In lieu of an abstract, here is a brief excerpt of the content:Difficult, Difficult, Lemon, DifficultMaggie TaylorI like to joke that my husband is a lemon—he suffers from manufacturing defects that prevent his body from functioning as intended. Illnesses other 40-somethings recover from quickly are things that land him in the hospital for weeks on end. So, it was no surprise last year that an epileptic seizure led to aspiration pneumonia, admission to the lCU, intubation, multisystem organ fail…
Read moreIn lieu of an abstract, here is a brief excerpt of the content:Difficult, Difficult, Lemon, DifficultMaggie TaylorI like to joke that my husband is a lemon—he suffers from manufacturing defects that prevent his body from functioning as intended. Illnesses other 40-somethings recover from quickly are things that land him in the hospital for weeks on end. So, it was no surprise last year that an epileptic seizure led to aspiration pneumonia, admission to the lCU, intubation, multisystem organ failure, and a Helivac ride to a regional hospital for a higher level of care. I was told that his odds of survival were about fifty-fifty. At the time, I was training as a clinical ethics fellow, still relatively inexperienced but savvy enough to guess the true likelihood was probably lower. Doctors don’t usually like telling brutal truths to families.But the moral complexities of his treatment did not arise when he was on the verge of death. They came days later when he was getting better. He’d survived a major surgery, come off pressors, recovered from an acute kidney injury, did well on spontaneous breathing trials (SBTs), and tolerated sedation weaning. Ironically, this was the hardest part of the hospitalization for me. Some people tolerate endotracheal tubes. Others don’t. My husband is in the latter group. He’d even self-extubated on a prior hospitalization. This time, he was too weak to lift his arms. Instead of pulling at the tube taped to his face, he stared up at me with wild eyes that said I don’t know what’s happening but I hate it; make it stop.As his discomfort became more apparent, I pressed the intensivist, Dr. Roja1, about extubating. “He’s alert, following commands, and hit the benchmarks on his vent settings.”Dr. Roja responded by saying she didn’t feel my husband was ready. They would continue conducting SBTs and reevaluate the next day.She said the same thing the next day.And the next day. Then she suggested a trach evaluation. I rejected Dr. Roja’s proposed compromise. Forcefully.It wasn’t just that I had trouble seeing my husband in this state of confusion and discomfort, although I did. I also knew continued vent dependence was something he would not accept. Over the course of our relationship, we’ve talked a lot about what interventions my husband would tolerate under various circumstances. This makes sense, given my profession and his health problems. He doesn’t want to live no matter the costs, but only if he can do so without being a burden on those he loves or dependent on machinery long-term—which, for him, means a few weeks.This is what I told Dr. Roja. At least, this is what I think I told her. It’s doubtful I stated my reasoning [End Page 28] half that clearly, given my emotional, physical, and cognitive state. It had been two weeks since my husband was admitted, and I was depleted. I was living in a hotel across from the hospital, wasn’t eating, and had fallen back into the vice of smoking cigarettes. Exhaustion and stress had made me combative: I had to defend my husband against this doctor who refused to do the right thing and take the tube out.In what felt like a last-ditch effort to get me off her back, Dr. Roja suggested an ethics consult. It was embarrassing that the intensivist was the one to suggest ethics involvement. Consumed as I was by my job as my husband’s advocate, I had forgotten my actual job.The team was able to put together a family meeting within hours. Beforehand, the ethicist came to my husband’s room and introduced herself to me and my mother.“I work in ethics too, as a clinical ethics fellow,” I said.She responded: “Oh.”That was all. Not even a word, but a sound. I don’t know what response I wanted, but that wasn’t it. This made me suspicious of the process.My mother and I joined the ethicist, Dr. Roja, and a palliative care physician in the family room. Dr. Roja led with a summary of my husband’s clinical condition...
