He was estranged from his family. No one could fully put their finger on just why that was but all of the notes in the chart underscored that fact. Even though I knew he'd been living in shelters, I wanted to hear it from him. "Where do you live?" I asked. He didn't answer.
Wait. I take that back.
He mumbled something that I couldn't understand. His eyes were at half mast when he spoke but then slowly drifted downward afterward leaving a teeny slit of the muddy whites of his eyes. And that? That was how most conversations with him went. Questions answered in shaky, garbled replies that slipped out of his mouth, rolled onto the floor and under the bed out of grasp.
According to the chart, he'd never been here. Well, unless you count the one fleeting visit he had to the ER triage some seven years back, he hadn't. And that made it just that much more difficult. His medical history gave us no point of reference upon which to reflect. No elaborate note from an earnest intern or dutiful social worker explaining all that had gone awry in his life and some glimmer of a clue about his mind or his world. Nope. There was none of that.
None at all.
And perhaps this wouldn't be such huge deal if he wasn't so sick. Not just sick. But sick-sick in that way that conveys an imminent demise unless some act of God occurs. The kind that calls for family members sitting around tables with long faces and troubled glances while doctors clear their throats and try their hardest to use only empathic body language. But, see, that wasn't happening in his case. Because there was no family to call.
None. As in, not one person who could step in and help navigate all of this awful while at his side. No worried soul wringing their hands or scowling suspiciously in my direction. And especially, there wasn't any person to step in and speak up for him should his mind not allow full decision making capacity.
By the time I came along, that's what was happening. His indiscernible speech sounded nonsensical during most interactions and had been deemed a lack of competence to make his own medical decisions. Which basically left us with tied hands since there was no one. No one at all.
Our social worker data mined and found a phone number for a granddaughter. After speaking to her once or twice, it became clear that she wouldn't be the go-to person. The follow up calls went straight to voice mail.
And so. It went very predictably day after day. Him sick-sick and muttering inaudible replies to our questions and us chasing our tails trying to figure out what to do. The overall prognosis progressively dismal, without any clear evidence of meaningful recovery anywhere in sight. So, really, death with dignity appeared to be the best option. At this point, that could be achieved only through a decision to do nothing heroic. But that? That calls for a shot-caller. A person who not only knows and loves the patient well enough to know their wishes. But especially who's also willing to step in as an advocate to assure the patient the gets the treatment they'd want. Or, in this case, doesn't get the treatment that they wouldn't want. He didn't have that, though.
So what it meant was a full court press. Doing it all even if it was mostly futile.
And wait. Let me be clear. No, I don't fancy myself the angel of death. I do think miracles can happen. That said, since I am a believer of said miracles, I know that they don't follow rhyme nor reason and happen regardless of what we do. Otherwise it's not as much a miracle as it is an intervention, you know?
So yeah, that's my thoughts on that.
Anyways. The point of this is really what happened the last time I saw the patient on rounds. We came in and it was that same thing as always. But at the very, very end of the encounter, something happened. He said something that struck a cord and gave me pause. "I'm all out of tears today." It was still gargly but this time, it was enough for me to understand.
"Wait. What did you say?" And he repeated it. This time it was unmistakeable. I rested my arm on the rail of the bed and spoke again, this time more softly. "This is a lot, I know." And when I said that he nodded, a tear trickling from his eye and rolling under his chin.
I paused to see if he'd say more but he didn't. "Sir? I am going to come back to talk to you some more, okay?" He grumbled an affirmative response.
We stepped out in the hall together. The interns and the med student studied my puzzled face. One finally bit and asked me what was on my mind.
"That last statement," I said. "It was abstract."
"What do you mean?" a student asked.
"I think he gets it. He knows what is going on. Like he's decisional."
One intern squinted an eye. "You think?"
"I do think."
And that was all I said.
We finished up our rounds and I returned to him as promised. This time, I pulled up a chair and sat as close to him as I could so I wouldn't miss a single word. "Hey there."
He looked both surprised and happy that I'd actually returned. He smiled, bony cheeks rising high on his face and lips so dry that they cracked a tiny tear revealing glistening drops of blood when he did.
"I came back to talk to you some more."
A string of sounds came out in response. I asked him to repeat what he'd just said and recognized it to be, "'preciate you for that." And so. I dug down deep to pull out all the patience I could to hold what I hoped could be a meaningful conversation with this man. A discussion that everyone said he was incapable of managing. Trusting my gut, trying to see if this hunch I'd had earlier that he was still in there might be true.
So we talked. Or rather, I asked questions and he mumbled responses. But this time I was listening more carefully and asking for instant replays on the pieces I didn't get. Eventually, he said something that couldn't be confused for anything else:
"M-m-m-my body sick. Y-y-you c-c-can't find nobody 'cause-cause-cause I bes to myself. B-b-but I'on't n-n-need nobody calling my shots. I-I-I can c-c-call'em my own self."
I asked to hear that again just make sure. And he said the exact same thing again. He sure did.
Was he a quirky man? Sure. And had his life taken the rocky terrain of never-stable housing and disconnection from family? Definitely. But that didn't mean he couldn't understand his health problems for himself and have his own say. No, it did not.
The chart had note after note that said he had no capacity to make decisions. Over and over again that's what was written. By important people with lots of knowledge in this area. And honestly, I could see how that happened to some degree. But now I knew otherwise. He was decisional. And yes, reversing all that had been said and determined about him would likely be super difficult and a huge headache.
First, I documented our conversation. Then I started dredging through what I knew would be a painstaking process with a lot of push back. Except something happened. It wasn't hard, actually. I called my psychiatry colleagues and the social workers and the physician who saw him before me and told them what he'd told me. And all of those people were happy, not prideful or resistant. Happy that this man would be able to call his own shots--for his own self.
He was discharged the very next day to the hospice care center that he chose himself. And it was seamless and free of any road blocks. He was smiling on his way out, this time without the cracked lips since somebody had slathered them down with petroleum jelly.
I learned a simple lesson and had another reinforced. The first was that I shouldn't assume things will be difficult. I mean, it's good to be aware and pragmatic, but I'm talking about dreading something to the point of thinking it's not worth the fight. A lot of times, it isn't as impossible as it looks. I think I'll fight harder for patients given that insight recognizing that I am not the only person who wants the patient to win.
And last is one I've always known but can always stand to think about again: Listen and decide for yourself. Clinical inertia is a mighty, mighty thing. You hear things and are told things that are life changing for patients. I was reminded to not let the exhaustion of a busy service of patients make me pull back and not look and listen with my own eyes and ears.
I hope if I'm ever in a situation where I'm up in age and very sick-sick but deep down inside can make my own decisions about my health that someone listens to me. I hope someone somewhere fights for me to call shots for my own self. I really do. And you know what else? If my lips get chapped, I hope they rub a little Vaseline on me, too.
Honestly? I write this blog to share the human aspects of medicine + teaching + work/life balance with others and myself -- and to honor the public hospital and her patients--but never at the expense of patient privacy or dignity.
Thanks for stopping by! :)
"One writes out of one thing only--one's own experience. Everything depends of how relentlessly one forces from this experience the last drop, sweet or bitter, it can possibly give."
~ James Baldwin (1924 - 1987)
"Do it for the story." ~ Antoinette Nguyen, MD, MPH
Details, names, time frames, etc. are always changed to protect anonymity. This may or may not be an amalgamation of true,quasi-true, or completely fictional events. But the lessons? They are always real and never, ever fictional. Got that?