I Fired My Doctor

I fired my doctor today. Actually, he was a nurse practitioner. But he’s fired nonetheless. And, if I can help it, I’ll never go to a Sutter hospital or doctor again.

When I moved from Auburn, I debated about keeping the primary care physician I had there - I liked him, and our daughters had played soccer together. But I decided that a two hour drive was a bit much, considering there were other options closer to home. So I opted for a practice in Jackson. For the first time in more than a decade, I had to establish a new relationship with a medical professional.

My appointment in late July was fine. The NP was a nice enough guy, although looking back at our appointment, I realize now that listening was not his strong suit. He went through my medical history, asked me questions about my answers to the online pre-appointment questionnaire I’d filled out, and asked me if I had any questions. I did.

I asked about some chronic pain I’d been experiencing in my right Achilles tendon. I asked about the upper respiratory congestion I experienced most mornings. I asked about whether I should get a regular skin cancer screening. And I asked about getting bloodwork before my next appointment.

He answered all of my questions. To some degree. He said I probably had arthritis or bone spurs in my ankle, and suggested treating it with heat. He said my congestion was likely due to allergies, and suggested that I change over-the-counter medication. He said I should definitely have a skin cancer screening every year, and looked at a couple of spots on my hands (that he said were not a problem). And he said he’d order bloodwork.

Imagine my surprise when I learned that I had more than $800 in out-of-pocket charges on the bill I received in late August. Charges that involved diagnoses of my ankle and my congestion. Charges that included titers for childhood diseases that I told him I’d been vaccinated for. Charges for answering questions that I assumed were normal inquiries that I could ask during my annual wellness visit.

I immediately contacted Accolade, which is supposed to be my “patient advocate” with doctors and my insurance company (Anthem Blue Cross). I had tried to get Accolade to help us during Sami’s illness and got absolutely no response. This time, at least, they responded, but the results were similar. They basically told me there was nothing they could do.

I reached out directly to Sutter Health and to the NP’s office (which is not easy to do - when you call the local number for the NP’s office, the call is answered by a call center that is nowhere near Jackson). They agreed to revisit the bill - and I found out yesterday that they were able to save me $200. So finding out I should put heat on my ankle, that I should take allergy medicine, that I should get regular skin cancer screenings, and that I had in fact had my childhood vaccines, only cost me $600 and change.

This lengthy diatribe, I guess, is partly a result of my pent-up frustration and anger with the healthcare system generally, and with Sutter Health specifically. Our experience with Sutter during Sami’s illness was horrible. Her first neurosurgeon failed to follow the standard of care for post-surgery imaging - he didn’t order an MRI after her first craniotomy, so Sami couldn't start cancer treatments when we’d hoped. When she ended up back in the hospital two weeks after her first brain surgery, the second surgeon couldn’t tell us whether her tumor had regrown, or whether the first doctor had missed part of it - all because the first doctor had failed to order any imaging. Later, her medical oncologist basically threw up his hands when we questioned him about whether Sami’s anti-seizure medications where interfering with the other drugs she was taking - telling us, “You’ll need to ask another doctor.” At the time, I wrote a detailed letter to Sutter’s office of quality care. More than two years later, I’ve yet to get a response.

The trauma of our interactions with the medical system continue to cause me stress. Since Sami died, whenever I go to the doctor, my blood pressure is initially higher than it typically has been. It comes down when they check it a second time, and the nurses usually tell me that it’s “white coat syndrome” - elevated blood pressure caused by the stress associated with seeing a doctor. I’m sure that’s true, but it would be nice if a medical professional actually showed some empathy for the reasons I might feel stressed.

My family’s intense experience with the dysfunction of the medical-insurance complex is not unusual, I know. I also know that I risk letting my anger and frustration impact my own health. Stress itself can be unhealthy, but my dissatisfaction with this new provider shouldn’t keep me from getting regular check-ups. Once again, every actual person I talk to about my current situation agrees that the system is broken. But none of us seem to have the ability to fix it.

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.

Conclusion

Much of what I’ve written over the last six-and-a-half months during Sami’s journey with glioblastoma has mostly served to help me process our experiences - writing, for me, is therapeutic. But I’ve come to learn that my blog posts have been helpful for others, as well - I have found the feedback and support from friends and strangers alike to be incredibly helpful. And so I write this blog post for both purposes - for myself and for our family and friends (virtual and real-life).

As it has throughout this process, time has behaved oddly over the 18 days since I posted Where We Are on this Map. While we were still discussing treatment options, Sami was leaning towards trying one round of a new chemotherapy drug (Lomustine) with the hope that it would slow (or even stop, for a time) the growth of the multiple lesions on her brain. On Sunday, July 30, my parents and my sister Meri drove from Sonora to join us for lunch. We had a great visit on the deck - it was a beautiful day, and a delicious lunch. After they left that afternoon, I headed to the grocery store to do our weekly shopping; Emma stayed with Sami.

I arrived home to find a fire truck in one driveway and an ambulance in the other. While I’d been shopping, Sami had suffered another seizure. We’re not entirely sure what happened, but she fell and hit her head - she eventually required seven staples to close the wound. And she got to take another ambulance ride - this time to Sutter Roseville.

After the first ER doctor examined her, and we explained more of Sami’s medical history, someone I perceived to be a more senior doctor came into the room. He told us based on Sami’s diagnosis, and on what had happened that evening, that we should probably consider hospice care - the second time a doctor in the Sutter Roseville ER had suggested it. Understandably, we were all upset, worried, and anxious - but unlike when it had been suggested 2 months earlier (before Sami’s stay at UCSF), we all (Sami, Emma, and me) felt like it was time. Sami said, “I just want to be done.” Later that evening, we asked the doctor to enter orders for Sutter Hospice, and we completed Sami’s first “Physician Orders for Life-Sustaining Treatment” (or POLST), indicating that Sami did not wish to have CPR or anything other than comfort care if we found ourselves calling for an ambulance again.

Looking back at that decision (which was just a mind-blowing two weeks ago), I feel like having some clarity about being done with treatment helped Sami’s frame of mind. On the morning of July 31, I called her UCSF nurse practitioner to let her know we would not be pursuing further treatment. The NP told me that she didn’t like the language around “fighting cancer,” especially when it applies to glioblastoma. “Sami’s not giving up ‘the fight,’” she told me, “nobody wins when it comes to this particular cancer.” Sami began to be willing to talk about what she wanted our daughters to know and to remember about her. We talked about her legacy, and about how she wanted us to celebrate her life. In many ways, I’m grateful for the conversations we had in the few days between entering hospice and the eventual intensification of her symptoms. They were terribly difficult, but terribly important.

Sami’s hospice care didn’t get off to a great start, unfortunately. Looking back, it felt like we had to convince yet another care team that we knew what Sami was facing, and that we had a good sense of how she was feeling and how quickly her condition was changing. With the help of a wonderful hospice nurse, we were finally able to get daily visits from Sami’s care team.

We celebrated our 33rd anniversary on August 4. Our friends Eric and Courtney, who operate Restaurant Josephine here in Auburn, treated us to a takeout dinner. Our dinner on the deck turned out to be the last time Sami was able to get out of bed. And that evening, I made the decision to ask our oldest daughter, Lara, to come home sooner than she had planned. Lara and her partner Micah arrived home the next evening.

After our anniversary, Sami’s decline accelerated. After Saturday evening, we could no longer get her out of bed. As the weekend progressed, she had difficulty talking, and told us her vision was becoming blurry. On August 9, our niece Hanna and her husband Wyatt drove to Auburn with their kids and fixed us lunch. Sami got to hold our 5-week-old great nephew Boone. It was an amazing day. By August 10, Sami slept for most of the day. The next day, she could no longer respond when we asked her questions.

But she could still hear us. Sami’s sister Suzi flew in from Pittsburg on August 10. My sister and brother-in-law joined us on August 11. We all sat in our bedroom off and on over the next day or so and shared memories and laughs. And Sami definitely knew we were there.

The evening of August 11 was rough. Sami was obviously progressing towards the end; we stayed with her a good part of the night. On the morning of August 12 (Emma’s 20th birthday) Sami had a few moments where the fog lifted. And during one of these phases, Sami reached out and hugged me. For the last time.

That evening, we decided we’d sit with Sami on shifts - I took the 12am-1am shift. At 11pm, my sister awakened me and said Sami was noticeably worse - she was having difficulty breathing and was calling out. We sat with her, talking to her, holding her hands, and stroking her brow. Finally, just before 1am, she began to relax. She passed just after the top of the hour. At 1:30, a hospice nurse pronounced her dead. We sat with each other well into the morning hours, reminiscing about Sami and our lives together - our version of a wake, I suppose. Sami wanted to donate her brain for the study of glioblastoma. I talked to UCSF, and the NP suggested donating her body. Two men arrived from San Francisco at 4:30am.

So much for chronology. One of the things that struck me early Sunday morning was the relationship between biological death and spiritual life. The process of dying from glioblastoma was agonizing to watch; I can’t imagine what it felt like to Sami. When it was over, I felt like I needed to be present for the practical work of caring for someone who’s died. I watched the UCSF representatives prepare her body, place it in the vehicle, and drive down Joeger. I cried when the taillights disappeared down the road. But I had to watch.

I’ve also realized that every family’s path is different - that it’s unfair to judge another family’s decisions. The NP told me that some patients want to continue seeking treatment until the very end, while others may feel that quality of life and time with family are the top priorities. For us, being at home at the end felt like the right thing to do. That said, there’s no way I could have cared for Sami at home without the help of my family, especially Emma and Lara. I found that I wanted to be fully present for everything that Sami went through. To do (with the girls and with family) the things that we needed to do in order for Sami to spend her final days at home. To watch her leave (physically and spiritually). But everyone’s path is different. There can be no right or wrong in navigating these journeys.

In many ways, I have been grieving since an ER doctor told Sami that a CT scan revealed “some sort of mass” on her brain on the evening of January 27. But I’ve also been holding that grief at bay so I could be a husband, a father, and a caregiver. This week, as the reality of Sami’s passing settles on me, I’m finding that little things bring great sadness - seeing her unused toothbrush next to mine, or opening the contacts on my phone and seeing her picture at the top of my favorites. I have a feeling that Sunday morning, when I wake up with everyone gone, will be rough.

This next bit may sound strange to some. In the early 2000’s, when my grandmother passed away, I saw a snowy egret on my way home from her house. I immediately thought of her - egrets are graceful and stately in a way that Grandmom was. Last Sunday, I went for a walk at home, and a red tail hawk circled over me for several minutes. I can’t explain it rationally, but I felt like Sami was checking in. Red tail hawks, to me, are beautiful, graceful, and fierce when they need to be - much like Sami. I know I’ll think of her every time I see a red tail hawk for the rest of my life.

Finally, I want to say a few words about community. Our actual community - the Sierra Foothills - has been amazing. Our freezer is full of food, our barn is full of feed, our woodshed is full of this winter’s firewood. My friends built fence for my sheep two weeks ago while I tended to Sami. We are incredibly blessed. But our virtual community is equally amazing. We’ve received gifts of food and drink from people I’ve never met in person. I’ve received the most amazing messages on Facebook, Twitter, and Instagram. All I can say is thank you. Even on the hardest of days, you hold us up. Thank you.

To that end, we are planning a Celebration of Life for Sami on December 23, 2023, when both Lara and Emma can be home. It will be at the Gold Country Fairgrounds, where Sami served as a board member. Stay tuned for details, but we hope you’ll join us on that day.

And Sami wanted to establish a scholarship for Placer High School Future Farmers of America students. In lieu of flowers, we would invite you to contribute! Checks can be made out to Placer High FFA Boosters, 275 Orange Street, Auburn, CA 95603 (Attn: Sami Macon Memorial Scholarship).

Home... for Good

At the end of May, we took Sami to the emergency room in Roseville - our third trip to the ER in four days as Sami wrapped up her first maintenance course of chemotherapy. The following morning, Sami was transferred to UCSF - she was in San Francisco for just over three weeks (the better part of June - at UCSF for treatment through June 11; at Saint Francis Memorial for rehab until June 20). While I made several runs home during that stretch - for Sami’s chemo medicines, for a work meeting, and for my own sanity - I mostly stayed in San Francisco, too. One evening, over dinner (from the Trader Joe’s around the corner from Saint Francis Memorial, a welcome break from cafeteria food), Sami and I talked about what we were most looking forward to doing when we returned home. And we talked about Sami’s wishes for being home from this point forward.

As big cities go, I actually kind of like San Francisco. The combination of hilltop landmarks and a street system laid out on a predictable grid (for the most part) helps a hayseed like me navigate. I find that I need to see the horizon to know where I am; that’s why I love open country. But staying in The City (as we Northern Californians refer to San Francisco) wore thin for all of us. I found myself wanting to wake up in the morning to the sound of birdsong and the hungry mules in the barn, rather than honking horns and the hum of the hospital. When I woke up in the middle of the night (which is a regular occurrence in my mid 50s!) I wanted to hear the great horned owl that roosts in the gray pine near our bedroom, or the coyotes singing (hopefully not from the back pasture), rather than sirens and squealing tires. Sami was looking forward to these things too - and to enjoying the sunshine from our back deck, and being in our vegetable garden.

We had to work on some logistics when we got home for Sami to be able to do these things. When we left home in late May, the swelling in Sami’s brain meant she was unable to walk. Thanks to the treatment she received at UCSF, and the occupational and physical therapy she had at Saint Francis, she made progress towards walking again, but her mobility still requires a walker and a wheelchair.

In talking about home one evening while we were at Saint Francis, I asked Sami a difficult question, one that I’d been avoiding. I asked her if her symptoms worsened again, if she wanted to come back to the hospital. We’d danced around this question a bit when we decided to go to UCSF in late May - all of us know what glioblastoma means with regards to a long-term prognosis. The deciding factor in late May was that the UCSF team told us that they weren’t ready to say they couldn’t help Sami feel better again. While Sami’s progress has felt exceedingly slow, she has started to feel better, thankfully - but the right-side weakness and brain fog persist. As I write this, two-and-a-half weeks after returning home, someone needs to be with Sami all of the time.

Sami told me that evening that if things get worse again, she wants to stay at home, with the help of home-based healthcare, and ultimately, with hospice care. These conversations are exceedingly difficult, and exceedingly important. Sami and I have both signed advance directives that state, “I do not wish to artificially prolong the process of my dying if continued health care will not improve my prognosis for recovery or otherwise enable me to live a productive and/or enjoyable life.”

Part of our conversation that evening revolved around the last part of this sentence - what is a “productive and/or enjoyable life?” Each of us probably has a different definition; for Sami, she said she missed working. I would to - we’ve both been fortunate to get to do work that we are passionate about, work that fulfills us. I missed working while we were in San Francisco; I can’t imagine what it would feel like to know I wouldn’t be able to work again.

In another section of our advanced directives, Sami and I give each other the responsibility to make decisions about these matters in the event we ourselves are incapacitated. We talked about what this meant when we worked with our attorney to draft the language many years ago; reading this language now is more sobering. How will we know? What do we mean by “incapacitated”? Incapacitation isn’t an on-off switch - now that I’m faced with this in reality, it seems like an awesome responsibility. How will I know if taking Sami back to the hospital will “artificially prolong” her life without any prospect for productivity or enjoyment? What exactly do we mean by “quality of life?” 

Throughout this experience, I’ve been reminded of one of my favorite pieces of fiction by Wendell Berry, a story titled Fidelity. I won’t try to summarize it here, but it is perhaps the best thing I’ve ever read about the conflict between our medical system and our sense of humanity and community. I encourage you to read it. As a livestock producer, I suppose, I’ve always thought about what death means - biologically, emotionally, and spiritually. To paraphrase my friend and fellow sheep rancher Al Medvitz, death is not the opposite of life. The process of dying, however, can be frightening and incredibly difficult. As I think about what Sami and I are really trying to express in our advance directives, it might be that we both, to the extent possible, want the final steps in this process to happen at home, with our loved ones around us. As Berry’s story suggests, the entire insurance-medical complex is arrayed against us. But I feel like we are home for good.