Hospice: what would you say...you DO here?

Tell someone "I'm a hospice nurse" and here is the sequence of responses, like, 99% of the time. 1. OMG, how do you do that job? 2. So what do you actually do?

I'm a hospice RN case manager, which may be different from "hospice nurse." In fact, case management is an area of nursing I had no idea existed until I wandered into it, but that's another post. I do have coworkers who are not case managers. They make visits and take call, but not the rest of it.

I see dead people. The obvious. My patients pretty much all die, so yes, I do spend a fair amount of time around dying people and corpses (see my post here). Although I've found it's a legend that people prefer to die with someone there—they often wait until everyone has stepped out for coffee or a bathroom break—it's true that I'm there a lot. I make sure my clients' last hours are peaceful and that they're comfortable and have everything they need and want. Sometimes that includes staying with them because their families can't be there and would prefer I did. Sometimes it happens because they live in facilities that just aren't staffed for extra attention to the moribund. For any hospice patient who dies, one of us (the patient's regular case manager or an on-call nurse) attends the death; even if the patient has passed, we handle all the stuff that families just don't want to deal with when a loved one has just died. We call the physician, we call the mortuary, we perform postmortem care, and we almost always wait until the mortuary has retrieved the body. We ensure that medications and equipment are dealt with.

I make visits. The bulk of my job involves visiting the clients on my caseload. I have 10 to 15 generally, and most have to be seen twice a week. When they decline or are temporarily sicker, I see them more often, up to daily or sometimes a few times a day. Contrary to my perceptions before this job, most hospice patients live in facilities. I do have patients who live at home, but by far most don't. At a typical visit, I get a full set of vital signs, assess the client head to toe, see how the caregivers are doing, make sure the hospice aide is doing what is needed, and find out whether any services are needed or no longer needed, such as social work or chaplain visits. If it's a facility patient, I also read the facility chart to see if anyone has written new orders and find out whether the client is taking or refusing medications and so on.

I drive a lot. Related to previous: hospice will wear out your tires. The home patients never live near each other, so I drive not only between facilities but also to some very interesting places. Four-wheel-drive is imperative, as is a well-stocked travel bag. There are very few things that cannot be found in my travel bag, unless I'm an hour away from the office and need it urgently.

I have adventures. Here are some things people have said to me. I do work in Kansas, where clearly you don't have to go far to be in the middle of nowhere, but still:

  • Oh, and watch out for the hateful Billy goat when you get there.
  • After you drive around the corner of the cornfield, you’ll see a sign that says BRIDGE OUT. Go down that road. It isn’t really out, we drive over it all the time. But the next one that looks really scary is actually out, so you’ll have to cut around on the dirt road….
  • Go past where your GPS says it is, because you'll be in a corn field. Keep going until you get to the hay bales. The road you need looks like a cow path behind some trees.

I coordinate. An enormous number of resources come together to provide end-of-life care, and I'm in the middle. Each client has a primary care physician and a hospice physician, who may or may not be the same person. Most have a lot of comorbidities and physical limitations. Most take a lot of medications, and it is my responsibility to ensure that everyone has the same list and that they have enough refills. That can be daunting in the middle of the night when someone needs morphine right now, if not sooner, and I need an original written prescription for it. I am the go-between for the family and the facility staff, when applicable. I make sure that everyone has enough oxygen tanks, Chux, and oral swabs. I make sure that the wound care nurse and I are on the same page. Sometimes, I do wound care, take care of central lines, and change catheters; sometimes I collaborate with other nurses who are doing those things.

I document. Hospice = Medicare = government = paperwork. In hospice, if you didn't document it 6 or 7 times, you didn't do it. Even my least oriented clients regularly remark, "honey, you sure do a lot of writing. Are you writing a book?" I document visits, deaths (although oddly, hospice deaths entail about 10% the paperwork of a hospital death), twice-monthly team meetings, recertifications, and random forms with names like F-309 that my boss puts in my box. I keep track of things like 1-pound changes in weight, for everybody.

I advocate and educate. Palliative care is poorly understood, and I understand that because I am still learning about it myself. The focus of it goes against the grain of everything else most medical professionals have been taught, and people naturally resist. "I don't want to give her enough pain medication because it will snow her" is a common example that requires education and advocacy. I do a lot of family education about the dying process as well because most people have never actually seen a person die.

I am available. I'm on call a lot. At all times someone is on call and someone is on backup call, so chances are good that one of those someones will be me on any given day. Sometimes my phone doesn't ring. Sometimes it rings all night but I can solve all the issues over the phone. Sometimes I am out all night (happily not all that often, because between two full working days, that is what I call "losing the hospice lottery"). Death doesn't work on a business schedule, and neither do admissions or changes in condition. This is the only part of my job I do not like. It simply makes it difficult to schedule anything outside of work and increases my feeling that my job is my life.

I am present. Not the same as available. Hospice involves discomfort: for the client, their families, and often me. The natural inclination when confronted with extreme distress is to go away from it. My job is to go toward it. Being present means I don't close up and avoid pain and emotionalism or really unpleasant sights, sounds, and smells. It is radical acceptance.

This barely scratches the surface, but hospice is a hidden specialty. When my boss hired me, she told me it would take 6 months before I kind of thought I knew what I was doing, and I ignored that because I catch on quickly to nearly everything. Now it's been 6 months, and I kind of think I know what I'm doing; unfortunately, that's a bird's-eye vantage point from which I am now able to see all the complicated twists I don't know about yet.

Me being who I am, I do encounter the weirdest possible situations that require consultation and result in "I don't know. This has never happened before." I have a gift. So often, it's learning how to navigate problems that is more important than knowing how to fix a particular thing (as with nursing in general). My ER experience is my biggest prop. I would have thought ER and hospice were as far apart as specialties could get, but the longer I am in hospice, the more similar they seem. That feeling in the ER of "oh my God, everything is flying at me at once" occurs all too often in hospice, but years of triage help me navigate it.

If you have hospice questions, ask in the comments section or via the contact form, and I'll try to answer them. It's a misunderstood and not-understood thing!

Photo credit http://mamepika.deviantart.com/art/little-grim-reaper-49803995