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End of life register

7 replies

Ataxicbrother · 03/03/2020 20:32

My dad had bladder and kidney cancer (different types, but found at same time).

He already had stage 3 CKD (type 2 diabetes), and after the radical nephrectomy his kidney function decreased and he was diagnosed with CKD stage 4 (nephrectomy in Jan 2018).

After the kidney removal he had a mass of fluid in the space left. He had an ultrasound, and when he received the results from the consultant, they just said it was a side-effect, but there was nothing there, and we could be assured the cancer had not come back. We were all relieved.

He saw the consultant for his MRI results and they informed him that there was a 4cm mass between the removed kidney and the remaining one. They also said something about inflamed nodes on the aorta (although dad said it was a mass on the aorta - I wasn't there and neither parent can remember). It is, however, inoperable.

Mum & dad asked me to look at his medical notes and his GP had a multi-disciplinary meeting, where they put dad on "end of life register". This was before the GP had the MRI results.

I'm going to the oncologist with them, but haven't told dad about the register, as I don't fully understand it, and he's trying to ignore his latest setback.

Does anyone know what this register is?

I should also add that as well as cancer and CKD, dad also has COPD, so I know he's not well, but he's incredibly strong, and I can't bear for him to give up hope.

OP posts:
DianaT1969 · 03/03/2020 20:41

Sorry, not in medicine, so can't help. However, both of my parents passed under palliative care from the hospice. I agree that once they heard 'end of life, not long left', they started to give up and checked out a bit. Whereas they had felt strong, were trying to be independent until then. Their quality not life was pretty good and they outlived all earlier predictions. Your dad deserves the truth, but I don't think it's a lie to say that hospitals start talking about this when conditions are inoperable, not curable or life-curtailing. But that he shouldn't give up and should keep battling through for however long he has quality of life.
My thoughts are with you OP.

Ataxicbrother · 03/03/2020 20:46

Thank you Flowers, so sorry about your parents.

OP posts:
DianaT1969 · 03/03/2020 20:52

Time heals and you only remember the good times. Lots of good memories fortunately. Plus we're probably all aware of the circle of life and that we need to make the most of it while we can. 💐

Ataxicbrother · 03/03/2020 22:50
Flowers
OP posts:
AndWhat · 03/03/2020 23:12

www.goldstandardsframework.org.uk/
Take a look at this website as it may answer some questions

Ataxicbrother · 03/03/2020 23:21

Thank you AndWhat.

OP posts:
Minervamink · 03/03/2020 23:32

I don’t know what area you are from but we have something similar here. It’s a register that means if your dad was to die then it was expected. It really helps make the process simpler, because if someone is not on the expected list, then they may need to have a post-mortem,
If you google expected death register you should find more information on this.
Really sorry your going through this op. Thinking of you.

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