Thanks Jim.
We had my mother in law’s pain managed quite well with Fentanyl patches and oral opioids for breakthrough pain for her metastatic bone cancer. We cared for her at home around the clock 24/7 for months and she had very little pain. We had it titrated quite well, and coordinating with her oncologist and our pharmacist, we gradually increased doses of one or the other as breakthrough pain occurred. We had a visiting home hospice nurse (my mother in law’s decision, not ours) who was concerned one day when mom had some pain in her side. In hind sight, it was a met in her rib cage, but the hospice nurse wanted her checked out at the hospital. My wife had been with her 24 hours a day for weeks, and when she was admitted, they told us to go home and get some rest. They admitted her to hospice on the hospital floor for “pain management.”
They discontinued her Fentanyl patches and Vicodin and started her on the hospice pain protocol, liquid morphine, at 5mg every two hours. That didn’t touch her pain. When we stopped in the next day, she was writhing in agony, saying, “Lord, please take me now. Lord, Please take me now.” We were beside ourselves, we had managed her pain for months with very little major discomfort. We asked the nurses what the hell was going on, and they said, “Well, she has to request the pain medication, and she hasn’t requested any.”
She didn’t know she had to request it, she didn’t know where her nurse call button was, and she couldn’t reach it due to the pain if she had!
So we had to stay there at the hospital and go request it every 2 hours for the next two days. And 5mg of liquid oral morphine is NOTHING for someone who had been on Fentanyl patches and oral Vicidin for breakthrough pain for over a year.
She deteriorated rapidly and we had to BEG them to increase the morphine dose. They started her on long acting morphine pills (MS Contin) and we finally got her back home and spent days fighting with the hospice and their pharmacy contract company to get her back on the Fentanyl and Vicidin.
We were talking to a pro-life Catholic hospice during this for advice, and they wanted to know what the local hospice was planning for pain control once mom could no longer swallow, a point which was rapidly approaching. The local hospice said they’d simply give her the MS Contin pill as a suppository. You don’t roll over a woman with a history of spinal metastasizes and vertebral pathological fractures to give them a suppository for pain control several times a day!
She was becoming incoherent, repetitive, could no longer carry on a conversation, and was rapidly dehydrating.
So I finally blew up and coerced them (I won’t go into details, but it wasn’t pretty) into putting her back on the Fentanyl, and starting an IV for hydration. (It took them 5 days to get the IV order filled!)
As soon as she was rehydrated and the morphine was washed out of her system with the IV hydration, and the Fentanyl patches took effect, she was able to talk and carry on a normal conversation once again, and had better pain control without agitation or confusion compared to the morphine.
Our experience with hospice was not the wonderful experience others desribe. It was a harrowing experience in which we had to fight 24 hours a day for proper care. And I don’t have the energy to relate the battles we had to fight for proper care for my father in law, who passed away at home under hospice care (again, my mother in law’s decision, not ours) two years ago.
And why did they insist on the morphine instead of the Fentanyl? We’re still not sure, but Morphine costs pennies and makes the patient quiescent, which makes for less demands for active care and assistance. Fentanyl is expensive and the patient can maintain their activity level.
So that’s some of my direct experience of palliative care (in Fr. Gerard’s case) and hospice care (in my mother in law’s case) so my opinions on this subject are not based on hearsay.
And I’m in routine contact with the Hospice Patients Alliance, which fields calls and takes emails on cases like these every day. The stories are harrowing, and incredibly sad.
There are still some really good hospices and palliative care services, and even in ones that are questionable, there are truly angels or mercy doing their best in a terribly imperfect system.
But it is an industry that needs intense scrutiny.
Oh, I forgot to mention, abruptly discontinuing the Fentanyl should just not be done, and it caused all the classic symptoms of acute Fentanyl withdrawal, on top of her metastatic pain.
Dude, you claim to be a doctor and for now I’ll give you the benefit of the doubt. In my time on FR there have been dozens claiming to be this and that. Maybe you are and maybe you aren’t.
If you are a physician you had a huge advantage dealing with your profession that most here will never have. You need to realize that. If the average Freeper started arguing over medications and dosages with “professionals” they’d be ignored at best or be accused of aiding an addiction at worst.