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.

Thursday, June 19, 2008

What do you do when a doctor says that you are not Ted Kennedy

You write him and his boss a letter.

I went to a highly regarded Pain Management specialist in my area. I filled out the questionnaire. Signed all the release forms, answered all the questions the nurses had. Then, I sat in the exam room waiting for him. He came in, annouced that I was seeing too many doctors (which I already knew) and that I was not Ted Kennedy and that all I needed was a hip replacement. I did not need to see specialists. My jaw dropped, and I said but what about all the other joints that are causing me such difficulty? He said, "You just need to bite the bullet and make a choice of what is hurting most. I lost my composure, I teared up and started crying, sobbing, etc..... That was a first. In all the years that I have struggled with my medical problems, I never had someone, who did not know me, be so cavalier, opinionated, and generally gruff. He did mention that he was being tough on me. It took me several minutes to regain composure.

In hindsight, I wish I stood up to him more than breaking down and sob. I did tell him I was affronted by his behaviour. Frankly he was demeaning, unprofessional, and egotistical. Am I not important enough to have good quality care to help preserve my mobility? He apparently does not know what it is like to have several joints inflammed and non cooperative at the same time.

What was he trying to impart to me...that this is not life threatening and that I was not a deserving patient of his time. Oh, and was he making a judgement of the number of doctors I am currently seeing? Did he even enquire as to why? No! I did explain that I was working on interviewing doctors in my area to be apart of the team that helps me manage my lifelong condition of serious joint problems. And, he was apart of that process.

In the end, he provided some reasonable suggestions for means to help me deal with chronic pain in the joints. So, I am grateful for that.

This week I called the clinic back and spoke to the head nurse letting her know how angry I was by his behaviour. She said she heard from him what he said and she told him that it was inappropriate. Apparently he agreed and said he was sorry. She said to me, that she told him that, too bad the patient won't hear it.

I have decided this is one situation I am not going to let go silently. His behaviour, along with his posture -- slouched in chair with legs splayed -- was unprofessional. I am resolved to write him a letter telling him what I think. I will cc his boss.

There is no reason why a doctor should treat anyone poorly, especially a Pain Management Doctor. Thank goodness I have a fair amount of home support and am not suicidal. He raised doubts in me of not deserving good care, or being proactive about my care. I really hopes he treats his terminally ill patients with more tenderness. Maybe they are more deserving in his eyes.

Has anyone else had such an experience, and if so, what did you do?

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