Saturday, March 20, 2010

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.


Rachel said...

absolutely. there is a huge difference between the radiologist who placed a call immediately to my GYN when he found continued inflammation in my pelvis on a CT scan (and said GYN who immediately called me to make sure I was feeling OK)... and the docs who previously wrote off my pelvic pain as hypochondria.

doctors who care and are advocates. absolutely.

Diana Lee said...

Your expectations are completely reasonable. To be honest I don't know how anyone with a conscience could sleep at night knowing they hadn't yet followed up with that patient.

Dominique said...

You hit the proverbial nail on the head. That is what has been wrong in the VA system (and why I no longer use it) is that there is no advocate for us. Especially if you have CFIDS.

I am so glad you have a great set of doctors. I am trying out a new one that I think may end up being a good match. Only thing is it will all come out of my pocket.

But I am willing to do that if I can find a great doctor who will work with me, not against me.

Thanks for this post. I hope your friend is recovering. I will keep her in my thoughts and prayers. I know that type of surgery can be very challenging!

Anonymous said...

What a harrowing story. It's so sad. We should all boycott doctors like this, regardless of their so called 'brilliance.'

Emily said...

Argh! I think that your expectations are completely reasonable. It frustrates me to see doctors treat their patients this way...and it's usually those of us patients who don't know better (yet) and think we have to deal with whatever the Doc is putting out there.

So sorry you had to watch this painful episode unfold from the sidelines.

FridaWrites said...

This is just not right--I've had a major spine surgery and a number of more minor procedures and definitely wasn't treated that way by my brilliant spine surgeon or his associate. I was informed about expected outcomes in advance, no change in story. The surgeon dropped by that night and his associate the next morning; when an emergency occurred the following day, they saw me as soon as I could get there even though it wasn't a day they see patients. And this seems to be typical for other people I've known who've had spine surgeries (one's not had good outcomes, but fusions didn't work for her). I am glad your family member has your support and experience.

My rheumatologist is an advocate like your lung doctor is--I'm not sure I can afford his care on new insurance, though I'm also not sure that I can afford to do without him.

Ann Gourieux said...

I had the same problem with my spine surgeon. Excellant surgeon;, however, no post surgical visit. Just a brief, 2 minute visit from his assistant and dismissed from hospital.

At least he was better than another surgeon. He came into my room after surgery and admitted he had nicked a nerve. My legs were on fire and I was screaming in pain. Then, I went home with an infection in my incision.

Dear Thyroid said...

Hi Laurie.
It makes me sick,literally,that there are still doctors out there who don´t seem to care about their patients.
I´ve seen some of those Dr. BS types myself, and somehow it seems like the ones who actually listen and try to find the right treatment TOGETHER with their patient are really rare nowadays.
When my mother broke her leg and needed surgery it was almost the same story as yours.
First it was a routine procedure,than it was a "little more complicated" than expected.
After surgery no doctor came by to look after her. I had to force her Dr.BS to finally take a look at her,just to find out that something went wrong during the operation.
It is so hard not to loose faith in doctors and trust them with your treatment.I just wish there was a way for patients to spread the word about those bad doctors and make them face consequences when they don´t treat them right.

Jen said...

Hi, this surgeon sounds very weird and borderline negligent. I'm a nurse and have never seen a doctor who doesn't do post-surgical followup. Three weeks for a CT scan is appalling. Telling a patient about different surgical outcome and different procedure just several minutes before surgery.. again, smacks of negligence. If that happened to me as a patient I'd cancel the surgery and get a second opinion. The surgeon sounds not very competent at patient management (ie followup, managing a case safely, giving test results etc). No, you do not have unreasonable expectations. None of this sounds good.

Wendy S. Harpham, MD said...

I am physician/survivor who has seen chronic illness from both sides of the stethoscope. And, yes, physicians are obligated to advocate for their patients.

When you sense something is not right about your loved one's care, find out if the hospital has a professional patient advocate on-staff, such as a patient ombudsman. You can also talk to the nurses, who might be able to make a recommendation. You can ask about a pain service consult.

It is almost always better to work things out with the surgeon who operated, but sometimes it is best to switch surgeons (although it may be difficult to find a surgeon who is willing to take over a difficult case mid-stream).

A 9/09 nytimes well blog column was devoted to patient advocates: has good information, too.

My blog on Healthy Survivorship often discusses healing physician-patient bonds.

Medicine is an art based on science. You have every right to expect both expertise and compassion.

With hope, Wendy

Laurie said...

Thanks for the feedback! While it is discouraging to hear many similar experiences, at the same time it is good to hear that many of you have also been to find advocates for yourselves.

Michelle said...

I've been unhappy with my PCP, pretty much from the beginning. She's never understood my disease and how it affects the rest of my health and I'm left second guessing her medical advise--which is never good. I know how important having that advocate is--we can't do it alone! I'm having trouble finding a good dr who has a working knowledge of what I have or is willing to go the exta distance to help me. I've been trying to find a new dr recently and was wondering if you know of some good websites that would help me find good information/ratings on dr's in my area. Thanks!

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