When I arrived in Irvine in the summer of 2004 to start my new job, I chose a primary care doctor and went for a routine checkup. Late on a Friday afternoon, a nurse phoned me to tell me that my doctor was worried about one of my blood test results and I need to come in that day to get retested.
"What's the problem?" I asked.
"It's your pancreas."
"Is my doctor worried that I might have pancreatic cancer?"
"Maybe."
I remembered that a friend who had a terminally ill relative told me, "in case you don't know what pancreatic cancer is, it's a death sentence."
I immediately phoned the lab (which was down the hall from the nurse who phoned me). The recording said it was closed until Monday.
I spent that weekend sitting on the beach, watching the waves roll in and feeling sorry for myself as I tried to hold back the tears and not think about my new scare, pancreatic cancer, or my other current scare, breast cancer, which had killed my mother, and for which a recent mammogram was concerning enough that the radiologist insisted I enroll in an MRI clinical trial (under the assumption that my insurance wouldn't pay for a real MRI).
Blood was drawn when the lab opened on Monday. When I phoned a few days later to ask for the result, I was told I needed to wait until my doctor returned from vacation in a couple of weeks. I pushed back, and then changed my primary care doctor so I could learn the blood test result sooner.
Thus began a Kafkaesque nightmare with the health care system, as I was sent to one specialist after another, and for one test after another.
One of the doctors made me walk down a hall in an open gown in front of a group of construction workers, to wait in a dark closet.
Another time, my breasts were poked and prodded by a group of elderly male UCI doctors (i.e., colleagues of mine) who stood around discussing my breasts and alternately ignoring and getting angry at my questions. It wasn't how a doctor (let alone a colleague) should treat a human being.
The testing led to a concern that I might have ovarian cancer. Pancreatic, breast, and ovarian cancer scares were my welcome to UCI.
I was sent to a specialist who insisted on performing a procedure. The "informed consent" form said I understood that I was volunteering for a research study and the procedure would in no way benefit me. When I questioned this, the specialist yelled at me, said that what the form stated wasn't true, but I absolutely must sign it and not cross anything out. The procedure turned out to be not only unnecessary and unhelpful, but also left me doubled over in pain.
A recurring conversation with specialists was:
I ask: "What do you advise?"
The reply: "What's your insurance?"
"Does it matter?"
"It might!"
"I'd like your best medical advice. What would you recommend if cost weren't an issue?"
The specialists would give me a confused look. They had no idea how to give the best medical advice. They gave advice based on what the insurance company would be most willing to approve.
As time went by, I switched my question to, "If your mother were in this situation, what treatment would you recommend?" That seemed to elicit more useful information. But then I realized that some people in SoCal are either self-absorbed or hate their mothers, so I changed it to, "What would you do if you were the patient?" Eventually, I changed insurance plans to be on a plan that made the doctors' lives easier.
After some truly shocking experiences with doctors (some too lurid to tell here), I switched back and forth several times between UCI and other medical groups.
Luckily, those initial scares eventually turned out to be false alarms. But four years later I got a real diagnosis of breast cancer (that probably should have been caught sooner). The stakes suddenly got much higher.
Since I was on an HMO (Health Maintenance Organization), I needed the approval of my primary care doctor before anything could be done. She was on a long vacation in Maui. When she came back and learned I had cancer, her attitude toward me changed sharply from pleasant to hostile. I wondered whether her practice lost money on patients with cancer, and she was trying to get rid of me.
A friend who was an oncologist in another country thought that my oncologist was making major mistakes. I was told that I couldn't change oncologists unless I sent the HMO a letter of complaint, so I did. My request to change doctors was still denied, but my "grievance" was forwarded to my oncologist. The furious oncologist phoned me, yelled at me hysterically, refused to treat me, and hung up on me.
I suppose it's no wonder that I have symptoms of post-traumatic stress disorder whenever I go to a doctor.
A long battle with my medical group and insurance company eventually led me to a series of oncologists. One had been on probation for "gross negligence". Another told me he didn't want to see patients---his top priority was his own research. Weeks after I should have gotten the result of a test for circulating tumor cells (a particularly scary wait), I contacted his nurse. She was angry that I had called, and told me not to contact them again---the result hadn't come in and she'd let me know when it did. I eventually phoned the lab to learn that the lab had faxed the doctor the result just a few days after the blood was drawn.
The arrogance and anger of some of the specialists were disturbing and unpleasant, but what I found most scary were the mistakes, the downright dishonesty, and the lack of critical thinking skills, since my life depended on their getting it right.
I was glad that my surgeries were all bilateral, since the chances that a medical report stated the correct side of the body seemed to be around 50%.
I gave up trying to correct the false statements in my medical reports that were knowingly put there to cover the doctor's ass. No one was willing to change them, and it's not smart to alienate someone who holds a scalpel while you're unconscious.
As for their critical thinking skills, here's a subtle but mathematically interesting one. The doctor's argument for recommending that I do something was, "if you don't do it, then your chances of a recurrence are 2% each year. So there's a 40% chance it'll recur within 20 years." I knew that wasn't right. If it were really 2% a year (which it wasn't---it was considerably less), the probability would have been 33% after 20 years. I was too startled to reply, but as a math teacher I should have asked "so what would be the chances after 51 years?"
Then there were the blatant privacy violations. Like the vintage convertible in the hospital's public parking garage with its top down, with a list of private patient data (names, medical diagnoses, what looked like Social Security numbers) on the seat, fully visible to everyone who walked by. Or similar documents at the top of an open waste basket in the examining room, in full view of patients freezing in skimpy medical gowns as they waited an hour for the doctor to show up.
One specialist boasted to me that his patients waited an average of 5 hours after their appointment time before they saw him. He thought that proved what a popular doctor he was. (I thought it showed how poor he was at scheduling.)
I was more impressed by the chutzpah of the surgeon who scheduled my appointment for 11 am but didn't take me until after 12:30. It's not that he was seeing other patients all that time. Around 11:30 he walked through the waiting room and left the office. From the window I could see him walking down the street. He returned half an hour later with a sandwich. When he finally met with me his primary concern wasn't my health, it was making sure I signed his arbitration agreement.
Perhaps most disappointing was the heartlessness of some of the UCI specialists, who were my colleagues and neighbors. I had thought that doctors chose the medical profession because they care about people and want to help them. At UCI, I didn't feel I was being welcomed into a community of people who cared about each other.