Hello all. We have transitioned my MIL to hospice care. This was a hard decision for my BIL, who has medical POA, but he was finally able to see that the benefits and services will outweigh trying to coordinate her care through palliative services.

I do think there is some fear and concern as the transition is made from palliative to hospice care. It feels very final, although I know we could step back from hospice any time if we chose to. My personal concern is that one of the things the hospice nurse first recommended was antipsychotic medication for my MIL's anxiety, agitation/sun-downing and hallucinations. We've tried Ativan and it does not work. Alternative medications are very strong and will increase her fall risk.

We don't want my MIL to be in a stupor from medication, or have increased medications hasten her passing. Has anyone ever been had these feelings when transitioning their LO to hospice?

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Pros and cons...she has agitation and anxiety which can be considered a type of pain. A side effect of medication may cause sleepiness, but a good hospice nurse will titrate meds based on their dosage. On the otherside, don't give meds and she will suffer in the name of keeping her fully awake. Hospice means comfort care and alleviating pain and suffering.
I think a lot of people get confused that hospice overmedicates. What I see is that the disease process takes over because life saving treatments are removed. The patient gets weaker and tends to slip into more and more sleep
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My only question is , what is her quality of life .,. ?
On a personal note, I have already told my adult children that if hospice is called in (usually end of life) and I hallucinate and am always anxious, don’t know who I am or who they are , medication me if it is suggested, keep me comfortable, tell me you love me and tell me it’s ok to pass.. The few people I have watched pass would have been mortified knowing the lengths the family went through to keep them going (mother , sister , son , MIL. ) This is only my personal opinion ...
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I just walked this road last month with my dad. It was my first experience with in home hospice. You’re correct, hospice does feel very final. In our case, my dad was very cognitively on top of it and made the decision himself to enter hospice care. His trusted doctor advised it and after some thought, my dad agreed. At first we used Ativan to help my dad with anxiety and it was fine. In the final week, when he stopped getting up at all, we went to using both morphine and Haldol. Neither was used for long, but both were effective for having him comfortable, which is the premise of hospice, keeping a person comfortable until the end. I was the only one who gave him the meds, under the direction of the hospice nurses. Sometimes it wasn’t needed as often as I had permission to use it. My dad, up until the last 48 hours, did still talk with us, wasn’t in a stupor, but most importantly was calm. But I would take seeing him sleeping heavily, being “zoned out” whatever, any day over seeing him riddled with anxiety and pain. The meds in no way made him die quicker, I researched the exact amounts I was giving him, it wasn’t nearly enough to cause death, even when considering any cumulative effect, it wasn’t enough. Hospices are acutely aware of the “death angel” reputation they carry, after all, most all of their patients die. They certainly aren’t going to give meds in amounts that kill. The nurse had me log each and every med and amount I gave, she checked it each time she came. And when my dad died, she came and immediately measured what was left of each med and destroyed the remainder of them. They absolutely wanted documentation of the meds being done in proper amounts. And I’m grateful, I didn’t have to watch my dad be utterly miserable anymore. Hospice isn’t perfect, much of the care is still on the family, accept all the help you can get, but hospice does help people out of this world when it’s their time in a compassionate way. This is hard, I wish you peace as you walk through it
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First off I would like to reassure you that being under Hospice care doesn't mean that your MIL will be dead in 6 months. My husband has now been under their care for 21 months. Also, just because Hospice recommends a certain medication for your MIL, doesn't mean that the family has to agree with it. There were several times over the last 21 months that I refused their recommendations on certain medications that they were wanting my husband to try, as after researching them, I as his POA and wife didn't feel they were necessary or in his best interest. You and your family still have a say in your MIL's care, even under Hospice care.

My husband is now actively dying, and his nurse really wants me to take him to the Hospice home here, where they will knock him completely out, so he won't feel the pain he's in, until he dies. My husband doesn't want that, and so I am honoring his wishes to die at home, and am doing my best to keep him as comfortable as possible with the medications they are allowed for me to have in our home.

Tell your BIL not to be afraid to speak up on behalf of his mom. He will now have to be not only his mouth , but mom's too. Best wishes.
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KaleyBug Aug 2020
Many prayers for you and your husband for an easy transition. My mom was on hospice at home for the past 8 months. She passed 11 days ago. My mom fortunately never needed any of the hospice meds. She was very peaceful at the end sleeping or holding mine or my dads hand. We always had the amazon dot playing background music Vera Lynn, Hymns or musicals. Sometimes I sang with it. We were able to continue my moms normal blood pressure and thyroid meds because we had BCBS as a secondary health insurance up until her last week when daily she was unable to swallow them whole or crushed . Hospice only supplied the senna. In many ways I was glad she had the secondary insurance this allowed her to continue Synthroid and Eliquist. Our hospice nurse was so compassionate when she did her supervisor facetime call with my mom a few days before mom passed she told her supervisor mom was no longer taking her medications and was now on comfort care. The supervisor asked what comfort meds we were giving mom and the hospice nurse said none she is very relaxed and peaceful. We talked about the normal breathing transitions mom would experience and these would be normal. ( I knew this though, since I was there at the end for my MIL and Nanny). Bless you for doing a wonderful job with your husband.
My mom was on Seroquel for four years that I cared for her for symptoms of anxiety and agitation. The initial prescribed dosage was 12.5 mg, half of the lowest dosage pill that is made once a day at 4 for her sundowning behaviors. Over the course of four years the dosage increased to 75 mg a day, still at 4. Many meds lose their effectiveness over time and need to be increased and/or stopped to maintain the desired effect. Mom was never in a stupor with her dosage, even when increased. The doc told me that he had patients on up to 400 mg a day.

The prescribed amount, to help your mom, does not have to place mom in a stupor. My mom could not take ativan either, it didn't work for her. Meds have different effects on different people. Finding meds that will help mom is often trial and error. Remember, the most important thing is mom's comfort. She does not like the sundowning or the behaviors that come with it either.
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