Last Friday one of our home respiratory therapists reported that Brooke had diminished breath sounds on the left side of his lungs; this followed a particularly rough night—lots of secretions, lots of suctioning, difficulty breathing, and during the night he went back on the ventilator—for the first time in at least five months. So off we went to the University Hospital for a chest x-ray and then down to the spinal cord clinic to see the doctor. The x-ray seemed to show a small pneumonia, and then the issue was whether to try to treat it at home or to be admitted as an inpatient.
The back-and-forth nature of the way we made the decision about whether to go to the hospital is instructive, especially about the roles of autonomy, paternalism, and population-based information in modern medicine. As the first doctor framed it, speaking softly, it’s your choice: either go home or be in the hospital, and he explained something about what was involved either way: there are pros and cons to each, and it’s possible to run the antibiotics at home but of course more support is available at the hospital. The second doctor, speaking far more loudly and observing that Brooke didn’t look very well, warned almost coercively about the horrifying risks of not being in the hospital: you could have a plug. You could have a clot. Your blood pressure could drop; you could die. The third person, a nurse, said the thing that made the biggest difference: quads go down faster than other people.
So, after considerable delays while a bed in an ICU was being located, Brooke spent a first night in the Neuro Critical Care Unit, and then the next day was transferred back to familiar territory—the IMCU, the intermediate care unit Brooke was in the last time he was hospitalized. We’re seeing some familiar faces among the nurses and respiratory therapists, but also remembering the rather traumatic time he had the last time he was here, in late November or December, with a quite serious pneumonia.
So what’s the diagnosis this time? Pneumonia again? Or could it be that the diaphragmatic pacer isn’t working right, and that’s why there are inactive areas in the lower left lobe of the lungs? It is astonishing to transition from what we realize is the comparative quiet of home to a high-tech hospital: in his room there are multiple sources of noise, from the loud and constant whirr of the compressor for the low-air-loss mattress on the bed to the sharp, intermittent beeps of the infusion pumps when one or another of the three antibiotics that are hanging runs out. It’s also astonishing to remember how many people are involved in his care at the hospital, and while our home staff of a dozen seems like a lot, it hardly compares with inpatient medicine. But more than anything it’s the sense of being in an institution again, with its protocols, its procedures, its received ways of doing things. Brooke keeps saying, this doesn’t seem quite real. Sometimes he says that when his degree of alertness is fluctuating with oxygen levels, and sometimes he says it when he’s completely rational and observing every little thing: still, it doesn’t seem quite real.
It’s not an irrelevant observation. Ongoing institutional life (on Medicaid) is the lot of most people with an injury like Brooke’s; most families don’t begin to have the resources, financial or emotional, to provide 24/7 skilled care at home. Brooke is talking now about the relative freedom of home, even if it is of course far more limited than his earlier life at home, and he is saying that he absolutely would not want to die in a hospital. It’s too noisy, he says, I’d want to die in a quieter place. It’s too impersonal, he adds, thinking about the professional demeanor so many caregivers adopt—though not all. Are you thinking about dying? asks the extraordinarily sensitive nurse, alert to any symptom that might suggest trouble is brewing, but Brooke says no, he was just thinking about the difference between hospital and home, the choice we were making just two days about whether to try to face this pneumonia in one place or the other, and the way one of those clinicians had said you could die, something that’s not often said aloud in hospitals. When it is said in this environment, Brooke acknowledges, it hits you like a bombshell.
Fortunately, talk of dying doesn’t seem relevant now. Brooke was pretty sick yesterday, but today he’s alert again and comfortable, enjoying visitors, and listening to The Iliad on books on tape, preparing for the course he’ll teach this spring. But he’s tired of lying in bed, and tired of not being able to keep to his own schedule. One thing that is so terrifying about being in the hospital again, Brooke says, is the way it induces passivity. Once you’re here, it’s easy to let the institution take you over and make all your choices for you; in fact, it’s almost impossible to resist this. One of the best things about being at home is that although your movements and general life are severely constricted, you at least have a range of choices and abilities to carry them out, like getting out of bed, moving around in the wheelchair, getting in the van, going places, and so on and so forth. Having a limited series of choices is by no means ideal, to say the least, but at least you’re your own person. In the hospital everything is designed in ways that have the no doubt unintended effect of wearing you down, not so far at the moment as what’s been called ICU psychosis, but nevertheless to paralyze you in additional ways, mentally as well as physically. This is partly due to the way a huge institution like a hospital actually works; it works very slowly, it is beset with regulations and restrictions, and nobody in it seems willing to challenge the system very much. This is actually quite a good hospital with many wonderful people, and much has been made of the fact that it’s currently ranked first in the nation. But it’s still an enormous institution, and I’m caught so it seems in the bowels of it. In part, working on this blog is almost the only way I have of asserting my autonomy here; if it weren’t for this I’d be lying here just watching the television, even more completely passive and unable to do anything at all.
Brooke says he’s already planning his escape from the hospital, hopefully tomorrow or the next day. He'd do the rest of the antibiotics at home. This means we can go back to the more usual forms of paralysis that are everyday at home, not just the physical quadriplegia but also paralysis in the face of political and social issues like climate change, energy policy, immigration issues, global health and injustice, and everything else that can keep you awake at night but that it seems almost impossible to reform.