Saturday, November 21, 2009


Yesterday ended up being a looooooooong day. Hospice RN Deb called me at 10 am to let me know one of our patients was in crisis. She was not able to leave the family she was with at the moment but planned to get over to our patient ASAP. I left the patient I was with and hightailed it over there. The moment I walked in the room I could see the patient had had a change in condition. Still, I had no idea events would unfold the way they did. The daughter told me she was doing better now, she said she hadn't cried in a few days and it built up until she talked to Deb on the phone. Deb finally arrived and while she worked to get the patient more comfortable, I met privately with the daughter to offer support. She is about my age, taking care of her mother with next to no help from anyone else. The patient was getting weaker and it was becoming hard for the daughter to clean and reposition the patient by herself. I decided to clear my schedule for the afternoon to do whatever I could to help out, whether sitting with the patient while the daughter took a nap or just being present.

The long and short of it led to a discussion about respite placement. Medicare provides 5 day respite care at a long term care facility under the hospice benefit. We all know how much I hate setting these up but it seemed to be the best option here. The daughter did not want her mom to have long term placement but the 5 day break would allow her to rearrange some things at home (for instance moving her mom's DME downstairs) and have a break from her care. It would also help her figure out whether she could afford to hire a CG (very limited finances and they were already getting assistance from the county) or if another relative would step up to the plate. There's one LTCF that typically makes respite an easy process and it happened to be close by. I called the admissions director and they said they did have respite beds available. I had the information faxed over at 1 pm and prepared to wait. Usually you hear back within an hour or two if the LTCF will accept a patient for respite.

In the meantime the patient had some other medical issues going on. The MD ordered a blood culture and an ABT was going to start. The RN had me call the admissions director to let her know about these new issues and what we were doing to resolve them. It was after 3 at this point; I felt I should have heard something by now. When I let the AD know this update, she asked me if I'd faxed the info over yet. I nearly had a heart attack! It turns out it was still in their fax machine and no one had brought it over to her nor had she gone looking for it, even though I stressed that this respite needed to happen fast. This was mind boggling! She said she'd go review it with the DON right away and get back to me. She called back a half hour later with some questions which I clarified. Then she called back 10 minutes after that saying they needed info on the Pleurex catheter even though the hospice RN would provide care and it didn't need to be drained for another week, which would not happen during the respite. At this point I was beside myself- it was almost 4 on a Friday afternoon, time was running out. I asked her if this was going to happen or not. She wouldn't give me a straight answer but noted that it was close to the end of Friday the weekend before a holiday. I had the office fax over the Pleurex catheter info and my supervisor called over there at my request to review it. Finally at 5 pm we got the answer that they would not take the patient tonight or tomorrow (because they had a complicated patient being admitted) and would only say "maybe" for Monday. Basically we were screwed. The odds of finding an admissions director still working at this time who would be willing to work on a respite placement for tomorrow were very slim. Trying to arrange a respite on Saturday morning is near impossible (I managed to do it once but it took about 7 hours of work.)

We decided to talk plan B. The daughter didn't want the patient to go to the hospital for an in-patient admission. She thought she could get a relative to come over and help over the weekend. A hospice RN would visit Saturday and Sunday. We would try to arrange respite on Monday. However, the MD didn't think that was good enough and pushed for in-patient. When the daughter still refused, the MD demanded that I arrange respite...tonight. Um, hello? I've never been a fan of this MD- she may be great with patients but she micromanages other staff and bullies them- and we don't even work for her! Still, I called a couple of other places. One admission director was actually still there, miracle of miracles, but they didn't have any respite beds. Other places had no admission personnel available. It was 6 at this point and the patient had another change in condition with audible congestion. RN Deb was back at this point and it was determined that the patient was actively dying.

Gears switched again. The daughter was committed to caring for her mom to the end and in their home. Continuous care was arranged. The daughter had a friend come over to offer support. I left their house about 8 pm with everything in place. I commented to Deb that I hoped the patient wouldn't die tomorrow (really today, as I write this) as it's the daughter's birthday. She shared a story from working with another family. It was going to be a family member's birthday and she told them she hoped the patient wouldn't die that day because of it. The family surprised her by saying they hoped the patient would die on the same day. Apparently they are of a religion that believes that the day you die is a celebration (let me know if you know which religion this is.) To be able to share a birthday with someone's death day is very special to them. It's the idea of birth and rebirth. Such an interesting way to frame death. But I still hope this patient doesn't die on her daughter's birthday. Of course, it isn't up to me or the daughter. We'll have to wait and see.

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