copd end case should i let doctors let my father die by withdrawing his by pack mask they have wanted to do that for the last year when ill

y father is end case copd and has been for the last 2 years and has been in hospital 5 times in that period 12 months ago he went into hospital with his oxygen and lungs bad he was delerious and was not good he had been the same 6 months before that time they gave him bi pack mask and 2 days later he was fine but 12 moths ago they gave him a antiquated bi pack mask which resembled a baseball glove it was awful ill fitting and they are very powerful that blew in his eyes and he fought the staff and kept pulling it off he did not know what he was doing the staff had never seen this old type mask before they rang me at midnight to go and get him to put it back on which i did i complained about the mask the next day and asked if they would change it for a modern proper fitting mask i was told he had to keep the mask he was given he did for 3 more days then he was taken off it the modern masks do exactly the same job its not that this mask was special just antiquated he recovered and came home a month later i took my dad for his gas out of wrist check which he goes for twice a year he had complained of some pains in his chest i told the nurse who decided to put him on assesment ward and after the usual question and procedures a consultant came asked my dad what was his problem my dad asked me to explain as he had told previous staff but consultant said no you tell me and i will explain later so dad explained and doctor said good you seem coherent and you explained well so what do you want me to do he said dad said same as you do for other people like me the copnsultant said we dont have other people here like you your condition is end case my dad then did his john wayne bit he loves westerns and said oh good we are talking straight then are we doc but i was irritated by him saying no body else was like him in hospital thatwas a lie i told the consultant he was begining to irritate me and i said when my dad is bad the by pack mask usualy sorts him out the consultant then said to my father o h those masks are terrible they blow in your eyes and face nobody likes them do you want a mask again my dad said no and i lost my temper then i said you realise my dad is end case and you want his support of the mask with drawn i said we have said no to resusitation and no to a permanent pipe into his lungs but what about my dads quality of life he has a bet every day he watches his tv reads the papers he has the crack with all of his carers he has a drop of whisky every night i know he is poorly but you are out of order he stayed in hospital 2 days then came home then he got appointment for chest clinic then he got another for 2 days later in same clinic i was told for 2 different things by this time i had complained to the hospital about the consultant and got a reply with him lying and denying every thing but the letter said that another doctor had a word with him about how to do end of life talks iwas not happy with the lies are the idea for end of life talks but i did not follow it up how ever the second appointment i mentioned turned out to be with the doctor who had taken the first doc to task about end of life talk this was a lady and the appoint ment was to talk to my dad about the bipack mask again and here she was asking him again to not use the bipack mask i felt this was now becoming a pressured point my dad said his life was not the best but he still enjoys some of it i lost my temper again with this doctor and it was like talking to a tricky lawyer are a politician but both myself and my dad made it clear that he are i would let them know when he had had enough he was in hospital again a few months later and they used the mask he came home fine after a week but i must point out my dad hates going in there and prior to this he was bad for a while with a chest in fection his doctor and 3 other doctors 3 nurses failed to send him to hospital my sister came and was on phone for a hour at the end of a week to get another doctor then we had to beg him to take hiom to hospital he did and he was put straight int resuss he was that bad but with the mask he was up in 2 days and out in a week now the same thing has happenned again his doctor gave hin anti biotics then left him i got the virtual ward nurses in (THEY ARE IN PLACE OF COMMUNITY MATRONS)nurse came his oxygen was at 74 she said it was not good but she would come back later to see if it was better that night my brother went to my dads and they had not come rang them they said they were busy with another patient but the nurse came 5 mins later and said he is end case and seems ok and left my dad and brother with the words we might come tomorrow but its up to yuo thats my brother to keep an eye on him the next day my brother was about to ring ambulance and in walked the nurse and took over she took his oxygen that was now 63 and got on the phone for second oppinion told brother the other oppinion would be there in half anhour my brother sais im not wating and rang ambulance all the nurse kept saying was he is end case at hospital he went into resuss and the staff there were horrified that the doctor and the special nurses had delayed for a week before geting him there they got him back with us sent him on a ward on a pack mask and after 2 days he was able to sit up in bed and talk to us but his oxygen levals were still not good and he still has a in fection in his chest his acids are ok his carb/oxide is 11.2 his oxygen is 62 so they were trying him off and on the pac mask till today when the lady doctor persuaded my dad not to have pack mask again i was furious he will never come out without th e pac mask treatment itold his nurse iwas not happy with this as it was a death centence they got doctor to come to my dads bed my dad said i will have mask when im bad but im ok i told my dad he was not ok and he neede the mask the lady doctor same one as earlier was saying well it may make you better but only till the next time your lungs fail then you will be back my dad said i will have it the doc said you dont like it though and i said who the hell does like it the mask is not nice but its my dads and other people in that wards life support and this as gone on for 12 months and you want him off your hands and istill feel my dad has some quality of life you dont want him coming in here taking beds up when he is end case this realy upset my dad allthis lady was telling my dad was the negatives to get him to refuse the mask and my head is all over the place im hoping i have done the right thing i feel i have but i know he is end case and maybe this might be the end i dont know but they wanted him to go 12 months ago i realy do feel sick with it all god knows as some of you know i suffer with the same discease copd this is so hard sorry this is so long but i wanted people to know all of it and not half a tale

30 Replies

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  • so truly sorry for your dads suffering but you are suffering too.keep fighting for your dads rights,maybe one day we "lung diseased" people will be treated with dignity.good luck in your fight.

  • thanksFishtail i will do my best

  • Bobless, this is appalling. Can you talk to your dad and agree between you what he does and does not want when he is taken ill? You can then set out in writing his preferred priorities and give a copy to your GP and one to his consulltant so that it can be recorded in his medical notes. He may want to grant you a lasting power of attorney (LPA) so that you can legally speak for him and make decisions for him when he is unable to make them for himself. I know some patients with a lung disease have been able to access a Macmillan nurse (0808 808 00 00) and they may be able to offer more advice. Please ring the BLF helpline on 03000 030 555 (Mon-Fri from 10am to 6pm) as I am sure they will also offer help and support. Good luck.

  • hi aunt mary my dad hates the mask as do all patients but with them in hospital doing there damdest to get him to refuse it rather than explaining why he needs it my dad thinks that because he is sat up in bed rather than in a virtual comer hethinks he is ok but he is not and he needs the mask to be on to put him right and as for his GP as soon as my dad has an in fection with end case copd he should be in hospital not left at home till he is at deaths door i dispair at what to do but i will ring BLF Aunt Mary thanks

  • I truly hope things improve for you and your dad. x

  • you and me both thanks Aunt Mary

  • oh bobless, this is indeed very horrid, thank god dad has you to fight his corner, we are all terminal, no one gets out of life alive, it sounds like dad is enjoying his life, reading the papers, tv, having a bet, having a wee scotch, this is not a bad way tobe, I know people who are depressed that cannot enjoy their lives this way, this must be so stressful for you, please get all the support and help you can, dad is indeed lucky to have you, and he sounds great, thinking of you xxx medow

  • thanks Meadow he is a character

  • Omg! this left me with tears in my eyes. I'm so sorry you and your dad are having to go through this. The hospital seems to be doing its best to make it even worse.

    I do agree though that the decision has to be your dads. If he wants to carry on then no one and no medical professional should decide for him.

    I agree with the suggestion that all this is put in writing so no one can dispute it.

    I will be thinking of you love. Keep strong.

    Bev xx

  • thanks hypercat trouble is they are messing with a vunerable man i know its my dad but when he is well he is as sharp as a button its not just the hospital its his nurses and gp as well if dad gets out of there i will speak to him about geting it in writing or to give me some authority

  • Hello Bobless, reading your story has brought back many memories of my Mum and what happened to her, it was back in '94 and in the days where 'end stage' was a term that didn't exist or was never mentioned, is there any need or point? my Mum would have been upset by this term,who came up with it I wonder,someone in good health probably, why can't they come up with something better,or maybe we could? My Mum enjoyed life to the full,I bet she would have got on great with your Dad, she loved a drink or two in the evening, she had a 'pretend' fag, loved doing the crossword, she could tell you jokes all day and night and she would have told your Dads Dr. to get off his horse and milk it like John Wayne would have!

    I was at work the second time she went into hospital ( she realy didn't like that place!) I was at sea working on the ferries and when I got to the ICU they were telling me her heart had stopped and they didn't know if she was brain damaged or not, they asked me if they should turn off the ventillator, and they were talking as if she was in another room! I took one look into her eyes and knew she was okay and said so, and ,we had her with us for another year! At first she was totaly confused,in the hospital she thought she was in an airoplane,she was going on about hellfire and brimstone and laughing and she could see people above her,it was scary!within a couple of months she was doing the crossword again at home and enjoying life. This illness had her perched on the end of her chair at times and now she is at peace with my Brothers, I just hope I'm as brave as she was,when this Emph gets a strangle hold on me ,hope its as easy as jumping on a plane and flying right out of here! ( instead of 'end stage' can we have ' The happy hour is coming' and I'm glad she never had to put up with what your Dad has,it is disgraceful! Please give him a gentle hug from me and has he seen 'Cowboys and Aliens' yet? love,Carol x ;)

  • hi hufferpuffer it sounds like your mum was a character just like dad . I know its called end case and my feeling is his gp his community nurses and the hospital are doing very little to help him other than to help him die this morning i feel sick to my stomach and deflated i realy am not ready for another day of this but i need to find some fight in me its all sickening i will get there im sure thanks Carol i will give him your hug xx

  • Hi firstly dnt apologise u have nothing to apologise for, i have copd, dianoised in 2008, but also my mum died from copd at the age of 61 in 2007, i would have done anything to hold on to my mum and i miss her every day, she died at home without oxyegen, she still smoked, and it wasnt until i went on short break away in a mobile home i realised how bad she was, she couldnt sleep up all night and i stayed up with her, she was on so much medication it took up a whole page of A4 paper, and those nights i spent with her i realised she wanted to go, not to leave her family but to be out of the pain and distress. She hated hospitals and wldnt stay in them when she was bad, and something that really anoyned my younger brother was that she had told the hospital no resuss! He didnt understand because he hadnt seen what i had, and although i didnt like it i had to respect her wishes,

    Have you been able to have this discussion with your dad as to what he wants? it sounds like he has pleasure from things in life still, in which case he may want to go on, but its knowing if he is doing this for his family or himself, however hard u need to have this conversation hun.

    thinking of you and sending you and your family my best wishes debs xx

  • thanks debs please read under i left as comment but ment as reply xx

  • thanks Debs its very hard my dad is on oxygen at home and like all of us he has good and bad days sometimes he is down and tired others he is full of fun usualy winding everybody up when he is ill he is not getting good care from gp and nurses if my dad had been taken to hospital 2 weeks ago he would never have got so bad as to need the mask i am finding this very hard but its beyond words for me to explain doctors nurses and consultants trying to finish his life because he is end case thanks for your wishes debs they are appreciated xx

  • thank u bobless, please feel free to contact me anytime u want to talk, quite honestly the drs and nurses need a kick up backside, maybe mentioning the director or whatever they are called of the hospital will help, or here we have pals, service that can intervene on your behalf when proper care isnt given, you really dnt need that on top of everything else i know, sometimes the fighting for things can in odd way help you through it, i done it with my mum now im doing it for myself! take care hun xx

  • thanks Debs sounds like you and me are following simular paths in life we will get there take care and stay positive like you are at moment thanks again Bob xx

  • You too bob, hope we can help eachother love and hugs to you all xx

  • hi bobless im sitting here crying at the moment reading your blog about your dad brings back so many bad memories we went throu the exact same thing with me mum endless trips to hospital 2 day waits to get her to right ward when we told them what they should do and what had been done on previous vists i no they nursing is a caring profesion but my experiance with mum dosent even come close to anyone caring the aloof attitude of the doctors is frighting it got so bad at one point me and my sister were going to kidnapp mum because of the lack of treatment and care she wasnt recieving anyway by the xmas of 2010 mum had had enough to be honest so we pleaded with them to let us bring her home to die couldnt have lived with myself if he would have passed away in there lucky enough they let us bring her home on xmas eve and mum pased away peacefully on boxing day and this year will be our 3rd without her i wouldnt dream of telling you what to do but you no your dad best and im sure you will do whats best for him thinking of you in whatever you decide

  • Hi baxter you have been through it im sorry for bringing memories its so horrible and wrong i do not recognise the health system anymore i dispair at it i feel i do not recognise our country anymore i am glad you got your mum home for the peace and respect although it must have been a horrific time . Dads not at that point yet although if it was upto some people he would be if he was i would do exactly the same and bring him home i have just spoke to BLF and they have given me some good advise on moving forwards with my dad thanks for your support Baxter

  • hi

    this has left a real lump in my throat , you have done the right thing , fighting for your dads rights as a human being

    I have been told that my husband has all the meds he can have so its now about the quality of his life, he watches tv and has a whiskey at night hardly ever goes out, but he is not ready to die, your dad certianly sounds to me like he isnt either

    life is a precious gift and we need to hang on to it as long as we can

    you need to write to the hospital authority to complain about the attitutude towards both you and your dad including his needs its desgusting the way you have been treated

    and i am so so sorry for you both

    keep fighting for him , he needs you on his side

    xxxx

  • Hi Mojo50 your husband sounds to have a simular life to my dad its not best but its along way off the worst . I have been in touch with BLF today and got some good advice off them they are good to talk to i cant face anymore to day but my brother and sister are going to visit dad i need time to recouperate im totaly sick to my stomach god knows how dad feels after all yesterdays confrontations at his bed but thanks Mojo50 i will get it sorted xxxx

  • I have been out all day but am still thinking about you Bobless. I'm glad the BLF call went well. Rest today. Good luck. x

  • hi michael thats brilliant that your mate gave you thalidomide and its helping you keep infections at bay i guess behind every cloud is a silver lining just not seeing it at the moment i have spoke to BLF today they are as upset at his treatment as i am but they have given me some sound advise on how to go forward . Thanks for your support Michael i loved reading how positive you are i need a dose of that at the moment .

  • Hi bobless

    I am sure all who have been through similar can empathise with you sweet.

    Your Dad sounds such a wonderful character with some quality to his life. You are so right to fight your Dad's corner - even though it's draining, it is a priviledge, and you have nothing to reproach yourself for.

    Very best wishes to you and your Dad.

    With love XXX

  • aw thanks cofdrop xx

  • So sorry you`re facing all this heartache. Do you remember the days when consultants would see the family privately to discuss the relative and not give awful news infront of the patient? My husband was told when he was on his own in a full ward that the cancer had spread to his liver, lungs and bones and that there was nothing they could do. Needless to say I raised hell about that. I have emphysema and there is no-one to fight for me so do whatever you feel best because it`s done out of love. God bless you, your Dad and all your family mskpjb (Sheila )

  • thanks Sheila and you to keep your chin up because your worth it you are a star look after yourself take care Bob x

  • hi Bobless sorry to hear about the lack; of consideration for the feelings of your father and yourself,, there should not be labels for people, we are people not just objects. Anyway hope things improve for you both , Wellman2

  • thanks wellman i totaly agree

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