How CMS Regulations May Cause Needless Suffering

I'm going to get on my soapbox here, saying I'm going to be actively involved in Lewy Body support groups online, and also become an advocate and volunteer for Lewy Body Dementia Association after my husband passes. I am driven...

There is so much to be done out there...including advocating for changes in Medicare's blanket CMS regulations for facility and Hospice end-of-life dementia "gradual dose reductions" that have the potential to put patients on needless rollercoasters of medication changes at their most fragile time, even though that medication has been proven to work for them on an individual basis. I firmly believe in cognitive comfort care in addition to physical comfort.

As my end-stage husband said in his first lucid moment in 7 days today, "No experimentation." As if he had a premonition that this week the facility will be forced to disregard any lucid moments and potentially take them away through dose reductions of his cognitive meds, though they are working. He's not even on any antipsychotics! I say, leave him alone and let him continue his dying process peacefully without the looming rollercoaster stress the medication reductions are going to cause him. We worked and have been very successful at having him stable, but the regulations treat people like a number, and not on a case-by-case basis, so it causes needless cognitive suffering. AND, Sometimes the regulations actually cause overmedication, when you have to give your loved one a drug at their anxious time of day to prevent them from sliding out of bed undetected because bed pads and clip alarms are against the rules, regardless of the fact that your loved one can't call out for help or press a call button.

The whole system is completely disjointed and over-regulated because of bad facilities and the poor judgment of bad doctors and nurses--not taking good facilities and staff, or the needs of the individual into account. Also, I feel a good preventative effort to this issue would be to better education doctors about how Hospice works, to build awareness of how medications they prescribe that aren't "designed" for Lewy Body can ultimately end up backfiring at end of life for their patients when they have to be ripped away due to the rules.