The Wrong Side of the Bell Curve

And Other Observations about the American Healthcare System

Last month, for some reason, I felt compelled to talk to Sami’s UCSF healthcare team again. In the two months after Sami’s passing, I’d thought quite a bit about whether we missed early symptoms, or whether there was anything else we could have done. In reaching out to her doctor, I guess I wanted reassurance - not that any of my second guessing would have changed the outcome. When I finally spoke with her doctor in late October, I began thinking about our experience with the healthcare system - and found the system lacking. Again.

As we learned early on, glioblastoma is not a cancer that can be cured - it does not go into remission. Sami’s doctor told me that patients diagnosed with glioblastoma usually survive for 3 months to 5 years after their diagnoses, with an average survival of 1.5 to 2 years. Sami was on the wrong side of that bell curve - she passed away 197 days after we noticed her initial symptoms. He also confirmed that the earliest symptoms are usually what we detected - cognitive difficulties, motor skill impairment, and other neurological signs (all of which we observed in late January). I asked him if we’d missed anything - and whether it would have made a difference if we’d noticed symptoms earlier. He assured me that we did not - and that it would not have made a difference.

He also told me that there have been no new drugs approved for treating glioblastoma in the last 20 years. This is a cancer that confounds doctors - we don’t know its origins, causes, or cure. Glioblastoma remains a relatively rare disease, thankfully. I came away from the conversation somewhat reassured that we had done all we could do. And with confirmation that glioblastoma is an awful diagnosis.

Looking back at the care Sami received, UCSF was clearly the best. The doctors answered our many questions and took time to explain what was happening. The nurses (as they were nearly universally, regardless of the hospital) were amazing. But even at UCSF, while Sami was admitted to the hospital in early June, we had difficulty getting timely answers.

The Sutter Health system, on other hand, was consistently bad. During Sami’s first emergency room visit in late January, the doctor concluded that she’d had an aortic aneurysm, despite the neurological symptoms we’d described. The first neurosurgeon who operated on her several days later assured us that he’d removed “all” of the mass on Sami’s brain, but he failed to order a post-operative MRI to confirm this boast. During Sami’s second stay in the neuro intensive care unit at Sutter Roseville, the doctor tried to discharge her a day or two after her second brain surgery in two weeks - so that they could refer her to Sutter’s expensive acute rehabilitation facility.

In April, after Sami had a mild seizure, her medical oncologist (also a Sutter doctor) was unable to figure out the right anti-seizure medication for her. Early on in her treatment, we’d found that the most common anti-seizure drug lowered her blood platelets. We tried to explain this all to the oncologist, who finally threw up his hands and told us, “you’ll need to make an appointment with a neurologist - I don’t know what else to do.” The first appointment we could get with a Sutter neurologist was more than two months out (in July). Before that appointment, Sami suffered a major seizure and ongoing subclinical seizures - resulting in her admission to the hospital at UCSF in late May.

After Sami’s second major seizure in late July, she was referred to hospice care through Sutter Health. While she passed away just two weeks later, those last two weeks seemed incredibly difficult. Despite her condition, we didn’t start getting daily hospice visits until we convinced her nurse that we had a good grasp of where Sami was in terms of disease progression. At one point, we got a call from a home health aide who said, “I’m not coming back to work today after lunch; I’ll try to get there tomorrow.” I seethed. At each step in the care Sami received from Sutter Health, we seemed to have to convince her healthcare team that we knew what Sami was facing, that we knew how she was feeling, and that we were committed (at the end) to taking care of her at home.

In retrospect, much of my angst with the healthcare system has its roots in our insurance coverage. When I checked today, Anthem Blue Cross had been billed nearly $1.7 million since January 1. They’d negotiated this down to a total bill of just under $700,000. While we’ve reached our deductible and out-of-pocket maximums for the year, we continue to get notices that Anthem denied a claim for one of Sami’s ambulance trips (the ambulance company has recently taken to texting me reminders about this). While I’m grateful that we have insurance, the experience of navigating the insurance bureaucracy has been mind-numbing and infuriating.

Adding to my sense of being in the inescapable healthcare “matrix” is the “patient advocate” contracted by my employer to help navigate these issues. According to its website, “Accolade healthcare solutions combine unstoppable Health Assistants, physician-led care teams, and industry-leading technology. The result? Outstanding care experiences.” Our experience was less than outstanding, in every way possible. At one point, when we were waiting for Anthem to approve acute rehabilitation at St. Francis Memorial, Accolade completely ghosted me - more than 4 weeks went by without any response from my “unstoppable Health Assistant.” I had to resort to using Twitter to shame Anthem into getting back to us.

So what’s the answer? Clearly, we need more research into glioblastoma - the National Brain Tumor Society and Our Brain Bank are advocating for (and more importantly) funding research. UCSF is one of the leading neuro-oncology research hospitals in the U.S. - and clinical trials (like the one Sami had hoped to join) are critical. But from my perspective, we need to change the entire structure of the U.S. healthcare system. The system is broken - I can’t imagine navigating it without the help of my employer, my kids, and my own intellect. Stockholder returns for insurance companies and hospitals shouldn’t be given greater consideration than patient well-being and critical care.