Why give "maintenance meds" (blood pressure, cholesterol, vitamin D, potassium, etc) to a person with late stage severe dementia?

The hospice usually does either FAST or MRI score to evaluate:
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.

Hospice is a huge help

Ohio, can you call in a different doctor for another diagnosis? It sounds like One Flew Over the Cuckoo's Nest over there. She should be in a "calm and comforting" environment, and they are out there. Have you called the Ombudsman for the care facility? There is no reason for her to be suffering so. So sorry for you both.

See what you can do to get her evaluated by hospice and make that an independent hospice group not necesicarly the one(s) used by the AL. Not all hospice are equal. The choice of hospice used should be your decision.I've found that sometimes the DON at the NH has their pet providers and not always in your best interest. Medicare will pay for all medical services once they are on hospice too but the room & board part is not.

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.

I am caring for my mother in my home. She is in the last stage of dementia and is on hospice. Hospice has been absolutely wonderful and has helped me with this question. The goal is her comfort. She is on oxygen for a lung issue and I still give her a vitamin (keeping up her nutrition helps prevent pressure sores which are very painful). She takes a med for her reflux (again, for her comfort), and a cough syrup. I have meds for her mental comfort as well and a sleeping pill. I have morphine on hand for when we need it. One of the biggest benefits of hospice is the nurse being available for questions such as this and to discuss any concerns I have. She moved in with me after being in a nursing home until money ran out. No-one thought she would live this long, but she has been here nearly a year because she improved and stabilized for awhile, but she is again going downhill now.

Such a sad, sad situation for both you and your mother. I agree with everything Jeannegibbs posted - My mother is in a facility and hospice was called in last year due to the severity of the pneumonia she had. She has since recovered, but it was hospice that sorted out the medications she was on and changed some and added new ones to help with the breathing and discomfort.

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 in fact my mother. She is in a "dementia care" unit of an assisted living facility. It is FAR from a calm and comforting environment, anyone with experience of this type of arrangement knows what I am talking about. She has people touching her, following her, climbing into her bed in the middle of the night, spitting on the floor, talking "martian" to her, etc etc etc. I cannot afford to bring her back home with me as she wuld need 24 hour care. (She lived with my husband and I for 2 years) Her doctor tells us she has "dead brain tissue" and I have personally witnessed several episodes that seem to be strokes. MRI's show progressive loss of active brain matter. Her days are mainly spent sobbing and begging to die and I am not exagerating. They keep mixing up medication cocktails to see how much of the day they can get her to be sleepy without falling on her butt and breaking something. she has lost "her voice" , her dignity, any quality of life, and I feel that I am failing her by not being able to advocate for her wishes. Hospice , I am told, is not involved until a medical doctor states a person has less than 6 months to live. Sad to say this but I actually pray she has a heart attack or gets cancer, like other people get....Is that twisted??? With those ailments there are medications that control the pain and bring comfort during the process of what "is to be". Mental pain is just not quatified the same way physical pain is. It drives me crazy when she is asked 100 times a day "Does anything hurt?" WHAT??? Every molecule from her head to her toe hurts--just not in a "physical" way. Just curious why doctors continue to use heart medications to extend this "life" , and is it barbaric for family members to ask why??

It is kind of a stump-the-audience question, isn't it? You didn't get 15 members jumping in immediately to give you an answer.

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.

Is this person receiving medical care from a physician to manage the symptoms of advanced dementia? Is she in a nursing home, your home, her home? Please provide more details so we can help. Is she being comforted, in a calm environment? Your second post seems rather cavalier and the subject is tragic. What's up?

Is this person your mother?

this must be a "stump the audience" question haha