My father is 85, very frail (99 lbs) and has been in hospice care for eight months since moving from one assisted living facility to one closer to me home.

He is unable to eat and only can grunt to talk about his needs. I was taken in recently (COVID-19 lockdown) and sat with him for over 1 1/2 hours. I watched as staff spoon fed him shake and woke him up for meals in which he wanted to sleep through.

I have his Durable POA and the Main Hospice nurse has decided with the facility doctor (not the hospice dr.) that he be taken off all drugs (he has Schizophrenia). I disagreed and they said they are doing it anyway!

He has an Advanced Directive stating basically that he does not want prolonging life saving measures to take place at the end but also states that end of life is a vegetative state.

How long can my father live this way. I know it is not what his wishes are and feel the facility and the attending (and the associated) hospice are just prolonging his life to get another monthly check.

I spoke to the Director who says he has the right to decide and doesn’t care about POA or Advanced Directive.

I worry about the uncomfortable feeding or forced drinking and did see a suspicious red circle in vein on hand. Hopefully it was blood drawn for checking and not an IV.

What can I do now with COVID-19 restrictions and having his final wishes honored?

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You are suffering with your dad. He has given himself to you for all those years.
Hospice Chaplain or Social Worker will help you deal with "your suffering". Hospice always honors final wishes.
Helpful Answer (1)

The Director of the AL has no rights over your Dad. It is a residence not a prison. Your POA is in effect and they have to abide by his directive.

Hospice is a separate entity that has nothing to do with the AL. I would think taking him off off these meds would make things worse for him, but then I am not a doctor. And the Hospice Nurse should not be taking orders from the ALs doctor but the Hospice doctor, I would think.

I would call the Hospice doctor and question what is going on. I would also consult with a lawyer and have him write a letter telling the Director that your POA is in effect and as such you not him makes decisions for your Dad. I would also find another Hospice agency if ur not happy with this one.
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My husband has been under Hospice care for 21 months now(in our home), and there were many times when his Hospice team( Dr's and nurse) thought that he should stop some of his medications. If I didn't agree, I let them know and the reason why and they always respected my wishes. You are your fathers POA, and you have the final say about his care and what can and cannot be done, (including of course his Advanced Directive)

And like others have said, once Hospice takes over, the facility Dr has NO say in your fathers care, so make sure he/she steps aside and let Hospice do their job. If you're not happy with the Hospice agency your father is with, maybe it's time to switch to another. Not all agencies are created equal. You need to feel confident that your father is receiving the best possible care in his final chapter of life. You both deserve that much. Best wishes.
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sharquilts2 Aug 2020
I agree with switching Hospice companies but wonder how that would effect Medicare for payments for my father?
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Why would a facility have paperwork for Advanced Directives if they are going to ignore them! Same with POA..that is a legal document.
You could talk to the lawyer that drew up the POA and ask about taking the facility to court for violating Ethics.
Hospice generally does not do IV's
It is very easy to develop what I called a closed skin tear it is brighter red and more just under the surface of the skin than a bruise might be. This can happen if the skin is bumped even a little bit. (I used to say about my Husband, if I used the razor a bit firm he would get one, if he slightly bumped the back of his hand on the table he would get one) And a blood draw would also leave a mark.
You could also talk to Hospice about what his wishes are. Generally as soon as you are on Hospice they have you sign a POLST (not required but encouraged)
As far as stopping medications, Hospice will encourage discontinuing all medications that they feel are not necessary at the time. The Hospice nurse does not suggest taking a person off a medication if it has not been discussed with the Hospice doctor. (a Hospice nurse, unless they are an APRN can't change or prescribe medications)
Hospice holds a team meeting at least weekly where each person is discussed and medications are reviewed and recommendations are made. So the Hospice nurse is following the orders of the Hospice doctor.
You can contact Hospice and talk to the supervisor if you think your dads wishes are not being followed and discuss the ethics of that.
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Is he under the care of a hospice agency or in a hospice facility? If it's the former, fire the agency if you don't like how they're doing things.

My dad was in hospice care at home, and I fired the first hospice agency after a couple of weeks. I inquired about a couple of things in relation to visitors coming to say goodbye to my dad, and the social worker told me "This is not about you." Excuse me?? I fired them the next day and hired another company. The change between the two companies was seamless, and to the credit of the first company (a well-known national company) they helped make it that way.

The facility doctor is treading on very dangerous legal territory, and you might remind him that your dad is not his patient any longer. He could get in enormous trouble if he persists with his attitude. Communicate with him through emails so there's a record of your conversations. Talk to the hospice doctor and ask his opinion of taking your dad off his meds. If he's close to the end, he probably doesn't need to be taking them.

I doubt the AL place gave your dad an IV -- they usually aren't certified to do that. My mom's skilled nursing facility couldn't even do IVs.
Helpful Answer (2)

When hospice takes over care management the facility dr. drops out of the picture. The hospice nurse should have any med changes she recommends approved by the hospice care manager or the hospice dr. However, it's no unusual for them to discontinue meds they deem no longer effective.

As for waking him to eat, that's ridiculous. I found hospice care to be very compassionate. Call the agency a express your concerns. Telling you "they're going to do it anyway" is unacceptable.
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I wish I could answer the question "how long can he go on this way". The questioning would be normal when you cannot be there, and I cannot blame you for doing it. I can only say that the mission of hospice is to help people be comfortable. If they are shaking him awake to eat if he doesn't WANT to eat I would be very surprised. And if they were giving him artificially administrated fluids or nutrition I would be shocked. You say you are POA and I assume that means you are in charge of being POA for health care. It is time to speak with hospice, tell them what you saw with someone shaking him to make him eat. I would tell them your fears (be honest) and I would listen to them. I can only tell you that if they are actually doing anything to make him live so they can make money I would be shocked to my core, and never in all my 38 years as a nurse have I heard of such a thing. Those who work in hospice have a mission of mercy to prevent discomfort and unhappiness even if it causes a more rapid decline and death. People who work in hospice are almost always dedicated to that mission. Doing anything else would lose them a license to practice day one. Speak with those at the facility, and tell them your fears. I think you need reassurance in this awful time when we cannot be there to see and watch over those we love. I am so sorry for your grief.
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