Today, on World AIDS Day, I remember Glenn Walker.  That's his real name.  It's important.

I met Glen when I was an intern on the HIV ward at University Hospitals in Cleveland in 1993.  It wasn't called the HIV ward - it was called the SIU - the Special Immunology Unit.  Which didn't fool any of us, of course.   I have very distinct memories of this space, because it was where I made my bones as a doctor.

Glen had no T cells, and was frequently in the hospital.  He was pleasant enough, but he had terrible AIDS related dementia.  He wandered around, getting into other patient's beds and eating other patient's food and sauntering onto the elevator and winding up 3 blocks away, barefoot and panhandling for smokes.  You had to keep your eye on Glen.  And of course he was seriously sick quite a bit of the time, as well, which sent his dementia into the fog of war, where he hit us and fought us and there was real anger in his usually placid eyes.

At first you thought Glen was sweet and tragic, but after a few middle of the night tussles where you had to call security and affix him to his bed with leather restraints, his continuous efforts to be up to something got irritating.  Glen was a pest.  No nursing home could deal with him and even if we could dupe one into taking him, he'd be back with a fever in no time.  He was ours, always, like a permanent 3 year old who was never going to grow up and go to school.  With Glen around, there was never going to be any peace.  We smiled at him, and he smiled back - but we cursed him underneath our breath.

One day during morning report when I was a senior resident, we saw something big fall past the 3rd floor window of the conference room.  Rick Bailey went to the window and looked down.  "It's Glen Walker," he said, only slightly surprised.

Of course it wasn't Glen Walker is what we all thought.  Rick was a prankster.  But of course it was Glen Walker - of course it was.  He'd snuck into a bathroom and stood on a toilet and climbed out a window and fallen 4 stories.  He landed on his feet, shattering his ankles.

The first thought we had:  Glen in a wheelchair with two huge casts will be easier to manage.  Which he was.  The second thought we had:  "Glen No-Walker."

I knew it was wrong, but I sort of forgave all of us for calling him that, because black humor is about the only way you make it through a month on the Special Immunology Unit.   Until Glen Walker died, and his family sent us the program from his memorial service.  On the cover was Glen in full health, looking nothing like the 90 pound wasted man I knew.  And inside was a paragraph about how he had gone to Julliard, where he'd gotten a degree in piano performance.

What a rare and precious thing it is to have that kind of talent.  The ignominy of how we treated him at the end of his life still causes me to feel intense shame.  How could we not have known?  How could we not have asked?  How could we not have reminded ourselves that Glen used to be different - a whole man, same as us?

Well, its a thing.  He was alone, with family in a far away city.  His disease took away his mind and so you could argue there was a good reason we didn't feel his humanity the way we should have.  I'm not sure he noticed.  Nevertheless, I today I remember, as I frequently do, standing at the nurse's station where someone had taped up the program and being startled when I realized whose picture I was looking at.  I remember how sorry I was when I read about who he really was and realized he hadn't been a real person to me.

I really am sorry, Glen.  I'm sorry about everything - but mostly that I never got the chance to hear you play. 

Amen and Amen

Today, for the first time in about 30 years, I talked to a "Professional Christian" (i.e., pastors a church for a living) about my experience in an evangelical church and felt neither judged or proselytized. He seemed genuinely curious about how I interpreted things like faith healing and speaking in tongues then, and how I think about them now, and about the continued disgust I have with organized religion and the continued respect and wonder I have for the teachings of Jesus. It was a really wonderful conversation.

One thing that always spoke to me about Born Again Christianity was the idea that you did not need a pastor or priest or pope to tell you what to think about God. You read the Bible, and you thought about it, and you had a direct relationship. That said, it always seemed like the church never the less had some really hard line ideas about the right and wrong conclusions to reach, which is where the friction was for me.

I feel the message of Christ can be found in many places - in other religions, in other belief systems, in human interactions. It's all over the place, if you have eyes to see it. I feel like the New Testament helped me see it, and other people get to these Universal Truths through other religions or life practices.  I don't think you're going to Hell if you don't accept Christ as your savior. I think you're in for a terrible time (at least on Earth, if not beyond) if you don't get to those "Universal Truths" somehow - but I chafe against the idea that there is One Right Way.

The other thing about the church was that I took what I thought Christ was trying to say very seriously (because it seemed like you were supposed to - we're talking about going to Hell, right?)  and I tried very hard to meet the challenge of finding the way of peace, turning the other cheek and embracing people on the fringe of "polite society." And maybe this is adolescent of me, but no one ever seemed to notice that in the church I went to. I was trying to do what I thought were the most important things but it turned out there was a lot of other stuff that was more important to the church. The people who were held up as examples for the congregation were the rich, the beautiful, the powerful - but never, ever it seemed - the ones who were honestly engaged in the god damned struggle. (Pun intended).  The church preached to me that I was going to hell unless I was a Christian, but seemed to flaunt the opposite of the teachings I read about in the Bible on a regular basis.  Something was very wrong.

I will never forget the time in high school when I saw one of the teens at my church verbally and physically intimidate one of my favorite teachers in the hallway of my high school. I was shocked at the language she used towards her and the way she yelled and called the teacher a bitch, and lunged towards her. They were having a dispute about a failing grade, I gathered. Shortly after I turned the corner, she walked away, but she saw me and I saw her. That Sunday, the pastor was praying and speaking in tongues, and he said that Christ had spoken to him and told him to recognize the young people of God in the church, and he brought that very same teen girl (the daughter of one of the deacons) up to the front of the church and put a sash that said "Christian Teen" around her.  She smiled and the congregation praised God.

I think the hypocrisy of that moment was probably it, for me. I believe that Christ speaks to people, but probably not the ones who brag about it. And I think he says stuff to me all the time - not as a voice in my head, but just sort of stuff that's there for me to see and hear if I have the eyes to see it and the ears to hear it that day. Edgar Cayce, a famous American mystic, once said that an angel had revealed to him the meaning of life, which was to do whatever you needed to do to become a worthwhile companion to God. That has always made a ton of sense to me and I think I do try to do that by finding ways to appreciate what's in front of me (and fail a lot, but that seems to be how it works).

It wasn't until today that I was reminded, in talking to Wes, that that ethos I've adopted as an adult actually is very connected to what I started out to do when I was a teenager sitting in a room of people whom the Spirit Had Moved wondering if it was really the Holy Spirit who had stopped by or rather a form of the mass hysteria I'd read about in my abnormal psych book.

Have I actually been a rather religious person all along? Wes says I'll have to tell him, because I'm the only one who knows.

On the Value of Humanities in Health Care, or Surfing the Waves

Caveat - I extoll the virtues of an undergraduate degree in English Literature in this post to the point that it may seem I am saying that the only good doctors are former English Majors.  While in some ways I do think that, I'm willing to concede to a broader point - that an interest in and a study of the humanities is vital to good doctoring. 

This week I had the great pleasure of participating on a panel which spoke to a group of pre-health undergrads at Northwestern University about the value of an undergraduate education in the Humanities.  I was invited to sit on the panel by my medical school classmate, Paul Checchia.  Paul and I met during the first week of medical school in Lindegren Library when we were both trying to check out All The Books, because the first wave of being a humanities major (in our cases, English Majors) in medical school had hit us.  

That first wave is the obvious one: what was review for many of our classmates was new material for us.  I remember standing in the gross anatomy lab slowly realizing that there were many holes in the base of the skull through which nerves ran.  It made sense – how else would the brain extend into the rest of the body? – but these holes had names – crazy, hard to remember names.  I said something about this only to find that my lab partner had a master’s degree in Anatomy.  He already knew all the names.  He went to a bar that evening and watched the ball game.  Me?  I studied.  

That first wave was pretty bracing, but it wasn’t a surprise to me that I was going to have to study in medical school.  I think it was only in retrospect that I realized how much more I had to cram in than some of my classmates.  I also realize it was only like that for a few months.  We were all in the realm of knowing nothing very quickly, which brings me to the second wave, which was the wave that buoyed us up.

It is my sad (but somewhat gleeful) duty to inform you all that the realm of knowing nothing, which you reach at some point during the first year of medical school, is where you shall remain for the rest of your life.  There will be times you think you know something, but these times will be followed by stark illuminations of the exact dimensions of your delusion.    Knowing nothing makes medical students really crabby, because they have tried so hard for so long and they are used to achieving things and not used to having doubts about their abilities.  It is really awful to score 100% on your microbiology final and then walk into a hospital, see a patient who doesn’t speak English with a high fever who is crying uncontrollably with two babies by her side and not know the first thing about what might be wrong with them or what you might be able do about it.  It is disconcerting to be someone who researches oncogenes and then walk into a room where a patient is dying of cancer and wants to discuss physician aid in dying.  One begins to wonder what the point of all that studying was. 

And that is the wave that lifts up the humanities major.  It is not news to someone who has read Beckett that very important events in life may feel profoundly meaningless.  It is not a shock to someone who has played in an orchestra performing a Beethoven Symphony that something can be blindingly beautiful and devastatingly tragic at the same time.  Someone who has acted in Hamlet understands that the same person can be both very good and very bad.  A student of history is not confused when she discovers that her African American patients don’t trust the medical system.  Students of the humanities are primed to encounter the incredible spectrum that is the human condition.    They are comfortable with ambiguity and with all sorts of perspectives and points of view.  Through the humanities, they have experienced a myriad of worlds unseen.  When they finally see it in person as medical students, it’s not strange.  It’s familiar and comfortable.  It’s home.

Patients notice this comfort.  They start saying things.  “Thank you.  No one ever bothered to explain that to me before.”  “ You talk to me like I am a person.”  “Please remember to be like this when you are a doctor.  Remember to be real.”  “Thank you for not treating me like shit.”    Doctors notice students who seem to just naturally belong in the clinical setting.  “Good Clinical Acumen.”  “Fantastic rapport with patients.”   And my favorite: “This student just somehow ‘Gets It.’”

Humanities majors are not somehow “getting it.”  They have made an active decision to “get it” – they have made a commitment to “getting it.” They are determined to “get it” and they succeed.  I read hundreds of medical school application essays that talk about dreams of becoming a doctor and helping people.  Well, to help people, you have to understand them and appreciate them and see the beauty in them, even when they are complicated and contradictory and different from ourselves.  And the people who have deliberately taken on that challenge – who have been willing to look what it means to be human right in the eye – well, these are the poets and painters and dancers and philosophers and historians and – well, you see where I am going.  These are the people who have chosen to pursue a foundation in the humanities.  

Doctors with strong backgrounds in the humanities have the ability to surf the magnificent third wave, which I suppose I might broadly label “empathy.”  A contradiction I think about a lot is the fact that all my medical students write these beautiful application essays about wanting to help and heal (and I believe that in some way or another they are all being very truthful when they write these things) juxtaposed with the fact that doctors are perceived by the public as arrogant, uncaring and obtuse.  How does such a wonderful group of intelligent young men and women get transformed into a bunch of brutish beasts?  The simple answer is that although doctors care, they don’t always know how to show it.  But let’s drill down further.  Why don’t they know how to show it?  What gets in the way of them showing it?

If you think about what’s behind the closed crossed armed body language, the use of jargon instead of plain English, the stony mien, the judgmental attitude, it comes down to two things.  Fear and anxiety.  Not fear and anxiety about their knowledge of science and medicine – remember, these people have studied like mad and passed metric tonnes of tests – fear and anxiety of interacting with other people.  And you can either embrace that feeling and display curiosity and search for connection, or you can shut down.  A grounding in the humanities gives you the courage to embrace the other, because you know that as nervewracking as that can be, it’s where the good stuff happens. 

Medical knowledge without true connection with a patient or a community is worthless.  You can’t just take science and paste it onto people because it’s for their own good.  I mean – you can, but it won’t work.  Knowing the diagnosis means nothing at all if you can’t partner with your patient to find a treatment that fits them.  Deciding to put up posters about cancer screening in a community where children go to school hungry is the epitome of the type of “not getting it” that is so rampant in the medical system. The ability to get past the fear and anxiety that happens when you encounter a person who is quite different in looks, world view, religion or social status and truly partner with them to solve a problem takes an expansive and curious nature.  That’s the attitude that studying the humanities inculcates, and it’s also the path to the kind of empathy that leads to healthier patients as well as healthier doctors.  

That’s the thing about figuring out how to surf the empathy wave.  It’s exhilarating.  You can really help other people out and use your knowledge to improve people’s situations.  Doing what you actually said you were going to do when you were 19 is extremely validating.  You’re making good on a promise you made to yourself when you were young and that is a life triumph that many people never achieve.  I actually think that I get more out of trying to have an empathetic stance with patients than they do.  The patient gets help with their problem.  That’s great, that’s what they expected, and that’s my job.  But I have to say I think I have become a much better person through my interactions with patients, and that wouldn’t have happened if I’d pursued a career outside of health care.

In health care, you can’t walk away.  Even if you really want to.  It’s your job to help whoever shows up in the ER, the clinic, the hospital.  You have to find a way to provide a healing experience for anyone who needs it, and that means you’re forced to find connections and ways to partner with people you’d normally never encounter or more importantly, actually go out of your way to avoid.  The guy who I know beats his wife since she’s my patient, too.  The prisoner shackled to the bed.  The woman who I admit to the hospital every month for the same self-inflicted problem.  I cannot choose to avoid them.  I must find a way to understand them.  That means I have to get to know them.  And because I have felt my profession obligated me to do so, I have realized a great life lesson:  we are all the same.  There are no “those people” or “people like that.”  There is no one you can’t understand, because they are you.

Medicine forces you to confront the fact that we are all in it together.  Some people find this frightening, and build walls.  Others find it liberating and validating, and do amazing work as physicians and healers.  I am no longer surprised that when I encounter a really happy, successful doctor I can count on finding out that they have a strong background and interest in the humanities.  I have gone from thinking that being an English major was something distinctive about me to knowing that it is the real reason I’ve been able to evolve into being a good doctor. 

Interdisciplinary Ethics Day

Last Saturday, I had the pleasure of attending an interdisciplinary conference between first year law, medical, social work and physician assistant students.  They examined and discussed this case:

http://www.npr.org/sections/health-shots/2015/01/08/375659085/can-connecticut-force-a-teenage-girl-to-undergo-chemotherapy


As it is every year, the discussion was very interesting.  I was struck again about how quickly you can differentiate the law from the medical students - you can do it within a few seconds of hearing them speak.  These are students in the first few weeks of their professional studies - and they already wear distinctive mantles.  This conference (usually held on the first truly beautiful Saturday morning of fall - a tragic thing for all of us) always gives me a lot to think about.  I try not to say too much during the goings on, but here's what I sent off to the students today on the subject of consent, capacity, and doing the right thing. 



1.       Objective Criteria for Determining Maturity – several people made mention of using some objective criteria to decide whether a patient was mature enough to make medical decisions.  Something like that would be useful, but nothing like that exists.  It’s hard to define what we mean by “maturity.”  Any attempt to objectify it becomes arbitrary.  Part of the issue is that the ability to make a decision for one’s self depends not on age or maturity so much as what the decision at hand actually is.  I may not trust a 5 year old to make a decision about chemo, but I would let them decide what to eat for dessert, for instance.  But I wouldn’t let a baby decide what to eat, because they might literally eat poison if it was brightly colored.  And so on. 

Close to the maturity issue, I think is the issue of Informed Consent.  FYI, you can break this down into a few specific questions.  Does the patient have the ability to understand the information they need to make the decision?  (So they need to be able to listen/look/think and also to communicate back by some method their understanding).  Second, can they tell me the consequences of their action?  (for instance, “You (the doctor) are worried that I will die of infection or sepsis in less than a week if I do not take this antibiotic.”)  If the answers to these questions are yes, and you don’t think the patient is being coerced by outside forces (a controlling family member, etc) – then the patient has decisional capacity.  As you can see, if you are very young, you may not meet the first criteria, and if you are delusional you might not be able to fit the second.  However, it’s decision specific.  A patient may have the ability to make some decisions but not others. 

If a patient has decisional capacity, they get to make the decision, even if you think it’s a terrible decision.  That’s our right as autonomous humans.  BTW, law states that if decisional capacity is in question, two doctors need to weigh in and come to consensus on it.  It doesn’t state that it has to be two psychiatrists – although they are often asked to assess capacity/competence (“capacity” is the more PC term) because it comes up not infrequently in patients with significant mental illness.  Any licensed physician can assess decisional capacity. 



2.       Protecting Patients from their own Regrettable Decisions.  I saw a trend for the law and medical students to come down on different sides on this.  Apart from the question of letting patients make bad decisions is the issue of how hard we should try to convince them to decide otherwise.  This process is part of that mysterious “art of medicine” that you hear doctors talk about.  You’ll never read about how to do it or where the line is in doing it in a book.  You will deal with the impulse to do this with almost every patient.  So, here are my two cents. 

Your ideas on this will change as you practice.  When I was a student/resident/new practitioner I tried very, very hard to get people to make what I thought was the best decision.  I think just about everyone who saw me doing this would have given me an A for effort.  The problem was that even though my effort was massive, the results were anemic.  The truth is, as a doctor, you can lean and lean and lean on someone until you force them to say “ok, I’ll do it your way.”  And they may actually do it your way for a while.  But then they’ll get out from under your thumb at some point, and guess what happens then?  They do what they want.  AND they no longer will come back to see you – because you and they, they have correctly surmised, do not see eye to eye. 

People need time to figure things out for themselves.  Sometimes they have to see things for themselves.  Educating someone about their problem sometimes takes many visits over long periods of time. Sometimes they need time to talk to other people and let things sink in, etc. etc.  There are very few times in medicine where people must follow your advice immediately.  So when people choose a course that I think is a mistake, I let them know that they should keep checking in with me to see how they are doing and then, if I think they have decisional capacity, I let them do what they want.  I have learned a lot about medicine this way, because many times something I thought was a terrible decision turned out to be a good one for the patient in the end. 



3.      No fighting.  If I can tell you nothing else, it’s that if you are fighting and arguing with a patient, you are doing it wrong.  I think if you really can’t disengage and in good faith live with a decision your patient is making, you should recuse yourself from the care of that patient.  I would tell you though, that when patients realize you’re still on their side even though you don’t love what they are doing, they really appreciate it.  Knowing that you support them without judging the way they are running their life often opens the door to them listening to you and trusting you more.  It’s through this kindness that patients will sometimes change their minds and consider doing something much better for themselves!

On Being There

I have always loved hospitals.  I love the smell - alcohol and carpeting.  I love the way they look, too - the avocado with milk colored paint on the walls, the worn vinyl chairs, the scuffed walls of the elevators.  In fact, the very happy feeling I always felt when visiting a hospital was really the biggest reason I knew medicine was the career for me.  I didn't tell people that on my admissions interviews, because it sounds deranged.  But it was the truth, and I never examined the why of it until I was well into my life as a doctor.  One day I had an epiphany and realized that my love of hospitals is really connected to my fears of abandonment.  I like hospitals because 24/7, 365, you can go there for help.  And it will be open.  And the people there will do their best.  That is an amazing and comforting thing to me.

 Probably the best story I can relate that connects this abandonment stuff to being a doctor involves me as a little kid, when my family spent every summer in Japan.  We’d visit my mother’s family and drive around the country visiting the historic sites.  There are many festivals in the summer in Japan, so at night there was traditional folk dancing capped off by giant displays of fireworks, shot off from ships at sea.  I have a lot of fond memories of these trips, and at least one moment that changed my life. 

On our way to visit a Buddhist Temple, we stopped for a picnic lunch by the side of the road one day.  A car stopped near us and a pretty young woman got out of the car.  She was holding a small dog, and she put the dog down on the tarmac.  Before the dog knew what was happening, she got back into her car, slammed the door, and sped away.  The dog chased after the car, running as fast as he could.  The car kept going and the dog kept running down the road until I couldn’t see them anymore.

I’m sure as a little kid I cried and pouted about a lot of things but I don’t think I ever cried as much as I did when I saw that woman abandon her dog.  I will never forget how profoundly I felt that dog’s abandonment.  I felt it to the bottom of my nine year old soul, and I think about that dog and that woman to this day.  

My parents remember this incident as well, because neither one of them understood why I was so upset.  My parents both grew up on farms, so maybe they just weren’t very sentimental about animals.  My father grew up during the Great Depression and my mother during World War II era Japan, so maybe they were surprised to find their daughter was such a emotional lightweight.  My mother’s brother in law, who was chauffeuring us around in his car that day, eventually went to a dime store and bought me a doll to see if that would get me to stop crying.  And eventually, I guess I did. But after that day, I knew what it was like to feel very strongly about something.

I feel very strongly about being a doctor, of course.  I don’t know how you could do this job if you weren’t called to it.  Sometimes it’s hard to put my finger on just exactly what keeps me going during the hard times – being a doctor and trying to do my best at it simply gives a lot of meaning to my life.  Recently, though, I was looking through some old family pictures and I found one of my mother and I that was taken right after that roadside lunch in Japan.  My mother looks vaguely irritated with me.  My eyes are red and I’m clutching the doll.  When I looked at that picture it hit me right between the eyes – what I felt watching that woman leave her dog behind and what keeps me true to my profession are not just similarly strong feelings – they are the same feeling. 

I’m talking here about the need to work against cruelty and have empathy for the abandoned.  I cried when I was nine because I couldn’t do anything about that that woman did.  I cried imagining how that dog must have felt – frantic and desperate and alone – thinking that surely she had just forgotten him, surely the car was going to stop when she saw him galloping behind in her rear view mirror.  And instead of crying about the cruelty of life, now I’m a doctor and I help people deal with the cruelty of the diseases they do not deserve to suffer.  And instead of standing by the side of the road feeling abandoned, I protect my patients from abandonment.  Their health may leave them, and their families may leave them, and their wealth may leave them – they may even feel like their God has left them – but I’m not going to. 

I come to work every day, even when I don’t feel like it, because I want my patients to know that I am around.  I stay late if I have to for the same reason.  I may not be a medical genius every day – or even most days – but I’m there.  I answer my pages because I want people to know that I am available. I couldn’t live with myself if I thought I was cutting corners on being there for patients.  I think it’s a big part of why I love being a hospitalist – unlike the clinic, the hospital never closes. Every hour of every day – the patients can count on – if nothing else – the company of other people.  I like being part of that. 

When I was an intern, I showed up and hung around because I didn’t really have anything else to offer.  I listened to people and tried to explain to them what was going on with their medical problems.  Later I learned enough to do quite a bit (of both harm and good), but the moments I remember are not so much interesting diagnoses or remarkable recoveries but the times I spent supporting folks as they dealt with the cards life dealt them.  I’ve come to realize that as good as you might be at medical knowledge and patient care, that stuff is almost trivial.  It’s an intellectual challenge for me and something that might help the patient.  The heart of the matter for me is standing next to the patient, protecting them, educating them and sticking up for them when times are tough.  You have to do that before you can do anything else – and all it takes is the strong feeling that you are committed, above all else, to simply being there. 

For me, the tough thing about being there is that it’s a constant job.  You can’t be there sometimes.  You have to be there time in and time out.  You have to be there when you really don’t want to.  You have to be there when your family and friends really don’t want you to.   Sometimes the sacrifice is easy – you skip lunch, or stay a few minutes late.  Sometimes the sacrifice is really painful.  The thing about it is, though, that your worth and reputation as a doctor is not about what you are doing currently.  It’s about what you’ve been doing all along.  I’m about 20 years into it and I feel like I’m just beginning to see how worth it all of that time and sacrifice was.