Is hospice care what we need? - Advanced Prostate...

Advanced Prostate Cancer

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Is hospice care what we need?

Tua32427 profile image
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My father is currently stage 4 pc with lots of mets. He also has a recent heart condition ( a tear in his aorta that leads to anyersm in his stomach). They couldnt operate because too risky. Dr said he wouldnt want to do that surgery because requires splitting you open to repair the aorta down to stomach. So we decided to go the route of hospice. Hes been in hospice since january. One minute the dr was saying we would have only 6 months. Its very confusing because the cancer dr came to see him in the hospital when they discovered his heart issue and made it sound like cancer was better. But yet the hospice dr acts like the cancer will kill him. So confused and struggling watching him in pain. I guess its not a question but more looking for similar stories and support. Thank you.

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Tua32427
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YostConner profile image
YostConner

Choosing hospice is intensely personal, but I am concerned he is in pain. It seems to me one of the advantages of hospice is pain management. When my father was in hospice, that was of high importance. I urge you to talk with the hospice team about that.

Tua32427 profile image
Tua32427 in reply to YostConner

Thank you.

Advo__cate profile image
Advo__cate

If they have to open him up at the sternum/manubrium and he has various bone mets through the middle of the sternum/manubrium where they cut him open, it is highly possible the bones where they place the staples closing him back up would not heal. It's more than the risk of dying on the table, he may never heal *IF* bones mets to the area would be cut through for the surgery.

My husband is not in pain or ready for hospice by any means, but he does need a quadruple bypass and the mets to the area where they cut is what is preventing the surgeons to go ahead with the surgery (I had to advocate time after time for them to look at the scans and see if he can be cut open with all the mets). He was wheeled to surgery, in the room, THEN the surgeons decided at that point (someone finally listened!) after looking at the scans that it was too risky. My husband still has a lot of life in him and they didn't want to disrupt his QoL to the point the sternum/manubrium would never heal. This would bring about a whole new path of pain and suffering for him...and the family.

Your dad is in such pain then hospice should be keeping the pain next to nothing...I would see if there is more they can do for your dad. How does your dad feel about it? Is he okay with being in hospice or wanting to do more?

Tua32427 profile image
Tua32427 in reply to Advo__cate

How is your husband doing now? I will keep him in my prayers. I think maybe a new hospice is needed. Its just we have never been through anything like this before and its like you dont know what to expect from hospice. But i will tell you when he first entered hospice they put him in their faciity for a morphine pump for the pain. Well the next thing you know we go to visit my dad and hes so out of it. He went from a talking person to someone who was hallucinating and couldnt even recognize us. They kept saying well its the disease progressing. So i asked what type of meds they put him on. They has him on ativan, methoadone, and morphine. Well hes had 2 of those drugs before but never methadone. Basically they sent my father back to us by ambulance in the most upsetting state. He couldnt recognkze objects or people couldnt eat. I reaearched and discover he could be having a bad reaction to methadone. Ands thats what it was and at the facility they didnt even bring that up. They kept saying his cancer was getting worse maybe to the brain. It was just a horrible experience because my fathers brain and ability to conversate was what he had left since he cant walk or anything.

Tua32427 profile image
Tua32427 in reply to Tua32427

I should mention to my father is 100 percent disabled Vet. So this hospice was something the VA arramged for us and is paying for.

Advo__cate profile image
Advo__cate in reply to Tua32427

Sounds as if you may need to look at new hospice company. We had to switch out for my mother-in-law. The crazy hallucinating stuff did go on with MiL because she was passing, but after a few episodes of that, hospice was able to keep her sleeping peacefully.

My dad couldn’t handle Ativan, haldol, etc as it caused hallucinations and more. He was not in hospice but had fallen and was put in the geriatric psych floor, he never was himself after they finished with him. It is truly awful how some elderly folks go to the hospital for help and come out a different person, not at all what they were when they had entered.

My husband is waiting for stenting this coming Wednesday since the bypass is not an option. It was supposed to be this past Wednesday but it was scrubbed early morning because of a cath lab mess up. We switched cardiologists and hospitals...we finally have a cardiologist that it up to the challenge of his case and has experience that the other one does not have.

Thank you for prayers...I’ll be praying wisdom and discernment for you as you proceed in caring for your dad, may he get some relief asap.

farmanerd profile image
farmanerd

One more member that says that the hospice staff (nurse) should be doing a better job managing your fathers pain -- that is a major part of palliative care. With both of my parents -- my father with melanoma in 2016 and my mother who spiraled downhill after a broken hip and died mid-January -- the hospice nurse carefully monitored their pain levels and adjusted dosing to keep them comfortable. We were also told at the beginning that treatment of the underlying condition could begin again either due to changing a choice or newly available treatments, which would of course remove them from the hospice program, but that they could also reenter in the future. It is a hard choice to make. We were guided by the advanced directives that our parents had written. It still didn't make it easy.

For my dad, spinal and brain mets stormed through his body in the end. My mom's quality of life never recovered, she never regained mobility, physically declined and she even told us that she just wanted to be with her husband. We knew hospice was in her future. It still didn't make it easy. Hopefully you have family or friends to lean on during this difficult time. Can your father make his wishes known to you?

Tua32427 profile image
Tua32427 in reply to farmanerd

His wishes are confusing at times. Hes been battling cancer for 10 years now. This heart thing took us all by suprise but its like if u bring it up he gets upset like asking him his wishes and asking if hes wants dnr. And the thing with upsetting him is his heart condition since they could not do surgery, his blood pressure has to remain low. Upsetting him could cause his aorta to burst if pressure gets high.

j-o-h-n profile image
j-o-h-n

I am truly sorry that you're going through this ordeal. Not to add to your issues,

"But yet the hospice dr acts like the cancer will kill him". What are this Doctor's credentials? Is he a Pca specialists?

j-oh-n Saturday 03/02/2019 7:50 PM EST

Tua32427 profile image
Tua32427 in reply to j-o-h-n

Hes an oncologist. I get the feeling from him and his mannerisms hes the type of dr that u could be on your deathbed and he would minimalize it and be optimistic

j-o-h-n profile image
j-o-h-n

That's the kind of doctor that he/you need...

j-oh-n Saturday 03/02/2019 10:14 PM EST

Tua32427 profile image
Tua32427

Thank you for your prayers. My father is more of a home body. Even for his pc treatment. I begged him to go to a place like cancer center or somewhere different but his wishes were not to travel because that is painful for him. He has mets to the spine with a compression fracture. He has been wheelchair bound for awhile now.

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