Doctor coordination and communication problems.

Sorry no humor today, just some soapbox complaining. ....

Perhaps you have read some of my older posts where I wrote about how I never had regular or frequent visits with a doctor. Eating an apple a day (the fruit, not the computer)  has kept me away from doctors up until this tumor episode. Now I am inundated with doctor visits and must communicate with them several times a month. My lack of experience communicating with doctors has made these visits difficult and almost contentious.

It would seem to me that a doctor would want to know everything that is going on and and put this new information into context for me, and make adjustments to my care as they see fit. What I have experienced is more of a functional relationship where patient describes symptom X, doctor prescribes medication for X. They act almost like a prescription vending machine. My issue is that I do not want a prescription for every little symptom I have. I would rather deal with little issues on my own rather than take 20 pills every day. I have explained this to each of my doctors, but they do not seem to comprehend this concept. So when a doctor asks me 'how am I feeling', I have to be careful to only mention the conditions I would like addressed, and not bring up issues I can deal with without a prescription. I would like to tell them everything that is going on to give them context about my general health, but when I object to prescriptions for conditions I am willing to live with they get offended. I guess that this basic disconnect is what has kept me away from doctors my whole life. Now I have a dire need to go see doctors, which is a source of anxiety. I am very grateful that my sister Jean (a RN) comes with to my appointments to act as an interpreter between me and the doctors, and my sister Carol ( Pharmacist) assists in describing what prescriptions do what.

The other drag I would like to point out in this posting is the lack of doctor coordination. One of the reasons we chose the University hospital is that all the experts are in one place. But guess what...they don't agree with each other, and I am left (with help from my family) with making decisions on who to listen to. Yesterday one doctor told me 'you should not take drug XYZ', and another doctor (from the same hospital) gave me a prescription for drug XYZ, and told me I should take it if I feel I need to. We brought up out disdain with this lack of coordination, the doctor said ' I am not going to tell another doctor what to do'. I have heard that a couple of times now, it must be code of conduct they teach in medical school. One of the doctors even agreed to be the coordinator, but the other doctors will not suggest things to the coordinating doctor because of this code of conduct. They tell patients to do two mutually exclusive things, and have the patient decide what is best.

I have people in the medical field in my family to help me through this, and I am relatively cognizant, and these issues are still affecting me. I feel so sorry for all the other patients, some mentally impaired, that get pushed through the system without the support I have. There should be someone analogous to a 'court-appointed console' lawyer for these patients, a 'patient advocate health professional' that watches out for the patients best interest and makes complicated decisions. I call the Mr. B later today and see if he can squeeze this into Obamacare.

Holly and I were talking about switching hospitals after this initial round or treatments is complete due to these and some other issues. We did mention this to the nurse yesterday and she said that is common practice for 'common' tumors/cancer. The same or similar treatment for things like breast and prostate cancer can be attained at a variety community hospitals. She continued that my diagnosis is considered rare and life threatening, and that I should stick with a university hospital. This decision is probably a year away, so I will try not to worry about it now.