Patient Advocacy

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

Cancer is a full-time job

I spent 4 hours on cancer today, and I’m not even being treated yet.

This morning I awoke to an email from Dr. Domchek’s “nurse navigator” who asked that I call her today to “work through the process” of getting an appointment with Dr. Domchek. After dropping my son off at camp, I returned home and called her immediately. Some of what is below was written as it happened, basically as part of my note keeping (which also happens as a series of sticky notes on my desktop).

I’ve gone back and lightly edited where it didn’t make any sense.

My phone call begins with Maria, who is amazingly nice, has the sweetest most gentle voice, and explains everything step by step. And it is a lot of steps. I have to first get registered into the Penn health system – she says when we’re done on the phone, she will transfer me to someone who will get me registered. Once I’m fully registered, Maria will do a breast intake. The new patient office will let me know what medical records they need and will tell me if they need a medical release form. Maria also says she will send me a medical release form, so I should complete it and send it back (I must print it and hand sign it, then scan it and fax it or email it back). We talk a bit about my insurance; I have a notoriously inflexible, greedy insurance plan that I already know is unlikely to pay for this consultation or anything outside of its own hospital network. Maria says that lots of insurance plans used to have a built-in system for second opinions –  a way for those to be covered even if they are out-of-network – but more and more health systems are making that harder. Mine, of course, is one of them. She says I can ask to speak to Jenna, the financial consultant, who will know if this would be a covered expense and what it would cost if not. She says it wouldn’t hurt for me to contact my insurance company and find out myself, too.

I start making a to-do list:

• Complete records disclosure form and scan/email to Maria (must be signed by hand)
• Find out if insurance will cover any of this visit

Maria transfers me to patient intake to begin a medical record at Penn. I miss the guy’s name on the phone, but boy is he nice, too! (Philly gets a bad rap). He asks for the usual information – birthday, address, SSN, military status, etc, etc, we quibble over the spelling of my last name (it happens more often than one would think). I simultaneously scour my health insurance documentation for anything that might indicate that even a consultation with Dr. Domcheck will be covered. I find this, but it’s talking about treatment, not a physician visit:

Cancer chemotherapy and cancer hormone treatments and services, which have been approved by the United States Food and Drug Administration for use in the treatment of cancer, whether performed in a physician’s office, in an outpatient department of a hospital, in a hospital as a hospital inpatient, or in any other medically appropriate treatment setting, are covered, but they may require a Prior Authorization.

I’m also not convinced that “medically appropriate setting” means “anywhere you want to go.”

Once he has all of his information, I am transferred to the New Patient Coordinator’s office (I also missed her name). She says I will need to get insurance authorization to be seen and gives me Dr. Domchek’s MPI# and Tax ID# (I write these down even though I dont know what they mean or why I need them).  She reviews my medical history, typing loudly as I respond; she tells me that Dr. Domchek is heavily involved in research and would like all of my medical records (I have sent them, I explain). She asks me lots of questions about my cancer, doctors I’ve seen, scans I’ve had, everything since 2012 – she wants dates for everything, details. Luckily I am a detail-keeper, and I can tell her everything she needs to know by pulling up iCal. She then explained how I go about getting discs of all of my imaging sent to them, as well as pathology slides (“I just get a box of slides” I ask. “and put them in the mail?” I ask. “Do they need to be frozen or something?” I ask. The answer is “no” if you’re wondering).  As Maria instructed, I ask her if I can speak to Jenna next (hoping that she is not actually Jenna). She says she will transfer me. Jenna, fortunately, is on another call – I have now been on the phone for almost two hours. I use the opportunity to take a break for some greek yogurt and blueberries. And I add to my to-do list:

• Call insurance for prior authorization
• Figure out how to get films and slides from UPMC
• Mail films and slides to Basser

Jenna calls back within about thirty minutes. She says I am “definitely out of network” – but that Dr. Domchek is willing to see me as a one-time self pay ($255.65); so, she will review all of my records and consult, but if I want the Basser Center’s pathology or radiology experts to look at my slides or films, that would be an additional $200 per “surgical event” – so $200 to look at the biopsy from last week, $200 to look at the biopsy from 2013, $200 each to look at any ultrasound, mammogram, or MRI.  I really only want them to look at the pathology, but I’m not sure if the Basser pathologists would really see anything different than the pathologists at my own hospital. Jenna tells me I do not need to have slides and films sent if I’m not going to pay to have those read by their people. She also says not to bother calling my insurance company – this is definitely not going to be covered. I like this Jenna – she seriously shortened my to-do list, which looks like this when all is said and done:

• Complete records disclosure form and scan/email to Maria (must be signed by hand)
• If I want Basser to look at pathology, get it from UPMC and mail it to Basser

It’s almost 1pm when I am writing this blog post (the parts I didn’t write during the phone calls), almost 3 hours after I began (disclosure form has been sent). It was a seamless process, one I am not at all convinced would have occurred at my own hospital system. I started with Maria, and she simply transferred me to one person, who transferred me to the next; each person was really nice, knowledgeable, and helpful. Having all of my records downloaded and ready to go also made it easier.

I should also acknowledge my privilege here: I could not have done any of this if I were not an academic on summer break with one child who is at camp. Who else has the time to do all of this crap? Go to the hospital, pick up imaging discs and slides, then take them to be shipped? If I had any sort of 9-5 job, or any job with limited vacation/sick time, how screwed would I be? I’ve already spent 4 hours of time at the hospital because of this lump, and now three hours on the phone this morning – I have three more appointments coming up, along with a possible trip to Philadelphia. And who knows about treatment – that could be an hour each day for all I know, for how many weeks? How do working-class people do this?

In a few months from now, my two friends/colleagues and I have a book coming out for which I wrote the afterword. In it, I write:

I am highly aware of the literacy strategies and rhetorical knowledge I have at my disposal…. I recognize, however, that my position as a woman who’s benefited from advanced training in writing and rhetoric is relatively uncommon. While many other women, of course, are highly educated and/or simply have had life experiences that have led them to deep knowledge of the roles language and persuasion play in healthcare situations, having a background in RHM might make me especially capable of self-advocacy in healthcare.

I have been thinking about this a lot of the past couple of weeks – how I’ve pretty easily been able to handle this situation. Like I explained yesterday – email from Dr. Domchek requesting some records. I went into my online health portal, sorted my records by type (first mammograms, then pathology, then MRI, etc), printed each as a PDF, saved each file by date and type of procedure, created a Dropbox folder, then emailed a shared link to her team). All of that required a set of skills that not every woman diagnosed with breast cancer (or, for that matter, every person diagnosed with any kind of cancer) has at their disposal. And it’s not only about skills I have, but the affordances of my job, of my race and class, of everything that has made this, so far, relatively easy for me. I spent three hours this morning sitting on the deck of a house we own (mortgage), drinking coffee, talking to these people on my recently paid-off iPhone as I looked up information on my laptop, while our golden retriever dozed softly at my feet.

I am a commercial for a cancer center; there is a banner over my head that says, “Your journey starts here…” and it’s an easy, breezy one covered in puppy kisses.

Or not.

update: I decide to have my recent pathology slides sent to Basser. If I’m going to do this to ensure I am getting the most accurate treatment, then I should get a second set of eyes on those slides as well. And, I find out from Maria, that the medical disclosure form means I don’t have to go get them and ship them myself – they can get them for me! Like I said, easy breezy puppy kisses…..

Toe nail

I’m being discharged from the hospital. The iv is out – I’m just waiting to sign papers. I’m starving. I’ve been here for five hours. And I just found a toe nail in the bed. It’s not mine. (And this is the hospital where I will be having surgery!)

Expenses for today: $5 parking, $30 ER copay.

Stop Calling Me

I swear, my phone has rung no less than five times today – each time it’s the UPMC automated line reminding me of various appointments I have in the next few days. I keep a calendar people – stop calling me.

HBOC Clinic in Review

I went to the HBOC clinic at the Hillman Cancer Center on November 2.  At this point, I don’t remember most of it.  All I know is, I waited almost 2 hours to be seen, and it was only when I told the receptionist that I was leaving that she remembered to tell the doctor I was there!  This process was already not off to a great start.  I met with two doctors: Kristin Zorn and Rachel Jankowitz.  Neither of them were particularly warm nor fuzzy.   Zorn recommended a complete hysterectomy instead of an oophorectomy (a word that I cannot spell correctly on the first or second try).  She feels that the less endometrial cells that remain, the better.  The effects are all the same and it’s not a much more significant surgery, so why not?  If anyone reading this knows differently, please do let me know!  I was pretty convinced – I will probably have her do the surgery since she’s done it a zillion times and is the most highly recommended gynecological oncologist in the city.  I also met with a genetic counselor: Darcy Thull.  I left with a list of things to do:

• Email scan of BRCA results to Darcy Thull
• Call Rhode Island Hospital genetic counseling to have records sent to Darcy
• Call to schedule consults with Kandace McGuire and Gretchen Ahrendt, breast surgeons recommended by Jankowitz
• Call to schedule mammogram for December
• Call to schedule MRI for May (be sure to call the clinic a month before the appt to get pre-authorization.

When I left with this list, my main thought was, “Thank god I am an organized, literate person.”  I went there alone, I took my own notes, and I got most of the things on this list done within a few days.  But what happens to people who aren’t as savvy about these things?  It made me think there should be an HBOC concierge or something – one person who keeps track of this whole thing throughout, helps you make appointments, find the right people, get to the right places.  I find it overwhelming – I can only imagine what it must be like for people who aren’t as educated or don’t have the same sort of support I do.