Peg, when to discuss?

[Ownedby3cats]

At what stage do should you discuss inability to eat and use of peg?

Who instigated the discussion?

[JodiP]

Dad’s doctor when step by step asking what his wishes were. He explained to dad that it’s okay if they change as he changes. Dad said no to the feeding tube. He is losing his ability to swallow rapidly. Such a scary time for us.

[enjoysalud]

No discussion of a PEG until my son was in the hospital with his 2nd bout of aspiration pneumonia (and sepsis). The hospital doctor told my son they could not release him until either he passed a swallowing test or had a PEG installed. My son wanted to come home and agreed to the PEG.

I am one of those who is NOT a supporter of the PEG.

[Melhukin]

We had a lady from the hospital PSP team discuss this with my dad in a care plan meeting. It was difficult at the time as my dad could hardly communicate but he agreed not to have a peg fitted.

[Troubles]

From diagnosis my Mum said she never wants to have the peg. 6 yrs on and choking is starting and before she lost the ability to sign and talk I had her Doctor make a note of it and I also did up a letter of her wishes that Mum signed and my husband witnessed and signed which we did x 4 to also give to my Dad, Mum's sister and my Brother. The doctors part is not law abiding neither is our letter i guess but it is still my Mum's wishes should someone try make her have the peg. This disease has already stolen my Mum and to keep her alive with already no quality of life is cruel. Even though I know Mums wishes I hope we never get to make her decision. Iam not a believer of the peg.

[Katiebow]

The Speach and Language Therapist brought the subject up very early on with Ben, he was adamant he didn't want a PEG fitted or any other hospital treatment that would extend his life. The only treatment he was happy to have was for oral antibiotics or pain relief, the Hospice helped draw up an End of Life Plan involving detailed discussions with the senior nurse and palliative care consultant. Hope that helps.

Kate xx

[Sonic47]

Start the discussion earlier rather than later.

My mother has a date pencilled in but really ,such is her struggle to swallow,we should have done it 6 months ago.

[MissTR]

My mum initially didn't want a PEG but as things progressed she changed her mind. It was on a routine visit to the Neurology nurse. She said that on calculations of her weight loss and BMI that she would essentially be starving herself from now on, as she was unable to eat or especially drink enough. That was enough to make my mum to agree to it.

That was about 3 months ago. It has taken a bit of settling down, sometimes bad reflux and other times diarrhea. But overall a good decision for her. She no longer takes liquids orally and but she is still on a fork mashed food diet. Also there is no worries if she's having a bad day as they can top her up on PEG feeds. My mum can still talk a little on some days other days, it's just thumbs up / down signing.

[doglington]

My experience was the same as Kate. The hospice helped him to make and sign an end of life plan. We referred to it regularly but Chris never wavered in his wish to only have pain relief. When he was in hospital they suggested the peg. I said we had discussed it and all the family agreed with it. The doctor was excellent. She spent an hour talking to me and said it was rare for a family to be so clear. It made it straight forward to set up a palliative care team and have him nursed at home as he desired.

X

[AJK2001]

The Neurologist mentioned PEG as a treatment option early on, then the last two visits Mum has been asked her view, it being made clear she can change her mind at anytime. She said quite clearly she didn't want a PEG. Recently her swallow has got much worse and her appetite has declined so she is eating very little and taking fortified milks. She has discussed & signed an end of life plan with the Community Matron & her GP, saying she does not want a PEG or other intervention but be allowed to go as peacefully as possible. It was one of the hardest discussions I have ever had but it's what she wants and we will abide by that. At the moment trying to encourage her to eat/drink, but don't want it to become a battlefield, it's her choice and she knows what she is doing. It's heartbreaking to watch but her quality of life is pretty poor so why would you want to go on?

So to answer your question talk about it as soon as you can, so the person has time to think about it and what it means and can come to an informed decision. If you are comfortable that the person has made the decision themselves and understands the implications it will make it much easier if they are no longer to effectively communicate when the time comes to say yes or no, you can get some comfort from knowing you are doing what they wanted.

xxx

[NannaB]

With my husband it was discussed early on when he went to the Hospice day centre. He agreed to it at that time. Further down the line the Hospice suggested it was time to have it fitted but as he rarely choked and was eating well, together we both decided it wasn’t time. He finally had it fitted two years later when he lost weight, was very constipated, had a nasty pressure sore and wasn’t taking in enough nutrients to keep his body healthy. Within two weeks of having it fitted his sore disappeared, he put on weight, constipation ceased (the opposite for a while) and refused any pain killers as he indicated he didn’t have any pain. He wanted to continue with weekly outings which were made much easier with the PEG right up to 3 weeks before he died. 10 months later he decided he had had enough when he vomited something nasty and indicated he no longer wanted to be fed or watered. The last 11 days of his life were the most peaceful we had had for 6 years. No pain, no medication, he was able to squeeze the hands of the many who came to see him until he drifted off to sleep two days before his heart stopped. I asked him earlier if he was glad he had the PEG and he indicated yes and any regrets he indicated no. It was his decision and the right one for him although initially I had my doubts about prolonging life but as it was it greatly improved his end of life. It has to be the decision of the one living with PSP though and many don’t want it. It’s up to them.

Best wishes.

XxxX

[Yve2018]

I am not sure that this is relevant in the case of PSP but there are two types of PEG. One is being fed by a tube through the nose and the other is through a tube directly into the stomach. The principle is the same. My husband is “nil by mouth” and PEG fed ( for other reasons than PSP). He has refused to feed through the nose as this is a nasty procedure and the tube is a permanent thing. He feeds himself through a tube in his stomach. Although this is not ideal it is a better solution. Hope this helps.

[kenh1 in reply to Yve2018]

My wife has been fed by ng tube through the nose for the past 4 years. It is not nasty and tube changes are a painless 5 minute job when carried out by an experienced nurse. We were refused a peg to avoid the risk of an invasive operation. Initially I was disappointed when a peg was refused. But in hindsight I have no regrets.

[Yve2018 in reply to kenh1]

I am pleased that you are happy with your decision and that you were told of the alternatives. My husband has no other health issues, so it is different for him. There is no outward sign that he has a problem, which suits him. He was originally fed through a tube in his nose and was only told of the alternative when he made a fuss. That is not like him and when I asked why, he said that the permanent tube was uncomfortable and intrusive. Being PEG fed is not by any means a bed of roses but it keeps our loved ones alive and that is what is important.

[Dadshelper]

Once the doctor gave a Dx of CBD, we had a long sit down talk with the doctor about what Dad's wishes were. I wanted to know exactly what he wanted done or not done in case he became unable to speak. My PoA and healthcare were done about a year before the Dx.

Ron

[Tttp]

Not in favor with a peg tube, with some have no problems , others have many, there are risks having a day or two in the hospital infection, they can still get aspiration pneumonia, it prolongs their suffering, good idea to ask them before they get worse what their wishes are, such a hard delimia, but every patient with psp is different. I hate psp such a horrible disease.

[NHGrace]

My mom had a DNR (do not resuscitate) at 60, so as soon as she got dxd and understood prognosis we filled out the MOLTZ form (Massachusetts medical form) stating her wishes. She, too, never waivered, but we also never got to a place where she couldn’t swallow regular softened food so weren’t put in the hard situation to need it. I’m sure it’s difficult for anyone who actually ends up there. Our SLP, neurologists and visiting nurses all brought it up with us.