Help Needed: POA Grey Area Pre-Hospice

Gobellago

Looking for any help out there I can get. My dad has ALZ/VD stage 5, 80yo, is in AL/Enhanced Care. I am the activated POA and my dad has requested no ER, no hospital, no ambulance. He is still being seen by PCP and cardiologist. Dad has many medical issues in addition to moderately severe dementia; heart failure, diabetes, severe edema in legs, etc. When he asked for no more medical intervention, I discussed hospice with him and he said he was not ready yet. However, he falls about twice a week. This morning he hit his head. They wanted to call 911; I agreed because they said his nose looked broken. EMT called me, and it is not a broken nose, but there was a lot of bleeding. They of course want to take him to ER, where they will want to do a CT/MR scan of his head. I know he specifically does not want that. I told them not to take him. Got a second call from EMT. AL staff has convinced dad to go to ER, he has now agreed with the staff, and EMT wants to take him to ER. So I caved and said “yes”. I will now drive to ER (50 min away) and will have to ask for CT scan to be denied, bc Dad will ask me to. He will be hopping mad by the time I get there and will say “I TOLD YOU I DIDN’T WANT THIS!” I will then drive him back to AL. And pay another ER/EMT bill. This cycle happens about once every three weeks. I’m exhausted. What options do I have? If I deny care, as he asked me to, and he has a brain bleed due to a fall, what then? Have I technically ended my father’s life? Do I need to force hospice despite him saying he’s not ready? Help!

fmb

It is time for hospice and no more hospitalizations. After six hospitalizations in 4-1/2 months last summer, as POA, I placed DH in hospice care as soon as the doctor suggested it. He was in Stage 6 at the time and has congestive heart failure and effects from a stroke last year. I promised him no more hospitals. He also has a POLST order (may be called something different in your state) and an Out-of-Hospital Do Not Resuscitate order in place (the latter so the EMTs do not try to revive him.)

Your dad's reluctance to accept hospice may stem from common misconceptions about hospice. Many people think that hospice care is only for the last days or weeks or that hospice care hastens death. Nothing could be further from the truth. With moderately severe dementia, your dad is no longer capable of making this decision for himself. As POA, you have an obligation to act in his best interests, not necessarily what he tells you he wants. You may be able to sell him on the hospice idea by telling him these people are simply providing extra care so he gets the best care possible. That worked with my DH. The 'hospice' word was not mentioned at all for the first few months. He has come to truly trust and love his hospice team (as have I), and it is a move that I do not regret.

Keep in mind that you can remove you dad from hospice care at any time. Unfortunately that would also begin the endless cycle of ER visits and hospitalizations.

 If I deny care, as he asked me to, and he has a brain bleed due to a fall, what then? Have I technically ended my father’s life? 

No, you would not have ended your father's life. The diseases he has are ending his life. Falls are a symptom of dementia. In your hypothetical situation of a brain bleed, there would be nothing the hospital could do that would return him to an acceptable state of living. The hard truth is that he is going to die, and there is nothing you can do to prevent that. It may come sooner than later, depending on the actual cause. Some of us pray daily that something else takes our LO sooner so as to spare them (and us) the ravages of end-stage dementia. Do not feel guilty about your decision. You are not doing this TO him, you are doing it FOR him.

Sending you strength and peace. ((Hugs))

harshedbuzz

@Gobellago

This is tough stuff.

When dad was admitted into MC, we were able to stipulate "no ER transfer" on his paperwork although we did still get a call every time they found him on the floor— often having chosen to sit there, so not even a fall. We could have revoked the "No ER" verbally when called.

Have you addressed this with staff? Would they agree to not calling the ER? I wonder if it makes sense for you to move dad nearer where you are and to a traditional MCF? You might find they're more open to not intervening. And if nothing else, the mad dash to the ER/MCF would be shorter. IMO, it's best if the POA can get to the ER as the ambulance arrives for the PWD isn't alone in the ER.

Does dad have any condition severe enough to qualify for hospice? Your description of his dementia doesn't sound like it would. How about the heart disease? Does dad understand how hospice works? Many people are ill-informed about what hospice is and isn't. I recently did a medical directive with my non-dementia, college-educated parent who was reluctant to agree to hospice if indicated because she believed it meant she "couldn't have food". I have no idea where she got that wacky notion; MIL was on hospice for 5 1/2 years and I assure you she ate during that time.

HB

M1

This is short and sweet and may sound harsh, but I think since you hold POA, you make the hospice decision, not him. He is obviously sending mixed messages without understanding the implications. Have him evaluated, it sounds to me like he will qualify. Nothing lost if for some reason he doesn’t.

housefinch

Agree with @M1 . You are driving this bus because his brain no longer can. You didn’t give him heart failure, diabetes, and dementia. And allowing him to avoid the stress of the ER, hospital ward, possibly delirium from being there——those are also what hospice would give him.

H1235

Sounds like it’s time for hospice. I just wouldn’t tell him. Does he really need to know.

Gobellago

thank you all, this is incredibly helpful. I will reread your kind and thoughtful words when I need a pep talk!

Gobellago

forgot to add, you are all right, I believe it is time for hospice. I’ve spoken with the hospice rep, the AL RN, his favorite CNA and his PT person. They all agree as well. Now to talk to my sister, she is out of town and doesn’t see what I see. Any advice for helping the out of town sibling around to the idea of hospice?

M1

again, since you have POA, just do it. You can of course talk to your sibling, but you don’t need their permission.

H1235

If you sense she is upset with you and doesn’t agree, I would give detailed examples of why. I would also point out all the medical professionals that agree that it’s time. I find that with my brother it takes a while for him to process things. I hope it goes well. This is all hard enough as it is, you don’t need and angry sister on top of that. I hope it goes well.