Mom is 94 with congestive heart failure and advancing dementia. We want to move her to palliative care so to provide her comfort and provide us with a sense of security in her safety. She has started to refuse her medications believing they are "tainted". Without her meds we know she will decline. Has anyone been in this position?
I agree with Alva that hospice is the better choice at this point, and don't hassle her about the meds.
If you look under level of care you will see that some only provide one basic level while others provide several levels. If you choose one that only offers in home residential hospice for stable patients, ask what happens when the patients condition advances. Others offer multiple levels. They all identify as hospice.
https://www.medicare.gov/care-compare/resources/hospice/levels-of-care
Here is a link that might help.
My mom’s doctor suggested palliative care in the beginning of her decline. All this really means is that your mom won’t be as proactive regarding her medical condition. For instance, no surgeries would be done, no treatment of cancer, etc.
Hospice care is a better option in my opinion. My mom recently died in a hospice house house. She received excellent 24/7 care. She was initially kept on her Parkinson’s meds. She was also given anxiety and pain meds. At the end, her Parkinson’s meds were dropped. Hospice care is comfort care. You will have the advantage of a very knowledgeable nursing staff that are fairly accurate in determining what is needed at the time. There will also be a caregiver staff, social worker and clergy to assist the patient and their family. I am very grateful that my mom received care from a truly wonderful hospice organization.
I would advise to research all hospice organizations in your area. If possible, please choose one that has an ‘end of life’ house or facility. Check all stipulations for acceptance. Each hospice organization has their own set of regulations.
Wishing you and your family all the best.
Sadly they didn't really inform me initially that she had been refusing or spitting them out (they are rather large.) Had they told me, we could have tried the ice cream or pudding method sooner. She ended up having a stroke around Labor Day, which affected her right (dominant) side, swallowing and speech (slurring.) She refused transport and though the EMT tried to get me to authorize it, my take was to what purpose? We knew it was a stroke, she was 97, already in a wheelchair and there really was no way to reverse what had happened. I left it in his hands: if you can get HER to agree to go and get her through any testing, fine, but no hospitalization. I know she wouldn't want that. She still refused.
I don't think they tried the open capsule method. They did try some OT/PT to help her with feeding herself and pivoting when being helped with toileting and in/out of the bed. Hospice initially declined, but the MC nurse was adamant and finally was able to show she was losing weight (that was their big reason to decline - she hadn't lost weight in the previous 6 months! Of course not, she just had the stroke! There was more to all that decline of hospice, but this irked me.)
Anyway, she likely wasn't getting any meds and had a second stroke mid-December which did more damage.
Hospice is likely the right way to go. However, if she can still swallow, perhaps they/you can try getting some medication into her through the ice cream or pudding method? Hospice doesn't mean stopping any current treatment, just no treatment for additional issues (more minor things like UTIs can be treated as well.) This wouldn't be to cure anything, but might avert some of the issues AlvaDeer points out. Comfort meds are fine, but if taking some of her regular meds can reduce fluid retention, she might be more comfortable. It certainly can't hurt. I wouldn't force the meds, but if she's willing to take in ice cream or pudding, why not slip a little in?
But transitioning to palliative care is a good first step. And you do not even need to tell her if you don’t want to or if you think she would be upset.
If your mom truly does not want to take her medications any longer and understands the consequences, then hospice may be a better option. Palliative care is "comfort care" but they would have to intervene if she stops breathing or her heart stops. Hospice care provides "comfort care" as well but will not intervene when clinical death occurs.
When I refused Hospice for my wife, the hospital care manager suggested palliative care. I checked around and the best that they could do for me was a monthly nurse visit, an aide a couple of hours per week and a phone number I could call if I had a problem getting needed services from a doctors office. I have a long standing relationship with my wife's doctors, their nurses and office staff. She has seen some of them for almost 20 years. If I need something done, it gets done, I don't need an extra voice to phone them. I have her PC and cardio's personal cell number in case of emergencies. I always go through the answering service first, but if that doesn't get the results I need I use the private number.