The Fundamental Law of Prognosis: Them that shows up gets better.
I have this one patient I saw that.
[Nonmedical people: I am not, in fact, clairvoyant. It’s just that “I have this one patient…” begins a certain kind of story; a story of very bad things happening. Such stories cause reflexive wincing in medical people. I’m just messing with them. No need to clear your browser history. Keep reading.]
This is not one of those stories, medical people. Promise.
I have this one patient who I will call Sylvia and I am going to alter all kinds of other things about her except the point of this story.
Sylvia is sick as hell. Sylvia has bipolar disorder (or, archaic but more accurate, manic-depressive illness). She was reasonably stable until she had to stop this one medicine. After which everything went to hell. Severe depression, psychosis, catatonia, the whole nine. Hospitalized several times per year, constant medication changes, none of which worked. After one of those med changes, she had a protracted mania and did a lot of stuff that really effed up her life. She came under the care of a really good doc, who got the mania under control and sent her to me. The scene is set.
I am about to rant. I will mark this out with the following symbol: ******.
It is almost impossible to understand how bad psychiatric diseases are unless you’ve been through it. One thing that makes that even harder is that people use words with two meanings, but think they only have one. For most people, “depression” is the feeling of getting a crappy performance review at work; or how you feel the first month or two after a breakup.
And then there’s depression, or melancholia as Hippocrates called it. Which is like being attacked by a horde of dementors except the dementors don’t even have the basic decency to exist and attack you because you just feel that way for no damn reason at all and there ain’t no patronuses to be found.
Care to add a little more torture? Well, manic-depressive illness can do that for ya! Try catatonia! You can’t even talk, move, or feed yourself. Or mania! Imagine having boatloads of energy, not having to sleep for days on end, doing a thousand things, and feeling ten feet tall and bulletproof. Good deal right? Until you crash back into that depression thing, and realize all that time you were feeling ten feet tall and bulletproof you did a lot of really stupid stuff that you would never, ever do; and as a bonus you spent yourself broke on weird online scams and lottery tickets.
So when people who haven’t been through it talk about “being a little bipolar” it’s like saying “I’m having a malignant melanoma moment now,” or perhaps “I’m feeling a tad stroke-y.”
Then there’s the “everybody gets depressed” line. People need to toughen up and get through it, right? Why is everybody trying to medicate away normal feelings with “happy pills?” Well, if you’re in the middle of a major depressive episode, you’re probably longing to feel as good as you did on a normal bad day. And happy pills, my ass. I have yet to see anybody melting down their Prozac (little R-in-circle thing) and shooting up in the doctor’s office for that SSRI rush. So there’s that.
I think we need to find some new words for these things. Something so polysyllabic in a language so long-dead that nobody will mistake it for any normal experience. “Malignant Melancholic Syndrome,” maybe.
The points of that rant were:
- Psychiatric diseases are entirely abnormal.
- Lots of psychiatric diseases are really, really bad.
- The people who have them often get treated like they’re punks who can’t get over a bad day or two by people who have no clue whatsoever how badly they are suffering.
- The people who have them who try to get treated for it catch even more crap, as if they are in cahoots with a conspiracy to drug away all normal emotion.
Sylvia’s prognosis, right on its face, sucks. She’s got every risk factor for a chronic, severe, treatment refractory course; and, let’s just say it out loud, death.
I do my thing. I dig through a mountain of records and plug stuff into my handy compulsive freak’s timeline making software. I find out one good thing – there’s one medicine that clearly prevents her manias. Then I find out one other thing. Sylvia’s been on close to a dozen antidepressants, and she’s only had a single adequate trial of one antidepressant in 5 long years.
How can this be, you ask?
All of the medicines take bloody forever to work. With antidepressants, it takes four to six weeks to be sure it’s a failure; and that assumes you’re at the right dose. Getting there can take weeks, too. The side effects, though – the side effects you get right up front. Antidepressants are a lot better now, but still you’re going to have all the bad effects while waiting around for any benefit. About a third of the time, that benefit never shows up, and you’re a couple of months down the road and back at square 1.
Now, when you go into the hospital and you’re sick as hell, people try to help. They do that by changing stuff. Even if that stuff had been started less than a month ago. Even if the doses weren’t maxed out. Hell, the insurance companies practically force you to do it.
Reviewer: “Have you made any med changes in the last ten minutes?”
Doc: “Ummmm… No. We just started it and it takes four to six weeks to work. I guess I could use some bulls@!# line about how I’m ‘considering adding something’ to make you happy…? “
Reviewer: “Nah. That won’t be necessary. We’ll come up with some other reason to deny care anyway. I mean, he doesn’t have a knife to his throat right this minute, and the policy is written so I can deny if he’s not ‘acutely suicidal,’ which itself is completely impossible to objectively define. So, you don’t have a leg to stand on. Have a good day.”
This constant pressure from patients, payors, and your own perfectionism is one of the reasons (prepare for terrible revelation) that heartless algorithms can sometimes outperform doctors. While the doctors are busily individualizing treatment; and the insurers are looking with a baleful eye and asking “why aren’t you doing something?”, the heartless algorithm says, “Screw the side effects and inadequate response! Sucks to your ass-mar! You haven’t had an adequate trial of this medicine so suck it up and stick with it.”
[I will personally award 3 cool points to the first person who gets the “sucks to your ass-mar” reference.]
Sylvia now has one good prognostic factor. Instead of having severe, treatment refractory manic-depressive illness; she now merely has severe untreated manic depressive illness.
If that’s good news, you’re pretty starved for good news.
There is one prognostic factor that you can’t find in any epidemiologic study, though. One I don’t know she had for several weeks. One I have started to think may be the only one that really matters.
You see, there are patients who don’t show up. There are patients who are pretty good about showing up. There are patients who show up. Then, there is Sylvia.
Sylvia shows the f#&** up. Sylvia shows up the way Cal Ripken, Jr. played baseball. Sylvia shows up like Georgia O’Keefe painted flowers. Sylvia shows up like Bruce Banner gets road rage. She is the tenth-level black belt grandmaster of showing up.
She showed up for weeks when we tried the first antidepressant, ever so slowly and carefully to watch for that mania. Then she developed an allergy. Back to square one. She still showed up.
Partial responses to several medicines. Months of instability, grinding improvement but constant setbacks. Now, she is officially treatment refractory. So much for that prognostic factor. Yet still, she was in my waiting room, no less than five minutes early, every @&&*ing time. I check her blood levels, and they are always exactly the same. She barely misses a single dose.
Time to get fancy. Combinations, high dose trials. Weeks and months more. Then, one month, one entire month, the depression goes away. During which time I am sitting on my hands, waiting for the disease to snatch this hard-won victory back, and for the mania to happen. It never does.
There is a lot more. The year or two to get the first job, which she still has, because even though she had minor episodes, still she kept showing up.
A couple of years of trying to find a way into life when everybody her age had advanced in their jobs, gotten married, and started having children. One day a week, every week, every one of those years, she was in my waiting room. On average, ten minutes early.
I have been looking after her for close to a decade now. There was the one relapse that scared the hell out of me, but with the help of a really good inpatient doc, she actually came through better than ever.
Now she’s employed, in a solid relationship with a guy who is good for her, and about to be a stepmother. You wouldn’t know her from anybody else. Me, I have the singular honor of knowing she is a real life no – sh#t superhero. She spat in the devil’s eye, and in her quiet, pleasant, implacable, unrelentingly badass way kicked his ass right up the block.
She is not the only one. There was the young guy whose symptoms were so complicated there wasn’t even a category for him in DSM-IV. He told me the story about how he had to bury his face in a pillow at night so his wailing would not bother the neighbors. Never missed a single appointment. He didn’t get well. I’m not that good. I don’t think any of us are that good, yet. He did get better, though.
The one who was in a wheelchair in the day hospital? Showed up every day for months, and walked out on his own hind legs.
If I had what Sylvia has, I might well be dead. Many people are. I have never correctly finished a single course of antibiotics in my life, and I’m a bloody doctor. I know better, and my wife still had to drag my obstinate ass in to the doctor when I was coughing my guts out and had a fever of 104. It was a pneumonia, of course. I figured it would pass.
I suck as a patient. I’m a better doctor. I’m not the best in the world, or for that matter the best in the building. I do show up, though.
Careful readers (or compulsive freaks like your esteemed author) might have noticed that algorithm thing had more dropouts than usual care. Maybe I’m romanticizing things, but I suspect there’s some other part of doctoring that matters besides sticking to the protocol. Algorithms don’t listen. They don’t give a damn. They don’t cheer and high five when you get that first date or that first job after you’ve been on the DL so long you don’t know if you can ever get off the bench again.
I think the people who show up need somebody to show up for. So I show up, for them. Also, of course, it’s the only way to get better. I want to get better. I want to get better for all of them. I’m no superhero, but I know a few, and I would hate to let one of them down.