I'll just do it myself: Independence in home health

Scenario: your patient has an SpO2 of 48% at rest and on oxygen. Scenario: your patient's wound is suddenly giant and bleeding. Scenario: your patient is so agitated that she is trying to pull her own fingers off.

Those kinds of things sound bad. You'd go get a coworker to help you, right? You can't do that in hospice.

Independence and responsibility are things I idiotically overlooked when I started case managing for hospice, but they are at the forefront of challenges (and satisfaction) with the job.

In my job, I am frequently the only health care provider who sees the patient. That means if I miss something, it's not going to be caught by anyone else. I'm the only one who intimately knows all the medications the patient takes and knows every square inch of their skin and every crackle and wheeze in their lungs.

What's in my car is all I've got to handle anything that happens. What would you put in your car to deal with any imaginable circumstance? Sometimes I physically long for a hospital room with oxygen and suction right there on the wall, along with toys like otoscopes; a cabinet filled with bandages, Kerlix, and gauze; gloves on demand; a clean sink (with running water); and other nurses who can hold stuff for me. (Ever tried putting a Foley in a woman who can't get out of her recliner? By yourself? While staying sterile?)

In hospice, I don't have any of that. If I've done my job right, I'll have an oxygen concentrator to work with and a box of gloves in the house, but otherwise I either can't control what I'll need (e.g., running water) or it's just not feasible (e.g., I can't possibly foresee what types of dressings I'll need for any possible wound). Running to the office for supplies is almost always also not feasible. I work in rural Kansas, and it is not infrequent for me to find myself an hour away from the office (and from anything else).

This is scary. It didn't scare me at first because for some reason I didn't realize how alone I'd be. It took a succession of "oh, crap" incidents to scare me, those ones where you think, "Well, this looks bad. We should call someone." And then realize that you are the someone who's been called.

Now that I have realized how scary things can get at any moment—because forget the Emergency Department: hospice is hands down THE MOST unpredictable environment I've ever worked in—I have found a sense of challenge and achievement in the unpredictability and reliance on my own skills and experience. I have become very good at walking into impossible situations and having good assurance that I will end up figuring something out. That's pretty cool.

It's not just patients who rely on me, either. Physicians do. I often think it must be nerve-wracking for them. Here they are tasked with providing end-of-life care to people they will never even meet, and they have to rely on me, often ONLY me, to pass along accurate assessments and recommendations. If a patient is having trouble breathing, is it likely pneumonia? Or could it be their CHF? I have to decide what to assess and pass along, and I don't get to use toys like labs and X-rays to figure it out. I'm usually also the one who has to negotiate whether the patient and family will want to treat the problem in the first place, because in hospice we walk a thin gray line between treatment that increases comfort and treatment that unnecessarily prolongs life.

I negotiate a lot of what I call "curiosity treatments." These are things that would be interesting to know but in the end will not change what we actually DO for the patient: things like X-rays, chemistries, and even UAs. Getting a UA on a patient with signs of a UTI would be a slam dunk in the hospital, but in a home hospice patient, is it worth the hassle and trauma to the patient to do a straight cath? Will I even be able to get the sample to the lab in a reasonable amount of time? We often just presumptively treat that stuff because it's more timely for the patient and the results of the lab tests end up being relatively unimportant. Physicians rely on me to figure this stuff out.

Somehow this all works, I think largely because of teamwork. Perhaps ironically, the more indepently you work, the more important having a good backup team becomes. Without one I'd be truly alone.