The title of this post is the way in which our hospital identifies patients who are inmates of the federal prison somewhere in our area. They don’t get to use their names (maybe it’s like the equivalent of HIPAA for prisoners?). All I know is that they all start with FED followed by one of the longest strings of numbers known to man.

So we got this prisoner on Tuesday. I was just intrigued with this patient all three days, though I didn’t have him yesterday.

We came to know his real name over the course of caring for and talking with him, but I won’t use it here. I’ll call him Fred.

What an interesting, fascinating case. I’d seen many prisoners as patients throughout the hospital in my work as a unit secretary, but this was the first time I actually got to care for one.

Fred’s history (medical and otherwise): 33 years old. Gang member. Paraplegic at T6, since 1993 due to a gunshot wound. Arrested in 2006 for selling drugs on school property (no kidding!). Above knee amuputation of the left leg. Colostomy. Urostomy. Admitted with a Hgb of 4. He’d been on coumadin for two weeks because the prison infirmary where he stays suspected a DVT in his right leg (we found no evidence of this).

Fred’s condition was one of those things that medical professionals say you might see once in a lifetime. Doctors and nurses came from other floors to check out Fred’s backside. Because of the years of sitting in his wheelchair and having no feeling from the waist down, and probably due to limited access to medical attention in a prison, Fred had developed a series of decubes. Over the years, they’d been debrided and operated on so many times that Fred literally had no backside. It was the strangest looking thing I’d ever seen. I don’t know how to appropriately and tastefully describe it, so forgive my crudeness. Fred had the beginning humps of “buns” at the top (I”m not saying “buttocks” — can’t say that word since Forest Gump without laughing), but they only descended about two to three inches. Everything else had the appearance of being sliced off, or carved out until the back of the legs. I wish I could describe it. I wanted to take a picture to post here because the minute I saw it I knew I’d be writing about it here.

The numerous surgeries he’d had over the years left this area full of tight, shiny, bright skin, strange discolorations and in strange configurations and folds all over the area. Like a series of hills and valleys. He came in with a 12×18″ dressing over the entire area, which was literally soaked (and dripping) in blood. And for the first time in my short exposure to the medical world, I saw shock, horror and confusion (as in “what the hell do I do with that?”) on the faces of seasoned nurses, doctors, and the prison guards who must be present in the room whenever the privacy curtain is drawn.

Because of the coumadin, poor Fred was literally bleeding out from the various active wounds on his backside, as well as showing blood in his urostomy and colostomy, hence the Hgb of 4. He was dizzy and disoriented and in hypovolemic shock. By the time I left work yesterday, he’d received 12 units of PRBCs and at least four of FFP (that I know of).

But what really struck me about Fred is what a really nice guy he was. And how taken I was with him.  I wanted to know more about him, size up his psyche. He was friendly and engaging, though he didn’t initiate any interactions. He’d chat openly as we tended to his dressings, hung his blood, etc. We didn’t ask him about his crimes or sentence, but he’d talk about them. When the endless stream of docs and specialists came in to see him and all asked him the same questions about his paralysis and amputation, he’d answer them matter of factly about the shooting and then the car crash. (Sidebar: Why do doctors all ask the same questions over and over? The info was all there in the patient’s chart.)

Fred was 100% polite and grateful. I imagine a stint in a real hospital might be a little bit like a vacation for the incarcerated. He had a nice private room (all the rooms in our entire hospital are private) on the fourth floor with a breathtaking view of the New Jersey pinelands. He had his own TV and got to watch whatever he wanted. He salivated over his hospital meals like he was dining at an expensive steak house. He thanked us, his caregivers, profusely for everything. He took care of his own urostomy and colostomy (SO refreshing — I’d never seen a patient do this!). In all, he was a model patient. I hear that this is pretty much the status of all federal inmates who grace our beds.

Anyway, me and my silly social worker’s heart: I wanted to “reform” Fred. Not really, but I was determined to treat him as a person. Not just that nasty prisoner who sold drugs to school kids. Most everyone in the place disagreed with me. ALL of the nurses, and doctors, I must say if I’m being honest, were completely kind, courteous and professional to him. The guards, not so much. Behind closed doors, though, the staff sang a different tune. I learned very quickly to not share my recurrent private thought: “I feel so sorry for this guy.” Whenever I did, I was shot down with a quick, “I don’t. He did something he shouldn’t have done and now he’s paying the price.”

It really got me to wondering: at what point in a new nurse’s career does he or she lose her compassion for the patients? I am SUCH a bleeding heart it’s almost embarrassing. Seasoned nurses say that in time, you learn to not become emotionally involved because it drains you. Does that mean that you stop caring? Always? Do you care less because someone “deserves” the medical issues they’re having? What’s a good fit, professionally, for someone who believes in second chances and who actually likes becoming a little bit emotionally invested in her patients? I don’t want to be gulliable. I don’t want to be a pushover. But I don’t ever want to stop caring, either. So where’s the happy medium?

Fred’s up for parole next April, he says. I’m such a pollyana I actually hope he’ll change his ways. Get a “real” job. Make something of his life. Help kids. Change. But I’m also a realist. He probably won’t. It’s easier to stay with what we know than to change. Change is scary. I don’t know. The whole thing just makes me sad. I wonder about the circumstances of his life that led him down this path. I wish him all the best in the world. I won’t ever forget the first federal inmate who came under my care, that’s for sure.

I had wondered the same thing, so many times, but always managed to explain it away as stuff I couldn’t understand about the disease process because I was young, because I had no medical background, etc. Memories of hospitals, nursing homes, hospice nurses, doctors, chaplains, and therapeutic harpists (good god, how ridiculous!) swirl together in my head when I think back to the two year period in which both my parents died.

Now that I’ve spent a year working in hospitals and recently completed a micro class focusing on infectious disease process, it occurs to me that both my parents probably died of infections, not “complications of MS,” as their death certificates state. And that makes me really sad and kind of angry. Could their deaths have been prevented? Postponed? And at what price? I mean, their quality of life pretty much sucked anyway. But could we have had a few more years with them? Could they have hung around long enough to meet their grandson? These are the questions that keep me awake at night.

Infections are a really, really scary thing. Like, I’d never realized how scary. I mean, they’re not terrifying to normally healthy people, but this weekend at work, I got to wondering how many patients in hospitals actually die by infections gone wild. I surmised it’s most of them. Then I felt really stupid, like, “You’re a nursing student halfway through school! You should know this stuff!” But should I, really? Instructors teach, “Infection. Bad.” But I can honestly say that I don’t ever recall a single instructor, or even a preceptor nurse, saying, “Most of the people in hospitals don’t die of their disease, it’s the infections that do them in.”

Case in point: This past week, we had only four patients in our ICU. Three of them were eerily similar: all females with end-stage cancer. One was 50 with lung cancer, another, 73 with lymphoma, and the third, a mere 45 years old with cervical/ovarian/uterine cancer. All three are on vents. All three families are in a pretty good amount of denial about the status of their family member. And all three patients have out of control infections that are killing them. But I never hear the doctors or nurses say that this is the problem (except in rounds or out of earshot of the families): they blame the disease. I don’t get that. I mean, the families know that this one’s got MRSA and this one’s septic, but whenever I hear the doctors and nurses mention that to the families, it gets really downplayed.

When is it the disease itself, and when is it the infection? I’m really confused and perplexed about this. I have an older friend whose even older sister passed away last week.  Again, she had a ton of other medical conditions (diabetes, heart problems, etc.), but she was also septic. And THAT’s what killed her. But that’s not what the family was told.

This bothers me. I feel like I don’t “get” something I’m supposed to get.  Do most really ill patients in hospitals ultimately die because of infection? Or because of their disease? Or some combination of the two? And if it’s infection, what can we in the hospitals possibly do that we don’t already do? Infection is a tricky thing. Even when they teach us aseptic technique in lab, I find myself wondering things like, “As soon as you open that sterile package, the stuff in it is exposed to air, so isn’t it now ‘dirty’?”

I don’t know the answers (obviously). I only know that this has me very confused and questioning. And a little sad.

I am loving my summer externship. Loving. It. Like giddy one minute, emotional with tears welling up in my eyes the next. I’m at a mid-sized hospital on an ICU and I’m seeing and experiencing things that are blowing my mind. I’m only four shifts in, and I’m wondering if maybe this was a “meant to be” sort of a thing. I’ve gotta say, I’m feeling a sort of pull in the direction of hospice care! And to think I was upset that I got placed on an ICU instead of MCH or the NICU like I wanted. (I got over that pretty fast — as a wise elder family member reminded me, there’s no reason ICU can’t later translate to a Peds ICU or NICU.)

Strangely enough, most of my most memorable and moving experiences thus far have dealt with death in several ways. In the first two shifts I worked, three different families made the noble decision to bring their terminally ill relatives home to die with dignity under the loving care of hospice nurses. I asked the nurses on the unit if this was the norm. It seemed like a lot to me. I worked on this unit in another capacity before the externship and couldn’t remember ever seeing one single family make this decision. Usually, they all want everything to be done for their loved one, often ignoring the wishes of the patient.

Anyway, one of these three cases was “my” patient (not really mine since I can’t sign RN yet, but you get the idea). He was a 70 year old man with end stage renal disease among a whole host of other problems (morbid obesity, diabetes, etc.) We were told that he was admitted because he’d gotten an infection in dialysis. His condition was grave when he was admitted to the unit. His lovely wife was enraged and kept saying, “I blame the dialysis for this!”

His wife and daughters were beautiful souls, forced with making the agonizing decision as to what to do with the rest of this man’s life. The wife was adamant that he would not be going back to dialysis. He told her so before he slipped into a semi-comatose state. We explained that we totally respected their decision, but wanted to make sure they understood that he would not live without dialysis. My preceptor was so awesome talking to this family, despite the language barrier.

The wife and daughters waffled. They had a lot of questions about what he would feel if they allowed him to pass peacefully. They wanted to know if he could stay in our unit with us. When we explained the differences between an ICU and hospice unit, they understood. We talked about placement at an inpatient hospice, or sending him home with ’round the clock care.

In the end, after many tears and a lot of soul searching, they decided to bring this man home to die. They wanted him home for Father’s Day (this was the day before Father’s Day). I’ll never forget them. That Saturday while we made hospice arrangements, and while the family waited for a bed and supplies to be delivered to the home, lots and lots and lots of family came to be with the patient and his family. And the only word I can fathom to describe that entire day was beautiful. It was simply beautiful.

Devoutly religious, much of the day was spent around this man’s bedside, 5 to 10 people at any given time. They held hands and recited prayers in Spanish. They chanted. They placed a rosary across his body. The women wailed. And they sang. These beautiful, hauntingly peaceful hymns, also in Spanish. At one point, a male family member arrived. He hesitated outside the door while they were singing inside. I’d parked myself at a computer terminal right outside the room so I could hear the beautiful songs and chants. He looked at me and said, “I’m afraid to go in there,” (you could hear women crying softly, and some crying not so softly.) I said, “I can certainly understand that, but it’s kind of beautiful in a way, don’t you think?” And a peaceful look came over his face and he said simply, “Thank you,” and went into the room.

Around 4:30 that afternoon, the ambulance arrived to transport the man home. I wanted to go with them. The wife and daughters cried and hugged us and thanked us, and at the end of my shift that evening, I went home with a heavy, but happy, heart.

Thus began my internal exploration of a career in hospice nursing. It’s not a glamorous, intense, fast-paced, adrenaline-generating specialty, to be sure. But in my eyes, it’s a wholly worthy one. Definitely worth some further investigation.

Im not yet exactly sure what I’ll do with this site — what will become of it — but I guess that’s part of the experiment. I do, however, know a couple of things:

1. I’m going to try my darndest to keep it honest and true. My husband says I’m prone to exaggeration. He tells me this about a million times a day, and it is SO not true! Ooops! See? There I go again, exaggerating. The point is, I’ve read a lot of nursing blogs, and sometimes I think they might be a little, well, embellished for dramatic effect. I know I have a tendency to overdramatize things, so I’m going to work on avoiding that here.

2. I’m also going to try really hard to keep this as anonymous as possible, in honor of those really perplexing HIPAA laws. This will be difficult for me, too, as I tend to like to tell things in as much detail as possible.

I know I’ll think of more “rules” as I wander along, but for today, I think two is enough, yes? I look forward to sharing my lil’ ol’ journey with the vast blogosphere out there. Stop and say hi sometime, won’t you?