How to advocate for a patient

[TeresitaL200175]

Im a caregiver and the the person I’m taking care of is already under hospice care since last year, she’s stable and all her vital signs are good , she’s not in any pain and still have a very good appetite. She contracted aspirated pneumonia and the family decided not to have the water in her lungs removed so the family put her under hospice . The patient is non verbal and has Alzheimer’s so she cannot decide on her own . Family is not providing food except for eggs, yoghurt , milk , oatmeal and once in a while soup . I have to spend my money to buy food for my patient. 
My patient is not declining, her condition is stable and she’s still strong . I’m worried about my patient because the family told me not to give her maintenance medication anymore , family said the doctor said not to give but I’m wondering why would the doctor tell not to take medication when he hasn’t seen the patient in a long time . I checked online what will happen if my patient stop taking her medication and I got so worried because it will affect the heart and patient can be comatose . I don’t know what to do , I want to advocate for my patient but I don’t want the family to use it as an excuse to fire me. I don’t want to leave my patient , I really care for her . I really don’t know what to do and this causes me to have sleepless nights and anxiety. 

[GailL1]

@TeresitaL200175 

A lot of important info is missing from your post and your concerns.

1.  Do you know if the patient has an Advanced Care Directive in place and who has been appointed their Health Care power or designate to carry it out.

This is important because many of us do have such a document and have legally documented what care we want and DON”T want if we become unable to make this decision on our own sometimes down the road.  Those wishes should be respected.

2.  Are you a “hospice” caregiver?  How much do you know about hospice care?

Here are a few links for you to understand the scope of this type of care.  Here are a few educational Medicare articles for you -

There are specific things that a caregiver is responsible for and then there are some that are outside of their realm of responsibility.  

Medicare.gov - HOSPICE CARE COVERAGE 

Medicare.gov- Levels of Hospice Care 

3. You should have this conversation who has decision making authority over the patient - that sounds like some member(s) of the family.  Or you could report your concerns to the state dept of the elderly - Yep, either may cause you to lose this job especially if you are letting your own views on life and dying get in place of the patient’s directive or overall hospice care where yes, some medication will be removed at certain times in the cycle - that’s the doctor’s call and you could be getting the info just thru the family.

You probably also have the direction not to call emergency services if the patient becomes distressed - you call Hospice instead.  

I will leave you with an article about a couple - she had a long standing directive that stated NO artificial feeding to keep one alive when she went into Alzheimer’s care and Hospice, the facility where she was had problems with this and refused to let her starve. It turned into a real fiasco - 

KFF Health News 10/12/2017 Demential Patient At Center of Spoon-Feeding Controversy Dies 

BTW, aspirated pneumonia is a very concerning problem that often does lead to death in patients that cannot process food thru their mouth.  But if they have directed that NO feeding tube be used - then there is little choice, IMO.

It might be best if you moved on from this situation depending upon what you learn of the patient’s documented desires.  Or it could have also come from the Courts.

People have different views on death and they also have different views on when to hang on and when to let go.  Personally, I don’t want to stall the process in any way.  In fact, I would like to legally preplan it by establishing markers.  I surround myself with people that support my wishes.

Sorry you are having a hard time with this -