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Elderly parents
Original poster

Peg or not for 80 year old df

19 replies

Placeinthesun · 22/02/2015 20:21

Df has had parkinsons for 14 years, lost the ability to swallow last week. Is frail, limited mobility (hoist on order) , diapered full time, has day time carers, sleeps downstairs, is fully dependent really. He's aspirated food into his lungs and is a pneumonia risk. Was admitted to hospital last week with the intent to peg him (he said one eve he didn't want to have it the next day said he did to his gp), but the op been delayed while they assess his strength and cognitive function. He's now nil by mouth but has iv fluids and they've put in an ng tube for feed and meds.

They've said it's 50/50 if he's a OK for surgery. My Dsm, his main carer and I feel that this would be an invasive procedure and not really improve the quality of his life (he can no longer read or follow the TV and can't really speak) . My siblings think peg should go ahead however slim the chances of it prolonging his life are.

He has a dnr in place but no other advance directive, me and Dsm have power of attorney but are required to consult with close family (and rightfully so).

I am hoping it will come down to a medical decision if Df lacks capacity to consent. I am concerned for the quality of his death as well as his life.

Anyone been here or have any useful advice?

OP posts:
Original poster
Placeinthesun · 22/02/2015 20:22

Meant power of attorney for medical decisions in my op.

OP posts:
Needmoresleep · 22/02/2015 20:33

What an awful position to be in. If you and your dsm are in agreement I would collect as much detail from the doctors about how invasive the procedure would be and how much (little) it would do for his quality of life. If you can get an honest view from them about the value of going ahead so much the better.

I would then convey this to others so that a passive response can be taken as assent. Eg unless your disagree strongly we plan to make such and such decision. Explain your concerns about the physical and emotional burden falling on your dsm. It might be easier for others to not say anything rather than be part of an active decision.

Best wishes.

kilmuir · 22/02/2015 20:37

not

TillyGotTangled · 22/02/2015 20:39

OP sorry things are so rough at the minute Flowers It is such a horrid place to be in and something that can't be answered easily.

If your DF is assessed as having full/partial capacity then the focus really should be on what he wants.

Otherwise it really does come down to weighing up the quality versus length of life aspect.

I would try to get as much professional opinion as possible. Sometimes decision making is greatly influenced by what is easier on the family, rather than the individual which can be two entirely different things. I'm assuming your DF has a social worker - they would be able to have a good objective conversation with no emotional involvement which can be helpful.

Original poster
Placeinthesun · 22/02/2015 21:18

Thank you. It's tricky as his capacity seems to wax and wane with the on/off nature of the Pd, moments of lucidity vs. Total confusion. He doesn't have a social worker as they have been lucky enough to find home care and adaptations.

Guess is waiting to see what capacity assesment brings and go from there.

My dsis is just saying "... If the NHS won't do it why can't we get it done in his Bupa". It's sad.

OP posts:
Original poster
Placeinthesun · 22/02/2015 21:20

Aghh... Autocorrect. Fund not find and on not in.

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TillyGotTangled · 22/02/2015 21:54

If he is in a hospital setting he will have a key worker assigned to him that can provide the same help and advice.

I would seriously doubt that BUPA would perform this operation if NHS declined. If the decision is that peg feeding would not be an option then it will be almost entirely based on your dad's future benefit from it.

Will your dad be able to live a comfortable, pain free life with a degree of enjoyment? Or will he simply be alive and there? That's not a question to answer here I don't think as it is entirely subjective but it is really the crux in making your decision.

Good luck xx

Original poster
Placeinthesun · 22/02/2015 22:06

As far as I am concerned all peg will do is keep him there and alive with no ascertainable improvement to his quality of life, I bellieve (as do dsm and carer) that it will just prolong the end.... Or worsen it if he was to get an infection or similar complication.

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whataboutbob · 23/02/2015 13:27

Hello, I am a dietitian, my sympathies to you in this difficult situation. Has your Dad expressed any wishes on this matter? If he lacks capacity that still would not preclude him having a PEG and it would come down to family plus medical team making a best interests decision. The potential benefits are : prevention of aspiration (although you can still aspirate on saliva/ feed with a PEG) so reduction in stress at mealtimes for your Dad and his wife and carers, better medicine administration so better control of tremors/ rigidity, better hydration , better nutritional status. It will of course not stop the disease from progressing. Downsides include risks and pain associated with the placement, infection around the entry site, if the patient is very confused they may try and yank the tube out. And of course it is a further medicalisation of your Dad's life and of the home environment, with feeding equipment around the place. I think the bottom line is it could extend his life a little by reversing undernutrition, but probably not by a great margin.
I hope you all reach the right decision for your Dad.

Original poster
Placeinthesun · 26/02/2015 11:23

Thank you all for the replies.

Luckily it came down to a medical decision and the lovely PD consultant who has treated DF for years informed DSM and siblings in strong, but gentle, words that intervention was futile.

My DF was transferred home last night (due to hospital transport probs he didn't get home until 11pm having been expected at 4pm but hey ho...) and District Nurse/home hospice team have been out and morphine regimine begun together with what antiparkinsons drugs can be delivered transdermaly. He has no IV or NG tube so it's just keeping him comfy and pain free until the end now.

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Needmoresleep · 26/02/2015 13:07

FlowersFlowersFlowers

whataboutbob · 26/02/2015 13:07

Hi Place I am really glad a consultant who knows your DF well was involved and you all reached a decision which i am sure sounds like the best one for your dad. Good also that he is getting ongoing support at home. He is lucky to have a caring daughter on his side at this intense time.

Theas18 · 27/02/2015 00:17

Place im sorry it's come to this but also glad you have a wise consultant brave enough to say " no more " as well.

No NG tube must be a relief for dad and coming home too - I almost saw mum visibly relax when she finally got home.

You know my tale well im sure. Wishing your dad a gentle death surrounded by his loved ones in his own home.

Thinking of you and if I can be of any help pm me

PingPongBat · 27/02/2015 11:14

So sorry Place - Flowers to you and I hope your Dad is as comfortable and peaceful as he can be. Take care of yourself too.

Original poster
Placeinthesun · 28/02/2015 20:22

Thank you all. I spent the day with him yesterday, morphine driver went on Thursday and he died peacefully at home with my siblings present this afternoon. Sad but so pleased he had the peaceful end he deserved, at home surrounded by love and as comfy as could be.

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Original poster
Placeinthesun · 28/02/2015 20:22

I meant the morphine driver was put in place Thursday.. Oops.

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Theas18 · 28/02/2015 20:55

Aww place. Much hugs for you. Just about 3 days since he left hospital to a quiet death at home surrounded by his loved ones. A good death. He chose his lovely family well.

PingPongBat · 28/02/2015 21:54

So sorry place Thanks Thanks

How wonderful that your dad was was surrounded by his family, by love & tender care. Sending you strength for the coming days.

whataboutbob · 01/03/2015 10:03

Place my condolences. As thea and ping have said, he was cared for till the end and died in his own home. All credit to his family.

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