Revolutionizing the Doctor-Patient Relationship: Reclaiming Patient Individuality
Brain tumor and cancer patients deserve to be treated as individuals. It is time to revolutionize the patient-healthcare provider relationships! It is time to change the way we think about agency in the healthcare setting. It is time to speak out and say “I am not a factor, I am not a variable!”
In October 2005, four months after being diagnosed with an “inoperable” brain tumor in my brainstem, I was sitting in the examination room of the radiation oncology department of Montefiore Hospital. The nurse asked me the usual questions you get asked when you have a brain tumor, and then went on with a very detailed explanation of what I will be going through:
“First, we will be preparing a mask based on your head and face and the exact location of the tumor. It will then take a week or so to prepare the computer program that will allow the radiation oncologists to give the correct dosage to the exact location every time you come in. You will come in five days a week for seven weeks. Each time we will place the mask we programmed on your face and you will need to stay still . . .”
This went on for several more minutes while they took me around to see the radiation machine and sat me down to create the mask. I could not stop thinking of Dr. K’s promise, that he would be able to help me. He will use his magic radiation machine to stop this growth inside my brain, even shrink it. Despite hearing over and over again from countless experts that radiation does not work on pilocytic astrocytoma tumors, and despite the research, I was hopeful. What other reason would Dr. K have to promise me that radiation would work, what other reason would he hug my crying mother last Friday and comfort her?
“. . . oh, and one last thing,” said the nurse. “We need to tattoo your head and face with three dots.”
“What, what, what??” my cartoonish imagination immediately replied in my head. I saw myself spitting out water in surprise to this nurse’s matter-of-fact statement that I will have to have permanent tattoos done on my head. Was she not as optimistic as I was that I will have a normal life after this? Did she know something that I did not know?
“You have nothing to worry about, it does not hurt much, and two of the dots will be close to your hair line. Only one will be in the middle of your far head, but it is very small.”
Why did they need to “violate” me in order to make sure that the mask and radiation dosage that is going to “save my life” is in the exact same place each time?
“Is there another way?” I asked. But I knew the answer, why would there be another way, in an office, where patients only walk in scared for their life; no one asks these questions.
Patients, in general, are afraid to ask too many questions. And cancer patients going into treatments that are supposed to save their lives are afraid to mess up their treatment in any way. Last year, I was giving advice to a friend who was diagnosed with breast cancer, and she asked me: “Akiva. Tell me, am I allowed to ask questions?” She was terrified as it was from the cancer, and asking the doctor questions seemed like a scary act. “Of course,” I said, “you should ALWAYS ask all the questions you have, and make sure you are comfortable with the course of treatment they offer you.”
Healthcare providers are not used to having patients “rock the boat” with questions and requests that might require them to change their system. Years of management consulting firms creating operations management processes and flow charts for hospitals and practices, have created a well oiled machine in most hospitals; Best practices, and Six Sigma Black belts have taken over healthcare and perfected the system. The patient is part of the flow chart, and must fit into the box in order to be treated.
These systems have improved the healthcare experience and made the delivery of care more efficient while lowering cost. However, these practices have also, at times, turned the patient into a factor, part of an equation in a flow chart that needs to play out.
Patients are not a factor. We are not a variable that needs to be placed in a box in order for the care to be provided. We are individuals, that need to be treated individually, and we need to be entirely comfortable with the treatment plan in order for it to work.
“I don’t really want a tattoo, is there any other way?” I asked.
“Not really. Don’t worry, it is very small, it will barely show,” the nurse responded.
“Are you sure? Can you ask the doctor? He never mentioned anything about a tattoo.”
“We do this to everyone, there is no other way,” the nurse said.
I paused for a second, thinking of all the times in my youth that I pulled the religious card to get out of things in high school and the Army: morning runs, kitchen duty, etc . . .“ Was I really going to pull it here? “Really Akiva, are you going to pull the religion card for radiation therapy?” I heard my father’s voice in my head.
“Um, I am Jewish” I said. “We are not allowed to get any tattoos. If we do we cannot be buried in a Jewish Cemetery” I announced (a claim that is not entirely true).
“I will check with the doctor,” the nurse said, and went out of the room.
No one wants to mess with religion in this country.
“Ok, no tattoo, we will use a permanent marker for you,” she said, amazed herself how easy an alternative solution could be.
“Thank you,” I replied and lay down on the examination table, closed my eyes, and praised the gods of Sharpie® for saving me.