PEG - what are the alternative options

[Licquoricelover]

I have been advised to get a lasting power of attorney in place for my husband’s care and our financial situation whilst he still has capacity to make decisions. I asked if he wished to be PEG fed if his swallowing worsens as the disease progresses. He does not want to have this procedure so what happens if the person cannot swallow without coughing or choking. How do they receive the necessary nutrients to survive. He says he wishes to be resuscitated but I worry he does not understand the risks and could be much worse off than he currently is. It’s a difficult discussion to have but appreciate we need to have something in place so his wishes are met. Can a GP overrule a persons wish if it means saving their life

[Kelmisty]

I’ve been through this with Mum, but she’s signed a DNR and expressed her views on PEG feeding earlier on and still the same as she won’t have one.

We were advised that her diet will need to become softer and more thickened fluid like, but when the swallow goes there’s nothing else they will be able to do. But from my understanding generally the swallow only goes in the last few weeks of life? Coughing and choking will happen all the time they eat or drink as it worsens. The hospice helped us with this discussion and explained the effect of resuscitation on a body..

I would speak regularly with your husband to ensure he understands what is being asked.

My Mum said I don’t want a peg keeping me alive with no quality of live. I wouldn’t go against her wishes. This illness only gets worse, just look for the little positives.

[Marazion]

sorry you living through the PSP journey of a loved one. Good advice to get his POA set up for both health and wellbeing and also finances it’s fairly easy to do and takes a few months to be processed, you don’t have to use it until you are ready. Re PEG mum decided no PEG and do not resuscitate as well due to quality of life factors. We also had no hospital admission. Her older person consultant and community neurologist helped us with the discussions. We also saw a hospice but already had the information from the consultant. Re food we started withdrawing food which would likely make mum choke eg peas. Then moved to bite size food then moist and soft then puréed and also for fluids it’s get thickened. We also had to move to liquid medications where possible and withdraw some meds and accept the risks. Gradually her intake reduced and she lost a lot of weight. Nutrition wise the home tried to put this into her diet but ultimately her intake was not enough and then it was taking ten mins per mouthful of food or fluids followed by being unable to then swallow at all. The collective decision was taken to stop all intake So it was a matter of days as her body shut down. Do get advice from speech and language on diet options and adjustments if you aren’t already. They ask advised on things like removing distractions like tv when eating, ensuring she had time to eat meals (fully assisted) and also her seating position to prevent aspiration chest infections. I hope that’s helpful. Everyone’s journey is difficult. It’s cruel on everyone.

[Oumarusk]

We have had a LPA for finance for a few years already and stupidly decided not to do the one for Health at the same time.

My husband's Neurologist advised us to get one done now, also before cognitive failure is a problem. I was concerned as he can no longer hold a pen to sign his name, but the Office of the Public Guardian said that as long as whatever he can squiggle is witnessed, it would be accepted.

We also had a long discussion with the GP who explained DNR and being ventilated. With no quality of life an option my husband decided that he wouldn't want to prolong the pain and suffering for everyone, not just himself.

The decision was made that he didn't want DNR or to be artificially fed.

Both he and the GP also signed a Respect Form which is now on his file. He has a completed Advance Decision form which is kept in a bottle in the fridge for any Paramedics to access. The surgery gave us the bottle and stickers to put on the front door and door of the fridge.

Wish you all the best in making these difficult decisions.

[BellaRooney]

It’s worth having a chat with your GP, I felt that my Dad was urged to get the DNR in place before we fully understood it.

You can put some notes in a ‘ treatment plan’ to have more detail in there, we wanted to make sure that if my Dad was choking for example that he would be treated and if he needed oxygen that he wouldn’t be denied it because of the DNR especially as so many medical staff/paramedics don’t understand the disease.

He/wewanted to make sure that he would be treated for anything that could get ‘fixed’ with positive outcomes.

My Dad never wanted the PEG either or to be ‘kept going’ in any respect.

It’s a hard decision as ultimately his swallow deteriorated over time and he could no longer swallow, this all happened gradually alongside him becoming much frailer. It did eventually draw his life and battle to an end.

He’d been ‘risk fed’ for years, enjoyed food for as long as he could, then progressed to a soft food diet for years and then the fortified milkshakes. We were lucky as his chest infections were minimal, he was assisted with his feeding at home and his carer and myself had learnt his pace.

Everyone is different, but this was our experience , l never regretted not pushing for the PEG.

Sending strength

X

[SunriseLegend]

When first diagnosed my husband opted for DNR and no hospital and no PEG . However when he later had a pulmonary embolism he was able to say he wanted to be treated in hospital - which he was and he recovered and came home. Then a year later he was told his swallow was so bad the risk of choking or aspiration meant he that he had no option but to be nil by mouth and be PEG fed or die. After long discussions and much research he decided life was still worth living and he opted for the PEG. 11 months later and he is still fighting on. He looks well ; has none of the stress of at risk feeding; hasn’t lost weight; and is able to keep fully hydrated. BUT and it is a big but - he hates the fact that he can no longer enjoy eating and drinking . It is very much a balancing act to decide and only he could make that choice. I have POA but am so glad that when the time came to decide 11 months ago he still had capacity so that I didn’t have to choose between life or death on his behalf. So the advance decision re PEG etc is not written in stone and if the patient has capacity can change their mind when the crunch comes if they wish

[timbowPSP]

Hiya Liquorice, A difficult choice to decide. I am 83, M, with PSP diag 7 yrs ago. Does ur man have a 'Living Will' in place? That directs the medics when to pull the switch off at end times. Othgerwise I think they may ahve to keep him alive 'forever'. Think I have it as 'let me go' if no response for two days but still alive. VERY handy to have in place .... sugest ask ur Doc about it. Free service, and lets you decide. Must be signed by Doc and two others(??).

Best wishes to you both. TimbowPSP

[Licquoricelover]

thank you so much. I appreciate these are very difficult decisions and I know my husband would be distraught at not being able to eat normally as he is and always has been such a lover of home cooked food. I am sure that is what is keeping him so strong.