Hospice.

I spent yesterday with a hospice nurse. It was a very sad day, though I did learn quite a bit about what hospice can and cannot do for dying patients.

The nurse, A., was extremely funny and extremely German. She was also the scariest driver I've ever encountered: while I was clutching the door frame and saying my final goodbyes in my head, she was eating macaroni and cheese and driving around rural PA (read: crappy roads) with NO HANDS on the steering wheel. I don't claim to be the best driver either, but the ride was rather more thrilling than I set out to experience when I woke up that morning. At any rate, we didn't get killed, but I was only too happy when we arrived back at the office in the afternoon and I drove myself back to the hospital campus.

Anyway, the day started in the office. For about two hours, A. and the other nurses made various phone calls to patients, mostly to check in with the families and be sure that they were doing okay. After that business was taken care of, A. and I set out to visit a 69-year old man with metastatic colon cancer. The guy and his wife were very pleasant, though he has only been in hospice care for a few weeks, so he was not as visibly ill as I was expecting. The patient stated that his pain was being effectively managed, and that he was able to go about his daily business without too much trouble. A. went over his list of medications, performed a quick physical exam, and changed the dressing on the incision on his belly from his last surgery. It was a pleasant visit to be sure, but it was not exactly what I expected.

The next case was much more what I had envisioned. We visited a rather run-down and unpleasant assisted-care living facility. The patient was a 97-year old man who had been in hospice care for a few months. His condition had deteriorated the previous night, and A. suspected that he had an aspiration pneumonia or other respiratory infection. Whatever the cause, the poor man's breathing was so raspy, it sounded like his lungs were underwater. A. had to leave the room for a few minutes to call the family and she asked that I sit with the patient. I stayed in the room until he fell asleep, but I must say, it was terribly difficult listening to his labored breathing. At one point, he must have shifted slightly and his breathing paused for a second, but my own heart skipped a beat when I heard the sudden silence. For a moment I seriously thought he had died. That wasn't the case; a second later his breathing resumed, but I had to step out of the room and calm down.

Aspiration pneumonia or no, the moment we stepped into that room I knew that the patient did not have long to live. There was just something about the way he was lying there, something so painful about his wasted limbs and rattling breath that made me think his death was going to come sooner rather than later. As it happened, his daughter requested that he begin taking antibiotics to combat his possible infection, but as A. said as we left the facility, she didn't think the medicine would do anything more than make his breathing more comfortable. It was just a terribly sad situation, and I can't say I was unhappy to move on to the next patient.

The final patient was a 77-year old woman with severe congestive heart failure. This patient had been in and out of the hospital multiple times, and though she was not yet a hospice patient, A. was convinced that she was going to need hospice services soon. The purpose of our visit was to check on the woman and to also begin the conversation regarding enrolling her in hospice. The woman was, unfortunately, in complete denial regarding her condition and insisted that she wanted to "wait and see" if her illness improved, and still wanted to "do everything possible" in terms of treatment. A. tried to explain that the only difference between hospice care and the treatment she was already receiving in the ER every time she had a heart episode would be that under hospice care, she would be asked not to call 911, and that the hospice workers would manage her symptoms with exactly the same medications from home. The woman was still unconvinced by the time we had to leave. I had to wonder exactly what her physicians were saying every time she landed in the hospital; surely they knew that her prognosis wasn't so great? I guess end-of-life issues are difficult to discuss with patients who don't want to believe the reality of their situations. I imagine that the woman will be forced to concede soon, as she stated herself that living at home was becoming increasingly difficult and that she needed more help than usual managing her illness.

Anyway, as I said, it was a sad day. I don't think I could be a hospice worker or palliative care physician, but I greatly admire those with the fortitude to help terminally-ill patients and their families.