Life at Grady: Too much information

The following post, by Kimberly Manning, FACP, originally appeared on her blog, Reflections of a Grady Doctor. It has been adapted and reprinted with permission. Identifying information has been changed to protect individuals' privacy. Dr. Manning is a hospitalist at Atlanta's Grady Memorial Hospital.

Yesterday I burst someone's bubble.  I let the wind out of their sails and even rained on their parade. Not on purpose. But still. I did. And it stinks knowing it.

It started off simply enough. The chart explained what was going on. A cancer that started in one place had moved to another place. Or rather other places. And those other places made my patient's body hurt and feel bad. None of those symptoms made sense until finally the doctors caring for the patient in the hospital arranged a biopsy of a spot that appeared on one of the films. A tiny needle grabbed a tiny piece of it and the pathologists confirmed what everyone hoped it wouldn't: Cancer.

And not just cancer. But metastatic cancer. Which almost always is bad news.

When I opened the chart, none of this seemed to be a secret. The treatment plan was explained in great detail and repeatedly used words like "palliative" and "widely metastatic." Which were less abrasive ways to say "unlikely to be something we can cure" and "because it's all over your body," respectively. And I thought the patient knew this.

Not in the way that the doctors knew, but still, I thought the patient and her spouse understood. Understood that the chemotherapy that she'd been receiving was designed to fight back the cancer even if it couldn't cure it at this point. And that the radiation that her husband was driving her back and forth to receive would indeed shrink down the tumors some. But more to help her breathe better and walk easier.
You know. "Palliative." Like the chart said.

So they were in the clinic for simple things. Like, "How do we get some Boost drinks?" or "Can we get some of those circulation stockings?" And the resident seeing them stayed in his lane and addressed those things. He told me the background story, but stuck to their agenda. He left all the complex cancer stuff to the oncologists.

I came in the room and said hello. Shook her hand and complimented her wrinkle-free skin. Her husband tipped his hat and told me he recognized me from television. His voice was raspy like Fred Sanford and I enjoyed it so much that I kept him talking just to hear it. So we chatted and bonded and built a relationship right there in that clinic.

Before you knew it we were yucking it up like old friends. And since we were, the exchange was easy and open. "It sounds like you've been tolerating the palliative chemotherapy well!" I said with my hand right on top of hers. And she wrapped her fingers around mine and nodded her head.
"Oh yeeeeaaaaah. She don't even get all sick to her stomach or nothing. She tough as nails." And her husband winked right at her when he said that which warmed my heart and obviously hers, too.

"How long have y'all been married?" I had to know. This wasn't a ten-year or even a twenty-year love. This was one of those call-all-your-grandchildren-and-all-of-your-kids-in-to-celebrate kind of loves. One that takes time to get like this. The kind that's been bubbling on the stove for so long that the flavors have blended together just right into one perfect taste where you can't even discern exactly what's in it.

So the husband smiled right at his wife and they both said it together, "Longer than you been alive." And we all laughed because that answer seemed to be one that they used often. And everything was well and good and that bubble was flying high, high on the ceiling of that room.

"What questions do you have for us?" I asked in parting. Simple enough. Standard enough. Bubble still floating.
They looked at each other and then shrugged. "I don't got na'an," the patient said. "I thank he told us what we needed to know." She glanced at my resident and beamed. He did the same.

"You know what? I did have one question," her husband spoke. As he said it he snapped his fingers as if trying to remember something. "What do. . . what you said it was? What do it mean when you call it PALL-A-TIVE chemo? What do that mean?"

I hoped I'd heard the question wrong. I mentally crossed my fingers and clarified that query. "Palliative?"

"Yeah, ma'am. Is it something different about the chemo if you call it PALL-A-TIVE? Cawse I heard that a few times from the cancer doctors and you said it, too. Do it mean that the chemo is stronger?"

And that's when I did it. I opened my mouth and started talking without fully thinking about exactly where they were with all of this. I took the question on and answered it--taking it exactly for face value.
I wish I hadn't.

"Palliative? Well. . . let's see. . . that means when you. . .hmmm. . .okay, kind of like when something focuses on making you feel better and calms down your symptoms. That's when something is palliative."
"So why ain't all chemos considered PALL-A-TIVE then? Seem like they all should do that for you, don't it?" And her husband innocently laughed when he said that part. She did, too.
Bubble still floating.

"Hmmmm. Here's a way to think of it. Depending upon where the cancer is. . .meaning like what stage it's in . . . .that's how they know what the best treatments are. Sometimes if a cancer is caught really early or before it moves anywhere, they can give chemo or do surgery or radiation to make it go away for good. But sometimes if it's in other places--or advanced--the chemo will slow it down and help you feel better even if it can't take it all the way away. . .that's what palliative chemotherapy does mostly."

"I don't think I understand that. You kinda confusing me with all that, doc. Go on and break it down different cawse I like to make sure I understand, you know?" And the way he said that part was innocent, too. So innocent that it should have confirmed for me that my next words would be the sharp pin that deflated their bubble. But I missed that cue.
I wish I hadn't.

"Think of the cancer like a train. The best way to stop the train is before it even leaves the station. Chemo works best if you attack the cancer before the train conductor even pulls out of the gate. Sometimes if it's pulled out a little bit, the chemo can stop the train altogether. So stopping the train is like curing the cancer. Think of it that way."

"Okay. . . .okay, I'm with you."

"But sometimes the train left the station and has already been to places we don't want it to go to. It's dropped off passengers and it's hard stop it once it's gone. That's kind of like when a cancer has spread to other parts of the body. So the chemo and the radiation is aimed at slowing the train down even though it probably can't stop it. The medicines help with the symptoms and keep the train from wreaking havoc and making you feel bad."

His eyes flung open wide. That's when I felt the dread swirling in the pit of my stomach.
*POP*

"But y'all CAN stop this train right? Altogether, right?"
"Sir?"  And I know that sounded stupid because I knew exactly what he was asking me.

No. We can't stop it. We can't! We want to stop it. For you, for her, for your whole family but we can't. We can slow it, yes. But not stop it.
That's what I wanted to say but I'd already said enough.

"Is that what PALL-A-TIVE mean when y'all keep saying that?" He was staring at me and blinking hard. She was silent and simply looking in his direction. "So what happens when the train jest keep on moving? Eventually seem like it's gon' wreck."

Wreck? I kicked myself for what I thought was an excellent metaphor. But, really, he was right. Cancer that can't be treated is . . . a train wreck. And train wrecks never end well.

My resident tried to help me backpedal a bit, but the bubble was now in a heap on the floor.
The rest of the encounter was heavy and sad. This happy couple of more years than I've been alive just learned that their days together would be numbered. And not just numbered in the theoretical sense that all of ours are but that real, concrete sense that hurts somewhere deep and unrelenting.
Damn.

Before I left the room, I looked at them both and said what was on my mind. "I'm sorry." I left it there. I wasn't sure what else to say. I felt so suffocated by the enormity of it all, the power that something as tiny as one person's tongue can hold and how it could change an entire outlook in the twinkling of an eye.
I hoped for an obligatory statement from them to reassure me. It never came.

"I would have been okay jest thinking the train was gon' stop. Even if it wasn't," she said quietly. And when she said it, she couldn't even make eye contact with me. What's worse is that for the first time in that whole visit, she couldn't even look at her husband either.

"Something about that make me feel a-fred. Something about 'no cure' and 'jest pall-a-tive' seem final." His voice was tiny and all of that raspy animation had floated out with the air of that once lofty bubble.

And all I could do was sit and stare and wish I hadn't said as much as I had said. Or that I'd said it differently. Or that this wasn't their reality. Or that I could be comfortable with just letting someone not know what we were saying about them on the other side of the door. Skimming over words like PALL-A-TIVE with the understanding that doing so might be far more palliative than knowing.

So yeah. I cried on the way home from work. Which I do often. And that's okay because something about it feels cathartic, and like it honors my patients and what they go through. And you know? I don't even know what my point is of telling you all of this or what the answer is to any of this. I just know that sometimes no news is good news and that being a doctor can be as hard as hell.

posted by Kimberly Manning, MD, FACP at 7:01 AM