Posted by: drrozkaplan | December 19, 2009

Risk Reduction

Today Fran and I are at the University Hospital Surgicenter.  To recap from yesterday, we’re here because Fran has the BRCa2 gene mutation that increases her risk for ovarian and breast cancer.  Today she is having her ovaries and fallopian tubes removed, completely eliminating her risk for ovarian cancer.  Her husband has a phobia of hospitals, so I’ve been elected to be her support person.

This place has been amazing so far.  We arrived a few minutes early.  The receptionist was sweet, kind and incredibly funny, reducing Fran’s anxiety immediately.  She’s been told what to do and what to expect at each moment.  And things have been so efficient!  In at 8:10, to preop at 8:15 (I was allowed to accompany her there) where she changed into OR garb and was promptly visited by her nurse, the IV technician, the admissions clerk, the gynecology resident, the surgeon, and the anesthesiologist, and into the OR by 9:30.  Clockwork.  All Fran’s questions were answered, and the staff could not have been nicer.

Things have not been this smooth all along the way, however. In fact, the road to this point was full of potholes.  I work within a community health system in the suburbs.  I think the care there is excellent.  We have world-class specialists, great technology, and some of the best nursing I have seen anywhere.  As community doctors, we are all very patient-centered.  We try to make it easy for patients to get appointments and navigate the system.  Our hospital administrators are extremely focused on patient satisfaction, because our business is patient care.  I would tell you that if you needed hospitalization or surgery for most ordinary conditions, this kind of a system is the way to go.  But with something like a gene mutation, a rare disorder, or certain diseases under active research, there may be significant benefits to utilizing a major university center, one where the research is happening and the super-specialists are available.  This is one of those situations.

The problem in these centers is that they are huge and impersonal and often fragmented in the way care is provided.  The Surgicenter is running along smoothly because it is self-contained and it is a money-making enterprise.  But the things Fran needed that got her to the Surgicenter did not happen in a patient-centered way.

First, she had an appointment with the genetic counselor.  As often happens in these situations, Fran didn’t absorb all the information she was given at that appointment.  She recalls the doctor being surprised at how ‘well’ she took the whole thing, making the decision to have her ovaries removed, setting up the appointment, and going on her way.  She was offered an opportunity to meet with a social work student, which she declined.  No further follow-up with the genetic counselor was suggested.  She was sent home with reading material.  Fran didn’t want to talk to a social work student, who was likely decades younger than she, and had very little training.  And her denial was firmly in place at that point.

It was much later that the anxiety hit.  What did it all really mean?  Her reading concentration isn’t that great, and the reading material wasn’t on a very sophisticated level.  Fortunately, she has other people in her life to get information from.  But it would have helped to have further counseling then.

Her appointment with the surgeon was uneventful, though with travel into the city, parking, wait time, and paperwork it took the better part of a day.  She knew what to expect from the surgeon himself though, and that was okay.  But before the surgery could actually be done, there were blood tests, a chest xray, a pre-op physical exam and a breast MRI.  The surgeon’s office sent her ‘right downstairs’ for the bloodwork.  But after waiting a half-hour, she was told that it was too soon to have the bloodwork; it had to be done no more than 30 days before the surgery.   And no, it couldn’t be done anywhere else.  It had to be done at the University Cancer Center, which meant another trip into the city a week later.

The breast MRI was probably the worst experience.  Knowing her increased risk, Fran went to the test very anxious.  She had been waiting weeks for it, and the anxiety had built up over time.  Because of her insurance, she needed both a referral from her primary doctor and a ‘pre-certification’- permission from the insurance company to have the test done.  She was told by the receptionist at the radiology suite that her paperwork was ready when she arrived, but after waiting for over an hour in a gown, a manager told her that she was, in fact, not pre-certified to have the test.  She waited for another hour while someone spoke to her primary care doctor’s office trying to solve the problem.  At the end of that time, she was told that nothing could be done that day and she would have to come back.  When she pointed out to the manager that she had now been waiting for 2 hours in a gown, he told her that could be remedied- she could get dressed and leave.

Fran ended up rescheduling and got the MRI the following week.  It was normal.  She was angry and stressed by the experience, but soldiered on.  The real issue here is not Fran’s MRI, though.  Fran was not sick.  She was not a cancer patient or a frail old person or someone made emotionally fragile by chronic  physical or mental illness.  But the manager who treated her in such a cavalier manner didn’t know that.  Nobody should be treated so shabbily.  But many of the people coming through medical testing sites really are sick and fragile.  They in particular need to be treated with kindness and dignity at each and every turn.

Even three days before her surgery, Fran was struggling with administrative issues: the referral for her surgery itself had not been electronically transmitted from her primary care doctor’s office to the surgeon’s office.  She managed to call and get it sent.  In my view, the idea of a primary care doctor having to generate a referral for this sort of surgery is crazy, but that’s one of the reasons I don’t participate with HMO insurance.

Fran wrote a letter to hospital administration suggesting something obvious and simple that could have made such a huge difference in her experience.  Why couldn’t each patient entering the maze of testing and procedures be assigned to a sort of case manager, someone to guide them through the maze, and make the process simpler for them?  For instance, in Fran’s case, that person would have sat down with her once she’d seen the surgeon and seen what tests and procedures she needed.  Then the case manager would have set up the times and places for all those tests and been responsible for the paperwork related to them.  Any questions, problems or issues arising would go through that case manager, rather than having Fran deal separately with the surgeon’s office, the lab, the radiology suite, the primary care doctor’s office, and so on.  It seems like a great idea, but would it work?  And how much would it cost?  Or would it end up saving money in the long run?

I don’t know the answers to any of these questions.  I do know that everyone is talking about cost and quality in medical care, so here’s a real life, personal case in which both the best and the worst of the system has come out, and there are lots of things to think about.

I just found out that Fran is out of the OR and that all has gone well.  Tomorrow we’ll check in on her emotional fallout.  For today, we’ll let her sleep off her anesthesia.

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Responses

  1. Your blog is to me a story of friendship and self advocacy when the medical machine fails the need for a patient .
    I would think it would be cost effective for a patient advocate.
    Leaving on a MRI machine not in use in search of approval is not cost effective.
    The surgical center running like clockwork is.
    Thanks for sharing your experience as the friend in the white coat.


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