Can you or can you not go to the emergency room when on hospice?

Olly_Bake

This is all so confusing reading online. Some readings state as long as the reason for the emergency room visit is not related to the reason you’re on hospice. Others readings just out right says no once on hospice. I king of understand that once you go on hospice you are saying no more treatment and no more er visits. But at times, it is hard.

But here I am wanting to take dad to an emergency room especially with sister saying they are finding it hard to wake him last week and same this week. So hospice has been great but yet I have problems when dementia is always their call when confusion as an example can also be an uti or sudden weakness can also be a new med you've started. 

He lived with us for eight months eating, fussing, and full of life and moving around even with dementia. Now, one month later and back in his home and he is not doing much of any of those things and headed toward being bed-ridden if I can't get this turned around.

I and hospice are noticing some lack of care especially when it comes to for example eating, med, and sleep/awake schedule (very important). So I'm trying hard this week to instill in the workers that regardless of what my sister that lives with dad does or does not do, I need them to care for dad and sister is extra. So here I am today seeing if they are listening. 

Call at 6 and instead of aid and sister making sure he is up getting his meds and food in, they both are talking about they are letting him sleep. So I asked them to wake him and try to get both things done. Now since I called, sister is calling it seems like every 30 minutes. Ring, we can't get him awake. Ring remind me how he is to take this med. Ring, we finally got him up to eat. Ring, ring, ring. 

I've been going once a week and spending the day helping. For lunch I have not been seeing anyone get up to feed dad (twice so far) but don't know if this is because I'm there or this is going on all the time.

So it seems, I may have to move dad back to a nursing home although my dad’s wishes were home. So please, help me get clear on hospice and emergency room visits. And then, I've got a hard decision to make. Right now, hospice keeps trying to talk me out of taking him off so he can be checked out. 

harshedbuzz

Olly_Bake wrote:

This is all so confusing reading online. Some readings state as long as the reason for the emergency room visit is not related to the reason you’re on hospice. Others readings just out right says no once on hospice. I king of understand that once you go on hospice you are saying no more treatment and no more er visits. But at times, it is hard.

It is hard. But runs to the ER are very hard for PWD in the end stages when a person has progressed to the degree that they qualify for hospice. 

But here I am wanting to take dad to an emergency room especially with sister saying they are finding it hard to wake him last week and same this week. So hospice has been great but yet I have problems when dementia is always their call when confusion as an example can also be an uti or sudden weakness can also be a new med you've started. 

An ER is not the place for a consult on dementia progression- that would be a neurology appointment. If hospice suspects a UTI, they could certainly do the collection and treat if there is, in fact, a UTI.

He lived with us for eight months eating, fussing, and full of life and moving around even with dementia. Now, one month later and back in his home and he is not doing much of any of those things and headed toward being bed-ridden if I can't get this turned around.

So, you moved him? That alone could have caused a deterioration in his ability to function in the later stages. If the move was because you could no longer manage his care at your home, it could be there was a progression of the disease before moving home. 

I and hospice are noticing some lack of care especially when it comes to for example eating, med, and sleep/awake schedule (very important).

The bolded is more important in the mild and moderate stages of dementia. Once hospice is engaged, the focus is on comfort care. Hospice patients are typically allowed to sleep as needed. 

So I'm trying hard this week to instill in the workers that regardless of what my sister that lives with dad does or does not do, I need them to care for dad and sister is extra. So here I am today seeing if they are listening. 

This isn't typically how hospice care works. IME, in-home hospice means the family or their privately hired/paid HHAs do the lion's share of the caregiving while the HHAs are there to support- you might have someone stop by daily or every couple of days to check in/deliver supplies or if there is an emergent concern. Sometimes hospice workers are there more often as the patient transitions to active dying, sometimes now. There would be a bath aide twice weekly and maybe a social worker or chaplain for the family touching base weekly. 

If the need is greater than that, patients might be transferred to a facility that offers hospice. 

Call at 6 and instead of aid and sister making sure he is up getting his meds and food in, they both are talking about they are letting him sleep. So I asked them to wake him and try to get both things done. Now since I called, sister is calling it seems like every 30 minutes. Ring, we can't get him awake. Ring remind me how he is to take this med. Ring, we finally got him up to eat. Ring, ring, ring. 

Letting a person on hospice sleep is the usual protocol. Waking someone for medication is not usually done unless there is a critical need for the medication to ensure comfort. Feeding is done as tolerated, but I don't know of anyone who woke their LO on hospice to eat- food was offered when the person was more alert and upright in order to avoid aspiration. 

I've been going once a week and spending the day helping. For lunch I have not been seeing anyone get up to feed dad (twice so far) but don't know if this is because I'm there or this is going on all the time.

Maybe if you were there for the afternoon, the expectation was that you'd do it and sis would have a break. Hand-feeding is very upsetting for some people. My aunt was hand-fed for the last 2 years of her life; her sister came most days to feed her lunch in order to get as many calories in as possible. The experience was so traumatizing, her own MOSLT form prohibits hand-feeding under any circumstance- I'm a secondary POA and am reminded of this every time we speak. 

Have you spoken with the hospice people about where your dad is? Nothing you have written sounds like active dying at this point, but if he's sleeping more and harder to rouse, he's likely headed toward that stage at some point.

FWIW, my one aunt went through a few phases where she slept almost all the time and declined food and water for upwards of a week in the last 18 months. Each time we thought the end was near, but she rallied on her own and returned to a baseline of being more alert and eating for a few months until she did it again. My friend's mom was managing swimmingly for a time, but when she started sleeping most of the day and refusing food it wasn't long until she moved into an active dying phase. My dad slept more- mostly cap-naps- but ate right up until he died. Hours before he passed, he scarfed down chicken nuggets and a milkshake from Chik-Fil-A I brought him. 

So it seems, I may have to move dad back to a nursing home although my dad’s wishes were home. So please, help me get clear on hospice and emergency room visits. And then, I've got a hard decision to make. Right now, hospice keeps trying to talk me out of taking him off so he can be checked out. 

It's really hard to say. To my ear, it sounds as if your sister and the hospice team are on a very different page than you are. Given that they seem him more and that most hospice workers bring a depth of experience with the process of dying the rest of us don't have, it's hard to say whether your expectations are reasonable for your dad's stage of dementia. 

That said, if you hold the POA for healthcare and you feel his care is not appropriate, then you have a hard decision to make around honoring his choice to die at home or transfer him into a SNF for what is likely end-of-life care. It's the POAs call to make. 

This is all such hard and sad stuff.

HB

terei

From what little you have said, it sounds like you have not been able to accept that your father is at the end of his life.    He is on hospice, which is comfort care.

This is all my viewpoint, but NO he should not be roused to take meds or to eat. NO he should not be transported to the ER.   He should be made comfortable with the meds that hospice has provided to keep him pain free + given food + water if he is alert enough to indicate that he wants that.  Any other meds are probably unnecessary.

‘Sleep/wake schedules’?   Your entire post tells me that you are trying to extend your father’s life, regardless of his real needs at this time.   Examine your own feelings + needs about this + possibly talk in more depth with the experts that hospice provides about what the reality of your father’s situation is.  

I have been through end of life 24/7  with two LOs. 

MN Chickadee

I agree with the previous responses and would echo that emergency rooms are very difficult places for a person with dementia. They are not trained in handling it, they are loud and bright and bustling. A trip there would stress him and may set him back even more. I would think hospice could do anything the ER could for him, such as monitor vitals and check for a UTI.

King Boo

Have you read "Hard Choices for Loving People" by Hank Dunn?   You may find this an enlightening and very helpful reference.  I carried it with me to sort out my thoughts during every hospital admission and every visit with my LO when on hospice.HCLP-6th-Edition-3-7-16-Sample.pdf (qolpublishing.com)

QUOTE:  You say you need to turn this thing around.

There is nothing to turn around about the end of life.  Emotional decisions made in haste without the long view can unintentionally make our loved ones suffer unecessarily.

During hospice, the first question that should come up is COMFORT.   How will this impact their comfort?

If hospice eligible, most invasive medical procedures and emergency room admissions do little to  nothing to improve the quality of life.  It's possible that life can be extended by a bit, but it is usually days to perhaps a week or two - and often at great cost.    Subjecting a dying patient with dementia to the noisy, busy emergency room and a hospital admission where little to no sleep is possible, with every diagnostic test and intervention ordered, should not be done lightly or when upset.

It takes a lot of bravery to see our family member to the end. 

Have you met for an educational session with the hospice RN?  This clarifies the whys and wherefores a lot.  

Expecting a hospice patient to keep a schedule, be woken up (except for comfort care measures) and to 'turn things around' are hinting that you are not ready to embrace hospice philosophy.    There is nothing curative to be sought, only best as can be comfort.   There can be a slight rally of the hospice patient that aggressive medical intervention can extinguish.

I found that until I could fully embrace the fact that my LO was in their final months on earth, the years of being advocate and case manager fought against me.

There is a time to let go of curing - and a time to let things be.

You have to be pretty rock solid in embracing this, because all around you, the medical establishment goes for 'cure.'

WWID?

Meet with the hospice RN.  Understand and read about hospice.  Read about the dying process.  At some point, it becomes very natural to stop eating and is best for comfort care.  Don't be frantic about this.

Then compare hospice at your sister's home with hospice in the nursing home.   Make a decision and let it go.  Be in the moment with your LO.  There's not much time left, most likely.  It goes fast.

abc123

I agree with what the others have said, especially Terei. Olly, I know this is very hard. I am going thru the same situation with my mother. 

She is on hospice, comfort care only. She takes meds to keep her calm and pain free. She can only eat baby food because she pockets food and can no longer swallow. We are instructed by the RN who is in charge of mom, to let her sleep as much as she wants to. We do not wake her up to feed her or give her meds. The meds are crushed and added to food when she is awake. We have to turn her every two hours and sometimes she sleeps right thru being turned, sometimes she wakes up for just a minute but goes right back to sleep. I know this is hard. I'm very sorry. Do you have a social worker assigned to your dad's care? Talk with her and the RN about this. They should be able to help you understand what is happening with your dad. He is preparing to leave this earth and it must be done on his schedule, his way. 

jfkoc

Of course there are times when a Hospice patient will go to an ER. 

https://omnicarehospice.com/can-hospice-patient-go-hospital/

Olly_Bake

Here is how dad ended up on hospice. It was not because he was at end of life and doctors had given up (but he does have some serious medical issues to go along with dementia). Hubby was ready for dad to leave our home after his physical therapy with home health ended. But we went beyond that and he almost made it a year with us so really I couldn't ask hubby for more. Well I did but he disagreed.

Dad was constantly saying he wanted to go to his home and knew where it was as we often had to drive past before we put him on hospice but my sister that lives at his home was saying no. Then dad was refusing to enter the nursing homes even with me trying to let him decide. 

I was told to get guardianship. Got temp guardianship but still couldn’t get a nursing home to accept him coming from a home setting. All wanted him to come from a hospital setting and whenever I tried that route he would come back medically clear except for dementia. I have full guardianship/conservatorship now.

I started hearing that hospice could get him in and even for respite stay. Now he is on hospice and all was fine when he was on our end but now hospice is saying dad may be better off at the nursing home where we did respite. Saying that his sudden weakness is more likely meds being taken too close together rather than dementia and not enough movement. 

I wanted to explore the weakness issue. Was reconsidering the nursing home but didn’t want him to be down right off the bat if possible. So I was trying to get a clear answer on whether you could or could not.

Thanks all for the response!! Much too think about.

May flowers

Agree that hospice can treat him … my FIL is being treated for a UTI right now based on symptoms. They don’t even do a urine test unless they do not respond to the first antibiotic round.

My FIL is alert and eating, but I take my cues from him. He has stretches where he doesn’t want to eat, talk, and only wants to sleep, and days where he is sipping around the room in his Geri-chair, bumping into everything and chatting up a storm with us or with an invisible friend. I am just going with the flow and wherever he happens to be at that time. Comfort is the goal.

But I do not want to move him - whether it is ER or respite care. We are trying to secure an in home respite  caregiver for vacation  now. The hospice intake person did say that there are certainly times that he can come off hospice to be treated for something especially if it is a comfort measure. It would have to be pretty significant though, because a trip to the hospital would probably do him in, as harsh as that sounds.