The San Francisco Chronicle just ran an article today. A two year old little girl was found with liver cancer that had metastasized to the lungs. She was treated initially with chemotherapy and then needed a large resection of part of her liver. Resecting a part of a liver in a two year old is an uncommon and dangerous procedure, almost always performed in a very specialized children's hospital. In this case she was operated on at John Muir Medical Center (JMMC), located in the East Bay suburb, Walnut Creek. She died on the operative table.
This is a scandal. The Chronicle devoted about six full pages to it. What did she die of? An air embolus, over-transfusion and other mistakes by the anesthesiologists, a nick on the vena cava by the operating surgeon? The lawyers will want to know, but whatever it was, that was only the proximate cause of the death. The underlying issue is this – this happened in the heart of the Bay Area, not some rural area with few resources. How did it happen that with all these top, experienced resources available, the child was treated at JMMC, which, although it has aspirations to be so, does not yet belong among those elite institutions? With all the experience and practiced teams in these other institutions, how did this little girl wind up being at an institution where she was their very first patient to receive this operation? Whatever the reason was that she wound up at JMMC, that was the cause of her death.
I myself had a serious condition 10 years ago, a tumor the size of a small tomato in my pituitary gland in the middle of my head. It's not as rare and and not as dangerous as this little girl's liver cancer, but it isn't beanbag, either. But unlike the little girl's family, I am a medical insider. I'm a doctor who practiced for over 30 years in this area, so when I got my diagnosis, I knew my way around. I found my way to a surgeon whose specialty was just the condition I had, and instead of being the first operation that he performed for my condition, I was number over 2,000, and the hospital where he operated on my had been the site of hundreds of these operations. That's what you want for your condition. You don't want to be a pathbreaker if you can help it; you want to be “another one of these.” The little girl could have been that, but she wasn't. She was a pathbreaker needlessly.
Who directed her to JMMC? They say in the article that they were reassured that the doctors were from Stanford, and that the site was nearer to them, even though they could have gone down to Stanford's home hospital in less than an hour. They were assured that JMMC was excellent; the doctors were confident, JMMC is on the glitzy side, upscale. But what you can be assured they were not told was that this was JMMC's first pediatric liver resection.
So what I'm thinking is this: at some point their primary care pediatrician must have been involved. Was it he or she who directed them to JMMC? Or, did the family and the pediatrician contact Stanford and Stanford directed them to JMMC, their affiliate they were eager to get off the ground? Who did it? Why did they do it? Were they aware that they were putting the interests of the hospital above those of the patient's?
One of the main jobs of a primary care doctor should be to be a health care fiduciary for their patients. The meaning of this term is analogous to the financial industry. When you have a financial advisor that person needs to look out for your financial well-being and not just recommend the in-house mutual funds, which might be higher priced and lower performing than other choices available in the market. A primary care doctor needs to do the same for his or her patient – find the best and most appropriate.
So, one of the things I would want to know is, who is the primary care pediatrician for this patient, and what was his or her contribution to the JMMC referral? In particular, was that pediatrician associated with JMMC? How closely was the primary pediatrician involved in picking the specialist referral?
It's not just primary doctors who can serve the patient as a fiduciary. My friends Bob and Adele Levin have written an important book, I Will Keep You Alive, that highlights the brave fiduciary role played by Bob's cardiologist in steering him away from an overly activist cardiac surgeon at her home hospital in favor of a more nuanced surgeon across the Bay.
Others are obviously culpable as well. The Chron article details how a brave internal experienced physician warned strongly that this operation was beyond the hospital's capability, and for her efforts her contract was not renewed. The hospital and top staff continue to insist that their decision was not a bad one. A doctor friend of mind thinks that Stanford should be on the list of parties being sued, since they had a hand in allowing this to happen.
Myself, I think the health fiduciary role of the primary care physician is grossly underestimated. The role is not taught at our institutions, and it is underestimated as hospitals increasingly buy practices and form their own networks.
I've made this point before.
The issue can actually be rather subtle. The best primary care doctors want to act as the patient's medical fiduciary, looking out for the patient's best interest in every way, beholden only to the patient, not to the company who employs him or her, or to the payer. Sometimes, that means finding the best person and facility for the patient with every condition and for every test. Networks, based on who signs up for whatever reason, and those who don't sign up for whatever reason, constrains the ethical duty of the health fiduciary. What can be done to enable the doctor to refer the patient for the patient's best interest, despite network relationships? Something should be done.
Budd Shenkin
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