Monday, September 11, 2006

Erased

No, this isn't a 9/11 post. After quite a bit of thought, I've decided to declare this blog a 9/11-free zone for the day. There's a lot I could say on the subject, but very little of it's new, and the things that are personal and unique to me are things I got into trouble for saying immediately after the event. A number of people told me that I shouldn't/couldn't/didn't have the right to be feeling what I was feeling, because I hadn't been there/wasn't one of the main victims/was a traitor for not plastering American flags all over everything I own.

I really don't want to go through that again.

I believe very firmly that 9/11 traumatized everybody. One of the ways it did that was by becoming one of those omnipresent, inescapable public events to which there's only One Right Response. None of us could get away from it, and -- at least for a few weeks right after the day itself -- there was very little room for any kind of authentic, rather than culturally scripted, response.

This is coercion, plain and simple, and too much of today is going to be more of the same. So I'm opting out, thank you. I've spoken my last words on the subject.

So now that I've gotten that out of the way, can we talk about schizophrenia?

* * *

Wait, no, back up. Yesterday ended badly, so I need to remind myself that it started well. Church was a pleasure; my visit to the assisted-living facility was a delight; I even got some good publishing news. (The long-delayed third novel is scheduled for June, and The Necessary Beggar will be out in mass-market paper in March.)

But because I'd had a busy day and hadn't had time to exercise, I arrived at the hospital tired. Sometimes it doesn't matter; sometimes the energy of a shift will burn the fatigue right out of me. Sometimes, no matter how tired I am when I get there, I wind up in The Zone, where I'm moving with the flow of the department: saying the perfect things to patients, somehow showing up at exactly the right place and time to get or give needed information, successfully juggling piles of blankets and multiple cups of water while dodging ambulance gurneys and portable X-ray machines.

Last night, I wasn't in The Zone. Last night, I was doing one of my best Inspector Clouseau impersonations: knocking into people, dropping things, forgetting names. The chaplain as bumbling idiot.

The shift wasn't a complete loss, by any means. I had at least three really solid visits with patients who were very glad to talk to me and very grateful for my help, both spiritual and practical. Two of these visits involved depression and grief issues. Because I have depression myself, this is home ground. Depressed patients tend to be very comfortable with me, because they can tell I know the territory. And I'm walking proof that they aren't going to feel that way forever, that things can get better.

Score three for Clouseau.

Enter Patient X. Patient X is kind, alert, engaged, and thoughtful. Compliments me on my jewelry. Asks for prayer. When I ask what we're praying for, names the war, the victims of 9/11, and the environment, not immediate health concerns. (This always warms my heart, although I always pray for health issues too.)

A nurse arrives. I tell Patient X I'll be back later. The next time I go back, the doctor's in there, and I overhear part of what sounds like a very lucid conversation.

I return to Patient X after the medical staff has left. We start chatting. And suddenly things go seriously south. I start getting stories about shape-shifting roommates, extraterrestrial relatives, and characters from television shows undergoing top-secret medical experimentation. And then Patient X says, "But please don't tell anyone."

My heart sinks.

For a layperson, I'm pretty well educated about mental illness, and I'm intensely sympathetic to the issue. There are very few mentally ill patients who scare me or leave me at a loss. I've talked to depressed patients, suicidal patients, bipolar patients, patients with MPD and borderline personality disorder. I've had very pleasant conversations with self-aware schizophrenics who needed to vent about how hard the illness is. I once heard a hilarious and heartbreaking rant from a patient who said, "Do you have any idea what a pain in the neck it is to be hearing these voices other people can't hear and don't want to hear about?"

But I've never figured out how to talk to patients who are actively delusional, the "Saddam Hussein is burying Swiss francs in my garden and my neighbor turns into a kangaroo who implants electrodes in my skull while I’m sleeping" crowd. I don't want to shame or abandon these patients, who are usually very lonely and isolated, but I also don't want to play along and reinforce their delusions. It doesn't help that they're almost always bright, charming, personable, and clearly starved for human contact.

I want to give them human contact, but I don't know how to do that safely. So I usually stand there, try to smile, nod until I start getting scared that I'm reinforcing their delusions just by nodding, and then beat a hasty retreat, feeling wretched.

Last night, I felt wretched. Patient X had trusted me enough to share very personal stories, and had asked me not to tell other people about them. But Patient X had also come in with a medical complaint, not for psych issues. The stories were symptoms of illness, weren’t they? Did the med staff know about this? If they didn’t, did they need to? How could I know without asking? And how could I ask while honoring X’s request for confidentiality?

I finally decided to fudge the issue by telling someone about the general tone of the stories without sharing the details.

Let's back up again. I'd arrived at the hospital worried about whether I'd have to start all over with a new set of ED staff who didn't know me. Earning staff trust and getting into their long-term memories can be a very long, difficult process. So when I showed up for the new shift, I was delighted to see a number of people I knew, including Nurse Y, someone who's referred me to a lot of patients and who’s also complimented me on my work with a number of them (including, significantly, psych patients). And Nurse Y was the appropriate person to tell about Patient X.

So I approached Nurse Y. "Excuse me, but is Patient X's medical team aware that there are major psych issues?"

Nurse Y, clearly cranky, pulls up the records. "Yep, it's schizophrenia."

"That's what I thought."

"Well, you called it, good for you." Snarkily. "You know, it's not illegal to be crazy."

Me, in shock: "Of course not! Nor should it be!"

"Crazy people get sick, too."

"Of course they do! I just -- "

"And schizophrenics can reason pretty well, when you think about it." This thrown over a shoulder as Nurse Y walks away.

I stood there, feeling about half a centimeter high. Nurse Y has watched me work for almost two years. Nurse Y, in the past, has known that I'm someone who advocates for psych patients instead of shaming them. And suddenly all of that's gone? I have to start all over again after all? I was never actually in long-term memory, or the files got erased when I switched to a different evening? And even worse, I’ve violated patient confidentiality to deliver unwanted, redundant information?

It was near the end of my shift. I was upset. I went and sat in a deserted lounge for a few minutes to calm down, and then marched back into the ED and up to Nurse Y (PITA for Christ, PITA for Christ, PITA for Christ). "I want to be clear on this. I wasn't trying to stigmatize Patient X. I was trying to make sure that Patient X got appropriate help."

"Don't worry about it, we're good." This thrown back over a shoulder as Nurse Y walks away. I don't think Nurse Y has heard me.

It's now a few minutes shy of the end of my shift, but I decide to leave a little early. I walk over to the board to remove myself from the "chaplain" box, in which I always write my name and the hours I'll be working. But it's empty. Somebody's already taken me off. I've been erased.

Now feeling thoroughly wretched, I head back to my car. On the way there, I see one of the security guards, someone who's watched me work with psych patients even more often than Nurse Y has, since he's usually one of the people guarding them. I vent. The security guard listens, looks sympathetic, makes encouraging noises. "Of course you were trying to help! Y can get like that. Don't take it personally."

When I got home last night, I had e-mail from Kim about something else, and since she's an ED nurse with psych experience, I asked her about this case. Had I done the wrong thing? Should I not have mentioned the psych symptoms? She assures me that I acted appropriately, and that the medical team needed the info. That made me feel a lot better.

But I still don't know how to talk to delusional patients. Does anyone have tips?

7 comments:

  1. Cue all manner of facile stories.

    You were in a real situation. You acted as best you knew. You did the right thing. You did what you could to help someone wh needed help. What else could you do?

    As for communicating with the deluded, better minds than ours (well, mine for a certainty) have debated this for centuries and come up with n+1 answers. All I can say is that we must speak the truth as we see it in good faith at all times (when we speak at all, and that is a huge question in itself) Of course we'll make mistakes, but c'est la condition humaine.

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  2. For a time I worked a night schedule (2200 to 0800 hours). One night I had hardly gotten my coat off when I was called to the ER. There, crammed into the entrance of a room, were the day chaplain, a doctor, two nurses, and a security guard. I walked in, and the day chaplain turned to the patient, whom I couldn't see, and said, "See, your friend is here now."

    I walked through the crowd, and saw a patient I had indeed seen before - a patient with a long and complicated psych and substance abuse history. She was visibly glad to see me. The day chaplain said, "We're trying to persuade her it would be good for her to go to the local state hospital." I took the patient's hand and sat down - and when I looked around, they were all gone! All those people trying to work with her before had melted away. (One could wonder, I suppose, whether I was having an hallucination.)

    Now, my experience is indeed that patients with psychiatric problems are usually quite logical, with really skewed premises. So it was with this patient. And so I went with her into her world, at least as far as I could without letting go of my own. I simply let her talk. I acknowledged her concerns, and occasionally tried gently to point her toward orientation; but very gently and very little.

    Ultimately, the patient did agree to go to the hospital. She thought one of the EMT's prepared to take her into the ambulance was cute, and so she was all ready to go. Certainly, it had nothing to do with me; but for the time I could sit there, listening and laughing with her, others could do, for her and for others, what they needed to do.

    Sounds to me like you did fine, whatever the tired, frustrated, curt response of the nurse.

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  3. Thanks, Martyn and Marshall!

    Marshall: I probably could have done much better by listening longer, but the stories I was hearing (which were considerably stranger even than I've described them) truly weren't making much sense, at least to me.

    I'm always afraid to ask these patients questions, too, because I'm not trained in this area and don't want to get in over my head. But is that something you'd do, ask a patient to explain a confusing story?

    It occurs to me as I type this that the stories were about loss and grief and fear; the patient was about to have an unfamiliar test done, and was scared. I said, "I had that test once and it wasn't scary at all," so I was trying to be reassuring, but the strange stories might have been triggered by anxiety (which would have been exacerbated by the 9/11 anniversary, too).

    So if I were doing it over again, maybe I'd just say, "Wow, that sounds sad and scary," since the feelings are real, however odd the reality they live in.

    Nothing like 20/20 hindsight!

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  4. Hi Susan,

    If you'll forgive a little quibbling, it doesn't seem so clear to me that what you said actually violated her confidentiality anyway. I certainly am not familiar with the specifics of what your obligation would be in that situation, but it does sound like what you said was a very general, non-specific evaluation of her condition, not actually a revelation of statements she'd asked you to keep private. Does that matter?

    (Thanks for your e-mail by the way, it really was a pleasure to hear from you. I fully intend to respond in kind. Only a few more rotations around the excercise wheel to go before I get to it.)

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  5. Hi, Claire! All quibbling welcome and appreciated!

    Your question is a good one, and the answer is: I'm not sure. When the patient said, "Please don't tell anyone," did that mean, "don't tell anyone the specific story I just told you?" or "please don't tell anyone that I'm telling you stories that will make them readjust my meds"?

    I chose to interpret it as the first, and I still think there was a medical need-to-know issue. (And that's why I didn't ask for clarification, which perhaps, strictly speaking, I should have.)

    The request might have meant, "Please don't tell anyone stories that will make them look down on me because I'm crazy," which is how Nurse Y was treating the situation. On balance, I'm very glad Nurse Y was sticking up for the patient -- I've said all those things to people when I've been on the other side of this -- but I wish my own motivations hadn't been so misunderstood!

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  6. One reflection on Claire's comment: you have to remember that as a chaplain you're part of the team. We balance patient confidence, and for those ordained sometimes confessional silence, with patients. But, we need to remember that we're there for their benefit; and not sharing pertinent information might do the patient harm. Sometimes I have to tell the patient, "For your benefit I can't keep that secret." Unless I'm explicitly asked for sacramental confession, I set limits with the patient, as best I can, at the beginning.

    Sure, sometimes I ask a patient to tell me more about a story that makes not sense. Usually I can't stop them.

    Your observation about the anxiety is important. You're a science fiction writer, so you'll appreciate that one of my favorite Next Gen episodes is "Darmok." People will tell us stories to convey things, usually emotions, that they can't convey otherwise. Patients from stiff-upper-lip, share-no-feelings backgrounds, will tell stories, and the emotions reflected in the stories of then are often the emotions they have but can't express now. (I used to use that with CPE students.)

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  7. Hi, Marshall; thanks for stopping back! Actually, I've never watched NextGen; my Trek experience is pretty strictly limited to the original series.

    My husband and I are *huge* fans of the new Battlestar Galactica, though, and are very excited that Season 2.5 is coming out next week.

    Re the confidentiality issue: I was trying not to violate trust, but it all felt very gray and fuzzy, especially when it turned out the staff already knew about the issue.

    But I'd had no way to know that, which was why the dilemma arose.

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