As promised, Vignette Two – Compass Oncology – another heartbreaker revealing exactly where the patient fits into the medical industrial complex.
The great singer Sinead O’Connor launches into her 1990 heartbreaker Nothing Compares 2U counting down, “It’s been seven hours and fifteen days”. I always loved that opening. Since leaving Compass Oncology July 30th at 1:30 p.m. that fragment has frequented my mind. There was no romance involved with my heartbreak. It was a purely dispassionate reminder that the medical industrial complex only wants to prolong my life one way – their way.
But you judge as I recount.
As soon as I choose the Bruckner Protocol, my team not only took on the task of getting me into this NYC clinic but also took on scrolling for prospective local providers to partner with the protocol. While we awaited OHSU’s determination, I asked around for oncologists who were either creative or in small private settings. We needed low red tape. Compass Oncology met neither of those criteria but several people pointed to the same doc as “prioritizing what the patient wanted” and no other names were offered up. So we gave him a try despite reservations – we hoped by being very, very clear we could avoid wasting resources.
Friends worked with the new patient administrator to clarify the sole purpose of the appointment, a local doctor to administer this protocol, and underlined that given my current travels and treatment I did not want to fit in an appointment with a lukewarm prospect or a dead end. I only was willing to meet with an interested doctor. (Am I repeating myself enough?) We checked in regularly to make sure that all the clarifying paperwork was in and reviewed in advance. The new patient administrator was great and reassuring until the final week. She confessed all she was doing to meet our reasonable demands but expressed doubts that the doctor was paying attention. The day prior, she called to say the doctor had pledged to call me that day with any questions. I stayed home and waited. No call came. The friend accompanying me wanted to know, “are we on?”, I gulped and said, “yes”. She arrived to pick me up at 10:15 the next morning.
The receptionist greeted us with over 20 pages of paperwork that I refused to fill out, saying, “I am here for a yes or no. If I become a new patient I will fill it out.” The new patient administrator was called in to back me up. I now had a clipboard of only three pages to fill out. I thought about the ever-expanding marcy westerling medical forest
clear cut for paperwork never to be read
being clear cut in my honor – a clear cut I could come to terms with if any health care provider had ever proven to read the reams of pages they demand. Sometimes I entertain myself by leaving pages blank – no one ever calls me back to fill in the blanks. Never.
My friend and I return to waiting. We watch a YouTube of African cocoa growers being introduced to chocolate, the product they make possible, for the first time. It helps five minutes pass. But then I am out front of the building pacing the in fresh air that gives me calm – even if the fresh air is in a large parking lot on a busy street. I create a pacing grid keeping me near the entrance. My pedometer will tell me I pace for over a mile while waiting. We are called in, put in a typical small, airless room to wait. I open the door, pace the hall both to observe and calm. I watch three women at a counter chatting. I decide to engage. “When do you think I might actually see my doctor? It’s been quite the wait.” They all rush to aid but of course have the non-answers of the system, “oh, he must be on his way.”
Eventually, a cheerful young woman arrives to review. She starts off poorly inquiring about a doctor I haven’t seen in years. This would be the pattern for the next hour. I was not nice. I said, “hmmm. I wonder if you have found the health summery that clearly shows who are my current doctors.” I then clarified, again, “I am here for one reason and one reason only and that is to hear if the doctor will do a specific protocol. It is a yes – no situation.” She left and then sent in the next woman who spent the first five minutes shuffling papers in her lap but at least in an effort to drill down to the topic at hand. Clearly no pre-work happened. She avoided eye contact. I was now a problem patient.
Her questions once started were mainly relevant; although she too was convinced doctors and systems of year’s prior were still treating me. Whatever. I moved her to 2014. I moved her to the protocol. There was a lot of silence as she studied the simple sheet of documentation. Her questions got smarter as she focused in. She might not have done homework but she was a quick study who wasn’t sure she liked what she saw. She said, tell me more about this clinical trail. I told her it was not a clinical trail. She insisted it was. I insisted it was not and three minutes were lost with the back and fourth that ended in truce not resolution. Then she decided it must not be legal. I assured it was, that all the drugs were FDA approved and covered by Medicare. She disagreed. I said it was off label use, routinely done. She assured me it was never done. Sigh. This was getting old. I switched tactics and asked her to look at how healthy I was, the robust lab results and the declining ca 125, perhaps, my body could provide testimonial. She conceded my point.
She left the room, we returned to waiting, me back exploring the boring hallways that make up every medical facility I visit.
The doctor arrived. He entered and immediately informed us he would never do the protocol. What perfect clarity for yesterday! He informed us I have recurrent ovarian cancer and it runs a certain course. Yes, I concurred, why did he think I was being so creative in my treatment options? He then proceeded in his own go round of why Medicare would never pay for this; my facts were entirely not relevant although I repeated Medicare was already paying for these treatments for me. I was ready to leave. My friend had given up a half day of work. The doctor closed with my favorite comment, “As a quality of life issue, you should not be flying back and fourth to NYC every other week for treatment.” OH MY GOD – this is exactly why we were in his office. Agreement and rejection in one farcical visit.
This doctor and this agency had every right to reject my request for a certain treatment. In fact, we anticipated it and thus requested they skim the few pages of data and give us their first instinct opinion. If it was a likely no, no need to proceed. We met every one of their requests for endless paperwork. They clearly understood their own staff’s repeated request that they review in advance. In the medical industrial system, those in power nod their heads agreeable, and proceed with the endless bureaucracy that ensures they can bill and the patient’s have a new hobby – sitting in waiting rooms.
By the way, the greeting for patients on the Compass Oncology website states, “The experts at Compass Oncology are here for you every step of the way with answers, support, compassion and respect. We understand cancer treatment is a highly personal journey, uniquely different for each patient. It is a journey filled with many decisions and potential directions. For decades, the physicians and staff at Compass Oncology have been united by a singular focus: to help our patients find a clear path to hope and healing.”
livingly dying 