There's been so much talk about health care reform lately, and I'll admit that, while I have some ideas, I don't know what the big-picture answer is. I'm not completely sure that anyone else does either.
That said, for about a decade, I was a doctors' office and hospital frequent flier. Not because I was sick, but because my mom had a myriad of interrelated health issues during that time. There were weeks we'd literally do something to celebrate that she didn't have an appointment and months when hospital stays lasted so long that I could recite half the nurses' work schedules. In the midst of it all, my dad had a heart valve go bad, developed sepsis, and nearly died, which led to about a year of a similar schedule for him.
The thing is that I can count on one hand the number of doctors from that period of time whom I truly remember, and they all had one thing in common: They recognized that humanity is, or should be, an integral part of the system. They went beyond procedure and treated my parents — and me — like people, not patients. Even more important, the ones who did that weren't always the most empathetic or the ones with the best bedside manner. As a matter of fact, they were often blunt, imperfect, and could even be uncomfortable. But they showed up when it mattered.
When my mom began having kidney problems, her primary care physician referred her to a local nephrologist. Initially, I wasn't sold on this guy. He could be brusque and always seemed like he was in a hurry. He literally owned one of the dialysis clinics in town, which made me think he was pushing that as the only option. I also saw him interact pleasantly with a male patient one time, and that, combined with some cultural issues, led me to think that maybe he saw women as unimportant. I'll be the first to admit that I wasn't being fair, but it was a stressful time, and I wanted what was best for my mom. I begged her to find another doctor, preferably a female.
Long story short, she kind of ended up with stuck with him, and she saw him every month and then every week for six or seven years. He really liked her, and while she was stubborn and didn't always listen to him, she liked him enough. I just kept my mouth shut, still convinced she could do better.
I had no idea that he'd become my greatest ally during one of the most difficult few weeks of my life.
My mom was in the hospital for a little over three weeks before she died. Her schedule at the dialysis center the week before was messed up due to transportation issues, so she ended up in the hospital for what was supposed to be a fairly routine treatment to get caught up. That night, they called me from the ICU and told me something had happened during dialysis that sort of put her in a stupor. She stayed like that for two or three days until she finally came out of it and seemed okay, but just as soon as she did, the draconian lawmakers in my county decided to bring back COVID rules even though we were almost two years past the start of the pandemic and no other county in the entire metro area was doing the same.
For the next week or so, my dad and I couldn't go visit. We could barely communicate with her or her nurses. A physician assistant from the ICU would call us daily with updates — she wasn't improving but she wasn't getting worse. Even so, they began pushing hospice on us without really explaining why. The would also call and tell us she's refusing treatment or that she told them she did not want to be resuscitated. None of this sounded like my mother, and, as it turns out, it wasn't. After finally talking to her, I realized she was manipulated and misunderstood. One of the women who worked in the ICU was borderline threatening me. Another doctor accused me of lying. I got the idea that they were done with her and ready to clear the bed for the next one, but I still couldn't see her to even make heads or tails out of what was actually going on. I wasn't just going to take their word for it.
One day, they decided to call us in for a face-to-face meeting about it. (Funny, how they could break the COVID rules when they wanted.)
I panicked. In a system supposedly designed to care for people, I felt like no one was on my side. Not sure whom else to turn to, I picked up the phone and called the nephrologist. His office told me he'd taken his kids to Disney World and wouldn't be back until Monday. Six minutes later, my phone rang. It was him. He was as confused as I was. He said when he'd last seen her, he wouldn't have thought she was dying. He said they're basically pushing you or her to consent to end treatment. Do not do it. He said I'll be the ICU doctor on duty next week, and I will make sure she consents to that herself. "I can't promise you I won't come to the same conclusion, but you go into that meeting and tell them that Dr. R said to stop with the hospice talk," he said.
That's exactly what I did. I stared out a window pretending to listen to their spiel, and when they finished, I told them what Dr. R said. They shut up quickly, almost like children who'd been caught doing something naughty.
The next week, Dr. R arrived and took over. We stopped getting daily harassing calls from the ICU staff. I also began getting daily personal calls from him. He spoke with my mom about the seriousness of her condition, which scared her, but he got her on record saying she wasn't ready to give up. The ICU staff changed its tune. He tried to help me get her moved to a better hospital per her request. He explained to me why the system combined with the recent COVID outbreak would make that hard. He called other doctors at that hospital to see if they'd take her case. He called specialists in his field all over the country asking for some ideas because he was at a loss as to why she'd taken a sudden turn. He checked in on her regularly and let me know how she was.
In the meantime, my mom kept calling and asking me why we weren't getting her moved and why nothing was changing. I tried to tell her that Dr. R and I were doing all of this, but I think it went in one ear and out the other. She was alone and terrified and just wanted to come home and see her family. She even promised she would stop doing whatever the hospital staff believed meant "refusing treatment" if that would help. That broke my heart.
By the end of the week, I felt defeated. Dr. R called me one afternoon. He didn't have any updates; he was just checking in. I told him I didn't understand why no one was doing anything. "She doesn't want to die," I told him. We'd been in so many precarious situations before, and every time, some doctor would find a treatment, a procedure, or a medication to fix it. Why couldn't they do that now?
He started to respond with something clinical and then stopped and sighed. His tone shifted. "Sometimes the mind and body are on two different journeys," he said. For the next 25 minutes, he stayed on the phone with me, talking about death from the standpoint of someone who'd witnessed a lot of it. He spoke of recently losing his father-in-law to a similar situation. He explained it to me like you might a child, but it wasn't patronizing or condescending. It was comforting. Our backgrounds and religious and spiritual beliefs couldn't have been more different, but he talked to me about death like he was my big brother or a close friend.
A few days later, my mom finally made the decision on her own to switch to palliative care. We got to spend a couple of hours with her, and during that time, Dr. R. stopped by. He hugged her and told her she wasn't his patient anymore, but he wanted to say goodbye. He cracked a few jokes, and he told me to let him know if I needed anything. After he left, I wanted to tell my mom what a godsend he'd been. I knew she'd get a kick out of it after I'd spent years telling her to find another doctor, but her mind was trying to wrap itself around the idea that her time here on Earth was done.
We can spend months and years debating and implementing new health care policy, but the truth is that without people like Dr. R, there's really no point. No matter how great the system is or how much money it saves, if there aren't people inside who are willing to slow down and realize that every human on the other side, whether it's the terrified patient or their confused daughter, deserves doctors and nurses who are willing to take responsibility and show up beyond their clinical duties when necessary, well what's the point?
Dr. R didn't save my mom. But he proved that she mattered and didn't abandon her, even in the most critical yet hopeless situation. He also listened to me when no one else in that hospital would, and he made the process something I can live with without too many regrets for the rest of my life. That in itself is what got me through those weeks and most of the ones that have followed. All of the policy, protocols, and price tags can't replace good people. They can only support them.
