I'm having a hard time wrapping my head around hospice. Other people have tried to explain it, but to me it doesn't make sense in my mother's situation and just seems it would hasten her death or suffering unnecessarily. She has been recommended for it due to nonalcoholic cirrhosis, now hepatorenal syndrome, and congestive heart failure (in addition to her many other non-fatal chronic health issues). I'm not sure if it's what we want at this time, though.
She has never received treatment to "cure" her liver. We always knew both that the only "fix" was transplant, and that she wouldn't be a candidate. Neither of us are under any illusions about the reality that she'll die, soon, from this. She's on meds for her liver, but these are for her mental state, to keep away hepatic encephalopathy (buildup of toxins in the blood affecting mental function). I was told in hospice, these meds would be discontinued. I don't want them discontinued. To me, they're maintenance meds to preserve quality of life and keep her comfortably clear-headed/rational, not to aggressively cure her disease/prolong life. Her most recent bout of encephalopathy was horrific; not just lethargy and somnolence, but hallucinations and agitation and muscle spasms that left her unable to sleep even though she was clearly exhausted. Some hallucinations left her frightened. I do *not* want her going through that again for as long as we can prevent it. I explained this to the hospice nurse, who said encephalopathy will return (no argument here; I'm sure there will be a point at which the medications do not work, but we aren't there yet) and that they will give her Ativan for the agitation. I'm unable to understand this. Why would they not give her medications that will prevent her from reaching the state of encephalopathy in the first place instead of letting it happen and then drugging her into a stupor?
Hospice made sense for my grandfather, who was in advanced stages of cancer. There was literally nothing left to do for him except give him pain meds and keep him out of it until he was finally able to die. But my mom doesn't have cancer or anything that is killing her in horrifically painful ways, no extreme pain, doesn't receive definite life-saving treatments, like chemotherapy, that would make sense to stop. She has a cognitive mental state as long as she gets enough sleep and can keep the toxins out of her blood (again, what the medications are for, not to "cure" her liver). Her "causes" (toxin buildup) can still be treated effectively so I don't feel we need to resort to treating the "symptoms" (encephalopathy) at this time. When they can't, it'll make sense to me to not give her drugs that are ineffective. But denying them now feels to me like ignoring modern medicine to go back to the ages when palliative care was all they could do because there literally was nothing else. We're not in those days anymore. I don't want her dying prematurely simply because she was denied medications that keep her stable, wasn't allowed to try to get up if she wants to (she told me yesterday she wanted to try to get up-whether to walk or sit in a chair, I don't know, but they wouldn't let her; as far as I know they've not wanted her to get up, to see OT or PT/do exercises, any of that, even though she isn't even in hospice yet-and past experience has taught me that hospitals usually push getting out of bed pretty hard, even if the patient *doesn't* want to). I want her living a normal life for as long as possible, not having "normal" taken from her by decision rather than necessity. I want us to be able to spend time together as long as possible, rather than her being drugged into unconsciousness when she doesn't need to be, some of her last days spent with me sitting at the bedside of a sleeping patient rather than us being able to talk and enjoy our time together.
The hospice nurse will talk with her and explain this to her, because it's not my decision to make. If hospice care is what she wants, she'll receive it and I'll be glad to help her obtain it. But I don't think, just based on the conversations we have had, that she's going to like it when she's made to understand that they're going to stop drugs that currently work to keep her coherent and participating in her life, in favor of keeping her sedated. We can always begin hospice care later when she truly needs it, and I'm sure she will. I just don't think the time is now.