Should hospice care be discontinued?
My mother has been on hospice care since June. Yes, we are surprised that she has not yet passed. She has gone from bedridden for days to getting up and dressed and telling my father she wants to go shopping and out to lunch. This is a cycle that keeps repeating. But the "up and at 'em" days are becoming fewer and further apart. She has gotten progressively weaker and weighs only about 80 lbs.
Last week she wanted to go out but by the time dad got to the grocery store, she was unable to get out of the car and told him she'd wait for him. Mom has always been a shopper and for her to be so close and yet not shop tells me that she is failing.
The hospice nurse last week told my parents that mom is being discharged from hospice care and referred back to her primary care physician. I am shocked that they would do this in the midst of the coronavirus restrictions, the shelter-in-place order in their state, and mom's continued weakened condition. I have made several calls to the agency only to get be told to call someone else each time. I am now waiting on the fourth person to return my call.
What does mom lose? Primarily, the meds available through hospice -- doctors never offered the pain relief that hospice has provided; when she gets anxious and hysterical, ativan will no longer be available; prescriptions are delivered in a timely way without dad having to leave her to go to the pharmacy. She also loses someone checking in on her several times a week (even though when she knows the aide is coming, she gets up and dressed early and then tells the aide to leave -- this is her contrary I-am-still-in-control attitude). She loses a weekly nurse visit to detect any changes. She loses the social interaction with the hospice staff. Dad loses someone being a phone call away when something of concern happens. Dad loses the ability to run to the store while the aide is there.
They have not availed themselves of all that hospice offers. Mom became angry whenever dad had someone come in to stay with her, so after a few tries, he gave up. He hired some outside folks from an agency for overnight care -- they proved to be useless (dad even had to wake one up to tell her that mom needed help going to the bathroom and another one woke dad up to tell him that mom needed help going to the bathroom, sigh).
Do I have a leg to stand on to object to them dismissing mom from hospice care at this time? Any suggestions to properly appeal their decision before it is a done deal -- things I should say or things I should NOT say?
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The question is whether hospice is the right service for your mother. Its broad brush criterion, as I understand it, is a life expectancy of six months or less; and that your mother requires an increasingly high level of care isn't at all the same thing.
Back in June, was there any marked, measurable change in any of her vital functions that would have justified the decision to admit her to hospice care? E.g. heart function (echocardiogram) or renal function (various measurements, look at her medical notes, you should see something related there).
I'm hoping you might be able to dig up the right type of data to challenge the discharge decision. The impact your mother's care is having on your father, while obviously important for other reasons, is not going to do it.
https://www.medicareadvocacy.org/medicare-info/medicare-hospice-benefit/
This can't have been the only notification - what have your parents had in writing about it?
The reason I ask is that, if you want to appeal, you have to know what stated reasons you'd be appealing against. Can't see anything in your post (sound arguments though there are for your parents' needing support in general) that makes hospice specifically the right service for your mother. What's her primary health condition that made her eligible in June? - and how is that progressing?
Hospice care will NOT be discontinued until after Mom sees her previous pcp and he accepts her back into the practice. Her appt with him is April 21. Dad thought it was effective this week. At that point, hospice will work with pcp, if he takes her back, to maintain the level of meds she now has plus continue the access to ativan.
My father needs to keep a log, sit in on the nurse visits, and be honest. Since I talk to them nightly, I am going to keep the log and I have emphasized that he must be honest with me. Mom has had numerous falls and he "doesn't want to worry" me so he does't tell me. I told him not to disappear during the weekly nurse visits but to stay and answer her questions.
Mom's weight has gone down but they don't use a scale, they measure her arm. She was 19cm in October and 17cm in February.
Dad has also failed to tell me that she is not making it to the bathroom in the middle of the night and he has to get up, clean her up, and change the bed linens. Sometimes he even has to clean up the rug and floor. My dad was always a germophobe and to see him step up and take care of mom this way is amazing to me.
They are both 89 years old, they live five hours away from me. I am the oldest, my sister lives closer but is still working, so by default, I am the go-to person. My husband has FTD and mild neurocognitive disorder, so that complicates my participation in their life.