The Times, they are.
She has been on the service since soon after I took over from the previous resident, a third year who couldn't wait to pass off the patients and the pagers to me in his last month of inpatient wards as a resident. She came in through the urgent care initially with a chief complaint of "ear pain." After the resident has cleaned out her impacted infected ear, her husband shows up, a thin somewhat squirrelly stoned-even-when-sober type man with a pony tail to whom she will purse up her lips and blow kisses when we get her admitted. "Did you see her arm?" he asked the resident. "No," but then he looks. She has a golf ball-sized hole in her right upper arm. It oozes putridity. "I'm so embarrassed," she mumbles as she pulls her long auburn braid over her shoulder and cradles her arm. "Don't touch it!" She glares suspiciously at us. "He's so mad at me. I didn't mean to do it. I didn't notice it was there until four days ago." Excuse pile up. It's clear she has been skin popping again--the scars on the rest of her 50 year old skin reveal her familiarity with the technique and with the complicated abscesses which can result.
So this is what we deal with--me and the intern who primarily takes care of her. She ends up refusing the MRI we'd like to do to see if her arm is infected because the dye will "kill her kidneys." She refuses to go to a skilled nursing facility because it's full of "old people" and she doesn't want to catch something. Her husband agrees she shouldn't go because the places "smell like urine." One days I find her hunched over on her bed with the water running in her bathroom. "I shit myself. Why did I do that. He's cleaning it up. I'm so embarrassed." Her hair was not yet combed and braided or up in a bun held by a sparkling butterfly that morning. She hid her face in her hands and wouldn't let me see her arm again. "It's gettin' better," she insists. "Let me go home. I can't stay here. My kitty is fourteen years old. He's gonna die without me. Give me some pills to take." She pleads. But we are concerned that with the extent of her wound that the infection has spread into her bone--a problem which requires six weeks of intravenous antibiotics. And we cannot send her home with an iv to finish them because of her drug history. "I'm not like that! I ain't no criminal. You can't keep me here. I want to go home. Where's my huss-band? Just let me go home."
I want to. I do want to let her go home. And not only because the intern who follows her is frustrated; and not only because she adds to the numbers on our mounting census; and not only because she refuses most everything we try to do to help her; and not only because her treatment has lost all learning value for any of us: and not because of her frequent lamenting about her arthritis pain and her need for a special iv pain medication. I want to send her home because she is miserable. "What a miserable human being," one of my three attendings calls her. He means it in the way that she is miserable to be around, I thought. I see is as she feels misery herself. Because she does.
It is miserable to be in the hospital for any amount of time, for anyone who has anywhere else they would rather be. It is miserable to feel trapped in a supposedly sterile prison. I learned that patients cannot leave the floor for more than two hours without being considered "eloped."
Us doctors, many of us younger than many of our patients have to give them permission to get a bed upstairs. Before they can get out of bed to pee, we have to give them permission. "Bed-rest with bathroom privileges," we write in the "Activity" section of their orders. Before they can take tylenol or saline eye drops, before they can leave the vicinity of their room, before they can eat any food, we have to give them permission. All in the name of their health, of course, we take away their freedoms. And leave it up to them to remember what there is about life on the outside that is worth living. Because there are few reminders to them in the routine of the hospital life which blurs together into meal time, med time, sleep time, blood draw time, doctor visit time, radiology tests, etc. I understood first hand why Mrs. Joust wanted to go home. I had wanted to go home when I was there too.
Last Sunday, as I left at five after covering the team on my interns' day off and finishing a stack of my dictations in the deserted medical records office in the hospital basement, I breathed a sigh of relief and fresh air when the sliding doors opened to the outside world. Mrs. Joust was out there sitting on one of the benches leaning dejectedly over her iv pole with her head resting in the crook of her unattached arm. She had stopped wearing the hospital gowns on her second day there. She wore a loose white linen top with bead work accents and a loose tie at the neck. From lifting up the back of her blouse to listen to lungs over the past several days, I knew she didn't have anything on underneath it.
I said hello to her as I hurried toward my own freedom, thinking I still had time to head to the beach and put my toes in the sand and feel the waves wash up around my swollen arthritic ankles. She gave me a forced dim smile which didn't extend anywhere close to her eyes. It was an effort just to curl up the corners of her lips.
I remembered the day I sat on the benches outside the hospital with my iv pole at 5 pm and watched all the healthy people go home to their families or pets or plants or just their beds--point is, they got to leave. And I didn't. And because of me (and her arm and her history of drug use) neither did Mrs. Joust. Last year, when it was me, I rolled my pole back up to my room when dinner time rolled around or when it started to beep a warning that the battery needed charging to keep letting the blood thinner drip into my veins and keep the clots in my brain from getting any larger. That iv pole became my most constant companion. When I started to feel better, I rolled in around the back of the hospital and sat with it on the lawn. I pushed it down to the surgery floor to get scrubs for PJs (since the patient ones have all sorts of revealing holes and ties in them); or to the NICU to visit my friends and the tiny babies. I rolled around the grounds and downstairs to visit my fellow residents at noon conference. I rolled it outside to the administrative buildings to see my program director. I pushed it down unfamiliar hallways to arrange my follow up appointments in stroke clinic and coumadin clinic and hematolgy clinic and rheumatology clinic and primary care clinic. I learned that the battery lasted only a couple hours.
That was before I knew that I wasn't supposed to leave for more than two hours. But because it was me, and because I left my cell phone and pager number taped on the closed door of my room in case the nurses needed me to come back to adjust the rate of my heparin drip, I got special treatment. They didn't set curfews for me, or make me ask permission to go to the bathroom or ask permission to leave the floor or indoors or go to the cafeteria or gift shop. If I came back more than two hours later, they didn't discharge me and send the cops after me to take out my iv. They didn't kick me out of the atrium where I sat staring out the window when they had "confidential social work meetings" there. They didn't give me a roommate. I wouldn't let them collect and quantify my urine and stool everyday, but the nurses still sheepishly asked me to estimate it at the end of each of their twelve hour shifts when they got to go home. The didn't kick my boyfriend out when he stayed the night with me. They let my mom and friend sleep in my small eleventh floor perch when they visited and kept staring at me like I had actually died instead of almost died. Many of the rules of the hospital didn't apply to me.
But they did apply to Mrs. Joust. They did apply to Mrs. Sidley, my elderly homeless patient who has pneumonia and left for one hour and fifty minutes while the security guards scoured the cafeteria and the smoking area for her. Even with my special freedoms as a patient, the hospital was a decidedly un-fun place to live. I know why our increasingly demented and unstable HIV+ male refused to go to a nursing home. I know why Mrs. Joust cries when she pleads with us to just let her go home to her husband and her kitty, "I'm gonna die if you keep me here any longer!" Sometimes what I don't know is why they stay as long as they do and let us kidnap them in the name of their best interests.
Now return to the scene last night: sunset; my interns are finishing up the last of their paperwork and I still have yet to start a single of the ten notes I need to write; we have nine of the ten patients we can admit in a night. Earlier that day, Mrs. Joust has gone missing--for more than two hours. She "eloped"--that is left without permission. And she has her fancy PICC line in (an ideal conduit for infection and iv drug injections). All night while I hurry from one patient to the next in the full ER, I warn the ER physicians that I want to see her if she shows back up. I want to readmit her and I'm trying to save a spot on my service for her. She still needs four weeks of iv antibiotics to finish her six week sentence...errr, treatment.
Then I hear rumors that she has reappeared in the waiting room; she has started to check back in. I ask them if we can get her back quickly and find a place where I can talk with her and try to convince here to stay with us, and if not that at least get her iv line out and give her oral antibiotics. She comes back to the treatment area for a while but it is change of shift for the nurses and they don't communicate to the next batch that she has a line and is a flight risk. So she flies again.
I know she can't have gone far. She does have bad hips and it hurts her to walk. She uses her iv pole or a wheelchair to hunch over as she shuffles along. I have seen her gait as she goes out to smoke. I could recognize her even in the dark streets. So, that's where I go: the dark streets around the hospital. I am free to walk around without my iv pole now. I can take the stairs with impunity. I am much faster this way. I can catch her if I see her. And in the midst of it all, I can't believe I am doing it. It briefly baffles me that I have gone to school for most of my adult life to end up chasing an iv drug using woman with a hole in one arm and an iv in the other around the dark streets in the middle of the night, in my white coat cape weighted down with all the paperwork I need to complete before the sun rises and this amusing scene vanishes into the mild dis-reality of the dark night.
The security guard sees me scanning the street-lamp lit circles up and down the street for a glimpse of her.
"You looking for someone?" she asks.
"A woman with long red hair," I say.
"I think that's her," the security guard points toward the bus stop. I see her silhouette against the yellow street lamps. She is hunched over one of the ER wheelchairs shuffling already a block and a half from where we see her. As she enters one of the bright circles, I see something in her hand, too.
"Yeah," I tell the large female security guard, "that's her." She comes with me to go after Mrs. Joust. We quickly gain on her. Despite the physical therapy I ordered for her, she remains weak from her long stay with us. When we get close the security guard starts saying, "Excuse me!" loudly, but she ignores us and just keeps walking until we circle around in front of her. She sees it's me and hastily puts out what I now see is a joint in her free hand, after taking one last rushed pull at the rolled paper before mashing it into the ground and turning back to me.
"Mrs. Joust! Where are you going?" I ask, bending down so I can see her face.
"I'm leaving! I can't stay here. I need to get home. The bus leaves at 9:30. I need to get home to see my kitty. He's gonna divorce me. I can't stay here. My husband's gonna leave me. He can't keep coming in here. I need to go home! I just left for a few hours. I was outside talking with my attorney (about something else) and when I got back they said I had been discharged. See?" She pulls out the "against medical advice" form they'd had her sign when she left the ER (after being told by the floor nurses that she could not just go back to her room and that she would have to be completely re-admitted since she'd been gone so long).
I glance at it. "Mrs. Joust, I'd like you to come back with me. We will get you your bed back. I'll readmit you. You just have to be patient. Your arm is very infected. I'd like you to stay. Come on." I usher her into the wheel chair she has been pushing and the security guard pushes her back as far as her post and I take over from there. She has dropped her head into her hands again and I take her through the back door to the ER since I don't know where else to get in. I get a few irritated looks from the nurses when I roll past with her. There's no where to put her so I park her by the nurses station and go around to kneel down in front of her to begin a 15 minute long plea with her to stay with us. They move us over to the triage area so we're out of the way of all the gurney's with paramedics in tow moving back and fort. I try to call her husband to help me talk her into staying but there's no answer. I can't let her out of my sight because i know she's leave again. I try to call her emergency contact but no answer there, either. She lets me call, but only reluctantly.
Finally she's tired of listening to me, "I've got to go home. I need to leave. I'm gonna have a breakdown if I stay here. You're stressing me out! I need to go home!" she gets lounder and louder.
"I know, I know," I try to calm her down, halfway thinking of explaining to her that I really did know what it was like to be a prisoner in this hospital in particular. But she wouldn't hear it. She's used something besides whatever was in that joint I think anyway.
The ER attending and nurses keep coming up to me pressuring me (and by extension her) for a decision. "Stay or go?" My intern walks past with his stack of partially completed history and physical forms and raises his eyebrows at me in amusement and amazement.
Finally, I give up trying to convince her to stay. In my heart of heart, I'd want to go if I were her, too. Heck, even as me, I want to go sometimes. "At least let us take that line out," I ask her softly. "Take it out," she agrees. I tell the charge nurse and attending the outcome of our negotiations. Not three minutes later he comes in having pulled the line; I ask him to send her with some oral antibiotics and he hastily scribbles out a prescription for some we can give her from the ER stash.
She told me she'd just wanted to go home for one night--that she'd be back the next day. But really, I doubt it. Once you regain a lost freedom, it's hard to willingly go back to confinement. I didn't really think she'd come back. I hoped her arm would get better and that next time I saw her, if ever, she would still have both of them.
I didn't watch her go.
Her admission spot on my service was now open and the ER chief resident already had a "favor to ask of me." She was a 53 year old female smoker who helped mentally disabled men live their lives. She had a chest x-ray and cat scan from an outside hospital which looked like lung caner. She had no insurance and if we didn't admit her (though she was clinically stable) she couldn't get the work-up or treatment she needed and she would probably go home to die. I stopped myself from telling him what even with the work up and treatment and hospital admission, she might eventually go home to die. And I stopped myself from thinking that may be better without all the struggles and pokes and prods. He, and she, clearly wanted to fight this likely cancer if at all possible.
I thought of Pop and how I still struggle with guilt about not insisting he went into the hospital that last night when he died at home in his sleep. How if he'd waded through the ER to get admitted, I could picture him on oxygen or getting CPR that would probably have saved his life--for a while longer, until the next admission or next illness or next heart attack or next bought with colon or skin cancer.
I mentally navigate the increasingly well-worn thought paths of reassuring myself that he'd lived a long life, that he was not able to do all the things he wanted at the end, that it was time for him to go, that he wanted to died peacefully at his sleep at home and not in the hospital. He hadn't wanted to be resuscitated. I circle through those mantras in my head and feel a little better. My eyes well up with tears of missing him but that is me selfishly wanting him to stay forever, despite the pain and frustration which I knew were increasing as he hung on those last few months or years to make sure we were all alright.
I admitted the woman with lung cancer, starting what I knew would be a physical and emotional battle for her against death. Death seen as the enemy, not as the end to something that must necessarily have an end. To her, I probably looked like a solider in the army against death. Little did she know, I'd seen him, and I understood him not as a defeat, but as a peace, a "shuffling off of mortal coil" of sorts. A place where she would not have to ask me if she could get out of bed to pee.
On post call rounds that next morning, my attending randomly asked one of the interns, "How do you want to die, Joe?" Once we wheeled into the elevator with not an iv pole, but our computer on wheels, he said, "Uremia," with some assurance. You just sort of fade mentally away over a few hours or days that way. "Really, you don't want to be really active until you're like 75, running marathons and stuff and then just go suddenly with a massive heart attack?" I could see that was the way she wanted to go. She looked at me for confirmation that her way was better. "I want to get eaten by a shark." She scoffed pleasantly, "Really?! Bleed to death out there in the ocean, with a shark fin coming up out of the water?" And she went into the Jaws theme song. "It would be memorable," I explained, only partially keeping up the story for effect. In truth, I would like to be in the ocean perhaps, with my blood running out into the water and the coolness surrounding me and taking me back. But who knows?
I'd warned her that the woman with lung cancer had been told it might be pneumonia--so she still had a little hope that it wasn't cancer. Her face scrunched up into tears when my attending reiterated what I'd said about what the round ball in her chest probably was. Our whole team was there, plus the dayfloat resident--a third year who taught and helped the team with a confidence I wanted to emulate--and the pulmonary fellow (a would have been third year resident who had started fellowship early and who I'd worked with in the CCU the December before). Her daughter was at her side. I handed her a box of kleenex as we all stood around watching her in the first realizations of grief.
I stayed more than my alloted thirty hours that shift. I tried to help Joe get his first successful lumbar puncture with Eric's help holding the patient--a neurologically devastated man after cryptococcal meningitis--but he got frustrated and I finished it. To think I used to pass out nearly at the thought of those and now Eric give me thumbs up and they eyebrow nod and says I "have the touch." I also stayed because I had my doctor's appointment nearby afterwards so I had lunch at the hospital at the new intern welcome party and talked with the incoming interns and the outgoing residents. I found myself, in my no-sleep haze, immensely enjoying the camaraderie of the residents. Many of them had matched into fellowships the day before and the air was giddy with their happiness at their soon-to-be new roles as cardiac or hematology-oncology or endocrine or hospice fellows.
I already felt nostalgic for the present, surrounded by these hard-working smart, caring, young doctors. Aware of the time, very soon, when it would all change again. When the new interns will start, terrified and unsure of themselves and grow into assured knowledgeable content residents. I enjoy these people. I admire many of them. I respect what they have chosen to do with their lives. It is a choice I made, and continue to make over and over again, every time I go to work.
Even though sometimes I want to run away from the hospital wishing for home and a husband and a "kittie," I keep coming back there. I return because I can't imagine a more ultimately meaningful way to spend my career than helping people survive illness, live life, and finally accept death.