xinabess Asked September 2017
Can you arrange hospice without telling the person?
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Long story short: My mom is getting to the point where she should be on hospice (at home). She has multiple health problems as well as some dementia and can't make rational decisions. I tried to talk to her about hospice and she was horrified that I could mention such a thing.
She has 24/7 home care now, so it wouldn't be that different. She'd still be at home, just getting more services, and not being rushed to the ER with each new infection. Can I just put these services in place without telling her?
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However, I think trying to keep the person unaware of hospice placement- if they are still fairly alert - is very problematic.
Remember - there is a team of people included in hospice care. Making sure that no one "spills the beans" could prove difficult - especially as frequently a substitute could be sent at any given time for any of the team members.
If the hospice patient is in a facility of any kind, there is also that group of people to trust to not let the hospice status slip. If the patient is at home then the risk is less. But of course there is friends and family to worry about if they are aware of the status.
Ultimately, I tried to keep my mothers hospice status from her as long as possible but I even found myself almost slipping and faultering - dancing around the status when I was backed into a corner with mom wanting to see a doctor about this or that. I'm a terrible liar!
At some point it became evident that mom knew if her hospice determination- but either her dementia or her weariness of continuing to "go on" in her compromised state, made it a non-issue for her.
Getting a hospice evaluation will at least start a conversation about what your mom wants.
Her current home care provider.... is there a MD who is medical director?
OR is it mom has a regular MD and they wrote orders for home care that this company is basing care on? Whichever the MD is with is where I'd suggest you first speak with to get orders for hospice evaluation.
If your her dpoa the you as her dpoa can select the hospice provider as it's a Medicare benefit so it's "self directed" (so in theory you can choose which provider). 2 big national ones - Compassus & Vitas - I've dealt with both & positively. Oodles of regional ones. I'd ask around to find the right fit.
the bigger ones will be able to set up mom with equipment very quickly. Perhaps even within 24 hrs. They also have more paid staff with specialized capabilities. If your mom should need really intense pain meds, smaller hospice may only have 1 RN that's doing the schedule 3 , 4 controlled meds. It's something to discuss with whatever company selected.
My mom was on hospice for 18 long l....o....n...g months. I switched providers within the first 90 day cycle, so change can be done if things not working out. Medicare paid an average of $ 4,300 a mo to hospice for 3 x a week visits for mom at her NH. Her NH viewed hospice as a very welcomed addition to their care team. Maybe 4 different hospice groups at the NH. It's to me a wonderful Medicare benefit. Good luck in your quest.
In my Mom condition she was in final stage of dementia, so there wasn't any communication. Hospice was called and Mom was accepted. All I told Dad was that the long-term-care where Mom was living was going to have an extra set of eyes and ears to watch over Mom.
For my Dad, he was in the hospital with aspiration pneumonia, and the hospital suggested Hospice to me, and the hospital called Hospice prior to my Dad returning back to Assisted Living/Memory Care. I think Dad knew his time was limited, so he didn't ask any questions.
I asked her some years later why she and my dad hadn't availed themselves of the help that was on offer. She told me (no idea if this is true or not) that the organization insisted upon announcing to all and sundry, including the patient, that the illness was Cancer (don't know how old you are, but that was a word NEVER said out loud until Shirley Temple Black/Happy Rockefeller/Betty Ford announced their breast cancer in the media. You really can't have any idea how much of a secret disease cancer was in those days.
I'd like to think that Hospice organizations have worked this out in the past 50 years or so that there is less torturing of patients and families than back in the "good old days". Which I don't miss at all.