I first saw news of new Medicare Guidelines (click here) on Twitter on May 1, and it will affect many Medicare patients on Hospice. Time to plan ahead before your next refills for your non-Hospice covered medications.
To get Gary's medications secured, I contacted our Social Worker and Case Manager challenging them to explain why his 13.3mg Exelon Patch and Namenda XR haven't been covered under Hospice (other than the high cost to them). When they didn't respond with help or any answers, I wrote an email directly to the CEO of our non-profit Hospice, included below. Two days later, I have my answer--they will be covered, and should have been from Day 1 of this Hospice round because they are related to his terminal diagnosis. Hospice will be reimbursing me for 5 months of co-pays ($90 per month), because of their error.
No one should have to jump through these hoops to get answers, and have access to critical medications.
This was my e-mail to her:
"I need to get these two hospice diagnosis-related medications covered by you ASAP, before Medicare forces me into private pay for them and puts a huge, undue, additional financial burden on me, his primary caregiver, who is also juggling a full time job through losing my husband of 27 years. I understand it is "standard practice" in Hospice to discontinue cognitive meds such as Namenda XR and 13.3mg Exelon Patch in favor of anti-psychotics for dementia patients, but this can't be done for Gary. With Lewy Body Dementia, and in Gary in particular, antipsychotics cause bad reactions. Gary is in a very fragile state and doesn't need to be put through the trial of discontinuing medications that will make him completely unresponsive. We have small windows of time where he is very cognitively aware, and last night I was able to capture 5 minutes of video that prove these medications are helping him dramatically, even if only for brief windows of time, where he can still communicate with us, and actually still has some incredible hand-eye coordination. I've witnessed him several times since diagnosis when doctors have taken these medications away...and he becomes a complete, unresponsive vegetable...and that was when he was in much better condition. He and we have been through enough in the past 2.5 years with his decline and we want to keep the opportunity to communicate with him and have him continue to participate in our lives at home as much as possible until the end. He is already completely bedridden and sleeps most of his days, but every few days, we are blessed with a wonderful couple hours as I was able to record briefly last night. He then took a nap and was out again, as your nurses and doctors seem him most often. We would not get those moments without these medications. Gary's story and struggle are very profound as he has survived a previous round of Hospice last spring/summer after a pelvic/hip fracture that should have killed him. His 1/year anniversary of that fall was just at the end of March and he is still here on borrowed time.
Please help me with this. No one else has dealt with it, and it is so very, very important for the comfort of Gary's final weeks with us, with Medicare closing yet another door on terminal patients. He continues to lose weight and have multiple other complications, including recent, undiagnosed, random fevers. Please help us to keep him emotionally and cognitively comfortable.
Thank you very much for your assistance, and again, I apologize for coming directly to you. but I wouldn't do so if I didn't feel it was warranted. I'm not trying to get anyone in trouble, just trying to continue to advocate for my husband's care and make sure he has the best end-of-life quality of care possible, without it breaking my family."
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