I am a bad patient. I offer this disclaimer up front without shame or remorse. Any medical professional who has managed to keep me as a patient longer than 6 months can really and truly advertise that they give "excellent care," because if you were to look up the definition of a difficult patient, there would be a picture of me in the entry.
Among my faults:
I am horribly needle-phobic. I begin to hyperventilate and get weak in the knees if someone even mentions the word "needle" in my presence. Which is why Carmen at my primary care office gets two thumbs-up from me. She can successfully start my draw on the first time and she is so quick that the stinging is minimal. She also lets me say "ouch" as much as I want and doesn't take it personally.
I hate medical testing. The only medical test that I will cheerfully and willingly participate in is a diagnostic ultrasound or diagnostic x-rays. I've had 3 ultrasounds and multiple x-rays. They are really cool because not only do you get to see body parts from the inside, they also do not usually involve needles or nasty tasting medications.
I cry when I am under stress. And if I can't cry because I'm not in a socially acceptable place to cry, then I get openly tense. And my husband has said that I am not a friendly person to be around when I am that tense. I am like a cat that has been cornered that is ready to fight back. Not good.
I read everything and I question EVERYTHING. I regularly negotiate with my doctors and dentists over my care. I have also been known to find a Stedmens medical dictionary and look up long complicated words so that I can find out what they mean. And I keep reading until I really understand it.
On the other hand - I am a also a very good patient. I am compliant when it comes to following instructions, taking my medication, reporting back when I'm supposed to for follow-up visits, and generally acting like a model patient - except when I am a bad patient - which lead to the following situation at the patient check-in:
I will admit up front that I was loaded for bear. Large bear. Having dealt with financial clearance before and fought with them over everything from them putting my insurance ID in wrong, to misspelling my name on my paperwork and causing havoc when my insurance ID didn't match the person that they did bring up (who knew there were two of me in the system), I also had done the "informed consent" cha cha with them the last time that I had checked in for a lab test, and I had sent a formal letter of complaint to patient compliance.
So again, they handed me the paperwork. I noted that they had changed the form. It was now two pages and had a nice place to initial different things that I was agreeing to - except the informed consent section. It didn't have any type of a line or acknowledgment. It also didn't say anything about being given the option to talk to a physician before signing the form.
And that was when the compliant patient butted heads with the bad patient.
Good patient: Just sign the damn document. You know what an ultrasound is and why they're doing it.
Bad patient (aided and abetted by Lawyer Brain): Nuh-uh. I've talked with a few people and the phrase "needle biopsy" has been mentioned. Do you want to get stuck without warning?
Good patient: But Dr. X's office didn't say anything about a needle biopsy.
Bad patient: You want to find out that one was ordered when they walk in with the needle and the specimen jar? Or do you want to question this up front?
Good patient: But you know they won't know what was ordered down here! They'll tell you that you need to ask upstairs.
Bad patient: Then they have no business asking me to sign an informed consent here. If they have no clue what I'm having done, and they can't even provide something from the department explaining it, then is it really truly informed consent? I'm sensing some undue influence, and maybe some subtle coercion here.
Good patient: Don't go creating trouble
Bad patient: I'm not creating it - they created it with this stupid check-in policy. Want to open the pool on how pale the general counsel would get if he knew what was going on?
At which point Good Patient capitulated: Ok, make it clear that they have no business giving the informed consent, and then sign the damn thing!
So I read through it twice, just to make sure that there wasn't anything else, and then I looked at the financial services rep. "Is this all?"
"Yes, just sign there."
"There isn't anything from the radiology office - no explanation of services, nothing for me to sign?"
"Not unless they have something that you sign there."
At that point I took a deep breath and pulled out my patient smile. The one I reserve for when my kids are climbing the walls and I want to scream at them to get down but I know that will only make things worse. I took two deep breaths and said in my calmest voice, "Are you an RN?"
She looked at me, puzzled. "No."
I took another deep breath and kept the smile on my face. "Are you an ultrasound tech, or a physician?"
"No."
"Then how are you qualified to give me information regarding my exam today?"
She looked at me quizzically. "Its an informed consent. It's just something you need to sign."
"Which is for a procedure that you don't have any knowledge of and so again I'm asking you what authority you have to provide information for an informed consent because you are not a nurse, a physician, or an ultrasound tech."
"I can get you a supervisor."
I took another breath. "That will be fine. "
It took a few minutes and then the supervisor showed up. "Its an informed consent for the facility."
"What about the one for the physician and the exam I'm going to have?'
"I don't know - this is just for the facility."
At that point my smile disappeared. It clearly said in the document that it was the consent to medical treatment, and nothing that it was for the facility. So I looked at her. "Are you a physician?"
"No"
"Are you a nurse or an ultrasound tech?"
"No"
"Can you tell me about the risks and benefits for this procedure?"
At that point the supervisor began to flounder. "Well, I don't know all the potential problems. I don't know what our procedures are if you were to have a heart attack. I don't know all the possibilities. It's not meant to cover that. It's just for the facility."
I put my smile back on. "Fine. Then I'm going to initial here and I'm going to time and date it." I initialed it with the time and date. I then held out the pen to the supervisor. "Would you please initial, time, and date here next to mine."
She got a concerned look. "What am I initializing?"
I took a deep breath and kept a firm grip on my smile. "You are initializing that I signed my informed consent and that you were the one that provided the information."
The supervisor took the pen and initialed it, then offered the pen back to me. I remained strong. "Please give the date and time as well, that way we know it was done at the same time."
She did. I took back the pen and thanked her.
I'm now sitting with this piece of paper (a week later) wondering what, if anything, I should do with it.
Nothing happened. There is nothing that would give me standing in a complaint. I didn't suffer any "ill effects" from the exam. There was no outright "harm" done. I even verbally consented to the procedure once I got upstairs, talked with the tech, and climbed onto the bed. I'm not even sure what would happen if I openly challenged it.
But I also recall the Criminal Procedure lecture that discussed Miranda with the hypothetical question "Since everyone knows that they have the right to a lawyer, do we still need to read people their rights before we begin a custodial interrogation?"
Interesting question. One that could also be posed in this situation. Having given consent to 4 u/s exams prior to this, I had a good understanding of my rights and the potential risks involved. But does that matter? I think of the sign that is prominently posted outside each of the exam rooms in our Simulation Lab that is used to teach students that is titled "Patient Rights." One of those rights is "an explanation of the exam that I will be undergoing along with the possible risks and the benefits." In other words consent and what constitutes informed consent.
Incidentally, this is not limited to medical procedures, it extends to any personal service or activity where there is a risk of personal injury or harm -- which is why when you go to have a massage, have your teeth whitened, or go skydiving, you are required to initial and sign a document that looks like the abridged version of War and Peace. (I personally believe there should be a statement at the bottom that says "the lawyers made me give this to you.....")
I also am trying to figure out what hat I am wearing in this situation. I'm advocating for a patient so in that way I'm a staff member. However, I'm also complaining about my quality of care, in which case I'm a patient. Additionally, I'm pointing out a particular problem in the chain of care - which puts me in a very interesting position, because it isn't exactly my job, in the same way that advocating for better patient care is.
I also don't want to see our head attorney for the institution go white-green at the gills. I've seen that happen once before (in fact, I was the one who caused him to go white-green) and it wasn't pretty. There's a part of me that thinks that there might be another shade of pale that I haven't seen yet, and I'm not really sure I want to see that either.....but I know if I were in charge of minimizing risk to the institution, I would want to know that this was happening.
But deep down I have this fear that maybe this is all that is needed for the institution to be legally covered in terms of providing appropriate informed consent. Which would then move this from a legal question to an ethical question. One that is far more nebulous and difficult to pin down.
So once again I ask the question "What defines consent...."
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