Listen. Listen. Listen. Listen.

I am not doing this anymore.

It was Tuesday, I was in the occupational therapy clinic for just the third time, and I hated it already.  The first visit consisted of testing my weak, uncoordinated hands; picture me failing to pick up tiny metal pins and put them in tiny holes, and then bursting into tears.  The second visit was full of painful exercises that left my hands limp.  Today I was doing silly putty exercises under supervision and it was making my arm cramp.

I threw the putty down on the table.

"I don't think I should do any more of those.  They seem to be making me worse, and I have to work later today.  It's hard enough to make it through a shift even without that."

Linda*, my occupational therapist, paused, then agreed.  "Okay.  Maybe these exercises are too much for you."  She paused again.  "I think you should consider..."

I looked at her dully, full to the brim with frustration.  "What?"

She visibly gathered herself.  "I think you should consider whether you can continue to do your job.  It might not be feasible for you anymore."

I fired her after that.

I have developed a newfound sensitivity through my role as chronic patient, specifically to feeling like people are on my team.  I have a very simple way of describing this.

1. Do they understand what I want from my life?

2. Are they willing to help me achieve my goals?

Notice I'm not interested in them achieving their goals.  It's not that I'm ignorant of the fact that providers may come in with their own agendas when it comes to my disease.  I just don't care.  That's because when you're talking about issues of long-term function, there are very few black-and-white answers.  More often things are very contextual and individual; what works for me may not work for you, and vice versa.  This means someone has to know what I want in order to help me get it.

As I've thought about this more, I realised this actually applies pretty widely.  I think it feeds back into the concept of patient autonomy.  Patient autonomy is a fairly new thing in medicine, having come into being over the last 100 years or so.  Before that a doctor was expected to dictate what the patient did according to what the doctor thought was important.  This was called beneficence, or paternalism.  Modern medicine is quite different.  As a modern physician, it is NOT my job to decide what my patients should do.

Let me say that again.  As a physician, it is NOT MY JOB to decide what my patients should do.

What is my job?  Finding out what my patients are looking for and helping them get that in the best way possible.  There are several parts to this.  I need to figure out what my patient wants and what they know about their circumstances.  I need to give appropriate information and make them aware of their options.  And then I get to help them move forward with the option they choose.

Sometimes that's pretty straightforward.  A person with an infection would like the infection cured; a person having a heart attack would like the heart attack treated.  In those situations, the discussions are short and simple.  But most of the time it's a lot more complicated.  A person with chronic depression or anxiety comes to the ED looking for narcotics to numb their mental pain, ignoring the dangers of addiction.  A person with terminal cancer is not sure whether they want to live longer or live better, or doesn't understand that at this point in their life, those two paths have forked away from each other.  A person with diabetes wants mutually exclusive things, perhaps - to eat an unhealthy diet but also to avoid insulin therapy and complications of their disease.  There's a lot more discussion that has to take place in these scenarios.  In all cases, though, a healthcare provider needs to know what their patient wants and assess the patient's understanding of their own situation before providing recommendations.  The patient may choose something I disagree with.  That's okay.  It's not my job to tell them what to do.

Here is why this is also relevant to me as a patient.  That occupational therapist was not listening to me when I told her that I love my job and plan to stay there as long as possible, and she was not invested in helping me do that.  Instead she did her best to quantify the degree of my disability and then essentially told me to quit the job I trained for and fought to get.  It felt like Linda gave up on me; I didn't fit into her system and she decided I just couldn't achieve what I wanted.

You know what my second occupational therapist did?  She guided me through a detailed discussion of my goals and challenges and assessed my current function.  And then she told me to get a different kind of wrist brace that would let my hand rest better while using the computer.  She's helped me with many other things as well, but I'm not exaggerating when I say that that single suggestion, made carefully and with the right information in mind, has allowed me to stay in practice over the past year.  Over and above that, though, it means a lot that she listens to me and has worked with me where I am.  And I think it's taught me something about taking care of my own patients.  I think every patient wants to know that their doctor is on their team and cares about the things that are important to them.  For me it means asking more questions and making fewer assumptions.

Probably a good approach for me to take in the rest of my life, too.

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*Linda is not this therapist's real name.