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.
I felt like they had an automatic plan of action that was geared toward patients such as cancer patients, with the assumption that she was A. in a lot of pain and B. unable to do anything. They quickly started her automatically on morphine every two hours. She just didn't have *that* much pain; her condition was not super-painful like things like cancer are. I know that morphine also helps with breathing, but she wasn't having breathing issues at that time, either. It's not that I was concerned about her getting addicted or it killing her, more like I was like "but why?" It felt like it was because "it's what you do for hospice patients." (I admit I honestly wondered if it might have contributed to her constant sleep in the last couple of days, simply because a concern with earlier issues had been that her liver wasn't processing her meds well enough and they might be building up in her bloodstream, and part of me wondered if that happened, esp. since one day we didn't give her any and she gradually got better until she was almost lucid the next morning-- I realize this could have been her "final rally," though-- and then back to sleeping when we restarted the morphine. I don't want to be one of those "they killed her with morphine!" people, but the question is in the back of my mind.)
I had to do a bit of arguing to get them to let her get out of bed when she wanted to take a shower. All we had to do was have her stand from bed into a wheelchair, then from the wheelchair to the shower bench. I pointed out that no, I didn't know if she would be able, and if she couldn't that was fine, but we'd like to try. I was bordering on harsh ("she doesn't want to be treated like she's dead yet"). It went fine once we did it and she felt much better after a nice warm shower and getting all truly clean (a bed bath just isn't the same). They were easier about it the next day when I wanted to put her in a wheelchair and take her for a walk outside. We had a great time.
The day she died, the nurse again called hospice. And called 3-4 times over the next few hours, getting message machines, etc. Turned out whoever she first spoke with had called not the nurse on duty but a different one. Error wasn't corrected until at least lunchtime. The hospice nurse didn't come out until early afternoon (she died in the morning). Again, by the time the funeral home showed up, visiting family needed to leave as they had a long drive back home.
I don't know if we just had a round of bad luck with this hospice or if that happens with everyone. Everyone we did talk to, once we finally got ahold of them, were very nice, but it would have been nice if things had been done a bit more timely. Luckily, in my family we're pretty calm and practical people, but for a family who may have been freaking out about a change in condition or a death, it would have been a very difficult wait.
I don't think hospice is bad... I think our experience wasn't ideal. I'm not writing this to try to scare anyone off hospice, and I hope it doesn't. But I think it's important to illustrate that choosing your agency carefully, and making sure to be proactive with them, are a good idea.
You have good questions that all families may ask themselves at some point in life.
Expectations of Hospice are high. They can be met with good communication with the hospice Nurse and all staff.
Hospice care for the patient with non alcohol related Cirrhosis ( ESLD) and CHF pus other illnesses.
My my mom was on hospice for 10 months. She used the medication (morphine) 1 time for shortness of breath in that period of time. All her other hospice medications remained in the refrigerator for the duration. That one dose about 2 mg was given months before and did not end her life. It help s her breathing. Her heart gave out (CHF) as she insisted on a shower everyday. She never gave up. Her body did that.
The physician or medical team determines the Patient has a life expectancy of 6 months or less to live given their current conditions and verified in lab values that indicate serious liver or organ dysfunction. At that time the MD makes a determination a patient is appropriate for hospice and may make the suggestion of hospice care.
The physician signs an order for hospice care first, then a patient with capacity to decide can say yes or no to it. She can always delay it until she declines further.
Second: patient being drugged into unconsciousness. Hospice is only giving medicine with a doctors order to relieve symptoms. It can can be a life saver in the difficult days when the patient is declining. Social workers, Nurses chaplains, home health aides can help with the medical emotional, mental and physical needs to support during a slow decline.
Starting early can have a benefit in that the client symptoms are managed with the least amount of medication needed. The hospice team will review the clients needs at least every 14 days if not more often and if she stabilizes after a month she can choose to return to regular care.
The medication she currently receives that you said are helping now,
When the medication does work anymore a patient will not have a clear mind. Clarity generally doesn’t return. If a patient was to have a rapid decline with liver failure there can be bleeding issues or erratic behavior changes and they could become incoherent and unable to decide herself.
One could find thensuddenly ill prepared to provide all the needed primary care and manage medications.
She isn’t having pain now,
however, she could become short of breath from CHF and ESLD and unable to walk, stand or or talk.
They are keeping her in bed.
When someone is hospitalized getting up out of bed after being in a prone position for even a few hours can be difficult. Symptoms of being light headed, weakness could result in a fall which would be unfortunate, so hospitals ask patients not to get up out of bed without assistance from staff. And if they are at serious risk of fall or injury they will confine them to bed.
i Dont know if this could’ve helpful for you or others who have aging parents or even a spouse in this situation.
The hospice nurses have let her get up to take a shower (just stand from bed to wheelchair, then from wheelchair to shower bench) and get in a wheelchair so I could take her for a walk outside. I really had to push for those things, but it did work out well.
She's already on morphine, on a regular schedule, whether she says/thinks she needs it or not. I don't know why. Yes, she has chronic pain, but she already had meds for that, which worked for her pretty well. She would tell me if she was hurting; she's honest with me like that. I mean, she can use something stronger now without worrying about getting addicted, but I need to ask her if she asked for it or if they explained why she is getting it, or whatever.
It seems that sometimes she just takes whatever they want to do, assuming they must know what is best; I'm more willing to ask questions and really think about it. The other day she said "they told me I didn't have to take the lactulose anymore." I explained to her why I had talked with the doctor about keeping her on it (helping with cognition) and what would happen if she didn't keep the blood toxins down. I told her it was her choice, but she agreed that keeping her cognitive so we could spend time together was what would be best. I thought we had already settled that before she even signed up for hospice so I don't know why they discontinued it again. I think she got a dose this morning. Yesterday they'd told me her schedule was 5 p.m. (I was there and did NOT see her get it), so today at 5:30 I asked if she was going to get it and then they brought it. I will need to point out to them that dosage will vary depending on how well it's working for her... today she should have had more. Are they reluctant to give it to her, despite the fact that we've said we want it? I don't want to appear as if I'm coercing her to do anything, but she seems to agree to things without fully understanding them and I have to explain to her what it's all about.
In speaking with her after she met with the nurse the first time the other day, I explained to her that they wanted to stop those meds. She had trouble remembering everything the nurse had said and that hospice "sounds nice," but when I told her that, she said, "Oh." "Oh, we didn't know that," said my uncle (also there for the previous meeting). I wanted her to understand that point fully before she made a choice, but told her if it was what she wanted, I'd support it.
I think it will be okay? She will have to go to a nursing facility, unfortunately; she really wants to come home and I really want to bring her home, but I am not certain about my ability to care for her, especially at the end, even if I can take the time off work/we can find a way to pay other home care to come in and help too. I know there are some things I can do, many things I can do, probably most things I can do, but things like moving her around and such might be hard for me to do alone. I am going to try to take over as much of her care at the nursing home as I can, and as they allow me, though-- I have more time to be patient with her and take time to care for her well, I am more willing to address her concerns, *I know her*, etc. No rough cleaning of tender skin as with nurse aides who don't understand or are too busy to be as careful as they should, addressing things she says hurts (some sores on her bottom that other people seem to just marginally treat), if she wants to get up being able to wait patiently to help her rather than just pulling her up, etc. (all stuff I've seen at various times in various hospitals and facilities.) She's going to become MY patient... the nursing-home and hospice people will be my assistants. I consider myself her personal hospice as I'm the one who has the time and understanding to do the best job (IMO). If we get a little help from our (medical) friends, I will appreciate that very much. (We have had some great doctors and nurses and aides who I wish I could pack up and take with us as our personal team, and others that make me want to say "get out of my way.")
On now to Medicaid, nursing-home choosing (which will be affected by Medicaid and I hope she doesn't end up somewhere crappy), and end-of-life concerns... (and work... and how to deal with the fact that my leave is running low.)
Find another hospice organization if they will not budge.
For my mom, hospice originally told us they would discontinue some med, I don't remember which. We pushed back, and they continued it.
You might talk to her doctor also, and have him/her explain the different stages of the conditions that she has, prognosis as far as life expectancy, what signs to look for in the end stages, etc. I think that will be helpful in knowing what to expect.
I understand being hesitant at this time. As mentioned, it's ultimately up to what your mother wants once the options and information are explained to her. I just think she should understand fully so she can make an informed decision.