Healthcare: Who Owns The Information, Physician or Patient???

Today is day 17 of my fathers journey. I finally received the information on the pathology report that I had been awaiting. It is adenocarcinoma of the pancreas, with metastatic disease to the liver.
My father has Stage IV pancreatic cancer.
How did I finally obtain all of the information is a small glimpse into the world of what is broken inside of healthcare.
My parents did not get a call within 24 hours from the physician on the results of the biopsy and pathology findings. My mother called me and asked what to do next.
I had her call the gastroenterologist that performed the biopsy to see if they would give her any insight. Answering machine. I told her to call the primary care physician. Answering machine. That was Wednesday.
Thursday morning comes and at 10am I finally called my mother to ask if she had heard anything back from any of the physician offices. Still nothing. I had her call both offices back. Nurse #1 from my father’s primary care physician called my mother back first. Even though it is the same health system, on the same EMR, the primary care physician did not have access to the final signed pathology report. Nurse #1 called the gastroenterologist office to see if they would fax it to them. The response, no. Not until the physician has called and spoken to the family.
Nurse #2 calls my mother from the gastroenterologists office to tell her that she received a call from Nurse #1, and she will make sure that the physician calls her back with results. Nurse #2 also says that central scheduling will call to schedule PET.
Logic? You won’t “officially” tell my parents the results of the pathology report because the physician wants to do it, yet you are scheduling a PET which won’t be performed unless you have cancer. You just told them it is cancer.
Gastroenterologist calls my mother and informs them that my dad has cancer. The cancer is of the same origin in both the pancreas and liver.
My mother calls me and tells me the above information. I rebut with what kind of cancer, of what origin, what is the histology, etc. My mom just says that he didn’t say anymore than the above.
So Friday morning my mom calls Nurse #1 at PCP to see if they can now access the pathology report and either give her the details, or to call me and give me the details of the pathology report. No luck, still do not have access.
Nurse #1 calls Nurse #2, and is shot down. We own the results, if they family has more questions, they need to call us. Nurse #2 calls my mom to deliver the same message. My mom tells Nurse #2 to call me and gives her my number. My mom calls me. I wait an hour. No call.
I call Nurse #2 and ask if she can give me the results of the pathology report. Nurse #2 informs me that the physician will call me back to discuss the results.
I laugh. Nurse #2 asks what is so funny. I explain, all I want is for you to read the histology and conclusion from the pathology report. I do not need a physician to call me. If he wants to waste his time, that is fine. However, you have access to the report, you can read it, so why not just give me the information and move on?
Nurse #2 reluctantly says that this time she will read it, but she will not do this again. Okay, fine. Just read the report. (we have all the documentation saying that I have full access to my parents medical records)
This is how I find out my father has adenocarcinoma of the pancreas. That the two liver lesions are adeno as well with origin of the pancreas.
That he is Stage IV.
It is day 17 and we wasted how many phone calls, multiple discussions, nurses time, physician time, parents time, my time. A healthcare system that is supposed to lend timely support and information to the end user that worries more about protocol and who is going to own the information, the dialogue, the story.
My father saw the GI Surgeon on Day 8, and he said don’t worry. Pancreatic cancer is slow moving and we have time.
It is now day 17 and you finally communicated ineffectively that my father has cancer. You didn’t tell him he is Stage IV. You didn’t remind him that he has a primary pancreatic lesion and at least 2 lesions in his liver.
Instead of giving that information to my father and allowing him to be in the know, you spent more time running in circles worried about who is going to dictate the story. It’s not your story. It is not your information. You do not own the details. You do not have exclusive rights to the results. My father owns all of them.
I had to push the system to access the data and relay it to my father. I put the puzzle together and had to tell my father once again, “You have cancer.”
This time I had to add, “It is Stage IV.”
This evening my father wanted to begin to think about writing his next page in this story. Andy, I just want to have surgery and get this out of me. They said it is slow growing, but I lost another 5 lbs. If it is in my liver is it really slow growing? I just want them to cut it out and get going with treatment.
My fathers next page is one of hope, courage, and the future.
I told him that it will all come down to the PET tomorrow.
I don’t have the heart to tell him that the guidelines recommend chemo and NO surgery in Stage IV pancreatic cancer.
I guess I want his next page to be one of hope, courage, and the future as well. Perhaps I want both of our pages to be the same. Maybe that is why I only supplied one side of paper today.
I only hope the healthcare system won’t fail me for a third time on Monday and force me to once again deliver both sides of the paper. Please, I beg of you, deliver the paper, not the pencil.
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM
#PtExp #PX #cancer  #hcldr #hccosts #hcsm

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