(Something I wrote in October, about a patient who was mine for a few weeks on psychiatry, another example of both severe psychiatric illness and the dangers of non-portable health insurance. There's a bunch of these in the archives; I'm trying to finish them and get them posted.)
I've never seen her smile. The only expression she's ever shown me is a determined scowl, on the occasions where she's willing to talk to me at all. She has clothes in her room, but dresses only in scrub pants and a hospital shirt. Every muscle is tensed, every word dismissive and angry. The uniform only adds to my sense of speaking to a prisoner, some dissident locked away for daring to speak her mind, determined to do everything she can to resist her captors.
She's with us for what everyone who meets describes as "the worst eating disorder case I've seen in years". When she came to the hospital, she had a body mass index (weight over height squared) of 11. That's a 6-foot-plus woman weighing under 90 lbs. For reference: human "normal" runs anywhere from 19 to 24; I'm a 21.5 if you've seen me lately. When you get down to half the weight your body is supposed to be, your organs stop working. She came in by ambulance, because she'd grown too weak to move from her parents' couch. Her kidneys could no longer regulate the sodium, potassium, phosphorus, magnesium, and other ions of her blood. Her liver cells were one-by-one rupturing and spilling their enzymes into the bloodstream. Her bone marrow was no longer making white blood cells to protect her from infection. As you might imagine, she went straight to the ICU, where she stayed for a month. She had at least one cardiac arrest from malnutrition during her stay. Since she was barely conscious, they had to use "total parenteral nutrition" to keep her alive -- simple nutrients poured directly into her veins. When that finally kicked in and she woke up, she refused to eat. A semi-permanent feeding tube had to be placed through her abdominal wall. It couldn't be placed into her stomach, because she would deliberately throw up the tube feeds. The tip of the tube had to come out in her jejeunum (middle small intestine), from whence it's hard to vomit.
Eventually, with daily forced tube feeds, she got to the point of being able to move again. Everyone agreed she couldn't go home, because she very clearly stated that she was too fat, needed to go on a diet, and that this whole thing was not serious at all. (From her perspective, she'd been in cardiac arrest before, been shocked back, so what's the big deal?) Where to go next? By order of a court which declared her a danger to herself, she went to the locked, high-staff-to-patient-ratio, low-stimulation "psychiatric ICU". My unit. That was back before I even started residency. Except for a brief trial on a less-restrictive unit (didn't work well), she's been there ever since.
This is one smart lady -- high level of formal education at excellent schools, strong evidence of prior creativity when she was working. She believes, in her heart of hearts, that she is medically healthy, and in fact is getting sicker the longer she stays because we're making her fat. The result is that every day is a war. Unless she's threatened with tube feeds, she refuses to order food at all. Unless dietary enforces a menu and we require her to eat the whole tray, she will not order anything with carbs or fat in it. Unless we lock her out of her room for two hours, she will immediately purge after meals. (She still does purge, regardless. Her latest strategy was hoarding towels and milking liquid out of her feeding tube into those towels.) When she is not being semi-force-fed, she walks up and down the unit halls as fast as she can to burn off the extra calories. She refuses all medications, even vitamin supplements, except for the few we're legally permitted to force her to take. (Even those are hard -- how do you do an intramuscular injection in a woman who literally has starved away her muscle tissue?) If she can find a way, she refuses to talk to her treatment team on morning rounds. Three attending psychiatrists and a host of residents have all failed to build any connection, because ultimately, we're her jailors. We fight a daily war with her, and it's a war we can't win. Our attention is split across a ward of sixteen complicated patients. Hers is focused like a laser on a single goal: keep the weight off. In four months, putting over 3000 daily calories into her body, we gained only about ten pounds. If you or I were subjected to that same regimen without purging, we'd have gained about thirty (and that's not counting the antipsychotics, which cause your metabolism to switch to fat-building).
So what do we do? We may be nourishing her physical body, but we're not helping her underlying illness one iota. She's a young woman. We can't keep her locked up in these few thousand square feet for the next few decades. There's occasional talk of her going to Western State Hospital, our last operating public "mental institution". They can't keep her forever either. This isn't the 1950s anymore. For a while, our hope was that she could go to an inpatient eating disorders program, where she could at least be around others with her same illness, and thus maybe get some insight into her own health. Only problem -- there's none of those in Washington. They closed for lack of revenue. Our patient hasn't been able to hold a job in a long time, so she's uninsured and on public assistance. Could the state and county pay for her to go to an out-of-state program? Maybe -- if forms can be filled in triplicate, beans can be counted, budgets can be adjusted, Saturn is in conjunction with Mercury in the house of Libra, and we present someone with a shrubbery. A long line of social workers have pounded on this problem, and the latest answer is "not until 2010".
Three more months. Eight months total, maybe more, as a prisoner of the county hospital. Three more months of having her body invaded on a daily basis. Three more months of nothing to do except pace and do the same jigsaw puzzle over and over again. Three more months of watching people come in who are literally so paralyzed by mental illness that they can no longer speak, and watching those same people leave while you remain. Is it any wonder that all she can feel towards us is rage?
Ultimately, it may not matter. Whether it's three or six or twelve, whether she goes to an eating disorders program or not, someday she'll be back out in the world. Someday, she'll be free. The chances that we'll have really changed her mind are slim. Someday, this woman is going to be on her own, is going to find a quiet little corner, and go back to starving herself until her heart stops again, this time without anyone around to bring her back. Everything she could have been or done is lost because her brain got stuck on the idea that she's too fat, and we've yet to find anything we can do about it. It's one of the more sobering/saddening cases I've seen thus far.
I wrote everything above in October 2009. In late February 2010, it was determined that funding for eating disorders treatment would not be forthcoming. (In the meantime, they'd also given up on the feeding tube, having replaced it a good twenty times after it was pulled out.) She was now minimally medically stable, and transferred to the state hospital. She lasted about two weeks. In that time, she continued to starve, and messed her serum electrolytes so badly that the state hospital had to send her back -- to our institution and the locked psychiatric ER.
Ultimately, she spent something like twelve hours waiting in the locked psychiatric emergency room while attendings and county supervisors and her parents all discussed, argued, and bargained. The attending note from that day is a small novella documenting the process. The final conclusion: everything above sure as heck didn't cure her, so what would be the point of doing more of it? After those twelve hours, she went home with her family. It's been almost a month now; we haven't seen her since. I like to tell myself that's because she's alive and doing marginally OK.
Sunday, March 21, 2010
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