Is hospice still the right solution for my SIL (53) and all of her issues?

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Some medications will now have to be stopped and it worries me. Sister in law is now on hospice, almost a month now. They are wonderful, the help we receive is excellent, medications are delivered, any questions we have are answered by an RN and if needed someone comes out within 1/2 hour. Shower nurse is a great guy..including doing her hair and bringing little Barretts and making her feel pamperd. 3 medications have to be stopped now, 2 I have no issue with, but the humera really helps with her pain levels. SIL health wise has been steady, couple of storms where usually we'd in the ER for 18 hours have been weatherd comfortably at home, what she would have been hospitalized for was delt with with medications on hand. She is better, she is surprising the staff.....actually not unusual for her, she was diagnosed with cirrosis almost 4 years ago and told in 7 mo she would be in ICU awaiting a liver transplant...that didn't happen, but a year and a half later she was diagnosed with breast cancer which she received a double mastectomy for but thankfully chemo was not needed. She also has CHF, severe psoriatic arthritis, fibro, and had surgery 6 weeks ago for a hematoma in her cerebellum (brain) and has been having hallucinations the last two months. With all this, logically it is time for hospice...yet is it the best I can do for her? Last time she went under anesthesia (dec. 24) she wouldn't wake up and blood pressure dropped and they advised me to make THE calls. In the hospital they have to sedate her and use restraints. For the last week and 1/2 with respidol her mood swings are somewhat under control and hallucinations are at a minimum. She cannot get a transplant due to the breast cancer, she has to be cancer free 5-7 years and dr agree she will not make it that long. Logically I feel like any more invasive procedures are likely to kill her, at home she's comfortable now, has her dogs with her all the time.....but she's always shocked Drs, be it she gets some other illness not related to others, or she comes back from the brink...over & over.

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I am going to fight for the humira. I only found out Friday they wouldn't renew it. I think it's harder because she's so young, but honestly I don't think they can do much in hospital that hospice can't handle, they will still give antibiotics and IV fluids if needed. Her behavior has significantly improved...today she's very close to herself.....I myself am amazed! It's just so scary going from aggressive treatment, espically now when she's doing so much better. I was okay with it until the humeria....as far as she herself is concerned, she wants no more surgery and no more invasive procedures and looking over what hospice can provide, this is a fit. She does not want to go back to the hospital ever again. Even so, it's soooo hard switching. For us as caregivers this by far is so much better, we're on call 24/7 but at the hospital I was there constantly to keep her calm anyway and it always took days to get her medications back on track...plus most of the time they had her restrained with 2:1 sitters and she was miserable. I guess I want to make sure I'm doing the right thing for HER.
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Definitely discuss the humira with the hospice team. It's an anti-inflammatory and isn't a medication that would prolong life so I don't understand why they'd take your SIL off of it. Maybe the thinking is that the pain medication she is receiving is enough but if you think the humira helps alleviates her pain discuss it with hospice.
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I'm not sure what you are asking, although I can empathize with your uncertainty.

Why must humera be stopped now? If it is providing comfort and lessening pain it would seem consistent with Hospice's mission. Two drugs that were discontinued for my husband were added back when it was clear he was more miserable without them. Have you discussed this particular drug with the hospice team?

SIL is full of surprises and comebacks that amaze the doctors. Being on hospice won't prevent that from happening, would it? My mother improved dramatically on hospice and was "discharged" from the program after three months. If SIL comes back from the brink this time that will be wonderful and amazing. The real question is whether she is getting suitable care now. What would she get that would give her a better chance to come back from the brink one more time if she were off hospice?

What does she want? Is she comfortable with the decision for hospice care?

Hugs to you. This is an agonizing decision to have to participate in. My heart goes out to you.
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