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cher062 Asked January 2014

Can I refuse care for my Dad as POA?

My father on law is 90 in final stages of dementia various cardiac issues and now has breathing issues yet to be diagnosed. I am the dpoa for him and he has an active dnr and do not hospitalize active on file. The dr at the nursing home prescribed some nebulizer meds to help breathing issues. Well we got the bill for the meds and on was covered by insurance the other was not the one not covered was $1245 for one month!!!! Totally out of the budget so as the activated poi for both medical and financial I told the home to change the med to something covered by insurance or stop this treatment now!! I was told I couldn't stop treatment now we are really just waiting for him to hopefully pass away as there really isn't any quality of life left. It would a god send if he passed. So can I as poa say to stop treatment and or med and just let him pass and no longer receive meds or treatments

cher062 Jan 2014
Just though I would let you know the follow up. The Nursing home had the doctor call me to "explain" why fil still needs these crazy ridiculous meds. I kept my cool and in the end he agreed that even though he hasn't qualified to be listed as hospice care he too feels he should have qualified so we are going to treat as though he did qualify. I did ask him to be re-evaluated with a company of my choosing and he said not a problem but it can't be done until mid Feb as 60 days has to pass for the insurance to pay for the evaluation. He said he would put it in the records for him to get evaluated every 60 days until he qualifies. Love this doctor really listens.

starting tomorrow 99% of the meds will be stopped, if the nebulizer is going to continue then the nurse has to be in the room with him for 100% of the treatment as he would pull off the mask and throw it on the ground when she would leave. Dr agreed no meds would be prescribed unless his staff called me and Ok'ed with me first and NO med would be prescribed that wasn't covered to where I only pay the $7 co pay.

He said with the swallowing issues that showed up last year and the breathing this year are both signs he isn't long for this world and told me he doesn't believe he will last through the end of the year. That truly would be a god send with the way he is now. So now the Dr and I are all on the same page and the Dr office will contact me with treatment or drug changes. Definitely a step in the right direction. Thanks everyone for all your support only those who are living this difficult or have lived through it know what its like. It's so great to have found you guys - I definitely don't feel like i'm the only one.

cher062 Jan 2014
Thanks for the hugs. It is hard too when you are the first one of friends and relatives going through this and they just don't get it. Mil also needs 24/7 someone here so it is hard when I have to go in person as she is terrified of in home people coming in. I do now have her go to adult care twice a week so I can do things to deal. It is so great to have found this site and have folks that are going through the same issues and understand. I'm sure i'll be posting more questions. Thanks everyone.

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blannie Jan 2014
Cher I'm so sorry you have to go through this. I hear you in trying to save some monies for your MIL's care too. When my dad had lung cancer, the oncologist wanted to do six weeks of daily radiation. My dad was 91. It would have been hard on him and super hard on me, because I also had my mom and her daily needs to consider. So I pushed back and he had two weeks of radiation for palliative care.


You gotta do what you gotta do, taking the whole picture into consideration (which his docs aren't doing). And you're doing just that. Hugs to you...and sorry that you have to push for the right answer for your FIL and MIL.

cher062 Jan 2014
Its not just about the money but that is a ridiculous amount to pay for meds on someone this far gone. I also have my mother in law at home for the past year after her having a stroke and having life treating injuries. She also has beginning stages of dementia psychosis, depression, and high anxiety disorder. So I do have to protect some finances for her care too.

cher062 Jan 2014
We actually just moved him to this NH because they take Medicaid when funds run out and carewise they do do a good job. Right now it is being paid with my inlaws monies. When that is used up then its on to Medicaid. I think they are trying to get the private pay for as long as they can because hospice and Medicare/medicade payments wont be as much as we are paying privately. I am definitely going to contact a hospice care group on my own to see where we can be and how bad he has to be to qualify for them. He is in end stages of dementia too. As I said before the dr and nursing home staff keep telling me they don't know he doesn't qualify. Guess I have to be a b**** to get the answers I need and to get done or undone the things I know are right for him. Thanks everyone.

gladimhere Jan 2014
If it solely the cost of drugs, many manufacturers have programs to assist if there is financial need. Going this route is actually pretty quick.

igloo572 Jan 2014
Cher! just from what you wrote I figure he was at least a 13.5. No it is NOT awful to think that it is time. We just came back from visiting my mom and there is no way I would want to live like she is, which is trapped in dementia and filled with fear. Just what quality of life is there in that? Not pretty.

Now for me the ? is why there would be foot-dragging on hospice??? Hmmmm -so how is dad paying for his care? If he is Medicaid, the NH should be all over themselves in getting hospice benefit added into the mix as Medicare (which pays for hospice) doesn't cause the NH any extra fees as Medicare pays the hospice separately and then the NH has extra for no cost to them medically trained hands to help out with dad. So there must be something about his insurance that discourages hospice for this NH. Or is the facility more of a rehabilitation facility?
If its geared to rehab, it is probably not the place for your dad.

Now does this NH take Medicaid or is it a purely private pay/ LTC insurance facility?

You know there are some hospice groups that have an in-unit &/or freestanding hospice facility, that situation may just could be what you need to move dad into. Yeah I know the thought of moving him would not be easy, but would you want to be in this same situation for months & months. Like in my mom's city, there was an old Women's & Children's hospital at the medical center complex that is now a free-standing VITAS hospice. You kinda have to have some significant issues to go there (like a lot of them have Class 4 drug needs and most hospice workers do NOT carry Class 4 pain meds on them) or there are lots of co-morbidities with the patient. You know dad may qualify for a free standing hospice placement because he has so many possibly complex co-morbidities. My mom would never qualify to go to the freestanding hospice but my MIL went into one as she had post surgery sepsis with big bad bacteria, dementia, COPD, etc. MIL died maybe within 2 weeks there, they did a lovely job in weaning her off of meds and regulating pain, the RN called my DH every evening too. My aunt went to the VITAS one in my mom's city after a fall with a brain bleed and I think it was 5 weeks that she was there, most of the patients were younger, lots from cancer and almost all needing serious pain meds. For what it's worth going to see my aunt in her 90's there when so many others on the floor were young & dying from cancer or major trauma, made it a lot easier to be calm about my aunt's passing.

cher062 Jan 2014
The nursing home has two hospice groups they use. I did not know I could choose whatever hospice care group I wanted. Thats good to know.

Igloo based on what you posted for hospice qualification he should qualify but so far hasn't since Sep they have been in 2 or 3 times and still hasn't. The bottom method he would be between 12 -16. The upper one he definitely has up to #6 with some of #7 seems to me he should qualify too. But still hasn't Think I need to do some leg work on this. I know it sounds awful to say out loud but its time to let him go and stop everything.

igloo572 Jan 2014
There are 2 main tests for hospice qualifying, the FAST & a Mitchell MRI score.
The FAST doesn't refer to time to do it, it stands for Functional Assessment Staging Test (FAST). Mitchell is a Mortality Risk Index & somewhat easier.

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
. Some combination of the 7's mean hospice needed.


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. You add up the points and get a MRI score. The
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 70.0
Mitchell can change over time. My mom was over a 12 her first month and now has lost points but still OK for hospice. Hospice gets approved at first on a 90 day period and thereafter every 60 days. Medicare has clamped down on allowing for years of at-home hospice and lots of those patients have had to be re-evaluated but that is not the case for your dad. Good luck and sometimes you have to just be a real pit bull to be an advocate for your elder!

igloo572 Jan 2014
Yes you can refuse care, if dad has a DNR or other advance directives done this should be easy to be done and have enforced. You have to be a bit of a pit bull sometimes to get this done. But Assandache7 has a good suggestion on hospice and asap!

Once he is on hospice (btw sounds like he should easily qualify), I bet almost all of his drugs will either be stopped or will be decreased to get him weaned off of those that require smaller & smaller doses to get off of. IF the expensive medication is a treatment, hospice will require it be stopped as all procedures or medications that "cure" or treat will no longer be allowed under hospice rules. I would be somewhat disturbed by a facility who refuses to look into stopping a medication or in changing the prescription to a generic - this just doesn't sound right.

Hospice is a MediCARE paid for benefit. As such, the Medicare recipient (your dad) can choose the hospice group. You as his MPOA can do this for him. Most NH have a group of several hospice that service the facility. If the NH tells you that they choose the hospice, that it total bs. Hospice is Medicare and Medicare is self-directed in choosing providers. There should be lots of hospice groups in your area. The two bigger ones are VITAS & Compassus. If they are in your area, I'd contact them to start with.

Dad will have to have an evaluation for hospice done. I will do a separate post of the 2 types of test done for hospice. But he sounds like he will pass. Now his MD will have to request a hospice evaluation. SO you will need to speak to his doctor about that. If his MD is the medical director of the NH, I would fax over a request for this to be done rather than trying to speak with them as they probably are limited in their time @ the NH.Faxes are considered a legal document and cannot be ignored like a verbal conversation can be….this is why you need to fax the request over, someone will HAVE TO DEAL WITH THE REQUEST. If his MD is still a doc with a private practice, then you can call the office to ask for orders to be written for getting the hospice evaluation. Those orders then go to the hospice provider so they can go to the NH to do the evaluation.

My mom is in a NH and in June fell and broke her hip, so she is now bedfast and is finally qualified for hospice. It has been just great and she really has never been cleaner or in better care. She gets a CNA 3 X a week and RN twice a week and once a month social worker & clergy, all this in addition to the daily care provided at the NH. Medicare pays right under 5K a month to the hospice group. Most good NH really like having hospice there to provide care & extra hands in tandem with the care they provide. For my mom, the hospice CNA works with the NH aide in doing mom's bathing in a portable geri-chair that the hospice group ordered for her. She really has never been cleaner and more moisturized. There are 5 different hospice groups that "work" my mom's NH. The first hospice group I had issues with as they would not provide the level of communication I wanted and were slow on ordering equipment, and so I discharged them from care and went to another hospice group within the first 90 days. Took 2 days to do the switch. Again, hospice is self-directed so I as my mom's MPOA could do this.

cher062 Jan 2014
Did that both home and dr can't believe he isn't sick enough for hospice. He. Was on it back in Jan 2013 until April and they said he became too healthy to be on it. He really wasn't healthier but the criteria for what healthy is changed. So every month since Sep I have had them in to reevaluate him but now with the Obama care in place criteria has changed to even harder criteria to meet. Seriously how close to death do they need to be now.

If I can stop some of the treatment for some of his symptoms I am sure he would once again qualify. Right now I need to stop or have them change meds to ones that. Are covered by insurance at a minimum. As poa can I force that?

assandache7 Jan 2014
I' m sorry this must be so frightening.. I suggest you call hospice to have an evaluation asap..

cher062 Jan 2014
He also has diabetics that is out of control even with meds. Has had 3 angioplasties glocomma and no longer has control over bodily functions. Can barely walk, thinks he is 22 raising purple cows in the Azores and no longer speaks English only speaks Portuguese at about a 4 or 5 year old level on a good day

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