Hospice says they might drop us!

[Barbie]

I have read on here many times that ALS patients can get hospice for more that 6 months--sometimes more than a year.

My husband has been on Hospice since November, and the nurse told us a couple weeks ago that he may be dropped because he has not progressed fast enough. She said the medicare guidelines state that the patient must have decline to stay in the program. (I am paraphrasing) . Hubby is very slow decline--and he likes to act like nothing is wrong with him when the nurse visits. He likes to tell her he feels great, never complains about anything. they measure his arm to check for weight loss but it hasn't really changed significantly. we have only had to call one time for an emergency choking episode, he really hasn't had any other bad health issues.

I am torn, because I want to keep hospice but I understand their position. It isn't like he is going to get better and even the little help I get from them makes my life a bit easier. he gets a bath 3 times a week, and the nurse visits once a week. I should be happy that he is not getting worse very fast--But I am sad that I might lose the only help we get.

Why is is so hard to get help with such a @@&(%%$ disease!

 

[Miss]

I thought all hospice needed with ALS was a renewal of the doctor's order!

 

[Katie C]

Barbie...all they will need is a letter from the doctor and you should be fine. They WILL reevaluate...usually 6 months after initial intake and then every 3 months after...but it should just take a continuation order from the doctor to continue care. Otherwise I'd be looking for a different hospice provider.

 

[trfogey]

Barbie...all they will need is a letter from the doctor and you should be fine. They WILL reevaluate...usually 6 months after initial intake and then every 3 months after...but it should just take a continuation order from the doctor to continue care. Otherwise I'd be looking for a different hospice provider.

Recertification every 2 months after the first year nowadays.

 

[notgivnup]

Barbie ,
I am so sorry this is happening, dosen't seem right to me, I think another script from your doc should be what they need but I could be wrong, but check into it anyway. I will be praying that all goes well and it can be extended as you do need the help. Hang in there hon, Love your sister Warrior, {{HUGS}}

 

[Danijela]

I can't make suggestions on how to keep Hospice care on your side of the Atlantic, but I can relate to your partner saying he is 'doing great' when nurses visit. We have the same issue, L is doing 'perfectly fine' in front of medical staff, carers, friends, family... I find this infuriating and really hard work. As a matter of fact he told a manager of a PCT (primary care trust who decide on funding for his care/size of his care package) that he is 'weaning himself off the ventilator'. I wish! This, as you all know, is not the reality of ALS and there is only progression in one direction, however, there is such a degree of ignorance about the ALS that people then think that he does not need help throughout the day (to put the vent on/off when I am at work, for example). One such suggestion on his part could have cost us a significant part of his care package. It took a lot of strength and energy to correct what he had done with one sentence.

All the best, Dani

 

[hangingon1]

Barbie, I am glad that you brought this up. Just Monday the hospice nurse said that if my pals was not showing a decline, that hospice could be cut off. She has been on it since Dec. of last year and now we are coming up on 4 months. I do not know what I would do or how I would get her to a Dr. now. It has really upset me and I am glad to know her Dr. could continue her on it. My wife also tells the hospice nurse how great she is doing. I do not think that that helps. The hospice nurse ask me and I usually tell her about the increased chocking episodes and etc.

 

[CoachMeg]

Barbie, I believe the others are correct. A doctor's order or letter should be able to maintain hospice care. We have been told that if he plateaus or the decline is gradual, hospice will reevaluate, but the chances of being released from hospice is not likely. Most organizations are aware of the devil that is ALS progression. Maintain communication and remember to be an advocate for your husband. Mine would like to always say he is fine and nothing is wrong, but he knows I will rat him out. They need to know what we are seeing as CALS, too.
Love and light
Meg

 

[kelly]

When you are on hospice over a year the director of hospice comes out every two months for re-certification. We call her the hatchet woman...as she holds our hospice fate in her hands. I must say it is incredibly stressful as I dread losing their services. We have learned how to play the game so to speak. We document absolutely everything....twitching..drooling..sleep patterns..weekness...morphine needs..fatigue level. They take this all into consideration when renewing. I also coach my husband to act a little irritable...and "sick" while they are here. Has my husband progressed...yes...but it is slow progression. It is important to have your local ALS center or Dr. to help document weekness and stay in communication with the clinic. I seriously dread losing hospice services. I will write more later.....
Time to get Andrew up from bed.get the kids fed..you know the drill. Love to you all!

 

[Barbie]

Thanks for the input ya'll. I told my husband he needs to at least ACT sick when the nurse comes! I will speak to the nurse this week and try to get more info. We are so lucky that he has been relatively stable for some time--but as everyone knows, things can happen very quickly and his health can change for the worse.

 

[vlcare]

I understand that hospice organizations are coming under greater scrutiny. I have read several articles. If a patient appears to be thriving or at least not failing, it may be the case the hospice will not be continued. It was never meant to be long term care, but rather end of life assistance. I know it seems horrible when caregivers need day to day help, but I suspect doctors can do only so much.

VL

 

[lynster]

Coming up against the wall of Medicare is daunting, but I finally got the information that a PALS must simply have ALS, and that there is no prognosis of their getting better. Sort of sums it all up, doesn't it? Hospice is coming out within the next week to us and will start shortly after that. A word of warning, hospice does not cover caregivers that transport PALS in and out of bed, for toiletting, bath assist and all that.

I'm taking a breath now, and perhaps I can get through this, too.

Lynn

 

[lms9258]

When we first started on hospice, re-certs were were done every 3 months, and the doctor never had to come and see my mom. Then it changed to every 2 months, and Medicare started requiring that the doctor come to her house for the eval. It is not just a matter of the doc signing continuation papers.

Follow Kelly's lead, I did the same thing. I brought up every little change or decline. My mom was on hospice for 1 1/2 years, and didn't start losing any weight until the last 5-6 months. So I pointed out other changes, such as fatigue, phlegm/choking episodes, any muscles that seemed weaker, etc...My mom, as I'm sure it is with many pALS, looked just fine and dandy when she was sitting all comfy in her chair. You have to tell them everything, because some really don't know a lot about ALS. All they want to know is, "what has changed?". You just have to remember every small thing, because lots of times there are no huge changes in a couple of months-but there are always changes.

I agree with Meg, the chances of losing hospice are not likely. And, as Katie mentioned, agencies can also make a difference. Good luck to all of you with hospice!

Laura