As I think I’ve mentioned, in my day job, I do research in the Rhetoric of Health and Medicine. For me, this means that I look at how discourse (writing in particular) is used in healthcare settings to support patients, or how that can be done better. There are lots of people in RHM who do research like mine, and way too many of them who find that patients are not treated well, sometimes by doctors, and sometimes by healthcare systems that are set up not to allow doctors to do their job as best as they might want to.
If there is one thing I’ve learned through being in this research community for the past 10+ years, it is that we must advocate for ourselves when we are done wrong in a healthcare setting, because no one is going to do it for us, and we owe it to ourselves to make sure the next patient in the room is not treated the same way. I am so beyond tired of being treated badly, and for me it’s not usually by a doctor, but something that is systemic of the healthcare system in my city. I live in Pittsburgh, and University of Pittsburgh Medical Center (UPMC) rules the roost around here (and is where my insurance is taken, so I couldn’t boycott it if I wanted to). UPMC is huge, it wins award after award year after year for excellence, and I do believe that most of the doctors really are excellent. But for a variety of reasons I won’t list, the system doesn’t always allow them to shine.
Anyway, back to self-advocacy: I wrote this email today (below). I’d been thinking on this issue for over a week, and I finally realized, if I don’t say anything, this won’t change!! No one should be treated badly when in a vulnerable medical situation, not me or anyone else. So no matter how small or stupid or minor you think the issue is, say something. I especially encourage you to use sentences that start with “It made me feel like….” and repeat those a lot! And if you need help with this task, ask me – I will happily help you write an email to the person in charge to try and get something done (and yes, I have done this for people before – it is one of my skillsets, and I am proud of it!).
Dear Dr. *** and Dr. ***-
As the Co-Directors at the Breast Cancer Center, I wanted to make you aware of a situation that recently occurred as I tried to see Dr. ***. I want to say upfront that I do not believe Dr. *** or your staff are responsible for any of this – I suspect this is a UPMC-wide issue. Still, even if it is systemic and not specific to your office, perhaps there is something you can do about it.
I was supposed to have an appt with Dr. *** about a month ago. A week before, I received a call from the office telling me it would need to be rescheduled unless I wanted to see a PA. I asked to reschedule. A week later, a few hours before the rescheduled appointment, I received a call asking me if I would prefer to see a PA instead of Dr. ***. I was told that things would “move more smoothly and quickly” if I chose this option; at this point I caved and said I would see the PA, although later I ended up rescheduling the appt because of a snow storm. The appt is in two weeks from now – in MyUPMC it says *** PA/NP, so I am assuming that means I am seeing Dr. ***’s PA and not her, or perhaps both of them.
There are two issues here. First, I am fine with seeing a PA for certain concerns or seeing the PA in addition to the Dr at the cancer center, but I am not ok with seeing a PA (and no Dr) for a chronic life/death genetic (I am BRCA2+) condition like breast cancer. I understand the training that PAs go through, and I respect it. But it is not the same as an oncologist who has had many more years of cancer-specific training. Second, if your clinic works more “smoothly and quickly” if patients opt to see PAs and not doctors, then something is very wrong.
This whole thing might seem minor to you, but I want you to understand how it made me feel. It made me feel like my case, in the eyes of your office, is not that important, not important enough to need to see a medical doctor. It made me feel like you think I’m “done” because I’m close to the 5yr end-of-treatment mark, and therefore no longer need/deserve the treatment of an oncologist – that my case isn’t a priority. I realize I am not in active treatment, and so I might not be a priority above someone who is. But I deserve the time I scheduled with the doctor just like anyone else. I discovered my second case of breast cancer on my own 5.5 years after my first diagnosis, after I was “released” from surveillance visits, so I’m not fully optimistic that I’m out of the woods right now. This knowledge of the particulars of my case should ensure that the Dr would want to see me.
I’m asking that you please look into this issue so that other patients don’t feel devalued the way I do.
-Bryna
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