Hospice or not?


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.

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I talked with the doctor today. He wanted to cut the dose back so she wouldn't have to go to the bathroom so often, thinking that would be annoying for her. I tried to explain to him why we wanted it. He said "can we just take it one day at a time?" Um, yes? That is what we're doing? I was getting to the point where I felt like I couldn't fight it, especially since I'm not completely clear that it's 100% what my mom wants rather than her just going along with me, and since I'm not actually the person handling the meds. But the nurse did tell me he upped the dose for her, so I must have gotten through. I thought of switching, but not sure I could convince her to do so, and not sure anything would change with another agency; maybe I am just expecting too much of hospice care and this is just the way it works (I haven't much experience with hospice to compare with, so I don't know).
Helpful Answer (1)
Reply to k12144

Hospice or Not?

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.

First question:
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.
Helpful Answer (1)
Reply to LotusFootCare
k12144 Sep 16, 2018
They wouldn't even let her get up with assistance, which was what she wanted. And yes, I know her condition will worsen, but it's not there yet, and I don't like the measures that seem to be treating her like she is. I think I'm realistic about what's going on with her, I know what her abilities are and I can see how her condition is going, so I don't think I'm just in denial.

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.
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Similar situation here but with kidney failure. Hospice considers dialysis always to be curative, which blows my mind. They would only come in if he stops dialysis, at which point we are told he’d likely have 7-14 days to live. Until then, I have to find a different support system.
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Reply to JuliaRose

And, thanks everyone too for the advice... I know that sometimes in some threads hospice has been kind of a sticky subject, and I didn't want to sound like I was knocking it, or saying it was bad for everyone just because I had doubts about a personal situation, but I also really had concerns about some of this stuff.
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Reply to k12144

Thanks, everyone. I spoke with the resident at the hospital where she is currently who has been so helpful. I explained my concerns, he understood (even her PCP agreed with me when I explained that to her the other day). He called the hospice nurses for me and they said they wouldn't have to discontinue the med that is helping her mentation the most. That was my biggest objection. The hospice nurse had also told me we had the option of admitting her under the heart failure instead, which would mean she could continue the liver meds. I asked the resident what they would then have to discontinue, and he said that would probably be the diuretics which he didn't feel were now working for her anyway. She did choose to sign up for hospice yesterday (I had to work but her brother was there). I'm not sure which condition she enrolled under or, unfortunately, if she even understood she had a choice. I wish I had been there; I didn't realize she was going to sign up right then, and I had been wanting to consider a couple other services I've heard good things about rather than going with the default hospice-related-to-the-hospital (I know, we could always switch later, but that seems so awkward, and I admit that having the hospital hospice do it makes it easier as another told me she could enroll once she's in a nursing facility, whereas the hospital is helping us find a nursing facility). (And I admit the hospice nurse I met rubbed me the wrong way, but maybe that's just because the idea of hospice bugged me?) But I think she fully understands it, and that was all I wanted, was for her choice to be informed.

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.)
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Reply to k12144

I think you need to argue the point with hospice that the meds she's on ARE palliative and not curative.

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.
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Reply to BarbBrooklyn

What does your mother want? Yes, she should be the one to decide. Have you discussed this with your mom? The pros and cons? What will happen if she goes on it versus not. Keep it simple and straightforward. You need to do this before the hospice nurse visits your mom regarding this. I think, it would be best if you can also check with your mom's social worker, if she has one. She can give you a third-party's opinion. It really all boils down to what your mother wants in life. If she's not suffering, does she want to continue with the status quo of No Hospice? Is she in pain/suffering but you're not aware of it because she's not telling you? Perhaps, hospice would seem nice to her. It's really up to your mom to decide.
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Reply to bookluvr

What am I missing here ? We don't want to save her life at all costs. We don't want to give her painful treatments just for the sake of doing it... but the "treatments" they would end are two pills and a liquid that still work for her, not chemo or dialysis or something invasive and painful and pointless. We don't want to "prolong" her life, but we want to not *end* it earlier than necessary while she still wants to actually live and be conscious. We just want to save her *quality* of life for as long as possible, and I truly don't believe she'll have that in hospice because they will force discontinuation of everything that makes that quality of life, in favor of making her bedridden and tranquilized. Don't get me wrong, I know hospice can be and has been a blessing for many, but those are people in different situations than my mother. Is it possible to be eligible for hospice but not have hospice be the best option yet?
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Reply to k12144
FrazzledMama Sep 14, 2018
Yes, I believe it's possible to be eligible for hospice per the requirements and have hospice not be the best option *yet*, but some time down the road, depending on the progression of the illness.

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.