Those of you whose LO's have been approved for hospice care--I am wondering what stage of the disease they were in when this occurred? Recently, there was a thread here on the Fisher Center website, that includes Dr. Barry Reisberg's scale which describes the various stages in detail. Is this scale used for the initial determination of eligbility? (I realize that if there are other serious health issues combined with AD, that would affect the situation. I guess what I'm asking about is when the patient is in good health except for AD.)
At this point I'm a bit (or a lot) confused about Medicare and hospice. My wife is coming home from the hospital today. She is late stage 6 and just had a UTI and diabetes out of control. Medicare has decided she is not sick enough for hospice, but too sick for home health care. SO, I get NO help from medicare.
1) inability to feed themselves 2) inability to dress themselves 3) inability to walk unaided 4) inability to converse except for a few words 5) while on Hospice, must show decline - and to get into the system in the first place, 6) doctor recommends Hospice
Now, IF you have a good Hospice staff, they will do what they can to help you get in the system and, due to Alzheimer's being the disease it is, to stay on it. It helps if you have other insurance which will pay FIRST, with Medicare being supplemental.....but not necessary.
The "stage" doesn't matter here, just the inabilities of the patient.
I am appalled that Marsh's wife's doctor hasn't insisted she be on Hospice. She obviously should be....I'm so sorry, Marsh!
Marilyn, I don't think your husband is there as yet.
marsh, if there is another Hospice there, ask for an evaluation. Others have found not all Hospices are the same. The explanations you have stated make no sense. Appeal, if possible.
Claude was late stage 6 when he went on Hospice three months before he passed on. He had been getting Home Health care (PT and OT because of falls and balance problems) for about six months previously.
We realized he was declining, but didn't realize how much or how fast. The Home Health nurse realized it and contacted his PCP who authorized Hospice.
If you have access to other Hospice groups, contact them. They all have to follow the rules, but different groups interpret the rules differently. Also, have a talk with her doctor. Doctors often don't realize how bad a patient is on a daily basis when they just see them for five minutes or so every month or so.
AI can truthfully say I wouldn't be here now without them. I was totally at the end of my rope and the rope had been knotted several times before.
Mary, my wife's doctor has done everything she can to keep her on hospice, or get her on again. I'm still waiting for the final answer, but her doctor has done all she can. She meets all the criteria you listed except that she can feed herself after I "prime the pump". There is only one other hospice in this area, and I'm not too sure about it.
Marsh, if you weren't there to "prime the pump" then she would have that lack of ability too...and if you don't prime in front of the nurse, it would be listed...
Have you requested a new case manager to come out and observe her? Not that blasted new nurse who came last....she's not our favorite person!
Marsh, I agree with Mary about getting a evaluation from the other Hospice in your area. My dh was feeding himself when he was admitted into the Hospice program. He was walking with a walker and my help. He was continent. I called Hospice myself. Mary is right, do not help any while they are there evaluating. You surely should qualify for their program. Makes no sense at all. Perhaps because she was able to spend some nights away from home recently would apply. I don't think I would mention that when they are doing an evaluation.
Most of the Hospice evaluators are former Circus workers who ran the "Guess your weight booth". Some are absolutely wonderful, while others would probably refuse hospice to someone in a coma. Like all "evaluations", some are accurate, and some are way out in left field. There does not seem to be hard fast rules, and often, the person evaluating looks far too briefly when making his or her recommendation. I urge you to talk to those people, and explain that what they see and observe is not always what is really happening. I would advise that you communicate with the person who decides about hospice, and request specific explanations why they do not qualify. I have seen tremendous differences in the criteria that are evaluated, and often times, you can argue the specific reasons for their denial. I have seen cases where two different hospices will have different opinions. Something to remember:: Hospice is a BUSINESS. not a charity. They get reinbursed by Medicare, or insurance. If a business is too busy to handle the workload, they will decline the added patient. If they have no patients, they will more likely approve the patient. Hate to say that, but I do believe it is true...If a hospice has too many patients, not enough employees, and not enough resources, I am convinced that they will decline cases that can be put on hold until "vacancies" are available. I may be totally wrong, but I would hope to be convinced otherwise. Fight for what you need!!!!
Right on....I would ask what Ad experience the person doing the evaluation has had. When hospice was here in Oct. for my dh...it was a joke...in fact I think it might have been a fraud. They evaluated my dh as mild...duh...he is 5/6 I never can figure it out from day to day or week to week. When I asked why they were here they said it was for his alz..then after the evaluation they switched the reason to his COPD...then half way through the 3 months they quit and wanted me to sign a release and I refused. I told them they were quiting and I had signed a contract for them to be here for 3 months.
A VA doctor was the one that sent the hospice to us because my dh has what is considered two fatal illnesses. COPD and ALZ.
Getting hospice on board is totally in the hands of the nurses that evaluate ...at least here in Oregon. The one we had did her darndest to keep G on the system, even to bringing out a Doc that they work with, but he has just leveled out too much, so....until next time!
http://www.montgomeryhospice.org/healthcare/endstage.php#dadrd scroll down to DEMENTIA and AD for hospice part!
here is an updated list for what qualifies DEMENTIA patients for hospice as explained to me by our hospice dr. basically they will be in stage 7C and have another co-morbility factor within the last 12mos on top of the 7C stage. this is as medicare posts criteria especially for dementia qualifying patients. its very different from regular standards for other illnesses.
plus since jan 2011 there are alot of more new rules starting and more input from drs and nurse practictioners at each new 60 or 90 day recertification. getting more complicated to get admitted and stay onboard.
here is also one posted on the AA forum basically the same. for dementia only http://alzheimers.infopop.cc/eve/forums/a/tpc/f/214102241/m/1471008592
7C is not the criteria for Hospice. Reaching stage 7 with no more than 6 words is considered the terminal stage. You see many patients receiving Hospice with no co-morbidity. Different Hospice Doctors require different criteria, however Medicare does not require stage 7 C
Some patients may not meet these guidelines, yet still have a life expectancy of 6 months or less. Coverage for these patients may be approved if documentation of clinical factors supporting a less than 6-month life expectancy not included in these guidelines is provided.
Co-morbidities Although not the primary hospice diagnosis, the presence of disease such as the following, the severity of which is likely to contribute to a life expectancy of six months or less, should be considered in determining hospice eligibility.
As you will notice in the above information from the site that Divvi posted, it states the co-morbidites should be considered, it does not say that they are a requirement. It also states some patients may not meet the guidelines but yet still have a considered life expectancy of 6 months.
The condition of some patients receiving hospice care may stabilize or improve during or due to that care, with the expectation that the stabilization or improvement will not be brief and temporary. In such circumstances, if the patient’s condition changes such that he or she no longer has a prognosis of life expectancy of six months or less, and that improvement can be expected to continue outside the hospice setting, then that patient should be discharged from hospice.
On the other hand, patients in the terminal stage of their illness who originally qualify for the Medicare hospice benefit but stabilize or improve while receiving hospice care, yet have a reasonable expectation of continued decline for a life expectancy of less than six months, remain eligible for hospice care.
The rules are very complex and nothing is exact except the beginning requirement of having to reach stage 7 with no more than 6 words, this determines the terminal stage.
So when you think your husband is ready, talk to your Doctor and then decide if you are ready for Hospice. Do not loose out on the early help just because of the wording of the criteria, only the Hospice Doctor and Nurse in take worker can really decide.
stage 7c is where almost all of the predetermined loss of functions begin - fecal/urinary incontinence, loss of ambulation wihout assistance, less than 6 verbal words or such, loss of various ADL's. etc, but in both the sites i believe they said on top of stage 7 PLUS ONE of another co morbid illness within 12mos. you can google 'dementia requirements for hospice' and you will get lots of different info on the subject. maybe there are still variations by state on whats qualifying. check your specific state.
it was specifically my DH uti/kidney infection within the last months that kept him qualified at least here.
When my husband was accepted into Hospice he could feed himself, more or LESS dress himself, he could walk short distances without his walker, but often fell if he had to navigate turns.. used the walker well, though... He could talk, fairly well, but would lose his train of thought and often got words mixed up.. (He could really talk when he was sundowning!!), and he DID have a prescription from his doctor that read, "Evaluate for Hospice",...signed "doctor's name".
He ate a ham and cheese sandwich the night before his coma with his nurse sitting in a chair next to him. He fed himself, ate a cup of yogurt and later had ice cream.
Frankly, I think it's up to the individual Hospice Nurse/Evaluator. She sat and watched him, talked to him and he answered some questions - if he could remember the answer.. Of course, he couldn't remember where he had worked for 37 years, or where he lived, but he would say, "I'm not sure I can tell you that .. at least not right now!"
If one says NO, call another one. That's what we did.
stage 7c is where almost all of the predetermined loss of functions begin - fecal/urinary incontinence, loss of ambulation wihout assistance, less than 6 verbal words or such, loss of various ADL's. etc, but in both the sites i believe they said on top of stage 7 PLUS ONE of another co morbid illness within 12mos.
My husband lost ALL of the functions that you speak of by the time he had reached stage 7, not 7C. Also I have read where some of the Hospice guidelines say another co morbid illness withing 12 months, but if you will notice the main description from the Medicare site state co morbid illness should be considered, it is really not a set in stone rule.
My husband is in Hospice and continues to be re-certified, in fact was just re-certified this week, he has no co morbid illness just the hateful dreaded Alzheimer disease that at stage 7 is determined the terminal stage.
thanks Jane. so happy to hear your DH has recerted again. marilyn, i defer to your opinion thats its not a cut and dried situation by any means then. 'if at first you dont succeed try try again'... maybe this is the hospice motto for AD now. :)it sure cant hurt!
Our Dr. told me that Hospice was only recommended when the person is bedridden. Although my dh can't really do much for himself, he does not qualify. I think patients with Cancer are the main concern of Hospice. I guess AD is not considered life threatening. They just don't know enough.
brindle, this just shows how some Doctors know the fact and others do not. There is so much mis-understanding when it comes to Hospice that even our own personal Doctors sometimes are out of the loop. It from what I have experienced depends on your Hospice evaluation by Hospice and many of them are different. The Hospice Doctor has the last word. My husband was still walking when Hospice came to us although he had to be prompted and directed. He is now what we would consider bed-ridden as this would be the case if we were not getting him up with the hoyer lift. It takes two people to get him up each morning, then I take over till the next morning. On and on it goes.
The state of South Carolina has decided to stop funding hospice in February. People who are covered by Medicare or private insurance will still be ok. But hospice will simply not be available to people whose only insurance is Medicaid. There is a Facebook group for people who want to protest this called Comfort the Dying in SC.
What a surprise. Several weeks ago my brother and I met with the hospice intake nurse to enroll my Dad. When we were finished, I asked her when I should call about Steve. I explained that he is late stage 6, needs help with all ADL's except transferring, can walk unassisted, and has NO comorbidities, is 66. She said to call now! He was immediately enrolled. Now, I don't know what his doctor said on the referral, but was told by the hospice social worker yesterday that the criteria for approval for dementia patients under Medicare had been changed within the last 6 to 12 mos. (I took that to mean loosened up.) The nurse and social worker that observed him yesterday said he walks well, doesn't shuffle at all, and clearly will live longer than 6 mos.
I recognize that there will be a recert after 90 days and it is likely he may not requalify; however, I am happy for the opportunity the enrollment will give until then. My advice is that everyone check with hospice well before you think it will be approved. I sort of backed into this by accident; neither his neuro, the Alz Assn nor anyone else had suggested it at this point.
It amazes me how different Hospice's evaluate. My husband could walk unattended, however, could not feed himself, dress himself & was totally incontinent, however, he was denied the first time...since he no longer walks he has qualified. I still think it was his age 60...that was the only thing they saw.
MarilyninMD In Oregon, at least, the criteria for getting on hospice have been tightened considerably, NOT loosened. The nurses we had all said it has changed a great deal, and they have a more difficult time getting patients on board now as well as keeping them.
i agree with kathi, as the guidelines have tightened up considerably here in tx as well since jan. just this morning we had recertification, and they say now medicare is strictly needing demonstation of , stage 7 min ,plus a comorbid occurance within 12mos, AND decline -ie weight loss proven by measurements of arm weekly. and now its reevaluation every 60days now. we have been over a year on hospice so its getting even stricter as time moves forward. they seem to really be looking for that '6 mos or less' window now more than ever. i am sure it varies per state. i wonder why there isnt consistancy among the states.
marilynnMD, the hospice that I have here in New Mexico has a section of possible upcoming patients that are not quite theer yet but almost and need to be observed every few months with doctors permission. My DH is on that list. Maybe you can check into that because even though he doesn't qualify yet it is just nice for me to know that there is someone professional out there at the ready when I need them. I had the same trouble with him being not bad enough for medicare to help but not qualifying for home health care because he is on medicare and not medicad( we make to much money, ya right!!!!!!!!!!!!)
divvi, It is not that the States vary in being consistent, it is the way the different people READ and UNDERSTAND the Medicare Rules, even our own family Doctor did not realize we could choose him as the Doctor of Choice, he said it is not suppose to be that way, when I told the Social Worker she said half the Doctors do not understand the rules of Hospice, that is the same thing with this re-certification stuff.
Straight from the cms.gov manual it plainly states that once a patient has been admitted to the Hospice program that in most situations, discharge from Hospice will occur as a result of one of the following: (1) the beneficiary decides to revoke the hospice benefit, (2) the beneficiary moves away from the geographic area that the hospice defines in its policies as its service area (3) the beneficiary's condition IMPROVES and he/she is NO LONGER CONSIDERED TERMINALLY ILL. in this situation the hospice will be unable to re-certify the patient (4) the beneficiary dies.
Patients in the terminal stage of their illness who originally qualify for the Medicare Hospice benefit but stablize or improve while receiving hospice care, yet have a reasonable expectation of continued decline for a life expectancy of less than six months, remain eligible for hospice care.
you can have a Hospice worker who half reads the rules of Medicare and does a lot of assuming on their part, you can have a nurse who does not chart and document properly etc. These are the rules divvi, stay informed and challenge them if you need to.
Once the patient is considered in the advanced stage 7 of the disease they are ALWAYS GOING TO BE CONSIDERED TERMINALLY ILL. this is also what our Hospice Doctor told me. My husband now has a NEW hospice Nurse and I will have to keep her educated because I can already tell she is not aware of the Medicare Manual and how it reads. Of course I have the Hospice Doctor who has assured me they will be with us and I plan to be at every face to face he has with my husband while at the Nursing home along with making sure I am there each time the Nurse makes her little visit.
Well, I am just baffled as to how my husband was accepted (not that I'm complaining)! He was irritated that the social worker, nurse and I were discussing him and wouldn't even let the nurse take his BP. Of course, next week it could be completely different and he may hug and kiss her!
thank you jane for that link. i will surely keep it handy. marilyn sometimes maybe finances may play a part in whose accepted i think. if business is slow they can accept them for a min of 90days first off and if they qualify again wonderful if not they will let you know. but i agree its a very good thing you were qualified! thank you bluedaze, thats sweet
Some time in the next few weeks I'll be picking up my application to work at our local hospice house. Perhaps I'll get some answers. May was a year that Bill is gone-making me eligible to work there.
Here's a good resource that explains the rules. A friend of mine who is a hospice medical director emailed this to me. http://www.eperc.mcw.edu/fastfact/ff_150.htm. To summarize, the main rule of medicare is that 2 physicians feel that someone has a prognosis of 6 months or less should the disease run a natural course and the family/patient agree to hospice philosophy of care, then the patient is appropriate. But in order to prevent fraud (hospice patients signing up patients who are not that sick), there are guidelines. In order to help hospice agencies make sure they are not committing fraud, the National Hospice and Palliative Care Organization recommends FAST 7a if there one or more dementia related comorbidity (aspiration, UTI, sepsis, multiple stage 3-4 ulcers, persistent fever, weight loss > 10% body weight within 6 months). If someone does not meet this strict criteria, they may still qualify for hospice. Some hospices may be gun-shy and use stricter than recommended criteria. Others play it very loose. The reason something like 7c may be used is because the median life expectancy (not average) is 6 months, but the +/- or standard deviation, or variation is very very wide with some patients living years (like my grandmother who was stage 7 for at least 2 years).
For review Functional Assessment Staging (FAST) Stages 1. No difficulties 2. Subjective forgetfulness 3. Decreased job functioning and organizational capacity 4. Difficulty with complex tasks, instrumental ADLs 5. Requires supervision with ADLs 6. Impaired ADLs, with incontinence 7A. Ability to speak limited to six words 7B. Ability to speak limited to single word 7C. Loss of ambulation 7D. Inability to sit 7E. Inability to smile 7F. Inability to hold head up
josh--reading info similar to what you posted is why I hadn't called for hospice yet. However, it just goes to show that sometimes it pays to think outside the box. My husband is Stage 6 with no comorbidities. I am thinking he probably won't be recertified after 90 days, but I'll take the 90 days!
I don't know what all the can't do's are but I just know the DW was accepted into hospice program and will start next week to receive assistance with personal care issues. She was reviewed by the nurse and social worker today and the agreement was signed. Now the journey continues into never dreamed I would be there land.
Lord, help me. My DH has ADLs and IADLs and a few other problems that I have no answer for. I am thankful that we do have Hospice but I am worried that he wont be recertified.
Of Josh's list my wife can feed herself (after I cut up the food) and walk, usually holding my hand. Of the others - nothing. And she was discharged from Hospice!!!!
My dh fits in your group also. Maybe it is that part of the brain controlling the IADLs which has more plaques. How old is your dh, Jean21? My dh is 85. Could age be a factor? This week my dh seems to have taken a turn for the worse mentally. I am not accepting this very well, I'm afraid. Until now he managed and took his meds properly. Today he is starting to refuse. Says he has been doing this long enough and doesn't need the stuff. I hope it is just a "today" thing. I find it easier not to argue. Tomorrow is another day.
shelia1951, thank you for asking what ADL stands for. I have seen it & also didn’t know what it meant & I was going to ask. Vicki, my DH also does all the ADL’s but none of the IADL’s. shirley, my DH will be 64 next month & I can see a mental decline lately also. He is having a problem finding the right words lately. My DH doesn’t give me any problems when I want him to take his meds………today! Yes, tomorrow is another day!
josh--please chime in here--the way I understand it, the IADL's require a higher level of functioning of the brain, so of course, they would be lost earlier in the disease process than the ADL's. As the disease progresses, eventually, the ability to do all the ADL's eventually is lost. To me, the main thing about the ADL's is that it helps one gauge where in the disease process the patient is (using the Reisberg Scale). Anyone not familiar with it can find it on the Fisher Center site or under stages of the disease on the Alz Assn site.
I need to clarify my post above. My DH can eat and although it is hard for him to get out of a chair he can. He does shuffle around so you might call that walking. He is having a hard time getting into and out of the bed. He just does not know how to do it anymore. I have been doing the grooming and bath chores for over 2 years. He will tell you during the day when he needs to pee but does not know where to go so he follows me, sits down on the potty and says "in here"? He does a lot of mumbling but it does not make sense and most of the time I cannot hear what he is saying. I see declines every day and even though I know they are going to happen I find myself having problems excepting them.
shirley, My DH is 82 he will be 83 in September. When I think back there were lots of signs of AD but I didn't have a clue. He would go to the store for me with a list and come home without some of them. He would always say "They didn't have it", I could go the next day and there would be a shelf full of what "they didn't have".
So IADL's and ADL's are very useful tools for quickly assessing someone's overall function which correlates to general disease severity, physical/social needs and even prognosis. IADL's are "higher" level functions than ADL's (also known as BADLs or basic activities of daily living)
One example, if someone has deficits in IADL's and lives alone, you can usually compensate by hiring (relatively) cheap help, getting county services like meals on wheels. A person can be by himself and may need family to stop in once a week or call several times a week. The type of help is not skilled or nursing level help. If someone can not get enough services, assisted living facilities are good for people with IADL deficits but intact ADL function. For those with ADL dysfunction, they can't live alone easily (if you can't go to the bathroom, it's not humane to leave someone alone). Help may need to be "skilled" or nursing level help. It costs more. I worry more about caregiver burnout when there is ADL deficits (especially continence needs). This is nursing home level care (usually).
Generally, people lose IADL functions before ADL functions. You stop driving before you stop walking. People lose IADL/ADL function for all sorts of reasons including arthritis, blindness, depression, Congestive heart failure, severe Emphysema, dementia, psychosis, stroke (with intact memory), leg amputation, pain etc. So loss of function does not tell you why but the more function a person has lost, the more serious the underlying cause like CHF or emphysema. People with dementia who have IADL/ADL dysfunction lose of for a variety of reasons dealing with the varying domains of cognition: memory, language skills, executive function, visual-spacial cognition, recognition etc in addition to general weakness. In Alzheimer's, the loss of function is generally more predictable than in other types of dementia. Hence the FAST scale. Higher level functions (IADL's) are lost first because they require multiple cognitive domains to perform. It is easier to put a spoon to the mouth with food in it than to think about what ingredients go into making a dish and putting it together in the oven. For example, when doing laundry, you need to put the clothes in the laundry machine, then put the soap in, then turn the machine on, then take the clothes out when it is done, then dry them. Miss one step (or get it out of order) and the whole thing stops being right. Generally, I consider someone with IADL dysfunction to be mild to moderate and with ADL function to have moderate to severe dementia. Rough guides.
In AD, loss of ambulation (7c) has a median life expectancy of 6 months or less although the variation goes from weeks to years still. 7A plus another AD specific complication also carries a poor life expectancy prognosis. This is why these are suggested criteria for hospice. These are statistically derived suggestions. So someone gets a group of patients with AD and follows them. And they figure out that people at 7c have a median life expectancy of 6 months. On a public policy level, that's how you get a hospice organization using this as eligibility criteria. However it is of limited value for an individual because of the wide variation in courses. A hospice agency will hopefully not use these suggestions as Bible but will consider the suggestions in light of the individual's trajectory. Hospice's are caught between wanting to help people and wanting to avoid medicare fraud.