This patient spends every waking moment sobbing, shaking, begging to die, does not recognize any family or friends, doesn't know where she sleeps or eats, is highly agitated when not heavily medicated, basically not one ounce or "quality of life" or "dignity" remaining. Why?
Sometimes I think those maintenance drugs are there from habit. They were needed/useful once and nobody has bothered to evaluate whether they are still useful.
The first year my husband had dementia the symptoms were very extreme (probably the result of inflamation in the brain, which we didn't know then). We got a wonderful geriatrics specialist for his primay care, and she took him off all of his drugs except those prescribed by the dementia specialist to treat those symptoms. As Hubby's symptoms lessened and it became clear he may not be near the end, the geriatrician gradually added the maintenance drug back. If he was going to be around, possibly for a few more years, he might as well be as healthy as he could be.
Sometimes it is not clear-cut what is for quality-of-life and what is life-extending. For example, my husband has heart issues. He'd really prefer to die of heart disease than to die of dementia. Why is he taking heart medications? When I discussed this with a cardiologist he said the drug could be considered a life-extender -- that is why he prescribed it for me -- but it also protects against stroke. People don't necessarily die of strokes, but suviving a stroke with dementia would be defintiely a decrease in quality of life. So to continue it or not is a judgement call.
All of Hubby's other maintenance drugs reduce his discomfort or improve the quality of his life. But it is a question we revisit at least a couple times of year, with a doctor who specializes in treatment of the elderly.
So, I think your stumper question is an excellent one. Is this patient eligible for Hospice? I think that they could help the patient's family sort out what drugs could be dropped. And they could add other drugs to keep this person calmer and more at peace. If the patient is not yet eligible for Hospice, I think a frank discussion with the doctor is in order, by the person who has medical proxy for this patient.
Good question.
She improved within a day or two. Your mother is obviously suffering. As Jeannegibbs said, there are medications that could help keep your mother calmer and more at peace. Has your mother been evaluated by a Hospice representative? They are the ones who come into the facility and review the chart and visit the patient and then decide. In my mother's case, the nurse manager of the floor contacted Hospice and I met with them after their review.
What I learned was there are medications that are only available through Hospice. These medications had to be delivered to the facility at the request of the Hospice nurse practioner. Your mother is suffering mental anguish and as Jeannegibbs said someone has to talk to her doctor about this. Not only does Hospice provide the medicines, but they also have volunteers that come in and visit with the patient and can offer so much comfort.
In my mother's case, her doctor wasn't responding quickly enough and things were delayed bacause of this. The facility was calling ,him, as well as the Hospice person. So, I called him too, and was told he wasn't available - I described situation and told them if he's not there, I wanted to speak with his partner. Taking things into my own hands expedited the process. We are the patient's only advocate. In my case, the sqeeky wheel gets the oil. Hope you can get help for your mother. Bless you and take care.
This is my experience in getting them evaluated:
my mom, who is mid 90's and Lewy Body dementia, moved from IL to NH last year. Last fall she had 2 TIA's back to back, 25% weight loss in 6 weeks, critical H&H. When we had her care plan meeting, I brought up hospice and that I wanted her to be evaluated by Vitas.Vitas was the group that my MIL was with and I found them to be very, very good both for my MIL (a most difficult person) and in dealing with all the family members, none of which lived in the city. I also suggested Compassus, which a friend had been with as a hospice patient - they were also great - but not in my mom's area. I wanted Vitas because they have a free-standing unit that patients can get transferred to when it really, really is near the end of the hunt in the city where my mom is. This one is an old women's & children's hospital that has been retrofitted to be a hospice - it has a whole different look and feel than a hospital or NH, very calm and soft as opposed to the NH. If you have either in your area contact them.
As 3pink said, I too found was that not all hospice providers are equal. Only a few carry the more serious pain management Rx's on them that cancer patients need. Some only do vitals and basic evaluation and have minimal training. The bigger hospice groups have enough staff that if your mom needs a class 4 drug they can administer it right there and then during the hospice visit, otherwise, they have to have the nursing staff contact the MD at the NH and put in the recommendation and that whole process takes time...often a day wait. Not good.
My mom rallied and no hospice needed, she's a tough old bird.
FAST - Hospice Prognostic Systems:
The National Hospice and Palliative Care Organization (NHPCO) recommends the Functional Assessment Staging (FAST), a 7-step staging system, to determine hospice eligibility. The FAST identifies progressive steps and sub-steps of functional decline. NHPCO guidelines state that a FAST stage 7A is appropriate for hospice enrollment, based on an expected six month or less prognosis, if the patient also exhibits one or more specific dementia-related co-morbidities (aspiration, upper urinary tract infection, sepsis, multiple stage 3-4 ulcers, persistent fever, weight loss over 10% within six months).
Functional Assessment Staging (FAST) Stages
-
1. No difficulties
2. Subjective forgetfulness
3. Decreased job functioning and organizational capacity
4. Difficulty with complex tasks, instrumental ADLs
5. Requires supervision with ADLs
. 6 Impaired ADLs, with incontinence
7a Ability to speak limited to six words
& 7b Ability to speak limited to single word
7c. Loss of ambulation -
Inability to sit, Inability to smile
, Inability to hold head up
.
************
The Mortality Risk Index (MRI), a composite score based on 12 risk factor criteria obtained from using the MDS (Minimum Data Set), has been suggested as an alternative to FAST. Mitchell (2004) developed and then validated the MRI by examining data from over 11,000 newly admitted nursing home patients. Among patients with a MRI score of over or equal to 12, 70% died within 6 months (mean survival time not reported). Compared to FAST Stage 7C, the MRI had greater predictive value of six month prognosis.
Mortality Risk Index Score (Mitchell). MRI is
p
oints system based on risk factors:
Complete dependence with ADLs
1.9; Male gender
1.7; Cancer
1.6 Congestive heart failure
1.6; O2 therapy needed w/in 14 day
1.5 Shortness of breath
1.5; less than 25% of food eaten at most meals
1.5; Unstable medical condition
1.5; Bowel incontinence
1.5; Bedfast
1.4; Age over 83 yrs.
1.4; Not awake most of the day
1.4.
Risk estimate of death within 6 months
(based on NH residency)
Score Risk %
0 8.9
1-2 10.8
3-5 23.2
6-8 40.4
9-11 57.0
= 12 70.0
The other thing is that once they go on hospice, the rules are pretty strict on seeing doctors. They pretty well have to be seen by the MD’s affiliated with hospice. If she goes to see her old MD or you take her to the ER or do anything that promotes "curing" her, she can be discharged from hospice. Medicare can decline to pay for that doctor visit, hospital or ER cost. Everything medical has to go thru the hospice.The NH get this but this can be a real issue for hospice at home situations. Often this can be hard for family to go along with but that is what the hospice system is about. Good Luck, none of this is easy.
It would not have been appropriate for them to stop treating me because of my anguish. I had an excellent chance to recover (and, obviously, I did). But if I'd had terminal cancer or was in late stage dementia, I would have wanted comfort measures above all else. Hospice understands that.
Doctors Encouraged to Discuss Care Options, and Goals With Patients and Caregivers
https://www.agingcare.com/News/doctors-discuss-care-options-with-patients-149886.htm
And I know this sounds trite and impossible, but please try to take care of yourself, too. It is what your mother would want.
Your mother is "playing you"?!! Well, now you have an explanation for all her suffering. Can't professionals sound like total idiots sometimes?
Also, when I am not satisfied when my mother is having a problem, I track down her doctor - he is the one we chose for the nursing home - and is not easily available. Don't know if the nurses like me going over their heads, but there are times that they are extremely busy and I realize this, so I just go ahead and call the doctor and leave messages until I hear from him. My heart breaks for you and your mother. And, yes isn't it something when the professionals can be total idiots saying your poor mother is "playing you". Blessings to you. Take care.
I agree with you about people who pass away naturally and peacefully - it is referred to as a blessed death and truly it is. I wish you could get Hospice in there to take over - this seems to be out of control and not the best example of our medical professionals. Your mother is suffering mental anguish and so are you by having to watch and not be able to help her. At this stage, she should be resting comfortably and at peace.......hopefully someone will come along and help and guide you. I will keep you in my thoughts and prayers. I just feel really, really badly you are gong through this. It is quite upsetting to say the least.