Wednesday, June 25, 2008

What should we expect from a doctor

For the last 5 months I have been interviewing doctors. Imagine that. See post below hunting for rabbits, or is it doctors and this post local ortho elimination process

We think of interviewing employees, nannies, schools that our children go to etc., but we don't interview doctors, who can have a big impact on your life, in more ways than the obvious. This becomes especially apparent with the chronically ill patient, because they usually have a much higher interaction with the medical community, usually have complex cases, and have a higher level of investment in the outcomes. Those people who go to the doctor a few times a year, or less, probably don't think too hard about the quality of their doctor's. (Or, I am just guessing)

After the first couple orthopaedic appointments I had early this year in CA I was so disgusted with the talk down to you approach that I decided to do what I have been needing to do and that is create a supportive medical team to help me navigate my increasingly complex medical situation. As I have eluded to in other posts this has been a difficult and often traumatic experience. Everyday brings new insight as well as more confusion when I interact with medical people. And, lately I have been doihng this alot. I have on average 3+ appointments per week. Some weeks I have had two a day, Monday through Friday. This includes maintainence appointments, such as allergy shots, chiropractic, physical therapy, and mental therapy. Then I have followup appointments with specialists: orthopaedic, cardiology, urology. Currently, I have a high rate of appointments because I have been trying to have a good team of people I can trust and rely on. The anxiety of not having that is very stressful. There are days I have been hopeful and there are horrible days, like when a doctor thought I was trying to be self important by seeing many doctors. I am beginning to believe that I am getting closer to creating a team of people who are thoughtful, compassionate, and will be a great support to my overall care. They may not have all the answers, but, they certainly seem willing to help me through the mess I am in. I have had to create a personal patient schema to keep track of the specialists that I need to deal with on a regular basis and how they overlap with other doctors.

I wonder if I am crazy sometimes because sometimes it seems I am pushing the system to do something that it is not designed to do. I keep wondering how do other people who have a long term condition that is less straightforward deal with this. There are days I want to crawl into a fetal position out of despair because I feel unsupported. Most of the local doctor's are new and I feel like I have to convince them of how difficult life is for me. Sometimes, I want to throw up my hands in despair and just stop trying, and crawl into a hole. Then there are those few occasions, when I want to throw my arms around a doctor and say thank you for hearing me, caring for me. Those are the doctor's that really surprise me! I get so prepared for what I think is a difficult conversation related to paperwork, or questioning of their proposed approach to dealing with my multiple conditions, and they simply say ok, no problem, let's try that. Sometimes, they even say, maybe they should talk to someone else. And, that is often times the most refreshing statement I ever hear. I got inspired to write this post after reading the following article Get Yourself a Thinking Doctor

Am I crazy to expect that a doctor should listen to you, not pretend to know everything, and ask questions to better understand what you are going through?

I have become increasingly amazed how doctor's actually think. On the one hand they say to me, boy you have lots of problems with your joints, or, boy you are a mess, and will keep us busy. On the other hand they think I am working full time after I have told them how devastated my life has become, and that I rely on my partner to take care of managing cooking, cleaning, grocery shopping. I just wonder who is listening. After those appointments I wonder what is wrong with me? I wonder, what did I do wrong? I generally come home dejected and worried about my future. These are the people who hold my future in their hands. OY!! Thankfully, those appointments get balanced out by those doctor appointments that hold a lot of compassion, understanding (or at least not dismissal), and feeling of care. And, those are the people that I move towards, embrace, and feel buoyed by in the midst of my own personal storm. That is when I feel calm and cared for.

So, what do other's experience? Am I the only one out there that is puzzled and surprised by the medical institution? Sometimes I really do feel alone in this mad mad world.


Anonymous said...

Anonymous here. Sorry to be so long to get back but I am so overwhelmed by my own experience I scarcely know where to begin. Suppose you had never started this blog, but were then asked to sort of sum it up in a somewhat (unofficial) time and space limited way. I'm sure you can see my point.

But today I am compelled to ask you to take heart. You are not alone. I can relate to almost everything you write but I have one small advantage. My formal education is as a biologist (the clinical kind, not the trees and bugs kind) and some of that education and work experience was at a well recognized medical school and several teaching hospitals. So even though I am treated much as you are, I am probably in a better position to defend myself (when I am able to maintain composure) when on the receiving end of outlandish behavior.

Like you, I struggled to convey the extent to which my life had 'vaporized' as a result of illness and that should affect a doctor's sense of acceptable risk and urgency in some way. I had to point out that the definition of harm changed -as in 'first, do know harm' depending on the situation. Early on doing nothing is doing no harm. If your doctor is being prudent beyond reason -which is the climate of medicine today due to liability concerns -4 years later after you have lost almost everything you know -doing nothing probably is the harm itself. Sometimes you have to make a leap of faith and that includes doctors and their treatment plans. Once you have your team of doctors -and I would get every personal recommendation possible on that -I benefitted from my education and work history in that regard-but it is helpful to be recommended by someone the doctor knows -it adds social pressure in a reasonable way I think - but,like I said, once you have a team spend the time to reiterate anecdotes from your life circumstance and they will eventually hear you. It is a matter of repetition -like how many times do you have to see a television commercial before a) you know the commercial, b) you can say what product they are selling and sometimes c) what logic are they using to try to sell the product if it is not obvious in the answers to (a) and (b).

Some of it too is perception. Remembering that your doctors see the whole spectrum of illness. So while your problems are debilitating to you -they are comparing you inadvertently to their pt who is very visibly limited and at the far end of the spectrum which, depending on the specialty, is death's door. It is not nearly as personal as you think although that is paradoxically both comforting and disconcerting to me personally. I mean, how could it not be personal? Doctors are trained-and the profession self selects to some degree -people who can maintain at least the appearance of, if not the actuality of it not being personal.

I once asked one of my doctors if doctors had no intuitive sense of what was happening in their bodies, or did they just think they were the only ones who had it? -like it was something they picked up in medical school.

In my experience everyone has it-even the least educated among us has a sense of what is wrong and whether it is serious. You would think doctors (as biologists) would understand this -even if only as an evolutionary survival mechanism. But the point of that question was to challenge their seemingly unchallenged notion that they could or should readily dismiss my input. Most of your doctors will come around. Sometimes a letter full of details which cannot be worked into an office visit, but which will be put in your chart is helpful in this regard. Just be mindful that what you write will be a permanent part of your medical records and write accordingly. Some will read it and some won't but those who do will begin to understand and in a weird way this will bring the others around via an invisible force, i.e., if respectable physicians in your community take you seriously evidenced by their continuing to treat you -others will do so also even if they do not share the understanding that motivates the other physicians. There is a very subtle peer pressure in the medical community even between doctors who may never speak. They speak to each other through your medical records which have more nuance -and sometimes not -than you probably know.

Doctors will arrive at wildly goofball opinions -like the feeling self-important are we? -just like anybody else. [Your best doctors -just like friends and family -will resist the urge to jump to the easiest conclusion and judge you without verifying their suspicions.] Such is our culture, not to mention human nature. I highly recommend a spiritual practice of some kind -whatever your stripe -to deal with this as it will continue to happen. If you could prevent this behavior, you could bottle it and sell it and have Donald Trump working as your realtor.

Anyway, I hope this is somewhat helpful. I have been there and met many others along the way with similar experience -you are not alone. I did say to my doctor once that my experience led me to wonder how anyone without my background was receiving even adequate (comprehensive) medical care. Off the record, the answer is well, of course, they aren't.

It is too much to go into here but the system of physician compensation and reimbursement has, like never before in history, so severely limited the amount of time a physician can spend with any one patient and still keep the lights on. Trust me. It seems like physicians are well compensated until you examine their cost of doing business which is crazy like no other profession. Limited time, of course, impacts the quality of the doctor-patient relationship. One day our system will understand this and change physician compensation. Maybe they should just be paid by the hour like lawyers. I don't know, but it's a big problem.

On a total other point -have they surely ruled out the possibility of interstitial cystitis as opposed to UTI? You can get more info from the website of the interstitial cystitis association -I think that is what its called. Just a thought. Good luck.

Alex said...

Thanks for the carefully considered and written feedback. To your point on wondering about level of care. That is something that frequently crosses my mind. What about those patient's that are passive receivers. I have project management skills up the wazoo so I am naturally proactive and get informed. But, I am not a doctor. So, it takes a lot of processing and angst in that. Well, I am glad there are other's out there. And, I am glad someone can relate to my situation. Best. Alex

Anonymous said...

Hi, Alex. I am still new at the whole blog thing so very sorry to be longwinded.

I too worry about the passive receivers -as does many a good doctor, actually.

One thing to check out is a new website called founded by a former Amazon (I think) executive turned frustrated patient. I just found it a couple of days ago from reading Fred Wilson's blog; but it looks like it just started in June and it is patients helping patients-in a nutshell. Looks like it will be good.

Alex said...

Thanks. I was just going to write a blog entry about Tusera and other patient support groups.

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