My mother has had alzheimer's for a while now. She is considered end-stage and in a hospice program. She has developed a vaginal discharge. It apparently doesn't bother her. She is basically non-verbal but can communicate through actions if she is having pain, etc. She is not scratching or anything relating to the discharge. The nursing staff/doctor/hospice did a culture of the discharge and it came back negative for infection. They treated her with an anti-yeast medication with no results. HERE IS MY DILEMA: Her living will states no operations, and no antibiotics. As a nurse and her POA I will allow the antibiotic but absolutely refuse to budge in the operation department. She discussed this with me long before the alzheimers diagnosis and I aim to follow her wished. They want to send her to a gynecologist for a pap smear and exam. What are your fellings. If she goes to the gyn, what can he find or do that her medical doctor can't, except find cancer which I will not have treated. She I put her through the trama of the gyn exam only to make the staff feel better. What I don't understand is that the hospice nurse agrees that she should be seen...please respond Thank
Follow your heart and conscience. This is where mine takes me. Cattails.
GolfQueen: Call Hospice and ask for the regular nurse.
She entered the final week of her life, almost motionless. The last three days she was given comfort care, even though her only sign of discomfort was in the quality of her breathing. We never entertained any thought of antibiotics, or any other intervention.
Hospice was there for advise, help and evaluation, through all of the final 5 months, and I am so thankful I never had to worry about 911 being called, and some horrible form of intervention occurring. We made sure she never suffered bed sores, or any other problems due to being in bed 24/7. It was time for her to leave me, the pain is unbearable, but I could not wish for her to continue the torment, of what was happening to my wonderfully priceless Eileen. January 16, 1955 until January 15, 2012, RIP.
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 more than 10% within six months).
Functional Assessment Staging Test (FAST)
Stages:
1. No difficulties;
2. Subjective forgetfulness;
3. Decreased job functioning and organizational capacity;
4. Difficulty with complex tasks and instrumental ADLs;
5. Requires supervision with ADLs;
6. Impaired ADLs, with incontinence;
7. A. Ability to speak limited to six words & B. Ability to speak limited to single word
& C. Loss of ambulation
& D. Inability to sit & E. Inability to smile &
F. Inability to hold head up
.
The Mitchell MRI is a points based evaluation. The Mortality Risk Index (MRI), a composite score based on 12 risk factor criteria obtained from using the MDS (Minimum Data Set). Mitchell MRI 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 more than 12, 70% died within 6 months. Compared to FAST Stage 7C, the MRI had greater predictive value of six month prognosis. The MRI as only been evaluated in newly admitted nursing home residents; it has yet to be validated in the community setting or for previously established long-term nursing home residents. My mom's gerontologist used Mitchell but they are affiliated with a medical school and are pro-active with data gathering.
Mortality Risk Index Score (Mitchell)
Points & Risk %:
1.9 Complete dependence with ADLs;
1.9 Male gender;
1.7 Cancer; 1.6 Congestive heart failure; 1.5 Bowel incontinence; 1.6 O2 therapy needed w/in 14 days;
1.5 Shortness of breath; 1.5 less than 25% of food eaten at most meals;
1.5 Unstable medical condition; 1.5 Bedfast; 1.4 Age over 83 years;
1.4 Not awake most of the day.
Risk estimate of death within 6 months
(Mitchell score):
Score Risk %
0 8.9
1-2 10.8
3-5 23.2
6-8 40.4
9-11 57.0
12 or more 70.
Did they tell you how a patient is evaluated for hospice? We went through 2 different experiences with hospice. My MIL was on hospice after sepsis complications from surgery and congestive heart failure. Hospice was wonderful. She was a very difficult person too.
My mom was evaluated for hospice - she had gone through a very bad patch, with back to back TIAs, persistent fever and more than 10% weight loss within 30 days - got evaluated and accepted. Then rallied, gained weight and got out of hospice within the 30 day window at the beginning of hospice. The hospice MD approved her but her NH MD didn’t… so no hospice. She is in a NH. Now she is mid 90's and there will be another hospice evaluation in her future realistically.
There seems to be 2 "Prognotic Systems" set up to do hospice evaluation:
FAST & the Mitchell Mortality Risk Index (MRI).
I think either one can be used and accepted by Medicare (hospice is covered by Medicare).
Is it the case that your mom is in a facility like a NH and also on a hospice group?
If so, then there are 2 different medical directors involved - the MD who is the medical director of the NH (this person should be listed on the masthead when you enter the NH and listed on all information printed/web & in documents with the state) and the medical director of the hospice (this should be a whole other MD.). At my mom's NH, there are 3 different hospice groups (Vitas, Odessey and another I can't remember) that provide hospice services & all have a different medical director. If you are doing at home hospice, then you probably are just dealing with 1 MD who is the medical director.
Personally I'd stop dealing with the nurse and I'd do a short, pointed letter and fax it over to the medical director of the hospice and the medical director of the NH. In it I'd state my concern as DPOA, MPOA and immediate family member that nursing staff is pressuring family to start procedures or seek new physicians for what may be considered "non-pallative" care for your mother who is a hospice patient. Keep the fax short and maybe 2 paragraphs. You can also send this via return registered mail but that could take a week++ for delivery and return of the signed off card. At this stage, you don't want that time lag.
My first thought is that this "nurse" is making decisions outside of her purview.
Remember once they go on hospice, the rules are pretty strict on seeing doctors. She pretty well has 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(s), hospital or ER cost. Everything medical has to go thru the hospice approved protocol. This can be hard for family to go along with but that is what the hospice system is about. You may be in the odd situation that the nursing staff just doesn't truly get what hospice is about and should not be working in hospice.
I have had nursing issues at my mom's care plan meeting. These are the required meetings every 3 mos. At one last year at my mom's old NH, there was a new "nurse" - not an RN or LVN but an aide - who piped up when we were reviewing the care plan about my mom being a "no-code", saying how can you do that, how amazing fit my mom is, you'd be letting her die...yada, yada. I firmly stated that was her wishes and showed her the DNR she did back in 2002. Then she started on it again, at that point, I told the social worker to have the DON (Director of Nursing) come to the meeting asap. The DON is pretty much god at most NH as they run it (most NH are on this system and the medical director comes by once a week). When she showed up, I told her that my mom's advance directives were clearly in place and that I did NOT expect any deviation or commentary from that decision. You could tell she was major Po'd with the aide and having to come to the meeting. I did a follow up fax to the administrator of NH regarding the care plan meeting too. The aide got canned the following month. imho some people just should not be working in this type of facility when they cannot get past their personal mind set or religious beliefs that interfere with providing care.
You know the situation best and you have to be the advocate for your mom. Stick to your guns. Be firm and follow up. Good luck.
Take care,
Carol