Frustrating phone call

 

TL/DR - frustrations with medical, but hospice is moving forward

One of the most frustrating phone calls of my life. Let me start out a month ago. I had my annual recertification/checkup call w/Dr W.

At that time, I mentioned that my body has been wearing down, and I was thinking of switching to hospice. I believe Ricky (my liver) has started the final countdown, and I honestly think that I would not survive a trip to SLC (where the nearest hepatologist is). A couple of weeks later, after some pretty vile dry-heaving, I decided it was time. I wanted to go ahead and transfer over to hospice care. I called my Drs office to set up an appointment (which was a week and a half out), but I also sent a message saying "If you can send a referral to my HHC/hospice provider just from me letting you know, great, otherwise I'll see you in a week and a half." I believe my home health care nurse also sent a message saying "hey, Deci's wanting to switch".

I believe that my doctor (or possibly just his nurse, T) took that as me trying an end-run on insurance/medicare. There was a bunch of back and forth, ending up with me sitting on this phone call. I also sent him a letter outlining my reasoning, so that I'd be prepared, as I've been having difficulty with getting my words out clearly. I also got H (the nurse over the Hospice program I want to switch over to) to sit with me so that we both heard the same words at the same time and she could help me explain myself.

I think I was right about offending my doctor, because he came in flashing his "hospice director for 8 years before I came out here" credentials, started out telling me that he didn't think I was a candidate for hospice because he doesn't think I'm going to die in 6 months.

We went over my various diagnoses - Hank, Ricky, COPD, Diabetes, hernia, etc... My being unable to walk 3 minutes. We talked about me not being able to leave the house without severe panic attack, and that it took me two days to recover from a trip to Roosevelt - seeing any specialist is out of the question. Yep. He agreed with me. But can I point to where it says less than 6 months? He thought that a hospice level of care was probably exactly what I needed at this point. He just wasn't willing to put his name on it. Because he doesn't think I'm going to die in 6 months.

I asked him what else he would recommend, if not hospice? Well, he offered up going into the senior living/care center attached to the medical complex, because that way they could wheel me over for my appointments. My appointments that accomplish nothing. After 30 minutes of what felt like justifying my pain, he finally came out and admitted that he was not going to send a referral, but that I could call Dr. M, and he could admit me - he even sent a note to Dr M warning him I was coming.

Damn it, we need a middle level between GP and Hospice - maybe call it stability? (Roger has helpfully pointed out that stable and I really don't belong in the same zip code.) But basically... acknowledgement that I am not going to get any healthier. There is no chance that I'm going to suddenly see the light and walk, so there is no reason to keep driving 3 hours each way to the tabernacle.

This isn't me giving up.