Ever since the FMEC Conference, I've felt a heavy weight on my head. I can't think about health care without feeling overwhelmed with the hugeness of trying to hold all the social determinants of health piled in our arms, wondering how to begin building a clinical and community health foundation with our hands already full and while balancing on the tiny point of band-aid high-tech medicine that is currently, precariously, keeping most of us alive for 70 years or so.
Tonight, though, I read my first clinical blog from September, and was reminded of another patient. Jack was a young man, under 40, and essentially a life-long alcoholic. I met him in the ICU at a point where he had almost no potassium or phosphorus in his body, literally too weak to have Delirium Tremens. (He had been so ill, he had actually pulled over and called the police himself.) Most of that month in my late 2nd year of residency, I presided over a body, but after the chemicals were realigned, the DT's over and the pancreatitis treated, there was a human being underneath. In the last week of the rotation, family and friends came to discuss their role in his treatment, what kind of rehab he was willing to do, and how he understood his addiction. He left the hospital the same day I did, but became my continuity patient.
Over the next year, he rarely showed up at the clinic, but called regularly with updates and to get refills. Jack unfortunately did not stop drinking, and though he did cut down, he was admitted twice more. He challenged me by requesting outpatient detox that I didn't feel comfortable with. I didn't trust the alcoholic in him, but I did trust his honesty. I also didn't trust myself with a treatment that has such potential to go wrong. I researched, thought, discussed, and finally found some options to offer him. Still, I had to explain that I could not fix the main barriers: that he was completely broke, had run out of severance and unemployment insurance, and had exhausted his wife's health savings account funds. I told him how frustrated I was that the very people with the most potential to return to society and contribute can't get out of the hole that both they themselves and the health care system had been digging for 25 years.
Probably less than a month after that conversation, I was working a shift in the ER when a colleague cornered me to tell me Jack was being admitted to the inpatient service. He had asked for me, and the resident requested that I stop in to say hello. It only took a glimpse into the room to see that the prognosis had changed. Jack lay there, bright yellow, practicing his early Kussmaul heaving breaths, his abdomen swollen with ascites. He had stopped drinking: really, literally no beer for 3 weeks. There was no money and he had been feeling so tired. I was angry this time just with nature. Three months before, at his latest discharge, there had been no sign of liver failure. I had reassured him that with alcohol abstinence he still had a good chance. It wasn't supposed to happen this fast.
Jack survived the admission and acquired a GI specialist that he still couldn't afford to see. Disability was applied for and some meds were found on emergency Medicaid. He came back 2 weeks after that admission for another paracentesis but overall looked better. I tried to give him and his wife hope and even contacted the state's liver transplant hospitals to check on criteria. He was now almost 2 months into the 6 month sobriety needed to be put on the list. I worked with one of the interns to transfer his care to her after my upcoming graduation.
The week before that graduation, I found a voicemail from his wife. The Friday before, he had begun to vomit blood and she had taken him to a closer hospital. The doctors had done all they could but the variceal floodgates were open too wide. He had died. Her shaky voice thanked me for my help and care; and the lonely beep ended the news. I tried to contact her to learn the funeral arrangements, but never heard from her again.
The thing I most wanted to tell her, the thing that's hard to get across on a 1-minute message, wasn't that I was terribly sorry for Jack. His suffering probably would have been worse had he lived. I was very sorry for her loss, for hope and longing and long-suffering just cut off. But the main thing was to thank her, to thank him. It might have seemed that I never gave up on Jack, but as a doctor, I just treat people where they are. There's no giving up; there's just a journey. The other direction, however, is crucial. Patients often give up on their doctors, many times with good reason. Jack had spent the last year of his life not giving up on me. Trusting me even when I didn't understand, when I wasn't equipped to make expedited decisions on his treatment, even when I couldn't "do" or "fix" anything. I wanted to tell his wife that patients like Jack are the ones who give young doctors hope in themselves.
That's a long, long story to work out some of my feelings concerning our health system. It is desperately in need of a transplant, but in the meantime we'll have to treat the symptoms, abstain from the toxic habits we're used to, and have a lot of patience for the journey. But maybe the American public won't give up on us while we work on all this and help everyone learn their role in the healing. The current health system will eventually have to die. It might take a long time and it won't be pretty. But we'll still be here to renew it if we just don't give up on each other.