Hi all I'm a regular reader but not a regular poster. I have hypersensitivity pneumonitis a lung condition and pulmonary fibrosis. I was in hospital in January with Pneumonia and whilst in the assessment area of A & E a doctor asked me if I have and DNR in place in sort of threw me. I said not and must have looked shocked as he scuttled off. But it's got me thinking I've read stuff of how with CPR they can break ribs, puncture lungs ect. I'm on lots of medication and had this condition 8 years. I'm also on oxygen 24/7 good days and bad days and apart from not being able to walk very far I'm pretty much the same as before. Has anyone else signed a DNR or been asked to?
DNR not sure what to do.: Hi all I'm a... - Lung Conditions C...
DNR not sure what to do.
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cazza34
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Hi cazza, Pete was asked about setting up a DNR when he was very ill with sepsis. It was done at 7am and I was angry because he was upset. I visited everyday so it should have been discussed when I was present. Nothing was set up in the end but I understand it’s pretty standard procedure. Don’t be pushed into signing something you don’t want to. Xxx
Hello thanks for sharing your experience. Thing is I'm just not sure my friend is a nurse and she says CPR can be brutal, it's a question I'll need to ponder I suppose. Terrible that they asked ur other half at 7am when he was on his own.
I agree with your friend. It’s a brutal procedure, involves administering drugs. I’ve got multiple illnesses, have got lung fibrosis don’t husband got upset what can I do. I said hold my hand and talk to me as I pass over xx
Thanks Oshgosh for ur reply. Part of me thinks ( with my illnesses) if I have a heart attack I think I would prefer to be DNR rather than a brutal CPR and wake up still ill.
If you have a heart attack - You may not need CPR.
Sometimes if you go into ventricular fibrillation, then Defibrillation would be used to try and get your heart rhythm back.
CPR can save lives and I would not be in a hurry to sign any DNR forms.
I have COPD/Angina/AF/Two leaky heart problems + Cancer.
No way would I sign DNR as long as there is a chance to live.
If you want to sign for DNR then fine but I would not be persuaded to do that.
Best wishes whatever you do.
I don`t think doctors actively try to persuade people, but in many cases it is better to allow people to die peacefully rather than go through the aggressive CPR treatment with tubes here, there and everywhere.
My GP, whilst discussing DNR status said with your lungs it probably won’t work. It made me laugh,I have a black sense of humour and know him well. I think given my poor health I would probably end up in a worse state than I am now.
Hi Cazza 34, I think that you have answered your own question already. It is entirely up to you. If you want to live you will not sign it. If as you say you don't think you want the pain and distress of CPR etc and still find yourself ill when you come round then I would stick with signing it. But although not needed, talking it through with your loved ones is something I would do, if even informing them of my decision. I have a long list of problems which have made my quality of life fairly dismal and I do get depressed but, personally I am not ready to sign any DNR! I wish you the very best and make the right decision for you.
yes, my husband and I have. You have a reasonable chance of surviving if your heart stops in hospital, but only something like a 5% chance outside, and of course there’s always the broken ribs etc. My dad had lung and kidney cancer and had a DNR in place. Unfortunately he had a heart attacks when leaving the pub with his friends. The ambulance that came did cpr and he came back but had another heart attack in hospital where they respected his wishes. I learned that you have to have separate instructions for the paramedics, but this is retained by the patient, which doesn’t seem a very good system.
Hi, I have a DNAR in place as my lungs are so shot at I wouldn't survive anyway unless put on a ventilator which I don't want. The GP who made the forn out for me said that she would inform the paramedic service.
I would hate to be put on a ventilator also - i am not bothered about CPR that much - However I may be given a choice soon - A life changing op, with a small percentage would live for 5 years - I have let it be known, try something else,anything. Difficult..
I haven't signed anything, but it says on all my notes that I do not wish for any treatment other than can be given on a normal hospital ward . xx
Yes that's a good idea , I've never heard of that b4. Thanks for ur reply Leo60
I was asked 31/2 yrs ago whn ill with covid,by my gp.i do want resuscitating - the risk of a possible broken rib, has to be weighed up against being given life x
All GP's were advised/instructed by the Government to ask this of their patients for financial reasons and to help free hospital beds. I had to write a silly rhyme about it naturally because that's what I do here. healthunlocked.com/asthmalu...
My reasoning is that with the current state the NHS is in the chances of them keeping me alive when I'm obviously past that stage are NIL. Whereas the chances of me not being given treatment solely because I've signed a DNR are immensely greater.
Yes I can absolutely see your reasoning there. Love your rhyme, I do read your rhymes whenever I pop into this site. It's a hard call but yes its better as someone earlier said, it's better to be alive with a broken rib, than not.
Love the poem, Don. xxx
Hi this needs to be fully discussed with your doctor and not something to be worried about like we were. Every time Paul was admitted we got the same question about DNR, we even found out on one visit he had a DNR placed on his file which we knew nothing about. In the end we had a meeting with top consultant and he told us that at the end of the day if you were to crash in hospital then it would be up to the doctors who were on shift at the time whether they tried CPR on you whether they thought it was in your best interests or not. So basically if you have DNR then you would never be resuscitated, but if you do not have one it does not guarantee that you will be. So if you are totally against it have a DNR in place otherwise don’t bother.
my dad has cryptogenic organising pneumonitis, AAA, copd,AF and diabetes. I spent a few hours in resus with him when he had sepsis/pneumonia and delirious. The dr said to me we won’t attemp resus if the situation occurs, I was worried and upset at the time but by lunchtime, iv antibiotics and steroids doing their thing dad was in a ward sitting up having roast chicken dinner. I told him what the dr said. He was horrified. We discussed it with the dr who read his notes stating DNAR was fully discussed with daughter who agreed to this decision and refused to remove it from the notes. I asked to see the consultant along with my dad, he didn’t like being questioned but agreed that should my dad go into a shockable rhythm they would attempt resuscitation but be aware that they can override any decision my dad has made. So dnr remains in his hospital notes but gp notes say for active resuscitation. It’s something that needs careful consideration at the time I guess. Take care 🦊xx
Hello Bingofox007 yes I've read this can be overridden by doctors. I'm going to need a big long think thanks for your input.
ps I work in a GP surgery and have been actively involved in chest compressions, it’s distressing enough without hearing a crack from the ribs as you try your best. 🦊x
Yes. It is distressing. As a retired nurse, I once felt a patient's ribs break as I performed CPR. He survived completely however.
Useful info here on DNR.
I think anyone with a chronic condition at some point faces the DNR dilemma. Whilst in some aspects I agree with what your friend the nurse says concerning CPR it is a very personal choice. It very much depends on how good you feel your quality of life is. From my own experience working in hospitals the question of DNR often falls on the relatives. Sadly it often makes a very difficult situation worse. I personally feel that you should make your wishes known to both your GP and your relatives. I do not want my wife or daughter to have to decide and I have discussed with them my wishes on what I want to happen in any given situation I have also informed my GP and consultant and my wishes are written in my notes. Obviously you cannot cover all circumstances but my family as enough information to say " he would or would not want that ".
I've had no experience of this but imagine if you had not thought about dying anytime soon that question could be very distressing. Hope you get through this and best wishes
Hi Gintyferguson it's probably because I'm not feeling great at the moment and am a lot more house bound than usual. I live with my husband and son and they both work full time, so unless I go out I'm on my own most of the day...this coupled with feeling rubbish just got me thinking if I should have something in place. It's hard when I think I should have instructions but not sure what they are 🙈
hi cazza34, like you I have hypersensitivity pneumonitis and lung fibrosis. Had it for about 6 years now.I used to administer CPR when I worked. I made the decision after much thought and discussion with my family that this was something I did not want, if ever I needed it. Hospital know my wishes, and it is written in POA documents as well. I did not know about the paramedic situation- must find out how to inform them! I had 2 heart attacks in 2020, on each occasion the medics commented on my DNR but said with my agreement they would treat me as any other patient who needed treatment, they would stop at any point if I needed CPR. I wish you well, take care x
Hello Blyth1 gosh I got a bit excited when I saw you had the same conditions, I rarely come across that. Do you know what caused the hypersensitivity pneumonitis? I was diagnosed in 2015. I'm now 63 had to give up my business in 2019. I just feel with my conditions and my lungs are only being kept partially working because of Mycophenolate, prednisolone and Nintedanib and of course oxygen, I'm not sure my lungs could even take CPR
Hi cazza34, sorry for the tardy reply I have been out all day. Nope no idea what caused my HP. I am sure I was down as a “ worried well woman” as all my X-rays I was sent for came back as negative. Only when I collapsed at home and was blue lighted in and had a scan that it was discovered. Trying to decide at the mo wether to go onto anti fibrotics. But so far everything I read is putting me off. Vomiting and diarrhoea daily doesn’t sound great.This year I got to celebrate my 70th birthday, didn’t think I would get to see that milestone!Like you I have never met anyone else with this condition . Take careX
Hi, my husband has the same condition as yourself and had 2 spells in hospital at the beginning of the year and was asked about DNR. He signed it as they explained the likely possibility of his ribs being broken and I suppose possibly puncturing his lungs. They gave us a copy and if ever he has the paramedics etc again we have to show them it. I keep it at the front of our diary so it’s at hand. He’s on all the medication that cazza34 is on although had to come off Nintenadib again for the side effects but is beginning again on 100mg twice a day to see opinion he tolerates that a bit better. He’s had it 7 years but from last Xmas there’s been a marked decline but he never complains.x
I'm 43 but been dignosed with stage 3 emphysema.. I'm not on oxygen yet as my lungs are still fighting for me even tho a 3rd has died.. I signed a DNR last year cuz quality of life is not worth shocking me bak for.. I'm happy.. If its my breathing they fight for me if my heart stops they step back an leave it. I pay people to change my bed an hoover, mop, dust.. Do garden.. Its never ending..... I'm sure they can only put a DNR without consent if u were really old and therefore bringing u back would be worse... Talk to your respotiriy consultant.. A DNR is a choice
A sobering post and responses. I hope they help you come to a decision.
A doctor can issue a DNR form alone without the patient's signature if they think the treatment will do more harm than good. I have never signed one but have one signed by my consultant. This applies to CPR only and would still allow medical intervention if possible. Mind you, it is quite alarming after being decanted from an ambulance to have someone appearing in your line of vision and asking if you have thought about DNR before the first needle has been stuck in.
Hello Tykelady, thanks for your reply, yes I'm.going to talk to my consultant and go from there. That's awful that someone mentions DNR before any treatment or you have even moved out of the ambulance my choice response would be lots of swear words! It was the attitude of a doctor at A & E who rushed to my assessment bed and asked me could I sign. I said no and he went away. But it got me thinking that I should take control of the situation.
Morning Cazza,,, How are you feeling this morning??
A friend of mine was in the hospital with sepsis and other chest problems and had a tracky fitted ,she was asked if she would consider DNR because she wouldnt have much quality of life after , and they told her of ribs being broken all complications etc, she asked to think about it, one of the other patients talked to her who was on the same ward and was asked the same question and although she felt preassured into agreeing, she said no ribs etc heal and the drs werent happy she chose to not sign a dnr. My friend is glad she listened to the woman and said no to dnr because she had 2 heart attacks,died and they brought her back she never substained broken ribs, she spent 2 more weeks in hospital and was discharged, yes shes got a few health problems still (not through sepsis) but as she told the consultant no matter how ill i am my children still want me around, and shes now became a grandmother again. My husband was asked infront of me the same thing when he was taken in because of his liver,fast heart rate and copd and alcohol dementia and he asked me what i thought and i said no to it, so he said no, but after i left they approached him again ,think they were hoping he would agree on DNR , he said no my wife said no so its a no. I was furious when he rang me upset. They are all too fast to push this on patience,
. I love what they done to my neices granddad, they took my niece and her mum and his wife aside and said we have been working on him for the last 10 mins and hes not responding, we will carry on for as long as it takes but we dont know his quailty of life if eh survives, his brain has been starved for too long of oyxegn would you like us to carry on or stop, and they all agreed that its not what he would want, the consultant respected their wishes and never pushed for dnr from him when he was taken in. Regardless of how the drs/consultant react when you say no, its your body, your life, dont feel preasured or guilty if you say no. I know its tough on them when they work on a body and the person doesnt survive but we as a country are so blessed to be able to have the equipment to have the chance of surving agaisnt the odds. Would be interesting how many who were given a second chance like my friend and the woman on the ward would say they regretted saying no to DNR because i bet there would be proberly none.
If your wondering why i said no to hubbys dnr . its because i weighed the good and bad about having DNR , and the bad were, his children, him not being around to see his first grandchild, his daughter not having him to give her away at her wedding , his mum and dad loosing a son, his friends loosing a friend, (and no i never considered myself and how i felt because it wasnt about me).There is no good because he could never change his mind..
He may not have a good quality of life because of being so ill, but hes still around, hes still fighting agaisnt odds , hes still around to talk to when his daughter rings because shes got good news or just needs to hear her dads voice.
I hope what ever you choose if asked again or anyone else that its your choice not because of preassure..
Sorry didnt mean for it to be long.
Take care.
Lyn..
I too have hypersensitivity pneumonitis, diagnosed 4 years ago but I’m pretty sure I’ve had it for 8 years now. My consultant referred me to our local hospice who have been fantastic. They got me a disabled parking badge but more importantly they prescribed low dose Oramorph which I take some days when things are difficult it does help no end.
They helped me fill in a Respect form which I keep with me, it’s been scanned and is on my GP notes as well as at the hospice. But primarily it is for paramedics.
I have recently filed a care plan too with the support of the hospice which states I would go hospital in to treat an infection only. I had a heart attack in 2019 (luckily it was before the pandemic) and had a stent fitted.
I was on an anti fibrotic drug for 6 month’s prescribed by the Royal Brompton. My local respiratory consultant referred me there last summer as this drug is only available through specialist lung centres.
I’ve lost at least 2 stone in weight on it, terrible diarrhoea and have stopped it, at least for now. It also lowered my mood.
We’re all different and as a disease progresses we often re evaluate things I believe.
My husband was initially horrified at the mention of getting involved with the hospice but being “ on their books” has given me some comfort and their palliative care philosophy is very different to a standard respiratory ward consultant.
Good luck, it sounds like you are, like me, trying to make difficult decisions you never really envisaged when younger.
Hello Tryphena134, thank you for your reply, I was also referred to my local hospice but I'm having a real mental block about that. I know they are great etc I think it's because my mother was a hospice nurse as I was growing up so I used to overhear stories. Anyway I also take Oramorph but in tablet form twice daily it suppresses cough. Were you on Nintedanib? I've been on this a year now, dont think it's working yes it's all about making difficult decisions.
Hi Hypersensitive Pneumonitis buddy.
The subject of DNR is always a difficult conversation. Pretty shit when we are unavoidably faced with our own mortality isn't it? Especially with HP. I spent 7 years working clinically in the NHS and have performed CPR more times than i can remember. To be honest yes it is brutal and it can be a lot more than a couple of potential broken ribs. It also isn't 100% successful. There is a difference between existing and living which i think something we all need to consider when making these decisions.
Drs never mention these things to be horrible, and its honestly a conversation they don't like to do. But they will because its important for us to know the wishes of the patient. I've had a patient who was actually otherwise fit and health, they were beyond pissed off that they had been given CPR (didn't have a dnr in place) said they were old, had a good life and although healthy, wanted some control over their death.
I weigh up my professional and personal brain, and still cant come to a decision. But i'm 33 and i'm not quite at the deterioration stage of HP where i need to decide. Part of me thinks id want to fight tooth and nail, but honestly when my time comes, i would rather go peacefully. It's a decision we can only make individually, but the kicker is we have to make it before it's needed, so we are clueless on what the circumstances may be or the outcome, Would be nice to have a crystal ball wouldn't it. It is a deeply personal choice.
I would advise you have the conversation with your GP or consultant/specialist nurses, and then take some time to decide. You can also discuss what else may be available to you that states your wishes. Honestly, i'd book in with a therapist to because mental housekeeping is important and this life/these decisions are rough as hell! Whatever you decide.
I don't think we talk about death enough, it's then overwhelming, difficult and terrifying. My consultants have said from the start that i need to think and decide what i want my life to look like. To make the most of it because of this disease. But even at 33, i think it's important to consider what i want my death to look like also. Because we don't talk about these things enough, its a slap in the face when things like DNR arrive on your plate. I think it's difficult to make a decision anyway, but right now you need some conversations to navigate the lay of the land better and then some time to think. So you can make an informed decision.
With resus medical staff will always throw 100% into it, they will go to bat against death for you, like you're their own. But they will call it if they need to. Dnr is you deciding if you want that match and what can happen after.
Sending you a huge hug at what i know is a complete mindf**k. DM me if you need or want to. I've found great comfort, support and joy in finding someone down the road with HP and being able to chat about everything and anything honestly.
Thinking of you xxx
Hi Cazza, I’ve signed a DNR. I don’t want brought back maybe with broken ribs imagine the coughing with broken ribs it’s bad enough now.I’ve the same as you only had it two years but progressive they’ve given me 12 months possibly 2 years. I just don’t want to be resuscitated to be in agony. Good luck with you decision.
Thank you so much for your reply, yes I completely understand where your coming from with your decision.
My partner has multiple health problems, he's had 2 heart attacks, 2 strokes, has raging diabetes that he finds difficult to control and he's got kidney failure so has dialysis 3 times a week. He has no quality of life and is in constant pain . He's 74 next month. In his case he felt that it would be pointless to attempt resuscitation and willingly signed a DNR. He has Patient Transport to dialysis and one driver refused to take him until I found his DNR form. He was admitted to hospital a few days ago and the Ambulance Crew who had been seeing to him in the ambulance, came back and asked for his DNR form. Not had that happen before. Obviously, sad as it is, I respect his decision. He has always said that if it came about that he had to go in a Nursing Home he would rather give himself an overdose of insulin.
I’ve told my dad I’d put a pillow over his face rather than see him in a nursing home, he said he’d sign a form to agree to that! 🦊x
No no no!I’ve not really absorbed all the thoughtful posts. But my gut feeling is no DNR. The state of the NHS today means any idle uncaring ones on duty will just let us slip off..we are worth way more than that, ❤️
Hello pattison of course we are all worth more than that, I was thinking about quality of life versus resuscitation. Lots to think about.
Yes I do realise. Some of the posts are really thought provoking. I’m just tetchy about NHS right now. I’ve just had a cataract op that has gone completely wrong and left my vision worse than before. My experience with the Eye Clinic was just horrific! Yes I still think maybe what Bingofox says below is hopefully correct. Take care x
I think the idle and uncaring ones are few and far between, it’s generally a nature to nurture environment but I know what you’re saying. It really is thought provoking subject 🦊x
If a DNAR has been set up, you can have it removed. My wife was issued one and the first she knew, was when she was discharged from hospital and read what she thought was the discharge notes, and in utter horror, asked me to read it through.
A nurse had apparently discussed it with her and signed it on her behalf. My wife is profoundly deaf, and even with hearing aids can’t make a lot of sense of what’s being posed to her, especially when she’s stressed. That nurse absolutely knew that, yet still the DNAR was issued. This was totally against her wishes, and after complaint to PALS, it was swiftly rescinded, with a serious apology. I understand that she’s quite frail, but we don’t want a total refusal to attempt resuscitation, without taking all the risks into account and I’m sure they will attempt this if the risk doesn’t outweigh the result. I also understand that it’s quite likely they won’t be able to attempt to resuscitate her without danger, but to know they’re not even going to consider it, as a result of a rash decision by an over zealous nurse, is like being told your time is up!!
Have it removed! They can’t forcibly impose a DNAR on anyone unless the risk is obviously too dangerous, and even then, it’s not a written decision to refuse!
Graham C
Hi cazza34 I am another who reads and doesn't post but I wanted to tell you I also have Fibrotic hypersensitivity pneumonitis. Pseudomonas colonisation. And non-tuberculous mycobacteria pulmonary disease. You are ten years younger than me but I have had this for 6years. I am on oxygen 24/7 and 15m of pred a day. I do not want to be resuscitated. Although I am quite content to puff along with the help of my daughters If my time comes I am quite happy to go Take ca
Hello Dorcas47 always good to chat to people with same condition. Are you on nintedanib and Mycophenolate? They keep trying to take me to 10mg of prednisolone but my body is much happier at 15mg. It's the invasive procedure of resuscitation that freaks me out, also the risks in broken ribs punctured lungs etc
I am not on either of these drugs and have never seen them mentioned before, but have just googled them, my body is happy with 15mg of pred and they have agreed to let me stay on it. I am on fostair 4 puffs a day carbocisteine ( 6 a day). I have re-occuring chest infection and with each one I get more breathless. My oxygen is on 5 when moving and number two when sitting down, at night I am able to reach 90% on 1 and a half which I find strange. I do nod off a lot between jobs, by jobs I mean a shower and breakfast, lunch and looking after my dog. Each of us has a different type of this awful disease but it is good to compare.
Hallo. My husband was in hospital on Bank Holiday Monday as covid had made his leg and arm muscles too weak to use. He was in an isolation room and someone (?) put their head round the door in the early hours of the morning and just asked him - Are you DNR or not? No other information given, He had he did NOT want DNR. Hardly a considered discussion
That's bad practise and isawful.hope he's recovering x
Yes thanks, he was discharged after 24 hours. I had to refuse to take him home before that as altho the physio nurse said he was ok to go home, she had to admit that she hadn't seen him walk. I explained there were 12 steps to get upstairs to the bedroom and toilet and if he couldn't walk he couldn't come home. Eventually we were sent home in hospital transport and they helped my husband upstairs. They fumigated the ambulance after. He eventually was strong enough to come downdstairs on Friday. Not impressed with the hospital. We didn't know he had Covid till the hospital tested him, the 1st isolation room we were put in had no nurse call bell and I had to request a change of room or bell pull as I couldn't leave him alone with no means of summoning help. He was eventually moved about 5 hours later so I could go home about 10 pm
Hello Cazza,
It is a really good topic to raise, consider and discuss.
As a retired nurse and first aid trainer personally I would say no.
If you have a cardiac arrest in the street then CPR is a distinct possibility + defibrillation ( unless you have DNR tattooed across your chest ) It is all brutal. CPR done effectively ribs will definitely be fractured.
CPR in hospital can be equally as brutal, plus intubation. It isn’t for everyone although a good physician could do a better job of discussing it with the patient so that informed choice can be made.
I have made aLasting Power of Attorney and an advanced care plan. No DNR yet, but feel it is sort of covered by the advanced care plan.
You might find this web site helpful ? When I leave, then where possible I would like to leave with dignity, free from pain and in peace
Go well.
Pauline
It is something you should discuss with your GP that knows you well. There are separate pieces, in emergent situations.
That being said, when you arrive at the hospital or urgent care, they ask so they know ahead of time. They need the paperwork filled out by your doctor, if you decline in their waiting room. They aren't always looking to have "that discussion".
Its called respect. Yes, I've been asked to refuse resuscitation because my lungs won't react. One month, I was to be resuscitated . The next told not to by the consultant so its highest level only not to go to critical care resuscitation. I don't know I don't think it's respect or should be called respect , I would rather have the best done like kept alive on machine until new lungs come. Obviously can not have that theres a panel and waiting list . I also see nurses healthcare read it and ignore me in hospital when they can see I clearly can not breath. It's wrong there's something wrong with it. I understand with old people they had a long life and it will hurt my dad insisted on resuscitation it never worked but gave us a chance to say goodbye gave us 30 mins to get up the hospital. It needs changing and there needs to be more detail if we answer no not resuscitation because I also don't want to be left in a chair bed ignored that's not respect. I want my family to see me comfortable clean in no pain suffering and maybe a chance to say goodbye. I also don't want to be left dirty lying in my own stuff if you get what I mean. If any hospital people high up or parliament people please change it. I am in hospital now , I hate that respect form its not right. Its like it's only for making it easier for the doctors not the patient.
Hi Cazza. On average 30% of patients receiving CPR will end up with a broken rib or sternum. The only experience I had with a broken rib is when mine was removed and the replaced during my lung transplant. It was definitely painful and the pain lingered for a very long time.
I think the decision to either to sign a DNR or not is quite complicated. I can only speak for myself when I say it would depend on my physical condition. If Iwas weak and had serious complications , I would garner from that even if my heart started pumping again my recovery would be very slow or not at all. I would definitely place quality of life before quantity. If I had a strong chance of bouncing back I wouldn't sign the DNR.
I had a friend who decided not to go down the lung transplant route. He survived for six years after his initial diagnosis. In later years he started to have more and more complications, ending up in hospital often. He instructed his family not to resuscitate as he did not want to be on a ventilator. During an episode his family went against his wishes and had him kept alive. He survived another year before finally passing away. He told me he didn't understand why they didn't follow his wishes. I think he suffered so much during that final year. It is important to make absolutely clear to next of kin our wishes hopefully they will advocate for us when we can't. Although , in his case they probably were so distraught they just wanted him back without thinking about the consequences. These are never easy decisions to make.
Best wishes to you.
Cas xx 🙋♀️🐕
Hello. I was asked couple of years ago about a DNR. I have severe pulmonary hypertension plus heart disease. I was told if I had cardiac arrest CPR would result in me being in itu on a ventilator for 3 weeks. Their words like a cabbage. Then I would die anyhow. The respect form comes in a bright purple folder which ambulance people know to spot. Hospital and GP should already know your wishes. I’ve got one in place, don’t want to put my children through anymore upset by hanging on in itu.
I understand there is another option to DNR.
'A ReSPECT form is filled out by you and a healthcare worker together. The form asks about what is important to you and the kinds of treatments you would want to have in an emergency. Your answers will help your healthcare worker explain which treatments could help you if you became suddenly ill.' (Taken from the internet).
A friend was refused an op a couple of years ago because hospital staff erroneously told her she MUST have a ReSPECT form even though she already has a DNR. In order to support her, I read up about it.
The advantage (as I see it) is that you, the patient, hold a copy which can be used anywhere in the UK whereas a DNR is only valid within the Trust where it was signed. Therefore, when you are being picked up in an ambulance or treated at the scene, the personel involved can be shown your ReSPECT form and should abide by it as far as possible. (If you have made an inappropriate choice e.g. asking to be treated at a particular hospital which cannot offer the care you need) they can (I believe) override your wishes, but should make every effort to comply with them where possible.
I understand that whilst the DNR is a legal document and must be followed, the ReSPECT form is an expression of your wishes which can be overruled in some circumstances, such as the previous example.
You may wish to look into this further. There is plenty to read on the internet.
Regarding signing a DNR, I think it should only be done if you are absolutely certain that you do not want to be ressuscitated. Although it can be withdrawn by the patient, it seems to me to be a very final thing that you may not, in the end, live to regret.
xx Moy
PS, My personal view is that if I'm in the final stages of an incurable disease and am suffocating or in intolerable pain, I would not wish to be ressuscitated. However, if I am still enjoying a reasonable quality of life but have a heart attack or other coronary event, I would wish to be ressuscitated, broken ribs and all! We're all different. The choice must be your own. xx
Hello, I hope today is a good day.
I have had a DNR in place for several years but when I fell very ill over New Year 2020 I was resuscitated in A & E anyway. They presumably don’t have time to look at notes in that department. Similarly last year my kidneys stopped working and it was thought that all my organs were packing up. But no! Within 24 hours my kidneys started working after excellent care from my nurse and I was sent home within a few days.
I agree that it is a shock when that question is asked, I have a pack of medication at home in case I suddenly take a turn for the worse and it will ease my passing, that was also a shock and personally it made me worried and very sad but I’m still here.
As long as your affairs are in order I would not sign a DNR again, I would let nature take is course. You never know you might be resuscitated and live to see and enjoy another day.
Best wishes
Jj.
Hi Jean RitaSo sorry to hear what you've been going through too.
I am shocked to hear you have medication at home to help ease your passing, if you get bad 😢
I have never heard of this , I thought a nurse or doctor would only be allowed to administer this type of medication .
I hope you don't think I'm being cheeky, can I ask what type of medication you have , is it morphine ?
So sorry to hear your in this terrible position.
You take care !
This letter I wrote to my Gp sums up how I felt !
9th. November 2022
Dear Dr.
The recent incident regarding the End of Life conversation had a terrible effect on me and I feel that you need to know just how badly it upset me.
This is not a complaint, I don’t want to shoot anyone but I would hope that what I have written might make some changes to how it is done in future.
I have already told you how much I respect you so I hope this is received with my best intentions.
“There is nothing more sensitive than the subject of death. No matter how we spin it and know it is inevitable it is still something we avoid.
The medics are constantly thinking of new ways to cope with various aspects of our demise, to make things easier for the patients and themselves but it could / should be refined from a patients point of view.
I am a patient, I am in my 70’s and have several ailments, none too serious but they have landed me in hospital.
The last visit resulted in my kidneys failing which was serious and could result in dialysis.
With that in mind my doctor rang me and I was expecting her to ask how I was now at home as I had left hospital early. But there was more, much more . I was asked to consider how I would want to spend my last weeks or days; at home, in a hospice, in hospital, somewhere else.
I was also told that to make sure everything that might be needed to smooth my passing a package of drugs would be made up and kept somewhere in the home so that whoever attended me would have what they needed. Maybe an anti sickness drug. Something to help with breathing. Pain relief. All to insure that I did not suffer.
Great idea I thought, I would sign up to that.
It all seemed reasonable but I found myself becoming more & more agitated & upset bearing in mind that I am a depressive and have been all my life. I was still very weak, traumatised by almost dying and having the family come to say their goodbyes (for the second time!) that I totally lost control and my mind was thinking up the worst scenarios and what if I didn’t agree, could I change my mind or would I be forced to follow what felt like an execution. Yes, ridiculous but not in my state of mind.
With it virtually impossible to contact my doctor I rang the mental health unit who said they would ring the GP only to be told to phone at 8a.m. the next morning.
All I could do was take a concoction of pills which I knew would knock me out and stop me from doing anything stupid.
The following day I took tranquillisers and rang at 8 and after 50+ minutes got through to a receptionist who said I could not speak to my GP but a doctor would ring back. As it happened, she was the duty doctor and I managed to express my worries and we went through it all again.
This matter shook me rigid. Had I been on my own I might well have harmed myself.
The whole matter needs a more sensitive approach and not be done over the phone. Death is common place to a doctor but not to me.”
Best Regards
JeanRita
PS : Now, 10 months later I am feeling much better, not sure why except I am no longer fixated on death or dying. To prove it I drove our car for the first time in two years and enjoyed it.
No one was hurt in that experiment.🤣🤣🤣
No wonder it affected you the way it did Jeanrita, I think "a few" health professionals forget how advice like that would effect you emotionally, you certainly don't sound like your at the stage of palliative care.I'm so glad to hear you have put it behind you and we're back out driving 👍
Best wishes to you, take care
What a shock being asked that when you are not expecting it, some doctors can be very insensitive. I've noticed in the last few year's lots of booklets on DNR in the visitor room of the Respiratory ward I am frequently in for IV's ( it's as if they are trying to promote it 😬 ).
Last year my mum who had heart failure was rushed to hospital, the Dr in the resus unit "told me" they would not resuscitate if the worse happened, sadly my mum passed away, I've had a terrible feeling of guilt thinking should I have disagreed with him and fought for this , she was 82 yrs old , I took her age and her quality of life into consideration at the time.
Cassa34, you know your own body, and how your quality of life is, only you can make the decision .
Don't rush into anything, discuss it with your loved ones , as someone else mentioned, could it be our government playing god with people's lives just to save money 😠
Sending hugs your way
I also have this condition and like you have oxygen and can't walk far. But I have not signed a DNR and don't want to, there's still lots to enjoy in life.
Hi Cazza34,Just wanted to rely to your post, but before I do, want to give you a reassuring and heartfelt hug and to say I've been where you are.
Although, everyone different, this is my experience.
Four years ago while in hospital my Consultant and his many students walked around the small ward asking everyone in turn if they wanted to be resuscitated if there become a need.
At 54 I never envisaged I would sign one, but on consideration and talking to the Dr ,I do have a DNR in place.
I've a list of problems, as long as my arm, but look, I'm told (people tell me all the time) really well. I've a liver complaint and kidneys are not so good, lung cancer and bilateral heart failure with pulmonary hypertension. Oh and chronic AF. I can't do much without symptoms or ending up in AE.
Now I've signed that form , signed because I have low quality of life, I feel confident to live my best life. I'm not afraid anymore.
I've put everything in place and paid for my funeral.
I go out and feel reassured that I'm prepared if anything does happen.
I spend my life doing what I can and enjoying my time rather than on what I can't do ( or the fear if I do)
Some in my family are naturally upset with me and whatever I say they can't find common ground with me - see from my side.
Others, support and encourage me to enjoy my life and do (what I can do)as much as possible in my limitations.
It's not to be taken lightly, you need to think t through, discuss this with your GP, family and other medical professionals about how you feel and what you want.
The form is simple and filled out by a medical practitioner who will ask you to sign it - they give a reason for your decision.
The reason I decided to fill in mine was because I can't walk far and very dependent on others and feel I have low quality of life.
Now I've done this, I have got a mobility scooter that has opened up some doors, so life feels better.
My experience obviously is different from yours and so will be your health journey.
My life it's not brilliant , but far better than it was before I utterly this in place and as I decline I know I'm prepared. My peace of mind.
You're very brave for discussing, as I know how you feel.
It's a hard topic to approach and discuss but one you should explain to those close to you to save family and friends upset later.
I'm not sure if this will help, but gives you insight how it's affected me.
6-12 months ago I’d had signed my life away, today I’m loving life & would not sign - problem is, when it comes to that crux of save me or don’t save me you may not be in a position to change your mind as events take over. Think very seriously - as someone said in a reply - “how much do you want to live? You are accepting treatment now so you want to live now - only you can know what to do in your case - just because someone says it’s brutal the decision is yours - talk to your loved ones who know you. That comment made by one of, “ just hold my hand and talk to me as I pass over” - how strong is that and so touching. Virtual 🤗 for you
My mum had dnr forms that she filled in a couple of years before she died. She gave one to her gp, one to her consultant in the hospital, she gave one to me and had one in her handbag that she took everywhere. One of her friends had a stroke and ended in up in bed like a vegetable for the rest of her life which I think was one of the reasons she had these, plus she had alot of health problems. It is a personal decision and one that must be right for you x
Am sorry you were treated like that.There seems to be very little in between having a DNR and medics being over zealous in their resuscitation activities.
As an X nurse I like many others have seen resus attempts going on for multiple attempts together with no or minimal resus effort done.
I have made my wishes known to my family should I require resuscitation again.
But it's something that's deeply personal for you and your loved ones.
What do you want?
Have a think and a chat with your medical team.
If you decided one thing then changed your mind that's your perogative.
I wish you well and am sure you will make the decision that's right for you.
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