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.

Inauguration

The past couple of weekends, while rounding on patients, I got to periodically keep up with the various playoff games as they were happening because so many patients had the games on in their rooms.

Today, everyone had the inauguration ceremony on.  Our team just happened to stop into two consecutive patient rooms with serendipitous timing, the first just at the right moment to see the swearing-in and then the second just in time to catch Beyonce's national anthem.

Our patient, when Beyonce started singing - quietly, musically, sweetly - said out loud, "Why she singin' like that?  Why she bein' all quiet like that??  I don't like this voice."  Her mother chimed in, "That's not Beyonce!"  And then, a couple of seconds later, when the singer opened up her famous pipes and started belting it out, they both together said, "There she is!!"

So there was our whole team, six of us, standing in a semi-circle around our patient's bed, with our patient and her mother sitting on it, and all of us in the room watching the TV screen for the whole two minutes and twenty-five seconds it took for our national anthem to be sung, not moving.

And I have to admit - I got ever so slightly choked up.

Looking around the room, I was suddenly filled with pride, even patriotism.  The people in that room represented at least five different ethnicities.  We had originated from at least three different countries.  We hailed from several different states and had very different backgrounds.  Most of us spoke different languages from each other.  We all stood, spellbound together, and watched our democratically-elected African-American president be inaugurated for the second time, peacefully and with great celebration, in front of an enormous crowd at least as diverse as the group we made up.  It was sort of beautiful.

I was also thinking about where I was four years ago, when President Obama was sworn in for the first time.  I was in Charlottesville, VA, in the middle of my post-bac year, probably studying for an organic chemistry exam and praying with all my might that my efforts in that program would get me into a medical school.  And that made me think something else, too - it continually amazes me how crazy-fast time flies, but not only that, it made me realize just how glad I am to be here, in this place, doing this work, with these people, today.  I may not always feel it, but I am lucky.

Day One

The patient was not a young man, but his disabilities and medical problems far outstripped his chronological age.  Chief among them was diabetes.  Disadvantaged circumstances, hard living, some drug use here and there, and good dose of the euphamistically-termed "health illiteracy" were among the many factors that got him to where he was that day.  Admitted to our service from the ED with a chief complaint of chest pain and syncope, he nonetheless had a laundry list of different issues we would need to address, including a seeping wound left behind from the recent amputation of all of his toes on one foot, the unfortunate and unfortunately predictable consequence of an advanced diabetic foot ulcer.  It was actually the least of his worries on this hospital visit.

The resident who had worked him up introduced him to the rest of the team and summarized his lengthy problem list, verifying details with him and clarifying others.  There was a serious discussion of the points that most concerned us regarding the state of his health.  The patient nodded along.  Very little of this was new information for him, but this most recent incident seemed like it had hit home in a rather new way.  He seemed eager to collaborate; he spoke of experiencing a wake-up call and told us that he fully intended to live a long life, as healthy as he could make it.

The attending wrapped up the summary of the plan going forward, checking to make sure all the patient's questions had been answered and that all of us on the team were on the same page.  The patient shook her hand and looked around at everyone else in the room, saying how much he appreciated the help.

There were the usual "okay"s and "very good"s and "we'll be back to check in on you, sir"s as we collectively straightened up and slowly turned to shuffle for the door.  His face still worked, betraying unfinished thoughts.

"Hey, Doc?  Can I tell you somethin' that's really just been on my mind?"  His voice dropped, softer, timid, something maybe a little bashful about it.  His fingers worried the thin sheets in his lap, rolling and twisting the fabric in small movements.  His chin dropped to his chest as his eyes momentarily closed; every muscle in his face moved together to paint weariness and suffering into deep crevices.

"Diabetes just... sucks, man."  Head lurched with voice for greatest possible emphasis.  "I just... caint even tell you how much it sucks.  It just makes everything bad, man..." he heaved a great sigh.  "I just caint even describe to you all the suffering it causes me.  It's just right up there next to marriage!"  And with that, hands slapped thighs, head lurched again, this time with crackly laughter.  His eyes twinkled at us, checking to make sure we got the joke, as he shook his head, shoulders bouncing.  A fine tension dissolved as we broke into smiles along with him, an unexpected bit of levity trailing behind us as we left his room and moved on down the hallway.

Welcome to the medicine rotation.

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.

Cameo!

When I first got to Emory, someone told me about this really awesome doctor here with a blog about working at Grady.  A quick Google search turned up Reflections of a Grady Doctor.  I quickly became a devoted reader, and was later lucky enough to meet and get to know the amazing Dr. Manning.  She challenges and inspires me as a doctor and a writer and a human being, and her blog is among my required reading - it is funny, insightful and well-written (it's also guaranteed to make you cry.)

And now I have a small little cameo on it!  Dr. Manning asked if she could use some pics I have taken of Grady for a recent post.  How cool is that??

If you don't already read Grady Doctor, you should.  Go check her out here!

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.

Reflection

My preceptor for the afternoon was a female surgeon, obviously supremely competent and almost aggressively confident.  Her black pumps came to a sharp point at her toes and her black hair was pulled back into a no-nonsense ponytail.  As the medical student assigned to her for the day, and on only my third day of rotations, no less, I sensed right away that I could only hope to stay out of her way and not piss her off, at best.  But I needn’t have worried; she hardly seemed to register that I was even there.  This made for as close to the ideal fly-on-the-wall observation opportunity as I was likely to ever have. 

~ ~ ~

The patient was a gentleman who came in with his wife.  They were an extremely gracious, polite, and terrified-looking middle-aged couple.  The wife was slim and fragile; she wore a form-fitting, animal print sweater on top of slim-cut black pants.  Her jewelry looked heavy and expensive.  Her makeup was just slightly too enthusiastically applied; her heavy black eyeliner made her large eyes stand out even more, and meticulously applied lipstick tried hard to make her thin lips look fuller than they were.  He was soft-spoken and nervous, although he seemed like the kind of person who would not naturally experience nervousness often.  His impeccably ironed button-down was tucked into blue jeans that fell to spit-shined loafers and his thinning hair was parted deeply to the side and carefully combed.

The surgeon introduced herself, and the wife spoke first.  Her words rushed over each other.

“Thank you so much for seeing us, we are so glad to meet you.  We just have so many questions for you.  I have been doing some research online…” and she pulled out a stack of articles she’d printed off, all manner of information from all manner of sources that likely ran the gamut from reputable and reliable to the opposite of reputable and reliable.  She’d read everything she could find about her husband’s thyroid cancer.  She was as familiar with the basics of different treatment options as she was with the horror stories – the worst outcomes conceivable, both actual and imagined.  Her hands fluttered as she spoke, flipping through the deep pile.

The surgeon all but rolled her eyes as she opened the patient’s chart on the computer in the room.

“Alright, when do you want to schedule the surgery?”

“So, will you be the one doing the surgery?” the wife asked.  The surgeon nodded over her shoulder, saying yes without glancing up from the chart. 

“Oh, we have just been so worried ever since his biopsy came back positive.  We aren’t sleeping, we aren’t eating… it’s been two weeks, and both of us are losing weight…” the wife’s brow wrinkled and the already-red rims of her eyes now brimmed as she exchanged glances with her husband.

The surgeon spun around.

“What are you worried about?”  The question did not sound kind.

The patient and his wife both stopped, taken aback.  They looked at each other and then at her, expressions bewildered.  “Well…” he started, and paused for breath.

“It’s cancer, right?” his wife said, her voice betraying her confusion.

“Yeah, and we just take it out, and it’s fine,” the surgeon made no effort to slow down or modulate the tone of her voice, to accommodate for the fact that her patient and his wife had misunderstood the nature of his disease, to allay their worst fears or take the time to provide reassurance.

Such was the couple’s relief upon hearing for the first time that they didn’t need to worry and that everything would be alright that not even the surgeon’s bungled delivery could overshadow it.  She hardly spent five minutes with them, making sure to get consent for the surgery and a date agreed upon.  They both thanked her profusely as she shook their hands cursorily and walked out; they even thanked me, the silent bystander, smiling gratefully, tears in their eyes.

~ ~ ~

As I watched this scene unfold, cringing inwardly and feeling badly for this sweet couple and the brusque treatment they received at the hands of their surgeon during a very distressing time, I realized something else: it was entirely possible that the surgeon did not even realize what was going on. 

There was no extra reassurance that everything would, in fact, be all right.  There was no recognition that getting a positive biopsy report must have worried them, no validation that the word “cancer” carries frightening implications.  No comforting after what had obviously been a harrowing two weeks.

It might have been that the surgeon had had a bad day, or week, or year; doctors are human, after all.  It might have been that the surgeon did realize that this couple had simply not been well informed and that, for whatever reason, she just didn’t have the time or the patience or the emotional reserves to treat the case with the care it deserved.

But it might have been that she wasn’t just refusing to gently explain to her patient and his wife that the cancer was not life-threatening, that it was totally curable, but that they had been rightfully distraught by a scary-sounding diagnosis.  Indeed, it might have been that she noticed none of the subtext.

In the end, I am not sure that the reason matters.  It was a missed opportunity to really connect with and care for her patient.  She will no doubt be able to remove his cancer and help him make a full recovery.  But she will not play any part in his healing.

~ ~ ~

Easier said than done.  A truism in most circumstances, and I will humbly admit that it is almost certainly truer in this situation than many others.  Without a doubt, my current vantage point makes it much easier to see patient interactions with greater perspective.

In these first few weeks of clinical rotations, I have often made mental notes to myself regarding physician behavior.  Some of those notes have read like this: remember this!  DO THIS when you have patients of your own!  And some of them go something like this: do not EVER treat a patient this way.  Oh, and try not to let anyone else around you treat patients this way, either.

Hopefully, these observations will become valuable lessons.  Because if I don’t learn them, then my time and purpose in going to medical school will truly have been wasted, and the reasons will have nothing to do with whether or not I will be able to cure my patients’ medical ailments.

Palliative Care

Last week my subspecialty rotation was palliative care.

And I almost lost it.  About 57 times.

There was lots going on... I have been sick, I was PMS-ing, I am apartment hunting and very behind in my studying and feeling very overwhelmed about both of those things and about life in general... anyway, like I said, just lots going on.  Lots of reasons for my feeling extra emotional.

But then I got to palliative care, and first of all, all the doctors and NPs on the service are awesome.  Like, really awesome and amazing people.  And the work that they do is just incredible... they give the kind of care that I think about 90% of people who want to be doctors think they want to give (until they get to medical school, and then internship, and then residency, and then fellowship, and then by the time they are finally practicing on their own and earning more than a public school teacher's salary, all of those ideals are long since gone and they have become bitter people with inflated senses of self-importance and discussions about "best patient care" have become relics of a distant past... I digress.)  

Then I got to palliative care, and it was all I could do to not have to run sprinting from every patient encounter, bawling.

Palliative care docs really take care of people.  And not just patients--they take care of their patients and they take care of their patients' families and friends.  They support the support system.  "Palliative care" means best supportive care; contrary to common belief, it encompasses hospice care but it is not the same as hospice.  It is not just end-of-life care--there is a lot more to it than that.  Yes, it often comes into the picture near the end of a patient's life, but it is not limited to it.

Palliative care providers focus on caring for the whole patient, including their medical, physical, emotional, and spiritual needs.  Palliative care teams frequently help with pain management; what is unique about their approach, though, is their implicit recognition that pain does not exist solely on the physical level.  Palliative care will help to manage pain from all its myriad sources, whether from metastatic cancer or from broken relationships.  Quite often, this involves simply listening.  Just sitting with a patient, or the patient's daughter, or the patient's brother, or the patient's entire extended family.  And really listening.  And it is truly powerful, what that one act can accomplish.  It can be a healing act.

There is an art to this act, and it is one that the providers I worked with last week had down beautifully.  I sat with them as they broke bad news to patients and their families, reviewed pain medication regimens, gently emphasized that it was now time to start planning for a move to hospice, tactfully facilitated meetings about living wills and code status and DNR orders, compassionately counseled struggling children of critically ill ICU patients.  

And I could not help it--during those meetings, I would start to think, what if this were my mother on this ventilator?  What if this were me and my siblings, discussing my father's care?  What if it were me having to make these decisions? 

I repeatedly had to do the thing where you suddenly focus very intensely on something on the floor and you force yourself to think about how your shoes are pinching your toes, or baseball, or the parking ticket you just got, or the laundry that you need to do when you get home, and you blink furiously to keep the stinging in your eyes from leaking all the way out.  It took every ounce of concentration I had not to burst into tears multiple times.

I found myself at home at the end of those days, really needing to de-brief with my friends and my classmates.  I couldn't even tell some of the stories from the week without breaking down.  Even now, as I type this, I can feel the knot rising in my throat.  It was a powerful and touching week... and even though I absolutely loved the experience, I am not sure that I have it in me to do that kind of work day in and day out.  I am not sure that I know how to tread the line well enough between being destroyed by the everyday tragedies that surround you in that setting and just becoming hard and unfeeling, shutting it all out.

I recently read about a program designed to do just that--to help physicians navigate that emotional in-between.  I think the idea sounds amazing, and I am even more excited because Emory happens to be one of the institutions joining up to implement it this year.  

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Sharing the Stresses of Being a Doctor

By Pauline W. Chen, M.D.

September 15, 2011

One afternoon, a doctor friend whose clinical skills and bedside manner I’ve long admired called wanting desperately to talk about her day. Exasperated, and feeling as if she had no one to turn to at work, she reached out to me, her friend.

Earlier that day, a transplant patient had threatened to stop taking one of his medications. Proud of his looks, he had become despondent when the drug made his gums swell. “He thought he looked like a freak,” my friend said.

But he needed the drug to keep his body from rejecting the transplanted organ, so my friend tried to reason with him. When that didn’t work, she began bargaining, then pleading and cajoling. The more he refused, the more frustrated she got. To her, swollen gums seemed like a small price to pay for a lifesaving transplant, and she found herself growing increasingly angry with the patient.

“All those ideals about empathizing with patients and respecting their choices went flying right out the window,” she said. She had thought about asking a colleague at work for advice but feared she would be judged, even blamed. “Everyone is ready to tell us to be caring and compassionate, but it’s really hard sometimes, trying to do to the right thing all alone.”

Studies have shown that health care that respects patient values and preferences influences how well patients do. Statistics show that such compassionate care can improve control of diabetes, increase patient adherence to treatment recommendations, decrease the use of costly diagnostic testing and lower hospitalization readmission rates for ailments like heart attacks and pneumonia.

But the mounting evidence has also led to a flood of new mandates, how-to tips, scorecards and reimbursement policies linked to the new standards. And there is no shortage of experts eager to explain it all and to remind clinicians to, well, be compassionate.

The enthusiasm reflects excellent intentions, of course. The problem is that when faced with a complicated case that falls outside of the relatively simplistic boundaries of the irreproachable truisms, caregivers are almost always on their own. That professional isolation — and the moral distress that goes with it — has contributed to alarming levels of professional burnout.

But one organization has been working to change that by quietly focusing where others have not: on supporting caregivers in their everyday clinical work.

Inspired by the experiences of Kenneth B. Schwartz, a Boston health care lawyer who died of cancer in 1995 at the age of 40, the Schwartz Center for Compassionate Healthcare has for the last 15 years run a program known simply as Schwartz Rounds. Held on a monthly or bimonthly basis in hospitals, nursing homes, community health centers and academic medical centers across the country, these rounds, or meetings, are an opportunity for clinicians to discuss emotionally challenging cases or issues in their work.

Led by a trained facilitator, the rounds attract up to 200 doctors, nurses, social workers and other caregivers and employees. There is a strict code of confidentiality. Typical topics include cases in which a clinician and patient can no longer communicate effectively because of differing religious views, instances in which a caregiver makes mistakes and situations in which patients or their family members become violent with caregivers.

The discussions that ensue are often emotional. But instead of focusing on blame, discussion leaders work to transform these stressful moments into an opportunity for clinicians from all disciplines to encourage and support one another. “With problems like these, people usually just end up pointing fingers,” said Dr. Stephen Nalbach, a resident in neurosurgery at Brigham and Women’s Hospital in Boston. “Schwartz Rounds is like a conversation where we get to debrief and learn from others and try to do better, instead of just moving on and forgetting.”

While early critics might have been skeptical about the effect of these meetings, a recent study in the journal Academic Medicine has shown that clinicians who attend Schwartz Rounds feel significantly less stress and are better able to cope with the demands of their work. The more frequently they attend rounds, the more easily they discuss sensitive issues with their patients.

What’s more, they feel energized about their work and better equipped to come up with new strategies for handling difficult patient situations. Institutional culture has been shown to improve as well, with about half of all participants citing a greater focus on patient-centered and team-based care at hospitals that hold Schwartz Rounds.

The change even trickles down to the language of the workplace. “At some centers, ‘Schwartz’ has become a verb,” said Julie Rosen, executive director of the Schwartz Center. “To ‘de-Schwartz’ means to lose one’s compassion, and to ‘Schwartz it’ means to add conviction and compassion to a job.”

Offering these rounds requires a significant commitment from both the center and the more than 200 hospitals that currently hold the rounds. The cost for the first year, not including the time and effort of on-site clinicians who must step away from their work to attend or those involved in the planning of each meeting, is approximately $15,000 per institution. The Schwartz Center, which relies primarily on philanthropic sources for its own operations, generally pays a large part of these initial costs, but thereafter each site shoulders most of its own expenses while the center provides ongoing support in the form of evaluations, regular visits and handouts and other materials.

Despite these expenses, the center is continuing to expand the program. An additional 31 hospitals, including Emory University Hospital, Geisinger Medical Center and Stanford University Hospital, have joined the program this year. The center has also begun working with hospitals in Britain, where six centers now hold Schwartz Rounds.

In an essay he published shortly before he died, Mr. Schwartz described the relationships he had with several of his caregivers during his final months of life. Struggling to come to terms with leaving behind a wife and 3-year-old son, he wrote that the “acts of kindness — the simple touch from my caregivers — have made the unbearable bearable.”

“If I have learned anything,” he continued, “it is that we never know when, how or whom a serious illness will strike. If and when it does, each one of us wants not simply the best possible care for our body but for our whole being.”

His legacy has made that possible for all of us, patients and caregivers.

You Can't Handle the Truth?

Writing for the Well Blog on the New York Times, Dr. Pauline Chen has produced numerous essays that I always find very interesting and oddly well-timed. 

This particular subject has come up recently in conversations with friends: when doctors are less than totally forthcoming with their patients.  We would know - we are the medical students who silently observe behavior on both sides of the patient's door.  It doesn't escape us when the doctor, by way of explaining a little about the patient's history and current problem, tells us that their tumor is inoperable, and then steps confidently into the examination room that holds the waiting patient, and tells them that "there might be something we can do."  And then, after exiting the room and shutting the door, shakes his head and says to us, "No.  There's no way he is going to make it."

I am not exaggerating at all about that story.  I was the medical student.  My peers and I all have multiple versions of our own, variations on the theme.

Not every doctor does this.  I have observed physicians who truthfully and tactfully lay out everything they know for their patients and allow them to make truly informed decisions.  But plenty of them fudge or obscure the truth.  Maybe some of the difficulty lies in what the "truth" is in medicine... doctors certainly do not know everything, nor can they predict every outcome.  Getting a second opinion is not necessarily  mistrustful or naive.  Then, too, there are surely patients who do not want to hear that their options have run out, just as there are patients who definitely do want to know, for whom a brutally honest prognosis will help them to prepare emotionally, spiritually and otherwise for what lies ahead.

If your doctor really believed there was nothing more he could do for you, would you want to know?

When Doctors Don’t Tell the Truth

By Pauline Chen, M.D.

March 1, 2012
New York Times

Every spring, a former patient and his elderly parents would drive two hours to the hospital carrying chocolates for the staff — an epicurean celebration of the man’s successful liver transplant a few years earlier. The patient, tall, in his 30s and with sandy-brown hair, handed out the boxes, and his parents, their parched-earth faces beaming with joy, shook everyone’s hands.

But each time the parents came over to me, there seemed to be a moment of hesitation.

On the night of their son’s transplant, I was the doctor who relayed the grim details of their son’s state. As he lay in the intensive care unit waiting for the organ, I described to them his deep coma, his complete dependence on a breathing machine, his blood, which had become as thin as water, and his need for such high doses of an intravenous infusion to support his blood pressure that if we couldn’t do the operation soon, it would be impossible to move him even the few hundred feet to the operating room for a lifesaving transplant.

Because I believed that it was my duty as their son’s doctor to be truthful, I told them that their only child might die.

Fortunately, my dire prediction proved incorrect. And while I never questioned the importance of a doctor’s honesty, every year that couple and their son returned, I wondered again if my devotion to this professional ideal had come at a significant cost: their hope.

According to a study published last month in the journal Health Affairs, I am not the only doctor to have struggled with transparency and honesty.

Researchers from the Mongan Institute for Health Policy at Massachusetts General Hospital in Boston created a survey based on the Charter on Medical Professionalism, a widely accepted code of professional behavior that upholds patient autonomy and the crucial role of physician honesty and transparency. Doctors who took the survey received $20 and were asked about their attitudes and their behaviors in the past year.

While a majority of the nearly 2,000 doctors polled believed that physicians should never lie to patients or fail to inform them of the risks and benefits of a procedure or treatment, a large number also revealed that they had not been completely honest or transparent over the past year. More than half had described a patient’s prognosis more optimistically than warranted. More than 10 percent had said something untrue. And even though almost all the doctors said that they believed confidential health information should be disclosed only with authorization, more than two-thirds had revealed private health information to others without the patient’s explicit permission.

“These results reveal a breakdown in communication that makes patient-centered care much more difficult,” said Eric G. Campbell, senior author of the study and an associate professor of medicine at Harvard Medical School, who directs research at the Mongan Institute.

The researchers were not able to assess why some doctors might have been compelled to veil or avoid the truth, but “I don’t believe doctors set out to be dishonest or have some kind of malicious or nefarious intent,” said Dr. Lisa I. Iezzoni, the study’s lead author and a professor of medicine at Harvard Medical School, who is director of the Mongan Institute. Dr. Iezzoni noted that some doctors might have worried that talking about a topic like weight loss could offend an overweight patient and even backfire. She added that others might have glossed over a terminal diagnosis, fearing that the patient and family members would never recover from a frank discussion of such devastating news.

But however well-intentioned these assumptions about how patients will react are, they are also often incorrect. Studies have shown that even in the gravest of circumstances, patients prefer accurate and honest information. Patients with a terminal diagnosis, for example, may be grateful to have the chance to put their personal affairs in order before it’s too late. “Patients need the truth so they can best make decisions for themselves,” Dr. Iezzoni noted.

The best approach, for both doctors and patients, may be to discuss preferences about communicating before difficult medical issues arise. “Patients need to sit back and think about how they’d like to learn about something related to their health,” Dr. Iezzoni said. These preliminary discussions are especially important for patients who may not want or be able to tolerate full disclosure, as in the case of children who are ill, individuals with progressive conditions like Alzheimer’s or Lou Gehrig’s disease, or those who come from cultures in which it may be acceptable to disclose a terminal or difficult diagnosis to the family but not to the patient.

Despite what some might consider dispiriting findings, the researchers remain optimistic about ways to improve communication and the future of the patient-doctor relationship. “I see patient-centered care as a work in progress,” Dr. Iezzoni said. That work includes teaching young doctors better communication skills, establishing reimbursement systems that allow time for conversations and recognizing just how challenging honesty and transparency can sometimes be.

The last time I saw the parents of my former patient, I finally summoned up the courage to revisit our conversation on the night of his transplant. I apologized for having been perhaps too honest.

As I spoke, I saw the parents’ smiles disappear, and once again I sensed that painful moment of hesitation.

Then the patient’s mother stepped forward and clasped my right hand. “That was a terrible time,” she said. “But,” she added, looking at her son, “what if things had turned out differently and we hadn’t even known?”

When the End Comes

In honor of someone I love, and someone he's losing.

How Doctors Die

It’s Not Like the Rest of Us, But It Should Be

by Ken Murray

Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.

It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.

Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen—that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).

Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.

To administer medical care that makes people suffer is anguishing. Physicians are trained to gather information without revealing any of their own feelings, but in private, among fellow doctors, they’ll vent. “How can anyone do that to their family members?” they’ll ask. I suspect it’s one reason physicians have higher rates of alcohol abuse and depression than professionals in most other fields. I know it’s one reason I stopped participating in hospital care for the last 10 years of my practice.

How has it come to this—that doctors administer so much care that they wouldn’t want for themselves? The simple, or not-so-simple, answer is this: patients, doctors, and the system.

To see how patients play a role, imagine a scenario in which someone has lost consciousness and been admitted to an emergency room. As is so often the case, no one has made a plan for this situation, and shocked and scared family members find themselves caught up in a maze of choices. They’re overwhelmed. When doctors ask if they want “everything” done, they answer yes. Then the nightmare begins. Sometimes, a family really means “do everything,” but often they just mean “do everything that’s reasonable.” The problem is that they may not know what’s reasonable, nor, in their confusion and sorrow, will they ask about it or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether it is reasonable or not.

The above scenario is a common one. Feeding into the problem are unrealistic expectations of what doctors can accomplish. Many people think of CPR as a reliable lifesaver when, in fact, the results are usually poor. I’ve had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who’d had no heart troubles (for those who want specifics, he had a “tension pneumothorax”), walked out of the hospital. If a patient suffers from severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal, while the odds of suffering are overwhelming. Poor knowledge and misguided expectations lead to a lot of bad decisions.

But of course it’s not just patients making these things happen. Doctors play an enabling role, too. The trouble is that even doctors who hate to administer futile care must find a way to address the wishes of patients and families. Imagine, once again, the emergency room with those grieving, possibly hysterical, family members. They do not know the doctor. Establishing trust and confidence under such circumstances is a very delicate thing. People are prepared to think the doctor is acting out of base motives, trying to save time, or money, or effort, especially if the doctor is advising against further treatment.

Some doctors are stronger communicators than others, and some doctors are more adamant, but the pressures they all face are similar. When I faced circumstances involving end-of-life choices, I adopted the approach of laying out only the options that I thought were reasonable (as I would in any situation) as early in the process as possible. When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly. If patients or families still insisted on treatments I considered pointless or harmful, I would offer to transfer their care to another doctor or hospital.

Should I have been more forceful at times? I know that some of those transfers still haunt me. One of the patients of whom I was most fond was an attorney from a famous political family. She had severe diabetes and terrible circulation, and, at one point, she developed a painful sore on her foot. Knowing the hazards of hospitals, I did everything I could to keep her from resorting to surgery. Still, she sought out outside experts with whom I had no relationship. Not knowing as much about her as I did, they decided to perform bypass surgery on her chronically clogged blood vessels in both legs. This didn’t restore her circulation, and the surgical wounds wouldn’t heal. Her feet became gangrenous, and she endured bilateral leg amputations. Two weeks later, in the famous medical center in which all this had occurred, she died.

It’s easy to find fault with both doctors and patients in such stories, but in many ways all the parties are simply victims of a larger system that encourages excessive treatment. In some unfortunate cases, doctors use the fee-for-service model to do everything they can, no matter how pointless, to make money. More commonly, though, doctors are fearful of litigation and do whatever they’re asked, with little feedback, to avoid getting in trouble.

Even when the right preparations have been made, the system can still swallow people up. One of my patients was a man named Jack, a 78-year-old who had been ill for years and undergone about 15 major surgical procedures. He explained to me that he never, under any circumstances, wanted to be placed on life support machines again. One Saturday, however, Jack suffered a massive stroke and got admitted to the emergency room unconscious, without his wife. Doctors did everything possible to resuscitate him and put him on life support in the ICU. This was Jack’s worst nightmare. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.

Even with all his wishes documented, Jack hadn’t died as he’d hoped. The system had intervened. One of the nurses, I later found out, even reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it, of course; Jack’s wishes had been spelled out explicitly, and he’d left the paperwork to prove it. But the prospect of a police investigation is terrifying for any physician. I could far more easily have left Jack on life support against his stated wishes, prolonging his life, and his suffering, a few more weeks. I would even have made a little more money, and Medicare would have ended up with an additional $500,000 bill. It’s no wonder many doctors err on the side of overtreatment.

But doctors still don’t over-treat themselves. They see the consequences of this constantly. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures. I was struck to hear on the radio recently that the famous reporter Tom Wicker had “died peacefully at home, surrounded by his family.” Such stories are, thankfully, increasingly common.

Several years ago, my older cousin Torch (born at home by the light of a flashlight—or torch) had a seizure that turned out to be the result of lung cancer that had gone to his brain. I arranged for him to see various specialists, and we learned that with aggressive treatment of his condition, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me.

We spent the next eight months doing a bunch of things that he enjoyed, having fun together like we hadn’t had in decades. We went to Disneyland, his first time. We’d hang out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital foods. He had no serious pain, and he remained high-spirited. One day, he didn’t wake up. He spent the next three days in a coma-like sleep and then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.

Torch was no doctor, but he knew he wanted a life of quality, not just quantity. Don’t most of us? If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors.

Ken Murray, MD, is Clinical Assistant Professor of Family Medicine at USC.