“Silence and invisibility go hand and hand with powerlessness.” – Audre Lorde
“Patients are deer in the headlights. When a surprise comes up in treatment, we don’t like to burden them with information at the moment, because most are not able to take it in anyway. Instead, we just let them get dressed, tell them to go home, and that their oncologist will be in touch with them.”
We (my husband and I) were at the mediation, met by the mediator from patient relations, my oncologist, and another doctor from the imaging department. The good doctor was explaining to me that there was no explicit policy doctors followed when a patient was caught between in professional difference of opinion, and a treatment plan was suddenly stopped as a result.
Because, apparently, patients are incapable?
There was so much wrong with that statement, that I just did not know where to begin.
And then, he said this: “I’ve reviewed your complaint (meaning the email I’d sent off the to patient relations department, in full sarcasm mode, the week before, which was admittedly scathing and irate). Honestly I can’t find any problems with our policies. Our procedures work very very well for our patients. The problem, frankly, is you. We’ve never met a patient like you.”
This hole he was digging was getting pretty damned huge. Yet he continued:
“Our policy is this: patients come to the imaging department, and tests are conducted, or not, according to the professional judgement of the doctor. A report is generated, and then the oncologist and the surgeon meet to review the report, and make treatment decisions. The patient is then called and a meeting is set up with the oncologist, who will review the next step in treatment at that time.”
“But you? You were SO FAST. You were like” he snapped his fingers in the air three times, imitating a petulant teenage girl. “And then you demanded an MRI, right then and there. So none of your doctors could weigh in on what was the appropriate next step.”
I stared at the man, listing off in my mind all the sins I had committed: I wasn’t a deer in the headlights. I had been quick on my feet, and forced the process to move at was apparently lightning speed. In doing so, I’d prevented my surgeon and oncologist from determining whether an MRI was required to solve the dilemma. I’d been an active advocate for myself, and apparently in the history of the entire department, no one else had ever done so.
Frankly I highly doubted that. And the procedure he outlined worked to the advantage of the doctors, not the patients, and actively dissuaded meaningful input from the patient. I did not point out any of these facts. Instead, I asked the obvious question: “If I had just smiled, clambered off that table, said thank you and gone home to wait – what procedure would you have recommended to me, doctor?” I directed my question to my oncologist.
A pregnant pause. “Well,” she cleared her throat, “we would have suggested an MRI.”
I shot her an incredulous look. “How does the patient know that this will happen – that a report will be sent to the oncologist and then the oncologist will be back in touch?”
The question seemed to ruffle a few feathers. “Well, the doctor conducting the tests – or not- is supposed to tell you -”
“She didn’t,” I responded. “Instead she just -”
And then the mediator intervened with this, preventing me from speaking directly about the radiologist’s demeanour and decisions:
“The only two people who really know what happened in that ultrasound suite are you and the doctor.”
(Let’s be perfectly honest: the subtext to that statement is “We don’t believe you are telling the truth.”)
Mediation is governed by a very important principle: both parties in the dispute must be willing to come together, listen to each other’s perspective, and then work together towards an shared solution. If one party is not willing to listen to the other’s opinion, then the mediation should not occur.
This meeting was in no way a mediation. It was simple damage control, a way of assessing whether I would continue to raise hell or just quietly go home in silence. There was no interest or concern about improving the professional practice of doctors, or in preparing them to provide transparent, supportive communication to patients. No, the only concern appeared to be circling the wagons and protecting staff from any criticism.
In order to placate me, the doctors suggested posting a notice a notice in the ultrasound suite that the ultimate decision around what tests were conducted lay with the radiologist. But as for any meaningful improvements around policy, procedure or staff performance? Unnecessary.
The mediator wanted to wrap things up, but I stopped her, and spoke directly to my oncologist. “OK. I get it. I am the least significant person in the room, here, and my concerns are of little consequence to any one of you here.”
Strained silence from all of them. But I continued:
“If I had handled a client in my school the way you handled me in our last appointment? My head would have been on a platter.”
She still said nothing.
“I am going to spend every day of the rest of my life in pain. Every single day.”
The other doctor shifted in his chair, anxious to get out of the room. I looked at each one as I finished.
“I am more than the sum of scans, or blood tests. I am certainly not a “deer in the headlights,” either. I am a living, breathing human being. I am deserving of compassion and respect, neither of which you gave me last time we met.”
I got up and left without another word.
The mediator walked us out the door, smiling the entire time she explained that actually, she had no real authority here anyway, to do any follow up. But she really really enjoyed her job, she said with a grin, and she worked with very nice people. I would just have to trust that they had heard my concerns and that they would follow up appropriately.
With that, the meeting was done. This time, I did indeed go home in stunned silence.