Mom in hospice with pneumonia, need advice please.

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Sdaughter Asked January 2025

Mom in hospice with pneumonia, need advice please.

My mom is 87 years old. Her health and quality of life had declined severely over the past several years. This past Sunday she woke up with a horrible wheezing in her chest. She was taken to the hospital and diagnosed with the flu and pneumonia in both lungs, a UTI, and congestive heart failure. We talked with a palliative care doctor, and my mother chose to not pursue active treatment and go into hospice. She was admitted into the hospice facility late Sunday, overnight. The medications they are giving her every four hours seem to be keeping her mostly comfortable, except for when they come to care for her - bathing, changing depends, etc. Then, she yells out “no, no, no!!!!” and is obviously in distress. They have attempted to place a catheter twice, but for whatever reason, it is not working. No urine in the bag, but when they took it out she produced plenty. Since the catheter is not successful they will have to keep changing her depends often and cleaning her, which is horrible to witness and hear. My question is this: What are my rights here as far as pain control for her? If it were up to me, I would have her more comfortable and ‘out of it’, sedated if possible. Her doctor is making rounds and I’m not sure how to handle the conversation. I will tell the doctor all of this, but is there more I should do to keep her completely comfortable?

End of Life Hospice Medications Pain

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score 8 · Answer 1

Just keep telling them you want her FULLY medicated to whatever level they can, and that you fully understand that this may mean her death is hastened by some moments, hours, even days. That you want her COMFORTABLE.
Do know that as the organs shut down there is a good deal of confusion. This manifests in a sort of dreamlike acting out, and often picking at covers and such. Much of this is done below a level of consciousness and pain.
As much as you CAN be there, be there, encouraging as much medication as can be given.
I am so sorry. Ask them to explain what you can expect to SEE and what it all MEANS and if they cannot you need to have them send someone who CAN.

Helpful Answer (8)

Thank you. I just spoke with the doctor and she seemed very understanding and willing to give morphine and increase meds. She said she will order for them give pain meds before moving her.

(4)

score 7 · Answer 2

Update (Wed. Jan. 22 at 9:05 pm) Increasing the pain medication worked very well for her. She has been peaceful since then, thank goodness. The doctor also allowed for extra pain meds before moving her, which worked wonders. Thanks to everyone who commented.

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score 6 · Answer 3

Thank you for responding. I just spoke with her doctor and they are going to increase her pain meds and Medicate her before they move her. So I’m grateful for that, hopefully that will start soon.

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I hope everyone gets some relief now

(2)

score 5 · Answer 4

Ask to speak to the hospice doctor and ask for meds to help calm her. Turning is uncomfortable and while the meds may not take away all the discomfort, they may alleviate her anxiety. While inpatient, IV lorazepam did the trick for my mom, not so much when delivered orally. Also if she is in pain ask about morphine or other meds to help her cope. Here are words of wisdom from a geriatric psychiatrist I worked with on behalf of my mom: "Sometimes the most merciful thing you can do is give them enough meds to alleviate their mental pain. Even though they may be sedated, it's helpful to the patient. If they were suffering physically, you would do everything to make them comfortable. The same." Don't worry about sedation at this point, worry about her comfort.

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Thank you for your response. It seems mom is occasionally trying to talk with me, her mouth is open and she cannot form her words. It’s hard because she can’t tell me what she needs, but the doctor should be in soon hopefully and I’ll talk to them about something to sedate her more or for pain.

(1)

score 5 · Answer 5

My late husband even in his final week of dying and being unconscious and heavily medicated on Ativan, Haldol and Fentanyl would still holler loudly when touched or moved. It was hard to watch, but none of the medications hospice were providing seemed to help with that.
I don't know if there is a good answer here, but hospice should help you with all of this.

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Okay, thank you for your response. It is awful to watch and hear. It wouldn’t be too bad if they didn’t have to move her often, but her catheter is not working, so they are still having to change her frequently.

(0)

score 4 · Answer 6

Ask if they have a "purewick system". Purewick is a soft, flexible tube that lies outside of the female body next to the urethra. It is connected to a tube which goes to a bottle. The bottle is connected to suction which will gently pull the urine she voids into the bottle. All this means less changing of diapers.

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score 3 · Answer 7

Usually there is a social worker you can talk to In the Hospital . Hospice has social workers . I find In this situation to get as Much support as Possible - wether it is a Psychiatrist , social worker , Hospice or Family . My Mom ended up On Life support after an pneumonia - I had to drop Out as I had a very Ill brother at the same time and let the other family members take over the Last 2 weeks of her Life . The Hospital wanted to Place a feeding tube into her. I said " she isn't suppose to go Under anesthesia - call her cardiologist . " No One would Listen to me . After the feeding tube went in and she woke up - Later that night she Had a heart attack and became brain dead . Approach the Doctor , ask for a social worker - get as Much support as Possible . Ask for the Hospice social worker and Nurse .

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score 2 · Answer 8

Morphine is a great drug for Pain relief . You Might want to suggest that .

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score 1 · Answer 9

Is it really pain they experience or just don't want to be touched, poked or prodded. Just want to be left alone.

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score 1 · Answer 10

Do you have medical POA? If not, and no one else has POA, are you her closest family member and main caretaker? Is there a competent spouse?
Assuming you are the point person, then you have a lot of say and can ask questions and make decisions. That is, if her doctors agree that she is not able to make sound decisions in her present state. Treatment for flu, pneumonia and a UTI are all very non-invasive procedures and these things are treatable with antibiotics. Congestive heart failure is not. So, I assume that her non-treatable heart condition and poor quality of life is driving the decision to not treat the infections. Assuming that is the most prudent decision, then it is the job of Hospice to keep her comfortable - meaning free of pain and anxiety. I would definitely talk to her doctors and Hospice about her distress when being changed and come up with a better plan to keep her clean and comfortable. It sounds like you are doing everything you can for her - you can find peace of mind in that.

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Mom in hospice with pneumonia, need advice please.

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