I came to Colorado near the end of February because my mother’s Denver surgeon had
said, unequivocally, that surgery on the last of Mom’s tumors would take place “at the end of February or in early March.” Once I was already in Colorado, the doctor, whom Mom had told I would be flying in for the scheduled surgery, told us removal of the entire tumor would be risky, and was not viable.
Still, I’m glad I am here now to sort out this curious breed of people they call doctors, and to help Mom reason her way through important medical decisions. I am finding that being a patient-advocate means being a very patient advocate. Here I am, calling the proton therapy center in Loma Linda, California:
Me: What do you mean you can’t take people with Stage IV cancer? Why not?
Bureaucrat (not her actual name or title): We only do the proton therapy on Stage I and II.
Me: She’s not symptomatic. Another proton therapy center thought that made a difference. No?
Burcrat: We only do I and II.
Me: So is there some distinction, as regards proton therapy, that makes Stage I and II different from Stage IV without symptoms? Or could it be a distinction without a difference?
Burcrat: Stage IV is the stage we don’t do proton therapy on.
Me (trying another tack): Can you tell me why that is?
Burcrat: That’s our policy.
Kafka Was Lucky
The works of Kafka became famous for situations that make more sense than talking to someone who doesn’t know why her organization does what it does. If only the woman had uttered one of my favorite lines from The Trial, in which two mysterious men materialize in Joseph K.’s apartment and are unresponsive to his queries, the day would have been at least aesthetically perfect. In The Trial, Joseph K. eventually tries to leave his apartment, but the men tell him: “You can’t go out, you are arrested.”
“So it seems,” K. replies. “But for what?”
“We are not authorized to tell you that,” he is told. “Go to your room and wait there. Proceedings have been instituted against you, and you will be informed of everything in due course.” And then the hilarious line: “I am exceeding my instructions in speaking freely to you like this.”
K. tells himself this must all be a practical joke, or at least a mistake, for he lives in “a country with a legal constitution.” But no. K. is now in the surreal, irrational world that would come to be called Kafkaesque.
And I am in the world of American medicine, the bloated, inefficient thing we find ourselves stuck with in 2012. I’m an advocate for my mother in a different kind of trial. And one of the lesser trials is of our patience.
Witness our experience with the Denver-based gynecological surgeon and oncologist we met above. We’ve taken to calling her Dr. Chutzpah.
Dr. Chutzpah: Part I
Nearly two years ago, Dr. Chutzpah told my mother that she, Dr. Chutzpah, would not perform surgery on the tumor now in question unless my mother underwent chemotherapy afterward. (Yes, afterward. As if she could legally bind my mother’s post-surgery conduct). My mother told the doctor that she couldn’t go through another round of chemotherapy. The doctor said she would not operate without chemotherapy.
Last Monday, Dr. Chutzpah told us that the tumor is now too wound up with veins from the aorta to allow for a safe operation. She also said that Mom has a mucinous tumor, and that such tumors are usually not responsive to chemotherapy.
Dr. Chutzpah to a White Paging Telephone, Please
So Mom and I unpacked that as best we could.
In order to perform critical surgery, two years ago, that could have prevented the further growth of the tumor, had she required a likely waste of time, my mother’s scarce money, your taxpayer money (Medicare), and, not least, a great deal of statistically unnecessary suffering?
So what should we do now? we asked, two years later.
Dr. Chutzpah suggested that Mom should go through chemotherapy, just in case it worked.
Mom and I were perplexed. Hadn’t she just said this tumor was unlikely to respond to chemotherapy?
Dr. Chutzpah: Part II
In mid-January, Dr. Chutzpah told Mom to get another $8000 PET scan. Mom had just had a PET scan in mid-November.
Dr. Chutzpah then had Mom and her friends drive over the Continental Divide, in January, to Denver, for a pre-op procedure – and then sent her home, saying the hospital in Grand Junction had failed to send the critically necessary PET scan. Once Mom had arrived back home $400 lighter, Dr. Chutzpah’s office located the PET scan. It had been in her office all along.
But then Dr. Chutzpah said the $8000 PET scan that she had ordered, and which was necessary to the $400, two-day trip to Denver, didn’t show the right information. She called it “blurry”. Then Dr. Chutzpah did an interesting thing. She told my mother to get a CAT scan.
Now, you would think that if a PET scan had been the best choice all along, Dr. Chutzpah would have ordered another one. Or, if PET scans had a tendency to be “blurry” or to be unlikely to show the object in question, Dr. Chutzpah would have known that and ordered the CAT scan the first time around.
So far, two PET scans and a CAT scan in 60 days. Who absorbs this cost? We do.
In any event, Mom, her immune system struggling with the fearful thoughts this confusing process was causing her, immediately went to St. Mary’s Hospital in Grand Junction and underwent a $4000 CAT scan (thank you, readers!). The hospital again sent the doctor the CD. Then we heard nothing for several weeks. How to explain the time-sensitivity that says a November PET scan may not be current enough — but surgery can wait for several weeks after the third scan? Maybe there is an explanation, but if Mom was given one, she didn’t realize it.
Mom’s nerves were fraying. She wasn’t sleeping well.
Finally, Dr. Chutzpah left a message last Saturday saying she’d call Mom on Sunday. On the appointed day, Mom chained herself to her phone and did not go out all day. There was no call.
Late on Monday, Dr. Chutzpah reached Mom, said she’d called both of us earlier in the day (a curious fib in the age of missed-call lists), and said she hadn’t called on Sunday because, she said, “I thought you might be in church.”
When Mom (who does not go to church) got off the phone, she was incredulous. “Did she think I’d be in church all day?”
This, too, affected Mom’s sense of trust, and well-being.
Dr. Chutzpah: Part III – Primum non nocere, or First, do no harm
I watch these things with the eye of a consultant, a coach, a businessperson. (And a comic, sadly). I have been passionate about best practices and efficient systems since before I knew their names. I’ve devised the best ways of doing things, used them, recommended them, helped others build them for my entire career. And I too am incredulous — at the avoidable waste, inefficiency, and poor service I see in medicine.
Dr. Chutzpah, for example, does not have in place the fundamental operating policies a competently-run business has in place to make a real effort to respect clients’ time, money, and emotional energy (which is, or may as well be, the immune system). Leaving aside the possibly wasteful scans, here are just a few policies Dr. Chutzpah could implement as easily as creating checklists for them:
- Waste no patient money, I. Establish a procedure to ensure that a patient does not even cross town, much less the state, unless the doctor possesses all the tools and information the appointment requires, including a PET scan.
- Waste no patient money, II. Establish a procedure to ensure that a patient does not expend the time and money to come to an appointment unless all tools are in working order, such as clear PET scans.
- Take responsibility. If doctor’s office does cause a patient to foreseeably waste time and money, the patient’s overall bill should be reduced to compensate for the increased expense caused by office’s negligence.
- Pay attention to foreseeable consequences. If you know that a patient is making plans based on what you say, pay attention to what you say. For example, if you haven’t yet reviewed the CAT scan that would alone tell you if surgery was or was not possible, do not set a date for surgery that others will rely on at their expense.
- Do not substitute authority for evidence. When you do recommend courses of action, explain why. Cite a scientific basis for a recommendation. For example, if chemotherapy doesn’t “usually” work for a particular situation, give the patient, at a minimum, statistics for your interpretation of “usually.” Better yet, provide the actual studies you are referring to. Otherwise we have to wonder how cutting-edge your knowledge is, how good your memory, and how well you interpret data. And because you’re a human being and I’ve read the research on medical errors when doctors don’t implement good systems, I don’t want to rely on you alone.
- Have the courage to talk about ideas you disfavor. Please address those actions you do not recommend, even if you think they are absurdly alternative. Because we are going to find out about them, and we will want to know the scientific bases for your dismissal of them. We’re probably going to ask you anyway; why not be thorough and streamline things in advance? (Another doctor inspired this addition: When you are asked about alternative therapies, discuss them rationally and unemotionally, rather than with anger and contempt. The latter is about your ego. The former is about your patient).
- Better yet, write it all down. It is madness to expect a terrified person to hold in her head everything you tell her, or to take flawless notes. The mind screams: What are you thinking?
Dr. Chutzpah’s Last Ride?
Because no doctor had clearly laid out the options for my mother, nor written anything down for her, we were left with a raft of questions. I called Dr. Chutzpah’s office and left a voice mail saying we had questions. I asked for her email address. I said that we would not rent, sell, or barter the email address, but if the doctor was concerned about getting inundated with emails, I could put the questions on a web page and they could view them there.
I mean, right?
Dr. Chutzpah’s nurse called, several days later, to say that I should leave the questions on their answering machine. Twice she stressed that I should not be worried about leaving “a long message”. In fact, I was quite brief. I read off these questions:
- What is the primary cancer here? We have heard ovarian and lung.
- How was the stage defined? What does it mean to be in Stage IV without symptoms? Is such a Stage IV not qualitatively or quantitatively different from more symptomatic Stage IVs?
- Is this tumor metastatic (spreading) from the primary?
- Why was chemo required 2 years ago when she’s saying now that Mom’s type of cancer typically doesn’t respond to chemo?
- Why not do a chemo compatibility test?
- What are your thoughts on partial removal of the tumor first?
- Can a biopsy be done without surgery, or in this case is a biopsy about the same procedure as surgery? If the latter, does it not make sense to do the surgery in order to learn what kind of mass it is?
The next day, the nurse called us back.
“Dr. Chutzpah,” she said, “said that if you have so many questions you will need to make an appointment to see her.”
“I’m disappointed to hear that,” I told the nurse, “because I think we shouldn’t have that many questions. Their answers should have been included in a well-thought-out presentation. And if there’s not going to be any medical exam, it doesn’t make any sense to travel all that way for a conversation that can be done by phone. Does it?”
Eliminating the only remaining reasonable objection, I added, “We’d be happy to pay her for her time on the phone, but it makes no sense to drive four or more hours to Denver when there won’t even be a physical examination.”
“I will communicate your views to Dr. Chutzpah,” the nurse said.