Detrimental changes to Medicare Hospice for dementia patients.

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My husband, age 68, has young onset Alzheimer's disease of many years duration, diagnosed over 9 years ago. He is in the middle of Stage 7 and went into hospice in October 2012 with a diagnosis of "failure to thrive" and dementia. He weighs 112 (a 100 lb weight loss from his heaviest) is brain-blind (due to posterior cortical atrophy, a rare form of AD), cannot talk except for a word or two, cannot walk unassisted, is totally incontinent, needs coverage against bedsores (Mepilex), etc. There have been abuses in admitting and retaining people by some of the larger hospices. Those hospices are being sued for fraud by Medicare - to see which ones, Google "Hospice + Medicare lawsuit". Unfortunately, the local hospital based hospice that is helping my husband regretfully dropped off a letter this morning reading: "The Hospice Conditions of Participation require a terminal illness and co-morbidities that are life limiting in order to quality for Hospice. The Centers for Medicare and Medicaid Services recently notified hospices that they cannot use Failure to Thrive and Dementia as a primary admitting diagnosis. If there is no other diagnosis that can be considered as a principle diagnosis and the patient has plateaued at a low level of functioning, discontinuation of hospice services must be considered. We regret The Centers for Medicare and Medicaid Services decision because many individuals who would greatly benefit from hospice care are now being deprived of quality patient care and supportive services. We have always prided ourselves as being good stewards of the Medicare benefit and these proposed measures place a tremendous burden both on our patients and families. If you have questions or concerns about this recent change in your benefits please contact your local congressman or senator." The hospice nurse will call me this afternoon to advise if my husband will be allowed to stay under hospice care. So those of us who have been willing to accept the upcoming death of our loved ones, not subject them to colonoscopies, feeding tubes or unnecessary medications, etc. which will do them no good in their condition, will now be left without any support by Medicare! So, if my husband is discharged, he will lose the air mattress (protection against bedsores), the wheelchair, etc. We can buy those, but this change seems to me to be unjust for patients who are in end stage Alzheimer's disease but do not have other co-morbidities!

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What I am saying is that no, they do not grant hospice status on the basis of dementia alone any more.
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My mom got hospice on the basis of angina that was becoming progressively untreatable (she maxed out on nitrates, started to drop BPs). She actually went into residential hospice when she had an unresponsive spell at the skilled nursing facility. There was not a lot of benefit to her being on hospice initially, the little bit of extra attention she got while residing in skilled nursing was not much, and it also meant no more coverage for therapy/no price break for post-hospital discharge rehab days, but it was either that or bounce back and forth to the hospital for the rest of her life.
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This is so ridiculous in the case of dementia. We don't know exactly when people will die, but we know they are terminal and suffering and there's no reason to deny whatever comfort we can. There's no point in prolonging life if it's just suffering. And as Momobrien says, hospice certainly costs less than conventional care. When a dementia patient has reached such a loss in functionality and a physician can certify it, that should be all that is necessary to stop merely preserving life and instead make life as comfortable and happy for that person as it possibly can be.
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Abby, maybe when Hospice does their 90 day review, you will hear something - or maybe not. I suppose things could change in the next few weeks. Whether or not she is allowed to remain will probably depend on her stage of AD. She will need to show a decline from the time that she went in. But some hospices may be more scrupulous about following the new guidelines than others. They all have to justify to Medicare the stage that the patient is in. You think you're set and then sometimes find out that you aren't! Good luck with your situation.
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Thanks for sharing this information. My mother was accepted to Hospice four weeks ago with a diagnosis of Failure to Thrive and Dementia. I haven't heard anything yet about her being disqualified.
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Thanks, pstiegman, but Hospice advised that people are not being "grandfathered" just because they are already in Hospice. For my husband, though, I think that the Stage 7D with all the factors involved, is enough to keep him in. I'm relieved. I care for him at home (with live-in help that I pay for), so the costs to Medicare are less than perhaps for some people.
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First of all, you should be "grandfathered" because he is already in there. And his diagnoses should be updated to include the additional factors of blindness, speech loss and incontinence. And call your Senator and Congressman.
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Good news! I got a call from the hospital based Hospice this morning (5/31) stating that my husband will be allowed to remain in, at least for the time being. He's at Stage 7D of Alz disease, per the hospice. The diagnosis of "failure to thrive" will no longer be allowed for hospice entry. It sounds to me (based on what I heard from hospice this a.m.) like this detrimental change from The Centers for Medicare & Medicaid Services (government) is in flux right now. Perhaps there's already substantial push-back from hospice organizations. Since - as far as I know - there is nothing published yet for general public consumption, the "immediate" aspect of this change might be moderated. The hospice nurse reported that various heart disease diagnoses are problematic as well, probably because expected length of time in hospice is also hard to quantify. But hospice certainly costs Medicare much less than various surgical and drug interventions, so one would think they would encourage use of hospice rather than to try to limit it so ham-handedly!
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wow..that don't sound good across the board. I need to reread this and understand it when I don't have a whopping migraine on the rise...so I am typing this in to find it later!!!
Sorry you are having this issue!! and thanks for sharing....
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Thank you for letting us know about this.
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