Monday, August 9, 2010

Breaking News, Breaking Faith

The topic of this coming week's Grand Rounds is doctor/patient communication, which in some cases, many cases, is an oxymoron. This is one of my experiences with this subject:

In late summer 2005, I developed a condition called Transverse Myelitis. I ended up in the hospital, paralyzed and terrified. Once the diagnosis was made I was started on a course of IV steroids and within hours my symptoms started to abate. So I figured this was a one shot deal, a freak occurrence. I found out later that it was clear at that time that the TM was caused by Multiple Sclerosis. But no one told me.

Instead the condescending little snot of a neurologist that I happened to get in the hospital told me at 50 I was “too old” for Multiple Sclerosis. He did not tell me my spinal cord was alight with old MS lesions.

I switched neurologists. I liked the next one I went to, a seemingly considerate and pleasant young woman. But even she did not tell me.

Within six months a relapse landed me back in the hospital. My doctor stood at the bottom of my bed and told me there was a new lesion, this one on my brain.

Me: So does that mean I have It?
Her: Looks like It.

And she left. Neither one of us even used the words “Multiple Sclerosis”.

So that is how I was told I had an incurable, crippling disease. I was all alone, in a hospital bed. I don’t care how hard it is to give someone bad news, this was cruel and utterly unacceptable.

I’m now on my third neurologist. He is respectful, talks to me and answers my questions honestly. Sometimes a little too honestly. Because I still have trouble accepting it, I will occasionally ask “Are you really sure about the diagnosis?” And he will reply cheerfully in his cute Australian accent, “Oh, you DEFINITELY have MS!”. Sigh.

In my head, I have thought about what I would imagine the ideal scenario to be. I’m not greedy or excessively needy, so it wouldn’t involve hand holding or even inordinate gravity or sadness. My model is simple. I would have liked someone to tell me unequivocally but gently. I would have liked to have had the option of having a loved one with me. I would have liked someone to tell me they were sorry I had this, but that we would work together to manage this brutal illness. In other words, I would have liked to have been treated the way anyone would like to be treated: kindly, compassionately and sympathetically. That should not be too much to ask.

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Myrna R. said...

Marie, So sorry you received such bad news in such an awkward manner. Clearly, the medical profession has much to learn about the "bed side" but beyond manners, a little kindness would be so appreciated, and perhaps even contribute towards healing.

Marie said...

Hi Myrna! I am so happy for your wise comment.

You are absolutely right, doctors can be terrible communicators. It is not a subject that is valued in their education, so there is a huge gap there.

I amended my post to add I wrote this specifically for a theme of doctor/patient communication for this week's Grand Rounds, which is a collection of medical posts for the blogosphere.

It is something that truly needs to be worked on. Thank you again for your kind words. :)

debe said...

I am sorry your dx was a brutal experience.

Doctors and empathy are so far removed from each other.

Do Doctors not KNOW what a shock it is to be told this news?

And I laugh at your OVER 50 is too old... I think they wrote that in the doctors manual.. I had that SAME phrase from my first Neuro!

Pricilla said...

I don't think they think of the impact. It's just another diagnosis. Just another piece of information.

NOT a person with feelings who just had a shock.

Therein lies the disconnect.

Jen said...

I am so sorry you were told such a horrible thing in such a horrible and careless way. I remember when my doctor told me my daughter was going to die shortly after birth, he placed his hand on my leg (not in a perv way, it was the most logical place to put it at the time) he sat there with me and let me cry. And then he answered every question I had. I am sure he had other patients but he never let on that I wasn't the most important thing at that moment. He made a horrible situation much better than it could have been.

I am so glad you have a doctor you like now.

Marie said...

Debe: Isn't is funny how so many of us say the same thing "My FIRST neuro..." Because there are so few good ones out there we inevitably have to move on.

The first one I had was a twerpy little dweeb. Too old indeed!!

Pricilla: the fact that there is a disconnect for doctors between feelings and the hunk of meat that is the patient is utterly inexcusable. It is one of the biggest problems in health care today.

Jen: Oh Jen, I am sending hugs my sweet friend. I am so sorry for your horrible loss. Thank God you had a compassionate physician. That is so reassuring.

Patrick@Caregivingly Yours said...

Hey Marie, thanks for dropping by and thanks even more so for hammering home this topic. Enough cannot be said or written about how neurologists just do not 'get' that there is a person involved in a diagnosis.

Caregivingly Yours, Patrick

Marie said...

Patrick, thanks so much for stopping by and leaving a comment! Yeah, this was pretty brutal. Physicians are terrible at giving bad news, communication is an undervalued subject in medical school.