The Work, or the Job

There is the Work, and there is the Job. The Work is what I do at the bedside, one on one with the patient or the family, or both. The Work is what I love the most, and what stimulates, inspires, and nourishes me.

Then there is the Job. The Job is the Monday through Friday going through the day getting it done part. I love this part too, although lately it's been a bit tough. My Job, primarily, is to provide medical care to patients in an inpatient hospice house. These patients are all what's considered acute level of care, meaning that they have uncontrolled symptoms in the context of a terminal and life-limiting illness. About 50% of them leave the hospice house and either return home or go to a nursing home. The other 50% of them die there. I make rounds, examine them, get histories, write orders, and answer questions from the patients and families. Sometimes there are conflicts that need to be resolved among the family members and I help with that. Sometimes they need help figuring out what the goals of treatment should be. Of course there is loads of paperwork associated with all of this, and similar loads of government regulations that must be met.

Sometimes I go out and see hospice patients in their homes, which is a completely different experience. The focus at home is usually not on symptom management, although that is part of it, but on disease progression. You also see how people manage their illness, and being chronically ill, and having disabilities. In many ways, it's very inspiring.

The last two weeks, I've been really immersed in The Job. It's been busy, and we've been short staffed. The Work is all part of it, interwoven in all I do, but harder to think about and tease out when I'm moving from one task to the next. Have the patients been seen? Do the nurses have the orders they need to give the care? Has the documentation been completed? What about the other paperwork? and the checkout note for the on-call? Oh, this family member wanted a call back, and this one needs FMLA paperwork completed.

This is not meant to be a complaint, just the reality of what's been going on. I think this is the way Real Life works: sometimes you just have to live life, and other times you get to think about it. I like to write about what I'm thinking, and I have several upcoming posts in my head. Right now I have to be happy with where I am in the process and know that it is a process.

The Little Things

Many times it's the little things that seem to mean the most. A patient came off of dialysis and we all decided that fluid restriction seemed pretty stupid. Water never tasted so good. Another patient came in wanting a cup of coffee. He had been in a hospital where no one had given him coffee for several days. He had been given iced tea and milk, but no coffee. He enjoyed that cup of java more than anything else we did for him, at least at first.

The best thing, is it's so easy to do these things. There was nothing difficult about getting either the water or the coffee. Either would have happened in the usual course of events. But for these patients, these were not ordinary, or usual, they were special occasions. The satisfaction for me is being a small part of making this happen for them.

For this reason, I never order special diets for my hospice patients. I do not impose any limits. If the patient wants to impose limits, that's a different matter. But I think that at this time of life, what is the worst that can happen? The person dies sooner? I also never order for a patient to be NPO. If a person is unable to eat, we note they are "not eating", which is more a statement of function than a restriction.

There are many other "little things" we do that mean so much. The extra blanket, the fan for the COPD patient, many things. But taken altogether, they become a large part of what makes hospice care different and special.

Time for renewal

It's been a busy week. I worked last weekend, with several new admissions which means new history and physical workups, and then this week the pace never let up. Yesterday was my birthday, and in spite of being so busy with patients, everyone gave me a nice little party with cake and ice cream, flowers and balloons, and cards that everyone signed. It's a measure of the close feeling we have for each other that we get to do this kind of thing. It was nice being on the receiving end.

The patient flow was hectic all week though. I don't know all the figures but it was like a revolving door, with admissions, deaths, and a few discharges home. I really felt like I was on a treadmill much of the time just to get the work done. The compensation for working last weekend is that I have a 3 day weekend now, and it's time to rest and recover.


Recovery is vital to being able to work in hospice for the long haul. This work is very stressful, even more so to me than critical care was. Burnout is a common occurrence, and you have to make a conscious effort to renew your own spirit. So this weekend I'll be taking walks, reading some fiction (I like mysteries), maybe sitting on a beach somewhere. I'll be spending some quality time with my family. Monday when I return to work, I'll be ready once again for the challenges.

Dying badly

Some people do not die easy. It's difficult for me to deal with, because I want to "fix" whatever is wrong, whether it's pain or anxiety or shortness of breath or whatever. But sometimes, even with all of that having been looked at and taken care of pretty well, the person is still thrashing around. It's as if they are fighting so hard not to die, they are fighting against the medications I've used to help their symptoms. I try calming words, and presence, and sometimes touch, but sometimes nothing works. It's very frustrating. More than that, it's humbling. After all, I don't have to be perfect do I? Well maybe I think I do. When I have my successes, it's so easy to think it's because I'm so smart and good at what I do, when really the patient had a great deal to do with how they responded. People have to be receptive. I am always amazed when some people fight death to their literal last breath. It doesn't happen often, thank goodness, but it does happen. I leave them feeling totally wrung dry, emotionally drained, always wishing for the happy ending but taking some comfort in knowing that the person did it "their" way.

Pain management success

One of the things that I LOVE about my job is the impact I can have on people with pain. Consider this woman: 46 years old, ovarian cancer, metastasis to the bone, pain in her right shoulder, lower back, and right hip. When I first met her she was on very high doses of methadone (good drug but not working for her), and was still doubled up in pain. She had not slept in days, except for naps disturbed by dreams. She had lost 25 pounds in 2 months because she was unable to eat due to the pain. I put her on a Dilaudid infusion at 5 mg per hour with a 3 mg bolus every 10 minutes. She used the bolus very little, because the basal rate turned out to be spot on. The next day after starting this, she told me she had slept all night. She was able to walk standing straight up. She was eating. The next day after that, she was smiling. She had again slept all night, but was not sleepy during the day. She was functional. She is still on her infusion at this dose, but we discussed the probability that at some point her illness will worsen and she may need more. It will be simple to increase the dose, just by adjusting the pump. Her hospice nurse is visiting her frequently and checking for any side effects, changing the tubing and bags as needed, and will let me know of any issues. Seeing her move about, eat normally, and function normally is such a rush for me. I don't know how long this will last, but if she gets even a week (although I think it will be much longer) of pain relief, it will be worth it.

Introduction

This is my first time at this business of blogging. I want to write about the wonderful world of the Hospice NP, the good times and the bad. Some people ask how it is I, and others like me, can do this work, and hopefully this blog will answer that question. In a word, because it's meaningful. I know at the end of the day that I mattered to someone. But it's much more than that. So in the coming days and weeks, I hope to fill the posts with my thoughts and feeling about what's going on in my life as a hospice NP. If it strikes a chord, write a comment. I'd love the feedback.