Can someone explain what hospice is/does?

[BuelahWitch]

Like Tab, I have Stage 4 Cancer. Mine is breast cancer which has spread to the lung, liver and several bones. I had one round of chemo, and am on my second round of radiation now (for pain in the right leg). I have been on Anastazole and Faslodex. Neither did much for the cancer. I do not want to do any more chemo, for many reasons.

I live in a nursing home, but hospice *does* come in and work with our residents too. I too want to concentrate on quality of life.
Will hospice help with that? Who administers pain medication if I need it? Will they work that out with the nursing home?
Yes, I should ask someone here, but our administrator seems to be the only one with any answers, and I like to call her "The Invisible Woman" because, except for giving me my monthly bill and for a few moments at breakfast, she is usually not around.

[ZombieHorde]

1. I have a lot of dealings with hospice.

In Montana, they will help you shower, provide specialized equipment, and often get people access to morphine. They're not perfect, but they're helpful more often than not. You should definitely check them out for your area. Hospice is very good in my area.

Who administers pain medication if I need it?

In Montana, the nurse or med aide on shift will give you your pain meds. The charge nurse, or whomever, should deal with that end of it. The roughest part will likely be when you first sign up and all the paperwork and evaluations are going on because your new pain meds won't be in your MAR right away, unless your nursing home, pharmacy, and hospice have a sweet digital MAR set up, and they all have decent communication skills. Most places like hospice because there are legal benefits for the facility if their residents are on hospice, so they should be happy to work with you.

Hospice is likely different from state to state, so you'll have to get specific answers from them.

Ask them what personal services they provide. -probably showers, check ups, end of life bureaucracy, and pain management

Ask them what equipment they provide. -probably hospital beds and mobility devices

Ask them what pain management they provide, and if your nurse/med aide can give you the meds. -the med passers at your facility should be able to do this, but ask

Ask them if being on hospice changes your status, such as from full code to dnr, if you care about this.

I definitely think hospice is worth investigating.

[Downwinder]

2. Best to contact hospice directly.

They offer services up to and including residential care. For my Mother they were basically expediters. The nurse came by weekly to see if we needed anything and see how things were going.

[BuelahWitch]

4. I think that is what I will have to do

The local Cancer Society has a hospice, I will talk to them. They may know how to take care of me better than the others.

[angstlessk]

3. I am not sure if I can visit this group...it is too sad!

Don't know why I chose to clink on this OP...but I guess it gives reality to our outcome, all of us?

[auntAgonist]

7. angstlessk, I think as time passes you'll find more happiness than sadness from the folks here

These are issues we all face, some sooner than others.

You will find the support here to be some of the best anywhere. Sure there will be sadness in some posts. Some happiness in other posts and some down right funny stories.

You see, people's end of life issues don't prevent them from living today

I hope you hang out with this group it will do your heart good.

aA
kesha

[radical noodle]

5. We had hospice care for my father

and also my mother-in-law. In most cases, being in a hospice program gives people a much better quality of life and sometimes gives them a little longer life without the side effects of chemo or radiation. I would advise doing it as soon as possible. Too many people wait until the last few days to do it when there's so little left to do. My father was helped enormously by hospice coming to his home.

The last I knew, the only basic requirements to get into a hospice program were to have a terminal diagnosis with a prognosis of no more than six months to live and to be ready to accept only palliative care. They never complain if the patient lives longer than that, but it's a guideline they use to sign people up. It's possible that different states do it a little differently.

They normally do a lot more than just pain meds, so I hope they are able to help you. I'm sorry you're going through this.

[Tab]

6. I'm currently "in" hospice. Perhaps a better way to describe it is that I'm "entered" in hospice.

I couldn't get a straight (for me) answer from the people in charge of palliative care at my hospital/oncology center.

Basically, hospice is a program open to those with 6 months to live (sometimes more, hard to tell) but definitely nearing EOL. It works in conjunction with Medicare.

The concept, I think, is that if you let Medicare manage your hospice then they won't also let you go to doctor's/hospitals for your condition.

Hospice can be applied at home - often is - but if there's a serious problem they move you to a hospice house if you need round-the-clock care with machines or whatever that isn't feasible at home.

Generally it's held at home. The tradeoff is that you and your doctor agree that you're no longer curative - all the CT scans in the world aren't going to help you get better (they'll just let you know where you are). You're only palliative - they'll make the last few months tolerable at home with all the meds you need in an environment that (hopefully) doesn't stretch you out and makes you feel comfortable. If you accept hospice, then you can NOT got to regular hospitals and doctors RELATED TO YOUR CONDITION because you should be getting covered for all this via Hospice. That said, if you break your back in a car crash, that would still be considered non-hospice and you could still go to your regular doctor or hospital. Likewise you can drop out of hospice at any time (just sign a form) and then you're back on traditional insurance. You can always reapply for hospice.

So, the deal is, Medicare'll send nurses or social workers to your home, give you oxygenators and a hospital bed if you need for your house, but you promise to do everything disease-related through hospice. On the bright side, you can call them 24 hours a day, get as many home visits as you need (ranging just from a nurse asking how you're doing to in-home help taking showers or whatever you need).

They also cover prescriptions, which for me is a good $250+/month savings.

Meds aren't limited - they can pick up your morphine, insulin, etc. The people at hospice (aside from the initial flurry of intake) keep as hands off as you want them, but will be as involved as you need (change bed dressings, move you, get you to the toilet or shower).

Personally, I'm very tired most of the time, but I can drive my car, make phone calls, go to the store, work online, and so forth. Not quite with the energy I used to have, but I'm 99% functional. I suspect that will go down more and I'll more and more rely on hospice services (think visiting nurses association) but I dont have to just yet. That said, we're putting stuff in place, and they're also helping my family, my wife in particular, in understanding the process.

Maybe you don't want to live your last years in your house - either because of tension or maybe because you're alone - and hospital might be more approrpriate if you can afford your doctor visits and scripts. If not, this is a nice alternative. Our objective: learn to accept and put ourselves into the hands of the hospice crew.

As far as medication, Hospice delivered (for me) Morphine, Haldol, and others. We administrated it outselves. But I think they'll come over and administer it if necessary.

Hope this helps. Anything I didn't cover (or didn't cover well?).

- Tab

[BuelahWitch]

8. Thanks Tab

That was a great explanation, Tab. One of the women here at the nursing home (excuse me "assisted living facility&quot had hospice before she died, and I kind of wanted to know what would happen. The director here assured me they wouldn't move me into the nursing home proper unless it took more than one worker to assist me at a time (that would cut into the television watching time of the other worker, you understand). We'll see if I can hold her to that. I hate to be so negative about the place in which I am living, but he thing is, they are accustomed to dealing with old people, not people living with cancer. However the local Cancer Society has a hospice that works with local cancer patients. I hope they will consent to work with me.

[moonscape]

9. Maybe not important ...

... but the 2-person assist thing could be something regulated - it was the same at Mom's facility, which was an excellent one. Mom died in AL, but barely. They were kind enough to keep her there for the last weeks before she died, even though technically they were supposed to move her to skilled.

[TexasBushwhacker]

10. Lots of good answers here

My mother had in home hospice for her last 6 months. Just so you know, you will not be taken off hospice if you happen to live longer than 6 months. They just re-certify you. It's no big deal. They will set up a visit schedule, usually once a week in the beginning, then more often when necessary. They will pay a lot of attention to pain management. My mother also had breast cancer that had spread to her bones as well as her brain. Initially she was on fentanyl patches, then a morphine pump and at one point methadone. She also had morphine pills for breakthrough pain.

They will also make sure you are able to eat what you want. My mother mostly wanted to eat ice cream with Teddy Grahms and they said that was great because it provided plenty of calories. They wilk have social workers and chaplains who can visit. They can keep your family and up to date on your status and offer them support as well. When I was caring for my mom 24/7, they hooked me up with a volunteer who would come one evening a week just so I could grocery shop or get away for a couple of hours.

[BuelahWitch]

11. Thanks. Good information. n/t

[Tab]

12. Yes, good point

You will not be kicked out after 8 months. Eating ice cream with teddy grahams might hasten the process, I don't know, but I'd rather die eating ice cream with teddy grahams than, say, broccoli.

If you went 3 years in hospice I don't know what the recertification would be like, but they definitely can't put an expiration date on anything. Hell, my oncologist wouldn't give me an expiration date, how can hospice be expected to? But what they look for is the fact that you're near the end of a terminal condition. In my case, it's considered terminal, and I've chosen not to fight it anymore (used up all the good chemo, what's left has nasty side effects giving me no quality of life). Will I be dead in six months? Some days I think I'll be dead before the weekend, other days I think I'll live a year or more. No one really knows.

[TexasBushwhacker]

13. They said ice cream was great because of the calories n/t

[Tab]

14. Anything is good

I was just joking about the ice cream. I justify anything I eat now that I'm lucky I'm eating anything, which I am, since I have a solid dinner about once a month. Beyond that, no appetite just liquid diet. Not that I "need" a liquid diet, but if not for liquids (juice, soup, whatever) I wouldn't eat anything.

I guess if you shoved some teddy grahams into some mint chip ice cream I'd have a problem saying no.

Whatever works

[TexasBushwhacker]

15. Her favorite was peppermint ice cream w/

Chocolate teddy grahms. Man, I sure do miss her.

[Tab]

16. I love peppermint ice cream

probably more than mint, I just don't buy it often, not sure why, probably in an effort to not indulge my vices too much. I'm not into chocolate, so I was thinking regular grahams. But whatever. If chocograhams was what I liked, and I could have it with peppermint ice cream, I can think of worst ways to go. Good for her.