Doctors as Advocates?

Yikes. It’s been awhile.

How are you?

Usually when I have gaps it means a few things: I don’t have too much I want to say and don’t want to post minutiae (I still want to be useful); I am acutely sick; or I have too many ideas and can’t get out of my own way.

In this case, a combination of a flooded house (hello, epic rain and no electricity!), an infection, and a lot of thoughts that needed time to marinate lest they come out as an unproductive rant equaled silence.

It’s been awhile since I’ve written about the doctor-patient relationship, an important subject in Life Disrupted.

For the most part, that’s because I’ve had such good experiences the past couple years with doctors who don’t just manage my diseases with me but work towards helping me meet my specific life goals. When things don’t work, we change them up. When we’re up against a wall, we find a new way to try to improve my quality of life. When the conversations are difficult and the risks overwhelming, we talk things through. A lot.

This is what has me stewing. A loved one underwent major surgery recently, the third major surgery in two years. It was a complicated, grueling surgery that necessitated significant nerve, disc, and hardware involvement in the spine. The doctor, whom we’ll call Dr. Brilliant Surgeon (or, Dr. BS, which is supremely fitting) is just that- a brilliant surgeon. But in my opinion, he’s not a very good doctor.

For example, it took three weeks to follow up with the results of a CT scan that showed tremendous problems, even though his office knew the patient was in incapacitating, wheel chair-inducing pain and needed some answers on what to do. The excuse? The office was undergoing new training and couldn’t respond to phone calls.

My response? When you have a patient who cannot walk and whose life has grounded to a halt until you report back, you find the time to make a phone call. You make the time, as it were.

For example, literally minutes before the patient was wheeled into the OR, the doctor announced that the surgery he was about to perform would be much more complicated and its success would be much more limited than the patient had been told would be the case for weeks. I understand he was doing what he felt he had to do while he was in there and I agree it needed to be done. However, three minutes is not a fair amount of time to process a huge change and a completely different set of expectations, especially when the test results that dictated the change had been available for a long time. Having a scared, anxious patient who now feels everything has changed and there is no control over the situation is not the optimal way to start a surgery, and since this was not an emergency, there was no need for things to unfold that way.

For example, after the almost six-hour surgery the patient spent several days in the hospital before going to a rehab. Not once did Dr. Brilliant Surgeon check in on the patient to see how she was doing physically (never mind emotionally.) Apparently, it is “not his policy” to follow up, and those quotes are direct.

Does that rub anyone else the wrong way? The way I see it, a patient is still a doctor’s patient before and after the OR.

Or perhaps my expectations for Dr. BS are out of whack?

I am not one to indiscriminately doctor-bash. That is not helpful for productive. But watching this person suffer, and knowing even a tiny portion of that suffering would have been less if this doctor had taken the time to communicate or care, leaves me feeling angry and frustrated.

Contrast these examples to a conversation I had with a new doctor of mine the other day. I was discussing my lung doctor with him, since I knew they would be communicating with each other at some point in the near future.

“He’s the best. He’s such an advocate for me,” I said, without even realizing how much I was summing up in those few words.

For as much as I’ve written about the need for communication, for good rapport, for someone willing to think outside the box, this quality is just as important in a doctor. An advocate is someone who invests his or her time in your particular battles and helps you fight them, who invests in your success and recognizes the importance of your goals and priorities.

An advocate is someone who is willing to make an extra phone call, or write an extra letter, or set aside time to consult if it means that ultimately, you will receive the care you need.

An advocate is someone who realizes there is a lot more to a successful outcome (surgical or otherwise) than simply what data reveals.

We all deserve advocates.