Stanford's "tight communication"

“I think one of the best things about doing your treatment at Stanford is our tight communication.”  Dr. Colevas, medical oncologist at Stanford.

Warning:  This blog post is only for people who enjoy reading tedious details about bureaucratic inefficiency. For a capsule summary, go here.

As I mentioned, my medical group (PMG) denied treatment for the chemo at Stanford but agreed to the radiation.  Nancy Walsh, my case manager, had to deliver the news. But, she is awesome.  She told me in as humane a way as a person could that her medical director was insane (my words, not hers—she was very politic). She has been incredibly responsive and helpful along the way.

Just to recap my treatment plan: 6 weeks of radiation daily; once a week, also a chemo session. The split treatment seemed absurd to me.  Beyond the obvious inconvenience, my fears were that this would delay treatment, that it would extend a long treatment day and add to my stress, and that there might be communication problems or practical problems of actually doing both on the same day.

I did call the Santa Cruz oncology office to try to set up an appointment.  The receptionist explained to me that 3 oncologists retired in October and their office has been slammed since then.  They now triage all their appointments with the doctor prioritizing.  I didn’t know where that put me.  But, she said that it would be within two weeks. Merde.

At the same time, I decided to appeal the decision.  Health Net agreed to expedite my case and make a decision by Friday (yesterday)  My case coordinator, Queenie, seemed quite competent.  I told her I would fax my case as soon as possible.  The problem was that I had fears more than facts.

I called the Cancer Center to get the facts.  All calls are routed through one central phone number.  I told the women who answered that I was appealing my insurance decision and needed some medical information about my chemotherapy.  They told me to call Susan Vazquez and supplied her number.  I did.  She said that she was the insurance person and I needed to talk to a medical person, so I should call back the central number. She did add that 99% of these sorts of appeals fail.

I called back the central number. I told them that my doctor was Colevas, but he was on vacation, so I needed to talk to whoever was covering for him. They said they would get a hold of the nurse from that department who would call me back.  I waited for the rest of the day for that phone call, which didn’t come.

My PCP (primary care physician), Dr. Owens, did call me in the evening and said that she found their decision to be ridiculous and would try to get the decision overturned by calling PMG directly.  (The result:  They responded bureaucratically to her and said the decision was in Health Net’s hands.  Of course, they had the power to overturn it, so that was nonsense.)

The first thing in the morning, I called Queenie and told her that I was still waiting to get my case together, and I would send the information by either the end of the day or first thing Friday.  She said that would be acceptable.  She also told me that Health Net had asked PMG to reconsider, which they quickly rejected…)

I called the SC oncologist, Dr. McMullen, to see where I fit in her triage, and I actually was given an appointment for this coming Wednesday.  My plan was to cancel the appointment it if I won my appeal or get her to refer me back to Stanford if I could, which is all that it would take for my medical group to agree to have it at Stanford.  Anyway, the fact that the appointment was soon did make me feel a little better.

Then, I called Stanford and told them that no one ever called me back.  They said that the nurse had left a message with the call center—which they failed to relay—telling me to call Susan Vazquez, the insurance person. Argh. I needed MEDICAL information!!! The woman, Tenesia, said that she would have them get back to me within two hours or I should call her back. (She was very caring, I will say.) Then, she called back in an hour and said, “well, actually, they are all in the tumor board now so don’t expect a call until around 2 pm.”

Russell called back around noon.  I begin to tell my situation and he said, “I hate to tell you this, but this is the surgery department, and I am not the right person.” I said, “but I told them I was Dr. Colevas’ patient" (a medical oncologist).  Turns out Stanford lists the surgeon as the doctor for anyone who goes through the tumor board, even if there isn’t going to be any surgery. So, they sent me to Dr. Sunwoo. According to Russell, the call center staff—who work exclusively at the cancer center— don’t understand the difference between surgery, medical oncology and radiation oncology, and therefore just send the medical call to the listed physician regardless of what the person says.  I mentioned that a little training of the call center staff could help…

Russell said he would get a hold of Richard—a nurse practitioner— at medical oncology and have him call me back.  Around 3 pm, Richard did so.  Now I can’t even begin to tell you how mind-bogglingly crazy this conversation was.  Just to give you the flavor of it is what we did for about 45 minutes:

Me: “It seems to me that it is a bad idea to split treatment for practical purposes as well as because necessary medical communication and response to problems that arise would be negatively impacted.”

Richard:  “You are preaching to the choir.”

Me:  “Ok, could you put down on paper why you think it is a bad idea medically?”

Richard: “I didn’t say that.”

Me:  “What did you say?”

Richard: “I don’t know anything about the treatment at Santa Cruz.”

Me:  “I didn’t ask about that.  I asked if a split treatment is good medically…”

And round we want on that one.  Finally:

Me:  “Let’s change topics.  How long is the infusion?”

Richard:  “It takes 8 hours”

Me:  “Eight hours?  Doesn’t that rule out having it in two places?”

Richard: “I don’t know anything about Santa Cruz’s protocol.”

Me:  “So, one could do it faster?  Is that what you are saying?”

Richard: “I don’t know anything about Santa Cruz.”

Me:  “I didn’t ask about Santa Cruz, specifically.  I asked if your protocol—in which the infusion takes 8 hours—is necessary for this drug?  And, if not, why would you have people sit around for hours that weren’t medically necessary?”

Richard: “I don’t know about other places.”

Me: “I get that, but you know about Stanford’s protocol, right?  So, why does it take so long?  Is that normal?”

Richard: “This is Stanford’s protocol.”

Me:  “Let’s do this—can you just give me a sentence that says that the infusion takes 8 hours at Stanford and I will take it from there.”

He hemmed and hawed and finally offered that he would try to find a copy of the protocol and get back to me. 

In the meantime, desperate for real information, I called the Santa Cruz oncologist office. The nurse—I think her name was Kendra—called me back in about 15 minutes and was incredibly warm and knowledgeable and helpful.  Everything the Stanford guy was not.  She told me the infusion takes 4 ½ hours in Santa Cruz.  She explained that the actual chemo drug took about an hour, but that they also have to give fluids for hydration and to control nauseousness. So why does Stanford takes so long?  She said that they get the pharmacy to mix everything, which really slows the process but they do it themselves.  Ahhh!

Me:  “So, you are telling me that it is practical, if not very nice, that I could do the split treatment.”

Kendra: “Unfortunately, that is what I am telling you.”

She also said that there would be no delay in my treatment if I came there.  That radiation takes a long time to set up, but chemo organization is very rapid.

At this moment, I realized that my day would not be longer if I did the split treatment.  Instead of sitting around Stanford, I would be sitting in the car.  I am only having 6 infusion sessions—once a week.  The first one will precede the radiation.  Therefore, we were talking about five days.  My objections to the split treatment were dissolving.  It might not be such a bad thing.

Richard called me back with a changed tone and attitude.  He obviously talked to some who said: “go ahead and help the woman”.  He offered to call Health Net to say that they thought split treatments were not possible on a practical basis.  Great!  Now, we are talking…but, to tell you the truth, I wasn’t sure if I wanted them anymore.

For the first three chemos, I would be driving myself and I didn’t mind the drive at all. I would just as happy to listen to music in my car as to hang out waiting for some pharmacist in Stanford.  For the latter appointments in which I might not feel up to driving, I thought it would be better for Leslie to be in Santa Cruz.  And, we could take Ziggy, too, which would relieve Laura of the need to doggysit all day. Leslie and I talked about it and I decided to just stop fighting it and do the split treatment.

Friday morning, I cancelled my appeal.  Case closed.

I wish!  But no…take a breather and come back for part two…

I hadn’t mentioned that in my attempt to find out whether the split treatment might have negative medical consequences, I did call my radiologist, Dr. Hara. After describing the situation and my appeal to her receptionist, she said that she would have the doctor return my call.  Dr. Hara didn’t return it Wednesday or Thursday and, frankly, I forgot that I even called her.  At the tumor board, she was the only woman and was the most reserved of the doctors.  She seemed quite competent and I was very comfortable with her, but she wasn’t somebody I was going to joke around with…

Anyway, mid-day yesterday (Friday), she returned my call.  She said that split treatments were a horrible idea medically, principally because during the last few weeks on this regime, many patients require daily hydration (i.e. infusion of fluids).  That meant I would have to travel to Santa Cruz, theoretically, daily!  She also said that she couldn’t guarantee that she could do the radiation early enough in the day to make it work practically.  (At Stanford, they just squeeze the radiation in during the down times while the pharmacist is getting the drugs ready.)  She made it clear that she did not want to treat me if it was split. 

I had already cancelled my appeal, but I asked if she could put this in writing.  She said: “No, this should really come from the medical oncologists.”  She did say—and this was a repeat of something she said at the tumor board—that the radiologists in Santa Cruz were excellent and that was one of the reasons for her recommendation.  I explained that I wasn’t living in Santa Cruz, and she got it, but she was very adamant that it should be one place or another.  Great.  A day late and a dollar short.

I just sat down and cried.  You know the kind of tears—just dropping regularly from the eyes.  Nothing dramatic.  But, pretty constant.  While this was unfolding, Laura was cooking for a 6-person dinner party.

I called Queenie, and she said she could reinstitute my appeal.  Leslie called Nancy Walsh at PMG (because I was pretty sure I wouldn’t hold it together at that point) and left a message.  She called back soon thereafter, and she was clearly sad to hear my tale. She said she would get me a direct referral to the radiologist in Santa Cruz if I wanted to go that route.  I told her to do it as a placeholder.

I called the Stanford cancer center number and gave the woman a brief recap.  They said, “so you want to leave a message with Dr. Sunwoo?” 

“NO! Nor do I want to talk to Susan Vazquez!  I need Dr. Colevas’s staff.”

I got a call back from Jamie, his nurse.  Unlike Richard, she was straightforward.  But, she basically said that yes, Dr. Hara was correct, I might need daily hydration towards the end. And, why did Richard not think to mention that detail?? 

Me:  "Ok, could you write this down so I can submit it with my appeal?"

Jamie:  "I am not authorized to put any of this in writing."

Me: "Ok, can I get a doctor to do it?"

Jamie: "Dr. Colevas will be back Monday and he could do it."

Me: "I need it today. Dr. Colevas told me that there would be another person handling my case while he is on vacation, can’t he do it?"

Jamie: "We only call him in emergencies so, no."

Jamie did offer to call Dr. Hara and see if she could get her to do it.  That was nice.

Nancy called me back with a Wednesday appointment for the “excellent” radiologists.  The only kink in the works:  Both of the radiologists were on vacation and there was a substitute.  Oh, great…

I then called back the SC oncologist office to talk over this latest development.  As before, the nurse called me right back.  And, as before, she was warm and understanding and helpful.  She basically said:  “I do agree with your Stanford doctor.  You should do in one place, if you can.  We are really good at what we do.”

I asked what she thought about the radiologists and what she knew about the substitute.   She gave some important info:  they are a couple, which is why they are both on vacation at the same time.  She said that this was their long-term substitute and that I really shouldn’t worry about it.  “If I had your condition, I would be more than comfortable doing it with them.  They would be my first choice.  And, our office has excellent communication with them.  Trust me, you will be in good hands.”

I believed her.  Beyond the medical director at PMG who made the bad call that led to this drama, everyone in Santa Cruz had been great, helpful, warm.  I felt Santa Cruz was calling me home.  And, I decided to just take Dr. Hara’s advice and do the full treatment in Santa Cruz. (Now, we need to find a home there...Any ideas?)

As for Stanford and their “tight communication”—spare me.  I now know while 99% of appeals fail. Their attitude: if you can get your insurance to pay, we are here for you.  We certainly won’t help before then.  Maybe I could win the damn appeal, but I no longer want them.  They might have great doctors, but they have serious protocol problems.

After this mess, all I can say: Go Cal!