medical treatment. But, to him, being forced to accept that treatment was the worst thing in the world.  Technically, legally, he met criteria for not being able to make his own medical decisions, and his doctors were within their rights to give him this life-saving treatment, even against his will.  But he didn’t want it.  He didn’t believe it was right to get someone else’s blood.  And watching him being forced to accept it made me wonder whether our “textbook definitions” really do encompass the best possible compassionate care for our patients.  Patients who, homeless or not, elderly or not, psychotic or not, are human beings deserving of the most humane treatments we can offer – even if that treatment might sometimes be none at all.