Informed consent not uninformed compliance

I'll warn you this is going to be an earful...

Today I had my mapping/planning CT. I woke up in a good mood and ready to get this done. It felt like it would be a step in the right direction and the start of my official treatment. I want to start treatment so I can be closer to being done.

There are a few catches to this, like weaning Ella, or knowing I'm going to feel crummy, but other than that I just want to get going. I want to be a cancer survivor instead of living with cancer and always wondering...well, I'm sure the wondering will never really go away, but well, whatever.

So we (Geoff came with) got to the cancer center and checked in. The people that work at the check in desk are UW's least happy employees. Always. I suppose they see a lot and they basically herd cattle so I would probably be unhappy too. On the other hand, they do have a basket of cute stickers on their desk, so that might counter-balance things for me.

Anyway, they checked me in. I told them I needed labs drawn and lab was going to put in my IV for the day. They told me no. I didn't need labs today. Those were for next Monday when I get my port placed. I repeated that the orders for my labs were put in last week and I was supposed to either get them last Thursday or today. I also mentioned that this was confirmed with two phone calls to me yesterday. Finally, they decided that I was right or they didn't care. I'm guessing the latter. This was communicated with a flat "you can go sit down and wait for labs and IV now" as they handed over a patient pager.

Ironically, the wait for lab was really quick today and they were once again awesome at IV placement.


After I had my IV placed it was off to my new 5 day a week home, Radiation Oncology.

Once I checked in I was taken back to have my IV flushed (a little ridiculous since my IV was less than 5 minutes old, but hey...), then sent back out to the waiting room. Then I was called back to make my abdominal mold for my radiation treatments.

I've been curious how the mold was going to work, so in a weird way I was looking forward to this appointment. First, they took my picture for my medical record. Not sure why this was suddenly necessary....Then, the therapist mixed up a bunch of chemicals and put them in what was essentially a garbage bag containing a thick sheet of Styrofoam. As he was getting everything ready, another therapist came in with her intern and the three of them helped with making my belly board.

I won't lie, this was my favorite part of everything so far. The chemical reaction of whatever they mixed up and put in the bag made everything warm. My job was to lie belly down on this warm bag, align myself according to their instructions, and then sit still until the chemicals conformed to me (about 5 minutes). It was like laying down on a soft heated bed.

Then when it was done I got up and had a seat in a chair in the room. They got out a hacksaw and cut a chunk out of my belly board. They taped the edges and put my name on it. Voila! it was done. Wondering what the hell I'm talking about? Well, this belly board is something I'm going to lie on during my radiation treatments. The part that they cut out corresponds to my upper abdomen/chest area and apparently this helps push my internal organs (intestines, stomach, etc.) that we don't want radiated up and out of the way from the radiation treatments.

The next step was to take me and my belly board to the CT scan. They wanted to set a few things up in the CT scan room so they had me sit in a IV placement room and stare at the walls for about 5-10 minutes. I was really missing my iPad/phone/husband at this time, but then they gave me a glass of water. No sarcasm intended, I was ecstatic.

I wasn't supposed to have food or water for 4 hours before the CT. They always say this in case there is a reaction to the contrast. I had a few sips of water before getting to the hospital, but otherwise I complied. Unfortunately though, I had forgotten to set my alarm around this, so the last time I had anything to eat was last night and it was now nearly noon. I'm still sick with this miserable cold and all I want is fluids so a glass of water was a gift!

Of course they were giving me water because they wanted my bladder full so it would be more obvious on their images and also help displace my abdominal organs up. A win-win for all of us.

A short time later they came and got me for my CT. I was still looking forward to this. Now I not only wanted to get this done, I also knew I liked my belly board so I knew I'd be comfortable. They had told me ahead of time the CT was only going to take a few minutes so I figured it was going to be a breeze. More like Hurricane Katrina!

So first they tell me I had to pull my pants down mid-thigh and lay face down. They reassured me they would put a towel over my tush, but I was pretty ticked that this part of the CT was never previously mentioned. Then as I was laying face down on my belly board with a towel covering me, another person informed me they were going to insert a probe into my cha cha. WHAT THE HELL?!?!?! Seriously, this was never mentioned before!

Of course I just muttered "ok" and complied. What was I supposed to say at this point?

I don't really know everything that happened after that because I was miserable. If everything that has happened so far isn't degrading enough, then they have me laying face down with my pants pulled down to mid-thigh and someone who I can't even see puts a probe in me?

I quietly sobbed through the whole CT. I felt so violated.

The CT itself was very short and would have been fine otherwise. Laying face down on my belly board and going in and out of the CT scanner would have been like taking a nap and belly surfing the smoothest wave. If it wasn't for the other stuff it would have been fine.

When they were done with my scan one of the techs came to take my IV out. When she did, she realized I had been crying. She gave me a tissue and asked if me it was all "hitting me at different times." I told her no, that wasn't it. I told her that I was really mad that I wasn't informed about what was going to happen during this CT prior to the CT. She replied that she understood and that this has been happening a lot lately. As she was telling me this, the intern said something about "you are going to feel a few little pokes...those are your tattoos..." WTF?!?!?! Yup, that's right. As if the pants down and probe weren't enough. They gave me 3 tattoos.

Probably no one would ever notice them. There are the size of a needle prick...but I know they are there. I had no say in them and I didn't know about them until they were being put in. Again, violating.

It's not that I would have refused them. I understand their purpose. They are guidelines that they will use for lining me up for my radiation. It's just that as a care provider I am taught to educate my patients about what is going to happen to them before it happens to them. Make them feel like it is really their decision. Make sure they know they really have a choice. Don't force them into anything. We as nurse midwives don't believe in what we called "informed compliance." We believe in "informed consent." What happened to me today was what I will call "uninformed compliance."

I was still crying when I got back to the waiting room. Geoff looked at me and asked if I was ok and I just muttered "I want to go. I want to go right now." We did stop and get food, but we took it with us because I wanted out of that place. I was so miserable.

When I got home, the kiddos were doing well, but tired. My mom was just about to leave and Ella started melting down. Ella wanted to nurse and because I had contrast with my CT I can't nurse her for 12 hours. There was absolutely no consoling Ella. In the end, mom stayed with E and I put Ella in the stroller and walked with her around the neighborhood until she went to sleep. It broke my heart. It broke my mom's heart (she has heard about all this before but never witnessed it). When she left I was ready to be alone so I could just cry.

Just before my mom really left, a friend was kind enough to drop off some fresh, yummy zucchini bread. She had seen on Facebook that I wasn't allowed to eat this morning and thought that might make it better. Little did she know how much I needed that zucchini bread today...

Fast forward a few hours...The radiation oncology PA (physician's assistant) called to set up my chemo for next Tuesday. I've never met her or talked to her before, but the poor woman got an earful about today's appointment. She was an amazing listener and understood why I was so upset. She reassured me that she understood that this was something that needed to be fixed for patients.

An hour or so later, my radiation oncologist called. She heard from the PA what happened and that I was upset. She listened and apologized too. I think she genuinely understood some of why I was upset, but then she suggested that maybe I see one of the cancer center's health psychologists because I'm having a hard time with all of this. This pissed me off too.

I stayed calm and reassured her that I will remain open to the idea, but then I explained that I don't think it is unrealistic to expect that I want to know what is going to happen to me before it happens. My oncology NP has been great about this. She has understood from day 1 that I like to understand what is going to happen and have an opportunity to look things up before they happen. She understands that I went from being a normal 35 year old woman who gets to be in control of her body to a cancer patient who is just along for the crappy ride my body has to take to get through all of this...

Anyway, this post has gone on long enough...I've decided that today was crappy and I'm having ice cream for dinner. Who needs a health psychologist when there is ice cream? :)