After much deliberation, I decided it was now time to write a long letter to the medical powers at this teaching hospital. To find their names, I obtained the hospital's annual report and ascertained that it included the Medical Executive Committee and the Board of Directors, as well as the Overseers. I did not think it was necessary to send my report to everyone - just a select few who would probably discuss it with their colleagues. I chose fifteen at random and then began to hammer out my document.
This process took me many hours as I wanted to present my case clearly and concisely. It was also important to me that this group understand that I cared about their hospital, as I knew they did, too, and that it was only my intent to help them prevent such a terrible situation from happening again. Then I explained my background, including my extensive involvement in health reform. In fact, because I knew many on the Board of Directors from this work, I had credibility with a number of people there.
My document also included a summary of the incident; my health background; and a conclusion, where I wrote: "As I am certain that you know, the first rule of medicine is to 'do no harm'. That rule was broken in my case and my family and I suffered unnecessary mental anguish, which has not completely disappeared for any of us. Therefore, it is very important to me that you and all the people who receive this report will take action to make certain that such a situation does not arise again. The hospital is a fine institution and I would hate to discover that it has become second rate because of carelessness and lack of humanity."
I mailed this report and waited for a response. There was only one email and that was from Ralph, an Overseer. He had known me for a long time - we had worked together in many health reform organizations. On his subject line of the email, he had written: "My God!" and then in the body, he said: "That is the most horrendous story. The most important thing, of course is that you are OK." Then he asked me if he could share my story with "folks who might actually care...(Do) Something to the structure or whatever so it won't happen again" and "Can I use your name or should I not do so?" Of course, I agreed to his revealing my name, but, in any event, I never heard from Ralph again.
I also received a letter from Dr. Max Stein, Chief of Medicine, who, as Dan had explained at our lunch, was the real power in these instances. It was only he who could take action against Nicole through the Peer Review Committee and not Dan, who was in charge of Administration. The problem with this Committee, though, is that its actions are confidential and not available to the public. Thus, a patient can never know how a doctor has been disciplined, if at all.
And so, as the summer turned into fall, and then into winter, I waited and waited to hear something from the hospital. There still had been no response from the Peer Review Committee when in January, a full five months after the incident, Dr. Michael Berlin, Director of Quality Control in the Department of Medicine, requested a meeting through Amy Brown, a social worker in his department,who would also be present. After so much runaround, I did not believe that anything would be accomplished by talking to either of them, but I was curious to hear what they had to say. Thus, I dressed in my professional attire and headed down to his office.
Arriving early, I ran into Dr. Berlin in the hall. A small, seemingly distracted man, he looked as if he had not slept in one hundred years and he was white in every way - his hair, his pale skin, and his white coat. He wasn't ready to talk with me and so he sent me to a conference room to await him and Amy.
When I got there, food was being cleared away from the previous meeting. Thus, I was able to grab myself some lunch from what was left. After all, I thought, who knew what line Berlin and Amy would take with me. I might as well fortify myself with their food - a brilliant notion as it turned out because the leftovers were delicious and the meeting was indeed confrontational.
In a few minutes, Dr. Berlin and Amy joined me. She was in stark contrast to him, Jeff to his Mutt. Amy was about six feet tall and as wide, decked out in a giant muumuu. She sat opposite me, with the doctor to my right, at the head of the table.
"You know, Ellen," she said sanctimoniously. "I have great faith in Nicole. Many times when doctors are confronted with their mistakes, they deny them and I worry that they will continue to hurt their patients. But Nicole understands the mistakes she made with you and has truly considered all this as a learning experience. So, I know that this will never happen again."
There is was once more, I thought. Like Dan, Amy considered me a "learning experience," never mind that Nicole's poor judgment could have killed me. Angered by her condescension, I replied, "Well, it's lovely that you have so much confidence in her, Amy. But Nicole almost destroyed me with her words. If she continues in this way, then she will really lose a patient and the hospital will have a lawsuit on its hands!"
Agitated, Dr. Berlin piped up, "Ellen, you don't understand how upset Nicole was when she thought you were going to die! It was a horrible time for her!" Did my ears deceive me? Was Dr. Berlin really defending Nicole, the woman who had terrorized me needlessly? Did he really believe that her suffering was more important than mine?
Apparently his ego was so inflated that he actually thought that I would buy into his twisted and narcissistic argument, that I would agree with him that Nicole had been the victim in this debacle and not I. After all, what could it mean to me that I might be losing my life? That was just a blip on my screen. But Nicole's being upset - now that was what really mattered.
Obviously, it would be easier for all of them - Dan, Berlin, Nicole and Amy - if I accepted their "learning experience" excuse. Then they could all continue as before and everything would be wonderful in Medicaland.
Outraged by his insensitivity and lack of compassion for me, I jumped up from my seat and declared, "Look at me, Dr. Berlin. Do I look dead to you? According to Nicole, I should be! And," I continued, "is the Peer Review Committee going to monitor her to see that she does not do this again?"
"Well," he answered. "The Peer Review Committee met with about twenty-five doctors in attendance and everyone felt terrible. They had her boss and Dan meet with her and she knows that she did wrong and will never do it again. Plus, we've taken the necessary steps to discipline her. Doesn't that make you feel good? Of course, we can't tell you how she is being disciplined as that is confidential."
How convenient for doctors, I thought, that the Peer Review Committee meets without patient input! It was incredible to me that Dr. Berlin and Amy believed that I would be satisfied with this meaningless procedure, which, I was convinced, had no effect on Nicole's career as a physician.
Therefore, I declared, "This meeting is concluded as far as I am concerned. It doesn't matter if a patient is treated badly. You doctors just circle the wagons and protect your own. It's the foxes watching the henhouse. So, I shall just call it a day." With that I walked out, leaving them aghast. It was incredible to them that they had lost control of the discussion with me, a mere patient.
When I arrived home, I was in total despair. It had been so hard to keep up my spirits when I was undergoing chemotherapy and radiation. Fighting cancer requires 100% of your focus and I had never let my guard down during this period, not even once. Yet now it seemed as if I was facing a situation that was harder to bear, if that was possible - the cruelty of the medical establishment.
How could doctors harm me so terribly and yet try to cast me as the villain? After all that I had suffered since I had been diagnosed with cancer, their lack of humanity and lack of compassion almost destroyed me and, for the first time since I had learned I had cancer, I just fell apart and cried and cried.
After awhile I regained my composure, but I did not know how to proceed. I just felt stalemated and worn out from the whole situation. I talked a lot to friends and family. Many were of the opinion that, since it was finished, I should just move on and forget about the experience. Moreover, they reasoned, I had tried to get justice,but I was only one person. What could I alone possibly achieve? It was now time, they said, to just live my life.
I have to admit that at that point I agreed with them. After all that I had been through, I just wanted to get out and have a few laughs. Hadn't I earned them? Hadn't I been through too many sad times? Therefore, I decided to try to forget this ordeal and to re-enter the land of the living.
TO BE CONTINUED...