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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

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Personally, I agree with you. Why put her through the tests if she is in end stage dementia and she can't have surgery even if they find something wrong. If she is not bothered by the discharge, I'm surprised that a hospice doctor is advising this exam. I believe as her POA, you can refuse treatment. You may want a second medical opinion if that helps you feel better about the decision.
Take care,
Carol
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As a hospice nurse for 13 years, I am 100% in agreement with you, If monostat or other yeast med doesn't help, then too bad for the staff. I assume it is the smell or concerns about skin breakdown that would make them feel this was so urgent, but there is absolutely no way I would subject her to a gyn exam or further diagnostics. Shame on that hospice nurse. Stand your ground. This is about comfort and dignity, not treatment.
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Absolutely no exam. Stand your ground.
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I totally agree. Stand your ground on this - no gyn exam. Unfortunately I had hospice staff problems when my mom was in a hospice facility - nothing like this - my issues were directed on instructions given to them and not followed, they not informing me of things, not being compassionate, and the top of the list one - letting her assisted living staff know she passed BEFORE I (only family member) was contacted! I found out when I walked into her assisted living facility by their staff! (that was a shocker!) I know that Hospice staff can be wonderful - heard that from many others and I'm glad they had no problems - there's good and bad in every situation - but don't ever feel that "just because they're Hospice" they are the experts or the final word on things. Go with YOUR gut feeling and what YOU feel is right!! Good luck & God Bless!
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I'm so surprised! I'm on my third event with hospice people, and around here they advise comfort measures only. Nothing else, including antibiotics unless the person insists. Stand your ground, like everyone else here said.
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You are her health advocate and what you say...goes. Stand your ground and feel good about it!
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Also, a gyn exam on a person with dementia would be very traumatic and invasive. My mother would think she was being raped if she had to go through that!
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Something isn't right here. Hospice is about palliative care and not curing so antibiotics should not even be considered. What type of "nurse" is this, RN...LVN...nursing aide....just what level of education, certification and skill?

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.
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Mom is being cared for 24/7 by and aide who takes wonderful care of her. The hospice nurse comes once a week to check on her. Mom has been having a lot of problems with bowel movements and causes her pain. When the nurse came today it wasn't her usual nurse and she wouldn't let her check her, She said "I don't want no voodoo touching me. I don't know where she gets this stuff as she never talked like that before. She is legally blind, hard of hearing, has incontinence and looks like a skeleton to me. She will be 96 in May and has dementia. I feel terrible when she talks like that. How do we get anyone to examine her if she flat out refuses?
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Golfqueen - my thought is the hospice nurse reported in the Medicare required evacuation to be on hospice that there seemed to be a change in your mother's hospice score and that is why a new nurse came for the weekly evaluation. The new one probably has higher training and is doing an evaluation in addition to the weekly usual checks.

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).
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OK - so much for spell check...it should be Medicare required evaluation & not evacuation ....and prognostic systems.

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.
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I just wanted to let you and others know, that if for whatever reason you are not happy with a certain hospice organization, you are allowed to change to another hospice one time. We have personally done this.
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There's some other things that can cause a vaginal discharge besides yeast and bacteria. One of them is trichomonas, a venereal disease. Not to worry you unnecessarily, but sometimes abuse DOES happen to vulnerable people in nursing homes.
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Momm is having a hard time with her eating. She does have a swallowing problem so everything has to be soft or pulverized. Now nothing tastes right to her and everything she used to like is YUK. How do we handle this? I don't want to ever put her on an eating machine or whatever they are called.
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Hospice means just that, comfort care only. I just finished 5 of a 6 month time frame, for my precious sister. She had ‎Alzheimer's and entered hospice in August at the end stages of the dreadful disease, when she could barely walk. By Christmas she could barely move, although she did still know me, and ate a tiny amount of food and liquid. On Jan. 7, 2012 she could no longer move or speak even though her lips moved slightly, as if she wanted to say words, no sound came out.

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.
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Pamela: No, stand your ground.

GolfQueen: Call Hospice and ask for the regular nurse.
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My mom developed vaginal bleeding. She too was at end stage Alzheimers. I refused to let tests be done. I knew her wishes and followed them. My thinking was why put her through all of that because even if something shows up, I wouldn't have done anything due to mom's wishes. You are so right. Believe in yourself because what you do out of love is much more potent then what the nurses and docs do because of textbooks. You're a good daughter. Believe that.
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I suspect that a gyn exam could be traumatic...has anyone had experience with this? My thinking as I read everything was what if its something that can be treated and ease any discomfort she may have or have in the future. I agree no surgery but maybe it is bacterial not yeast...however if you are not going to use antibiotics than checking for bacteria doesn't matter. I would just personally want to know in case there is anything the medical staff could do to make her pain free and comfortable down there.
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My mom only has do not resusitate. I will give her antibiotics until......
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Suzmarie: FYI, my dad lives with us. He has little if any quality of life due to stroke and old age. My dad's doctor and I have put a POLST order in effect for him. POLST stands for Physician Orders for Life-Sustaining Treatment. We have requested comfort care only. He can have antibiotics for a UTI, because that is about comfort and him not suffering from mental issues. He will not, however, have antibiotics for pneumonia. In that case, we will let nature take it's course and give him morphine to make his transition to the next life easier. We don't want him to suffer, but he is going to die. We will make that as easy as possible for him, but we will not postpone the inevitable.

Follow your heart and conscience. This is where mine takes me. Cattails.
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It's so very very hard. We all do what is best. My girlfriends father has been bed ridden for years. The only thing he can do is eat pureed food and thickened drinks, nothing more. He has aspirated water numerous times, get pneumonia and then is put on antibiotics. One of these days the antibiotics won't work i know. Best of luck to you. I know you are caring well for your dad.
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SuzeMarie, the doc suspected cancer actually and said it would be much much more painful for the exam and to see then to let it go. All her other systems were shutting down. She did however get antibiotics for UTIs'. It was a difficult decision no matter what and she died 2 weeks later.
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