Wednesday, September 29, 2010

The Telephone Game

This next room is in the back hall, where all the good stuff happens: Team exam rooms and Whiteboard rooms. No one escorts you to any room at all. One has just learned that when your name is called, you go find your room. Fifty years from now I could still probably walk straight to whatever room number is called. During your "Transplant Stay", you are in so many rooms a day that it is now just an automatic response. Your feet just start walking.

The Clinic Team process is both interesting and infuriating. In summary, it is much like playing that old game "telephone". Before you have even arrived, your file has already been sent by your oncologist, which presumably includes everything medical that has happened to you since your last Hutch Visit. This assumption is ironic to me because it assumes that every doctor you see has supplied your oncologist with all your information, which is kind of funny. Second, the Clinic has sent your oncologist this huge long list of tests and procedures they want completed before your visit but with enough time to be completed dictated or read and formally packaged to arrive with enough time to be reviewed. It also can include other doctors' reports that they want to see. For the patient, not knowing some of these test results is a little bit like having that information held hostage. The patient also receives an exhausting questionnaire about their sysmptons.

So with all this information having been provided in advance, the telephone rings. First the patient sees the Team Nurse. She does her thing then leaves to go report her findings to the Team Primary Provider, who is typically a PA. A little bit later the Team PA comes in and goes over the same information the Team Nurse did, your questionnaire, and does a comprehensive exam. But questions are rapid-fire, which is difficult for me. As many of you know, I now need some extra time to answer many questions, have difficulty remembering things, especially dates and timelines, and often the words I need escape me. So we have a pretty good time together...... The irony is that all the answers and dates and timelines and information is usually in their records MULTIPLE TIMES. So this exercise is rather embarrassing.

At this point in the day, I have now seen the GI PA, the GI doc, the Team Nurse, and the Team Primary Provider, all of whom do what they need to do, get whatever info they need, and pass it along to the next team player. The telephone game just keeps going. But no one leaves a message with me about what is going on.

Now that ALL this information has been summarized from one party to the next, going up the food chain, the seas part and the Team Attending MD enters. She brings with her a visiting doctor and asks me me if I mind that she be present. Hey, I am all game of seeing how many people we can shove into this little exam room. We total four of them, one of me. The psychology of this is interesting, as the four of them stand and peer down at me, naked except for that typical flimsy exam gown.

My Attending is the last person to answer the telephone and to my amazement, asks many of the same questions already asked and then starts making pronouncements of what is what, do this and do that, based on the the repeated information that has made it to her. This next part is much like the process at the dentist: the dentist does his exam while his assistant is checking the file as he reads off the numbers and condition of your teeth. Do you know what I mean? She is the head of the bunch who is going to summarize your medical conditions and not really talk to you about what these things mean and how it will affect your life. This is the Big Show time and it is clearly their show!

It happens fast and furious and includes alot of medical terms I don't know. She mumbles alot and the Team Nurse and Primary Provider are shuffling through my file looking for this or that. I am asked what symptoms are the hardest to deal with and we discuss this a little. A little but not much. I have also brought almost two pages of questions, some quick and easy, some a little more in-depth, that Craig and I have put together. But it is their show and the visit unfairly centers on what they want bto know, not what my life has become. (Hmmmm, reserach data?) But the time is edging towards 4:00, and the Transplant Clinic becomes a ghost town at 4:00. I have the distinct feeling that despite why I think I am there and what it took to get there, we are just about done. My next visit date is now being discussed as well as how we can get authorization for some tests that they want done the next day at the Hutch. I am clearly running out of time with the transplant gurus. I know it and they know it.

The rest of the room 21 story is not pleasant, for a number of reasons. First and foremost, it is almost directly stated that everyone else on my Health Care Team don't really know what they are doing or at least don't do it as well as SCCA. Really??!! I came all the way over here for you to insult me and the people who actually take care of me? If you disagree or want a different treatment regimen, it seems the most professional way to achieve that is to contact my hometown providers and discuss it with them. I was livid that SCCA would insult or demean me or any of the doctors here that have worked hard to help me, see me regularly, and have really been there for me. And while I recognize that that there have been many times that doctors here have consulted with those at SCCA, it is exactly my doctors here that I see all the time, prescribe the meds I need, answer my calls at night and on the weekend, and who genuinely seem to want to help me and make me as better as better may be. I think we would all recognize that the people at the Hutch are the supreme experts in transplant science and care, but they are not the ones who take care of you once you leave Seattle. They need to support the hometown doctors by offering their support and expertise and not dismiss them because they are not transplant experts.

I was pissed. And many of you know, once I am really pissed off enough, I shut down. Done. Time to go. And after all, is it after 4:00.


Amy said...

My experience on a consult at SCCA was pretty similar. They were rather pompous and sadly dismissive of me as a person.

Thank you for sharing your story. It is helpful and inspiring.

Amy (Ann's friend) in Seattle

Linda said...

My experience at the UC Davis Cancer Center with my late husband's Esophageal Cancer was the same. We had a pompus "big wig" cardiac thoracic surgeon, who I suspect saved Don's life one December but F*%#@$% up the final December. He fell asleep during a clinic appointment prior to Don's final hospital admission (which resulted in 2 months in ICU). I took him to the ethics committee but because he was "top Doc" it did no good. That's the short version of the story, but pompous and dismissive fit the description there as well.

Anonymous said...

I always loved the telephone game! I said one about a dancing apprentice and it came out as a special dentist! It was a lot of fun.