I Love Hospice
I knew going in that I would love being part of the hospice program. Betsy and I between us had three elders who benefited from their care. I had heard and read enough over the years to be convinced. I also knew enough situations where the patient “arrived” late to the program and would have benefited from joining earlier.
So, I called the High Peaks Hospice offices even before we had our “bad news” appointment last week. I apparently caused something of a stir. I may have been the first patient in this program’s history to make the initial inquiry call myself rather than through a doctor or family member. Talk about an easy sell. As a quick description hospice is devoted to making the patient feel as comfortable as possible towards the end, exploring patient wishes and avoiding high tech interventions. If needed narcotics are used more freely since the cost of getting “hooked” is pretty minimal compared to the benefit. The hospice mission is much more complicated than this, but hopefully this works for now.
There is plenty that we still have to learn about how it all works, but just in the first week we’ve enjoyed this special community. Our oncologist, at our request, made the initial referral. Hospice, in turn, reached out to the local family practitioner who we had made contact with earlier in the summer. Hospice needs a local doctor to work with on prescriptions, other orders, etc. ( a quick digression here – I’m describing what we are finding with the program here in the High Peaks. For my Ashland friends, the local hospital runs a wonderful hospice program and I’ve heard great things about it. Some of the arrangements and practical details may be different back there.)
We had a long (tiring for me) intake visit with my case worker nurse Wednesday morning. They had lots of medical records but there always seemed to be more questions. Carol, the nurse, was sympathetic, competent, and thorough. Part of this was a site visit too, to see the living situation here. And she did a very thorough inventory of my meds.
Here’s one reason I love hospice. Later that afternoon I awoke with a fever – 102. Hospice patients and family members are told to call hospice when a medical question or concern comes up. Betsy made the call, got reassurance that some tylenol would be a good first step and to report back with my temp as the day progressed. I just know that if I were in Ashland and calling my oncologist that they would have me hustled off to the ER for more tests and IV antibiotics. The low tech route was fine, although they could have escalated if need be. Betsy had to report in once in the early evening via the on-call system and that worked fine. End of the day I’m feeling better, and we’ve avoided several uncomfortable hours in the ER.
There will be more reasons to share on why I love hospice as time goes on.
Now, backing up a bit on the clinical stuff. One (final?) intervention thing we agreed to was aspiration of fluid built up in/near my lungs. The most recent CT scan had shown a very large area that could be fluid. Getting rid of that fluid had the potential to improve my shortness of breath and also increase my energy level. So we went in Tuesday for the procedure. It was one more reminder about how uncomfortable care can be. The procedure was CT-guided, so that a radiologist uses a CT machine to pinpoint the place where a needle would be placed and a cat tail drain stitched in. The actual procedure took less than half an hour. I was under a form of conscious sedation and was reasonably comfortable. The hardest part was the 2+ hours lying in the uncomfortable pre-op bed and dealing with the little gotchas. “Got an IV port?” Great. The IV stuff can go through there and avoid a separate stick. “But, wait..” They were concerned that my clotting factors were a little low and they ordered Fresh Frozen Plasma and it turns out the size needle used with the IV port was a tad too small, so a separate IV line had to be started anyhow.
Then post-procedure we hang out in the same uncomfortable room. There are good reasons to make sure the procedure holds, the lungs don’t collapse. etc. but it adds to the day. In around 9:30 am – out around 4:00 pm. It all seems to be working. “just smaller than a tennis ball” of fluid came out in the procedure and I have a drain and collection bag that we’ve emptied twice. And, some hopeful feeling of reduced symptoms.
Our fellowship cup runneth over this weekend. Just about the whole combined Gentry and Goddard families, including Wil the famous grandson and my sister Mary will be up here for the Labor Day weekend.
And we’ve had another one of those examples of how the world is full of grace. Betsy’s dear friend from law school, Christie, contacted us on Monday and offered to fly up, drive herself from Albany, and then spend the week as Betsy’s companion. We can’t say enough about both Christie’s generosity and the sanguine effect it had on Betsy this week. Truly another angel.