Detrimental changes to Medicare Hospice for dementia patients.
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!