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dafodil Asked July 2019

How does hospice work when a person doesn't want it?

Does anyone have any experience with Hospice for a parent who doesn't want it?

Windyridge Jul 2019
I feel that the responsible party needs to step in and order hospice for patients with dementia. We do this for loved ones with dementia regarding driving, medical care and all other care issues. We do it because they can no longer make rational decisions.

My mom had mild dementia towards the end and basically had fallen herself to death. I didn’t discuss hospice with her as she said she was just fine and should drive home. I signed her up for hospice and her last days were made much easier with the meds and care she received from hospice.
dafodil Jul 2019
Thanks Windyridge. It helps to hear this perspective especially since so much of this process involves grey areas where there is no clearcut obvious choice.
AlvaDeer Jul 2019
Not well if the person understands what it is and isn't ready for it. Hospice includes the patient FIRST, then the family. And Hospice comes when it is the considered opinion of the person's physician that the person has 6 months or fewer to live. This is not something that everyone wants to know. If this person is demented and not clear as to what is happening then just make it about "the visiting nurse". Wish I had a more clear picture of your situation.

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JoAnn29 Jul 2019
Why do you feel she needs Hospice?

To most people Hospice means they person is terminal. Maybe the person doesn't want to admit their time is short.

If its Home Hospice, you can tell them its Homecare. An aide only comes to bathe them. A nurse a few times a week. Family is still left with most of the care. If in a facility, again Hospice can blend in.
dafodil Jul 2019
thanks for your response, it is really helpful! I'm just planning ahead when I can. My parents haven't planned ahead and it's very stressful learning about these things right in the middle of it all.
AnnReid Jul 2019
In my mom’s case, hospice worked totally quietly, unobtrusively, and below her level of consciousness.

My mom despised being put on the spot or being in the spotlight. Hospice would bathe her, massage her body with baby oil, wrap her in a cozy nightie, position her comfortably in bed, and LEAVE.

They DID NOT pray over her, play guitar in her room, or sit with her unrequested.

If a hospice has been recommended, you should be able to choose services on her behalf, or choose another hospice.
dafodil Jul 2019
Thanks so much, this is very helpful to know.
cwillie Jul 2019
Hospice can't come in unless the principal agrees to it. IMO it is a grey area if someone has dementia, they should get to choose the way they die and an ethical hospice provider should also be taking their wishes that into consideration if they are contacted by the healthcare proxy.

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