Living Well with a Bad Diagnosis - Lung Disease

Tuesday, April 25, 2017

Comprehensive, Coordinated Medical Care - Part 2

As my friend and I are hearing other's stories of their lack of comprehensive, coordinated medical care, we are realizing that it might be even more ingrained that we had even imagined. Do as little as possible. My friend related several examples to me of friends who had received this minimal care only to face huge medical complications. One ER doctor commented when a woman, who had been seen in repeated trips to her GP and urgent care, had been given completely inadequate medical care. The quote from him was, "I'll get in trouble for saying this, but we're supposed to do as little as possible."

There it is: as little as possible. 

At my rehab class, I asked the founder of the program her opinion of our thesis of a "little as possible" problem in the medical world. She soundly agreed and also said she believed it was being currently taught in medical schools. It did have to do with the insurance companies and doctors being rewarded when they keep costs down. It did have to do with the university hospitals demanding that the doctors treat so many patients per day. It did have to do with burn out and exhaustion and no time to contemplate a difficult case.  

My friend also made the point that if Dr. K. was a younger doctor, she might also feel the pressure to follow these same "new" philosophies. 

What can you do if you are not receiving comprehensive, coordinated medical care? 

By the time you have realized that you are not receiving the proper care, you have probably become sicker and sicker. Time is of the essence. 

My initial suggested solution was to keep searching for a doctor like my Dr. K., who provided such excellent care. My friend commented that doctors perceive people who doctor-hop searching for the right doctor as erratic when they really are just desperate. 

The scenario looks like this: While going from doctor to doctor trying to find comprehensive coordinated medical care, time is running out, the doctors perceive you as difficult so you will continue searching for the proper care until it is too late.

So what is the solution? Sadly, there isn't one. The best you can do is try to work with your doctor by asking that he/she:
  • is responsive to your emails or phone calls
  • explains your Pulmonary Function Tests or any other tests so that you fully understand what they mean
  • works with your other doctors to coordinated your care
  • has a plan for your treatment 
  • prescribes Pulmonary Rehab
Sounds so simple, yet... 

I have been on both sides of this problem and it was very frustrating being ignored by my very first doctor at the university hospital. It wasn't until Dr. K. took over my case and ran with it that I realized how poorly I had been treated. The list above? None were addressed by the first doctor. Zero.

It is so vital to have an interested physician who provides comprehensive, coordinated care for our difficult and long-term lung diseases. Actually, it's more than vital. It is life or death.

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