Josh--I think doctors who treat dementia patients need to give families more advice of when to call hospice in; we just don't know and I've read that most wait too long. My husband's doctor is excellent, but he hadn't said one word about hospice to me. Yet, when I asked him he did a referral immediately and within days, my hb was approved. As you know, it is so easy for dementia caregivers to get caught up in the huge amount of day-to-day responsibilities and fail to see the big picture because we're too close to it and overwhelmed, to boot.
my DW was accepted last week into hospice care. most of her daily routine has been reduced to going to the bathroom 1 or 2 times per day, drinking small amounts of fluid, nibbling small amounts of food if and when she is awake. She has accepted the beginning of the end and other than some anxiety and wanting to be near me all the time is quiet. This was stated to the hospice nurse during the evaluation last week. A DNR order was created and any effort to resustain life was stopped. She is off all meds except ativan and celexa. The hospice nurse has agreed that each and any extenuating care would be looked at on an individual basis and unless approved by us would not happen. So it seems to me that hospice follows the criteria set by the family at the time of review at least that was what happened in our case. Her primary caregiver ordered the stoppage of all meds except the two mentioned and hospice seemed ok with it. so we will wait and see. Guess God really is now in the drivers seat. full speed ahead. just remember this does not stop what is happening to the caregivers mental state in the meantime. their anxiety and emotions still live on daily.
Divvi, once again you have zeroed in on the facts. Earlier on this thread I mentioned my amazement at my husband's acceptance by hospice and you said that finances can play a part, i.e., if business is slow they will accept patients. Today, when the hospice aide came, she mentioned that "the census is down". I asked what that meant and she said it means the number of patients they are taking care of has declined. That would make sense in light of the Medicare rules tightening up--so they appear to be accepting new patients, at least for the 90 days, to keep the cash flow going!
Most physicians I know actually dread having to suggest hospice or having "hospice discussions." This group here is unique, but many families feel abandoned by doctors or feel the doctor is giving up when suggesting hospice. I've had families swear at me, one threw me out of the room when I have brought it up. I usually set aside an hour if I'm going to bring it up, so it is not like I'm casually saying it and walking away. I'm putting together a sheet that families can use to give to their physicians to discus goals of care. Many physicians don't realize which patients are really open to hospice and ready for it and which ones are not.
Nothing wrong with being on hospice and then "graduating" or coming off of hospice. Happens all the time. For profit hospices may bend the rules a little.
Josh--I know there is a stigma associated with hospice in people's minds that if a patient is ready for that stage, it's the very end. I had to work on my brother for a long time--literally years--before he would agree that we should request an approval for my Dad. Then my Dad passed two weeks later. Someone (social worker type?) needs to educate families more so that docs can suggest it without turning families off. Good idea on the goal of care sheet.
Hi everyone, here is my template/work sheet. Let me know what you think. there are plenty of other options out there, this is my version. Feedback would be great. https://files.me.com/joshandsusie/yggr1r
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