LO on Hospice - Aide won't Give Morphine

Malka

Hi,

This is about my dad. He lives at home with a wonderful aide for the past two years. He had a heart attack on Saturday. I asked the aide to take the POLST form. she did, but didn't give it to the EMT. They gave him something to make his heart beat. I put him on hospice on Sunday, these are his wishes and we spoke about it again. He also went home on Sunday. Now the aide has told me that if he needs morphine she won't give it to him. She says it will kill him.

What do I do now?????

Quilting brings calm

You call hospice and ask them what to do… and you hire a different aide. She works for you/your dad. She doesn’t get to set the rules. And she’s wrong on top of it… morphine itself doesn’t kill. Overdoses do. Most likely hospice will know someone that can come over on a schedule and give him the morphine …. But it may involve a charge of some sort.

As to the POLST. Stick copies of it on the front door, areas around the house where EMTs will see it when they arrive. Although EMTs should not called to the house now that hospice is on board.

I’m really sorry that she’s adding to your stress, and not responsive to the fact that morphine is to relieve your dad’s pain.

charley0419

Time for new aide

Ed1937

Get a new aide. She doesn't get to make medical decisions.

trottingalong

My SIL had the exact same thing happen with my FIL. She called hospice and also immediately removed the aid.

Malka

It is easy to say find a new aide, but where I live there is a dearth of aides. I am considering moving him to a facility.

M1

yep i'd fire her on the spot and report her to her agency. And she's incorrect about the morphine "killing" him.

easy23

https://alzconnected.org/discussion/68336/lo-on-hospice-aide-wont-give-morphine

In NJ, aides are not allowed to administer medication.

Chammer

Since it will be difficult to replace your aide, I would request hospice to provide education on the the medications, how they act and why they are important for the comfort care needed. Hospice is very good at supporting and educating caregivers. Hopefully they are able to help w this for you.

Quilting brings calm

==In NJ, aides are not allowed to administer medication==

Here is how this was done in Illinois today at my step-dad’s AL, The AL nurse got some morphine syringas filled and the resident assistants know where they are. They can hand the syringe to step-dad, who needs to maneuver it up to and in his mouth. They told him to push the knob on the syringe to squirt the morphine in his mouth. If he lacks the strength to push the knob in, the resudent assistant can do it. I know there’s a certain amount of time that has to pass between each dose, Not sure if the assistant has to call the nurse before she can hand him the syringe or not. The AL nurse was in the building at the time, and I know she was aware it was being administered

ButterflyWings

This will seem crass and I apologize. But it sounds like job security moreso than compassion to me. She likes her current arrangement and position, and it goes when he goes. I am so fed up with entitled-acting, opportunistic people right now I could spit!

I have come to believe there is a special place in hell for those who treat PWDs and their family caregivers (even if offsite) so dismissively. It is abusive - physically, mentally, and emotionally. Usually motivated by money, with more than a tinge of utter arrogance.

My heart goes out to you and to him. omg what a nightmare. Report her for sure. She violated his rights. Maybe in-patient hospice is an option? She doesn't care how her client and their LO feel so I agree with the others, she needs to feel unemployed.

harshedbuzz

@Malka

I am sorry you are dealing with this.

While my mind did briefly go to the place BW's mind did, I suspect it more nuanced than that.

Many lay people believe there is such a thing as "morphing-out" a terminally ill individual as if it's an open secret euthanasia. Given that morphine is used typically at the very end-of-life, it's easy to confuse correlation with causation and not want to be the one who administers the last dose. If she doesn't have the ability to do this-- perhaps she has been in that situation-- you'll need a different plan.

If you are unable to attend your dad for the duration, a hospice unit might be your best option. One caveat, your family will likely be responsible for the room & board portion of his care as that is outside the scope of hospice services.

HB

dayn2nite2

If aides in NJ aren't allowed to administer, then hospice needs to devise a way for that medication to be administered. I understand that the aide's license would be in jeopardy, so fighting on that front would be useless. If there is a family member or friend that would be willing to administer, that would be great. If not, hospice may need to move him to a facility so he can be comfortable.

sandwichone123

In New Mexico we have a category called medication aide. The "nurse" at my dh's place is typically a medication aide. They don't have the skills of a nurse but are licensed by the state to give medications as ordered within guidelines. They are not licensed to do much assessment or to provide nursing judgement.

trottingalong

I’m in California. Two years ago my dad passed at home with us with him. We were given morphine by hospice and were shown how to administer it and when. The wonderful hospice person assured us that by helping him with his pain, we weren’t helping him leave this life sooner. What a blessing.

Malka

https://alzconnected.org/discussion/comment/200040#Comment_200040

She has been giving him meds for two years. Will they know? Can I give him the meds?

Malka

Am I allowed to administer meds to my father?

trottingalong

https://alzconnected.org/discussion/comment/200473#Comment_200473

Hospice would be able to tell you. We administered to my dad. Hospice gave us the morphine and instructions. I’m sure it varies from state to state.

ButterflyWings

@Malka "Am I allowed to administer meds to my father?" Non-Dr. or Lawyer me here -- I am going to say yes. Because I have done so. You are the next of kin family member and person in charge of his affairs, right? If the meds are prescribed for him then it is not a crime or malicious. In fact I think it is a kindness. Hospice gives the comfort kit to whomever is the primary caregiver. At an agency that has to be governed by the facilities' rules, which follow state and maybe federal laws.

When LOs are convalescing at home, it means I have had the responsibility to medicate my elder family member years ago, and my DH now. Including controlled substances like Morphine when the nurse or dr says that's what is needed right now, or as needed on your own judgment when symptoms or situation calls for it based on what you have been instructed to do. When DH was at a respite facility, I gave him his meds the afternoon and night before I left him. The nurse was there for the last dose to record it, so they would not double dose him later by mistake.

FWIW, my little old nearly 100 year old LO was fairly resistant to morphine when we began giving it to her in her last weeks/days for pain - as instructed - when I called the hospice hotline to report she was moaning which was new. No dementia and she was clearly entering a new decline and needed relief. This little lady was able to swallow double and triple doses of morphine with no visible effect at all. It didn't manage her pain enough after dosing frequently around the clock, so after a couple of days we agreed to transport her to in-patient hospice so they could give something else (stronger) intravenously. She had less than a week to live, and we did not want her suffering. I say this to say, I was afraid of the morphine but it may as well have been kool-aid for her. Their comfort is what it is for. And if it helps, great. But it isn't like arsenic (or whatever would take someone out). Not in my experience.

DH also has had to receive morphine a few times last month. From me, at the on call hospice NP's directive. It was to keep him calm when his respiratory issues were so severe he would not allow me to put his nebulizer mask on (or oxygen - so he was fighting the very things that could give him relief from the inability to breathe! He actually almost died twice, struggling and gasping in distress (suffering that I could not just watch), until I gave him the morphine as instructed). It just relaxed him so he would wear the nebulizer and canula. If his lungs had not responded at that point, at least he would not have been panicking and suffering so. He is fine now (well, back to his 7a baseline), and the morphine is back in the comfort kit in the back of the fridge. Its worst side effect to me is constipation. So he had to take more Miralax and also prune juice while taking the Morphine.

I hope you can get this resolved for your sake and your LO's. So sorry you have to deal with this aide's refusal to do her job and follow you and the Dr's guidance.

Denise1847

Please call the Hospice organization and talked to them. Usually family does administer the meds and is given parameters. Hospice is all about comfort care and a peaceful passing, which means little to no pain. You mentioned that the aide has been with him for 2 years. I wonder if she has either gotten so close to him that she doesn't want to let go or she sees it as an end to her job. I hate to say that but I cannot think of a reason one wouldn't want to relieve suffering.

gampiano

I had a similar situation with my mom, when her caregiver of 6 years refused to follow hospice instructions. She was from Brazil, and their concept of hospice is not the same as ours, so we had a cultural problem. It was a real struggle and very stressful for me . We have a shortage of caregivers here, so I had to keep her on.

When my husband was at end stage ALZ, i was allowed to administer morphine and received specific instructions as to the dose. We live in Ma.

Babz0226

I live in MA also, that has been interesting to hear new --news for me. My DH starting stage 7 and I want to keep him home if possible so that info about MA hospice I thank-you.

Malka

https://alzconnected.org/discussion/comment/200475#Comment_200475

Thank you. That made it clearer for me. I don't want to move my LO to a facility. I went over all the meds with her again. She will administer everything except the morphine. I will do it if I have to. The Hospice nurse said we can call them. I just don't know how long it would take them to get there. It will take me time to get to my dad, but hopefully not too long. It is what it is. It's a week since he has been off his meds. He is sleeping most of the time and not eating or drinking much. I have to call Monday to request a hospital bed. Happily he is not in any pain at this time.

M

Malka

Thank you all for your comfort and support. I am still struggling with this.

Today LO's hospital bed was delivered and put together. Moving him gave him pain and also the fact that he fell the other night and hit his back which now hurts. I gave him the morphine when before I left at 3. He was peaceful.

I called at 7 to see if he was awake and pain free. She was giving him the meds that are still prescribed to keep other pains away. I brought up how easy it was to give him the morphine and said that it really calmed him. She retorted that he woke up right after I left and I answered that it didn't kill him. I really don't know what to do. I will call hospice tomorrow, but I don't know what they are going to say. I want to let him stay in his home, although does he even know where he is? I am so stressed by her.

Sorry for going on and on and not making sense. I guess I know what I have to do, which is move him or find another aide at this late point. I cannot stand that she is making his medical decisions. He made the decisions, not her.

I will warn anyone on this forum or that I come in contact with now to make sure their aide does not have a problem with hospice care. After all I have been through I don't deserve this. My LO doesn't deserve this.

M

Quilting brings calm

This is so frustrating. She’s in the wrong field if she would deny a dying person comfort medication. It was the nurse at my step-dad’s AL who not only gave him the morphine from hospice, she asked for extra syringes. That way she could get them ready and the aides could help him take it at night and the weekend. It wasn’t a shot as much as a squirt of the liquid into his mouth. If he could raise it to his mouth, they could push the button to inject it.

Just because he woke up didn’t mean the morphine didn’t work. The first day it helped dad be free from pain and he was able to be more alert. As the days went on, he slept more but that was because he was getting closer to dying from his illnesses, not the morphine.

Malka

I was with my dad today and gave him the morphine. I can't be there tonight. I will be there again tomorrow to see him. I can only do my best. Thankfully, he seems not to be in pain, but it's hard to tell. I might hire a night aide to help the live in and then she could give the morphine.

He has stopped eating and drinking. Only sips of water, but no food. The hospice nurse said it wouldn't be too long, but you never know.

Thank you.

ButterflyWings

(((Malka))) Hugs to you. You are helping him in just the way he needs, at the most important time. It seems like your idea for a nighttime aide for comfort medication management might be good, if that is possible.

M1

Malka i am so sorry and hope he doesn't linger. When the crisis is behind you i still think she needs to be reported. I certainly wouldn't give her a reference. Life is too short for this kind of thing.

Malka

Update.

I went to my LO this morning to be there when the hospice nurse was there. When I walked in my dad was in pain. He whispered he hurt. When I asked where, he responded everywhere. I walked to the fridge took out the morphine and gave him 10 ml's. I asked her why she didn't at least give the Atavan. She said she couldn't.

The good news is that when the hospice nurse came she spoke to the aide about her reasons for not giving it. She also told her that my LO was in GREAT pain. She explained that giving him the morphine wouldn't kill him just make him comfortable. The aide has agreed to do it, but I know it is very hard for her. I thanked her profusely. I still think she needs a night aide and she is going to ask around among her friends. If she can't find, I will go to an agency. I want her to be well and rested.

Thank you all for your support. It means a lot.

M

Chammer

https://youtu.be/MODpwSkQvZ8?si=7r4gqm69avA4Fwaw

At 39 minutes in Dr. Cummings talks about hospice and how morphine relieves muscle pressure in the chest area providing relief. I know per your comments that your father's caregiver is on board but reluctantly so maybe this will be helpful to relieve her concerns.

Malka

So, the end of the story.

Aide gave the morphine for one day. The next morning she stopped. She didn't tell me she stopped. I had errands to run so I didn't get to his apartment later than I usually do, but I thought it was okay and everything was running smoothly because she told he was okay.

When I got to apartment, I could hear his breathing and it sounded as if he was drowning. I asked if she had given him the comfort medicine and she told me she couldn't. I ran to get the morphine and gave it to him. I had to clear his mouth of secretions. I called the hospice nurse and she had me and my husband count the compressions of his chest rising. She said he was actively dying and a nurse would be there as soon as possible. She told me to give him all the meds and the times. Also to keep a record of it.

The hospice nurse arrived later. I can't even remember how long it was. It felt like forever. I showed her everything I had done. She cleaned him up and made him comfortable. She told me that he would probably would be gone that night or early the next day.

I have a friend that runs an aide agency and asked for him to send me a night nurse to administer the drugs for hospice. She arrived at 9. I ministered to him until then.

At 11:15 the night nurse called to say he had passed away.

Then the wait for the hospice personnel to declare the TOD. Then the wait for the funeral home to come and take him.

My dad was buried yesterday. It has been a very long few weeks. It's quiet and I keep thinking I should be calling him.

I hope this is a cautionary story. My dad's aide was a good aide until the end. I take part of the blame because I never asked her what her beliefs were towards hospice. I figured everyone thought as I do. Don't take it for granted, ask the aide. I would have certainly put my dad in a hospice facility if I had known.

Thank you for listening and commenting. It helped a lot.