Hi everyone been so busy looking after dad he's gone down hill really quick .he's lost loads of weight .Doctors want to go for the

A Peg my sister and me said no so did dad but they said he's not in the right frame of mind to make that decision himself .There's a meeting in Friday with doctors / speech therapist and the peg team which we have not been asked to attend .Its alright them all making the choice for him they don't see him suffer every day like we do ,it might feed him but it doesn't slow down this horrible disease all its going to do is leave him to suffer longer.They have done memory tests and he past them all ,he knows what they talking about but because his speech has nearly gone its quite impossible to understand what he's saying .Our only hope now is if they think he's not strong enough for the op .Its going to be a long few days for us now til we find out what been decided .

Must go dads knocking for me .

Love to you all x

17 Replies

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  • i am so sorry to read about your father - i have psp and am determined not to go for peg feeding - it will only add to the indignities of this vile disease .... i have told my family this but have nit done a directive which is important in case i get to the stage that your father is at - my love to you all

  • hi I have opted not to have the PEG when I can no longer feed normally or say anything at all

    it is a difficult choice to make 4 someone else like your dad but hang on in there

    and try to smile

    lol Jill:-)

  • Your predicament has really concerned me. it sounds as though you are aware that your dad is near the end of his life and you want his passing to be peaceful and painfree. If you feel that he is saying that he doesn't want a peg tube then they are not respecting his wishes.Do you live in the UK, if so then why noy try phoning the PSP advice line and see if they can help. He needs an advocate badly. What would happen if you wrote on a piece of card what the doctors want to do and ask him to respond with a nod or shake of his head. If you follow this idea and he can cooperate I would make sure that members of staff are present to witness it. My thoughts and prayers are with you.

    Teena2

  • Thank you for your reply .He did say no but they said he doesn't understand why they want to fit the peg that is the issue they have .He knows me and me sister don't want it for him so they think he's just going going along with us to keep us happy . All we want is for dad to go peacefully with his family around him not on a operating table by himself.

    Once again tank you x

  • Sound like time for a change of doctors or hospitals or care facilities. They are trying to bully you into the decision for a PEG. Don't let them!!

    Jimbo

  • Definitely phone the PSP advisers. It sounds as if your medical people do not understand PSP, something I had to contend with every day of mum's illness. Mum was constantly questioned and tested by all and sundry for dementia and I could see her feeling very upset about it. She would tell me that's what they were testing as soon as they left the room. It's bad enough losing your voice and everything else but another thing to be treated as if you don't know your own mind!Mum was adamant throughout that she did not want any feeding interventions even though she loved her food. I would never wish it on anyone with PSP to be kept alive longer purely by feeding interventions, it's cruel.

  • Hello

    The medical team seem to be unaware of the nature of PSP with respect to the fact that your dad is quite aware of things told him and understanding them. You are right in saying the PEG will not delay the progress of PSP and does not prevent aspiration pneumonia. It seems quite unbelievable that your voices are not being heard, and especially if your dad said "no", they should not question his ability to understand.

    Irrespective of this this specific problem with your dad, a review of such things as PEG has just been written in Medscape (American Geriatrics Society), that is available for your medical team to read. It's the first item on the list that they should consider......if they think your dad has (advanced) dementia such that he cannot make a decision (which is not correct, as I mentioned), then they are most likely making the wrong decision about PEG feeding.......

    The AGS List of Five Things Physicians and Patients Should Question (Table 1).

    1. Don't recommend percutaneous feeding tubes in patients with advanced dementia; instead, offer oral assisted feeding.

    Careful hand feeding of individuals with severe dementia is associated with comfort and functional status that are as good as, or better than, those associated with tube feeding. Older adults with advanced dementia who are handfed run lower risks of aspiration pneumonia and mortality than those with percutaneous feeding tubes. Tube feeding is associated with agitation, greater use of physical and chemical restraints, and worsening pressure ulcers.

    Individuals with advanced dementia frequently develop eating and swallowing difficulties that lead to poor oral intake, weight loss, and aspiration. Approximately one-third of nursing home residents with advanced dementia have feeding tubes.[7] Feeding tube use is intended to prevent serious adverse outcomes such as aspiration pneumonia, malnutrition and its consequences, functional decline, and death. It is also intended to improve comfort. Nevertheless, tube feeding cannot be expected to prevent aspiration of oral secretions or to reduce risk of regurgitation, and no published studies have suggested that feeding tube insertion can reduce the risk of aspiration pneumonia.[8] A nonrandomized study found that orally fed individuals with oropharyngeal dysphagia had significantly fewer major aspiration events than those fed by tube.[9] Regarding undernutrition, no data suggest that providing additional nutrients through a feeding tube improves meaningful clinical outcomes.[8,10] A Cochrane systematic review noted that the use of feeding tubes in individuals with advanced dementia is not associated with better nutritional status, lower risk of pressure ulcers, or longer survival[11] than hand feeding. Another comprehensive review found no evidence to suggest that tube feeding can improve pressure ulcer outcomes, reduce infections, enhance functional status, or increase comfort,[8] and a propensity analysis found that tube feeding was significantly associated with worse pressure ulcer outcomes.[12]

    The adverse, burdensome effects of tube feeding are significant. Aspiration pneumonia is the most common adverse event.[13] Others include tube occlusion, leaking, and local infection.[8] Furthermore, individuals may need to be physically or chemically restrained[14] to keep them from pulling the feeding tube out of place.

    Conservative hand feeding approaches begin with appropriately positioning the individuals, with the upright position preferred[15] when possible. Other factors that appear to improve outcomes with hand feeding include nursing home staff education; ad lib diets; medication adjustments;[16] and use of finger foods, preferred foods,[17] and foods with strong flavors.[18] Specific feeding[15] techniques—such as offering frequent reminders to swallow multiple times per bolus,[17] reducing bolus size to smaller than one teaspoon,[18] encouraging gentle coughs after each swallow,[18] using facilitating techniques such as stroking the cheeks and neck,[19] placing food and fluid well into the mouth,[19] and optimizing the eating environment—all seem reasonable as well, although an evidence base for these strategies has not been well established.

    There are significant opportunities to improve decision-making on behalf of individuals with advanced dementia and feeding difficulties. In a study of relatives of residents with dementia who died in nursing homes and had a feeding tube, 13.7% reported that there was no prior discussion about feeding tube insertion. In cases in which such discussions occurred, 41.6% of relatives reported that the discussion lasted fewer than 15 minutes, and 12.6% reported feeling pressured by the physician to insert the tube. Tellingly, family members with loved ones who died with a feeding tube were less likely to report that their relatives received excellent end-of-life care than family members of those who did not die with the tubes.[20]

    Approaches to address this issue have been developed and tested. A randomized controlled trial found that a decision aid for surrogates deciding among feeding options for nursing home residents with advanced dementia improved the quality of decision-making. This intervention showed evidence of sustained benefit over time.[21]

    All the best, and keep this forum informed because the outcome will be important to others in this circumstance.

  • Strelly, I'm interested. Don't the UK and Australia have legal documents that give a loved one the right to select medical procedures for another person? We have that in the USA. I would scream bloody murder if any doctor tried to go against my wishes for my dear wife's medical care.

    Jimbo

  • Hello Jimbo

    In the case of MrsFarringdon, I did not pursue whether her dad had previously signed legal documents because I was assuming there were none - otherwise the doctors would not be able to act in the manner they are doing.

    Now to answer your query. Yes we do have legal documents here in Australia - one is the Enduring Power of Attorney that allows me (and my daughter) to deal with any issue with respect to my wife should she become incapable. This does not include medical decisions. However, there is another legal document that is called an Advance Health Directive (or Living Will), that my wife has already signed. This lays out all her wishes with respect to future medical needs/interventions etc. One of these relates to her NOT wanting to have a PEG inserted should she find herself unable to eat or drink.

    Like you, I would not tolerate any interference with her wishes. Our neurologist has written in his notes that my wife does not want certain interventions, so I have it on official medical records as well as the Advance Health Directive.

    As you can see from my post above, I thought that if MrsFarringdon's dad did not have any legal documents signed, at least they could appeal to current medical opinion with respect to PEG.

    All the best.

  • So many professionals make the mistake thinking PSP patients have dementia. I don't think that is true. I think it is more a disconnect of brain function that makes it very difficult for the patient to express his feelings, not to not understand the implications. My husband is now in hospice and has no dementia at all. He just takes so long formulating his responses and most people are too impatient to wait for his comments. If you wait, it all makes sense.

    You must hang in there and be firm as your dad's advocate. I liked the suggestion to write on a card what the issue is and let him respond with a head movement. Good luck and God bless.

  • Caroline, I totally agree. My wife's brain works fine, just slower than a normal brain. Cognitive responses just take a bit longer than a "normal" person.

    Jimbo

  • You and Jimbo are quite correct about the type of dementia named in PSP (remembering the other name of PSP is nuchal dystonia dementia). The official description of the "so-called" dementia in PSP in literature is as follows:

    Mental changes are often limited to personality alteration and forgetfulness. As time goes on however most patients develop a mild or moderate degree of mental impairment or dementia.

    In PSP, the dementia, if it does occur, does not feature the memory problem that is so apparent in Alzheimer's disease. Rather, the dementia of PSP is characterized by slowed thought and difficulty combining different ideas into a new idea or plan. These mental functions are performed mostly by the front part of the brain (the "frontal lobes"). In Alzheimer's, on the other hand, the problem is mostly in the part of the brain just above the ears (the "temporal lobes"), where memory functions are concentrated.

    Alzheimer's disease also includes either difficulty with language (such as trouble recalling correct names of common objects) or difficulty finding one's way around a previous familiar environment. Fortunately, these symptoms almost never occur in PSP.

    Slowing of thought can cause major problems for people with PSP by making it difficult to partake in conversation. A question may be answered with great accuracy and detail, but with a delay of several minutes.

  • Thanks for the great explaination of the differences in PSP and Alzheimer's. Good stuff!

    Jimbo

  • How sad. My wife and I have also decided on not having a PEG if that time comes. I would think that if the doctors explain the PEG and ask him to answer if he would like it he must be able to signal "yes" or "no" using a hand squeeze or something. If you have a document giving you power over his medical selections then I would think that would take power over the doctor's wishes. If the doctors say he can't make a decision and you have the power in writing giving you that authority they have to honor that no matter what they think should be done. Don't get bullied into doing something your family doesn't want and your dad doesn't want either. Being on a PEG when you can't speak or have mobility is not a place I'd want my dear wife to go. I've read posts and heard of people kept captive in their body by a PEG when they wanted to let go. My sister-in-law just had a patient in that spot, not pretty. Just my opinion.

    Jimbo

  • Hi, I'm so sorry to hear that, but a peg tube is not the end ! My father was diagnosed with PSP 3 years ago. After being misdiagnosed, numerous falls (broken legs, etc), the deteration is going on very slowly. Beginning of march this year was a very bad period for my mother and myself : my dad couldn't eat or drink anymore and we thought the end was nearby. Our doctor called the palliative services to support us. Fortunately we didn't take this option and we went to a university hospital where they places a peg tube (after spent 2 weeks to recover first). From day one he was back at home we started to give him some water, some chocolate, etc. - of course on our own responsability because the hospital informed us we should not give him any oral food anymore. And what happened ? We now use the peg tube only for giving him extra water. How we do it : in the morning we start we yoghurt and very small soft pieces of fruit. Lunchtime and dinner is cuttered food. Sometimes he can eat 'normaly' small pieces, always soft with many attention of the care giver. I have discovered that the better the 'atmosphere' the PSP patient is, the more comfortable and relaxed he is the easier it is for him to swallow. Lunch or dinner takes us one hour each but is worthwhile. We also give him daily a large dosis of liquid Q10 and that helps! We've tried for 2 years a high dosis of Q10 powder in caps but that doesn't help at all.

    Take care !

    Vincent

  • Hi, Yes, your Dad's wishes should be respected, I agree - but I also would like to say that having a PEG did make my Mom's last 2-3 years very comfortable.

    She had lost weight and gone from 12 stone to 6 stone. She looked like a walking skeleton. She broke her arm and went into hospital. The dietician had discussed a PEG feed beforehand with us when Mom was more able, and she had said no. However, in the hospital a Motor Neurone Specialist spoke to us and said that Mom would benefit from a PEG feed and would feel much better. Starving is a dreadful thing. So Mom agreed and had the PEG fitted and came out of hospital about 9 days later. I was trained to use the PEG machine and also District Nurses came in daily to help with it. It wasn't difficult to do and her meds were all changed for liquid versions or pulverised and injected into the PEG tube. In one year, Mom had put on 3 stone and looked - and felt, so she told us - a lot healthier. The feed went on in the night. In the day then we didn't feel we had to push foods or anything onto her. She drank water with the aid of a one-way valve straw. If she felt good she had a yoghurt or pulped food. She had Xmas dinner with us for a couple of years running - I had to pulp each vegetable and the meat separately on the plate which looked funny but she managed to join in very well indeed. Her life took on a better quality when we weren't worried all the time about her aspirating on food or not eating for a couple of days. I know that isn't everyone's choice but I thought I'd mention it was the PEG seems to get a bad press.

    Good luck

    Jane

    xx

  • So sad to read this post. Geoff had a PEG fitted about 9 weeks ago and his whole personality has changed!

    Stick to your guns and fight for him not to have it if that his wish.

    Good luck x

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