I found out a few hours ago there was a DNR order for me. At no time have I ever requested for or been asked about this! To say that I am reeling would be an understatement. My concern is where this came from and where it might be stored. As different parts of the NHS have had my medical history wrong and posted appointments to the wrong address I am deeply disturbed by this.
Has anybody else had this and any thoughts were rogue information may be held?
That is just shocking Michael and I'm really sorry that you've had this put against you?
Can I ask how you found out? How long it's been there and can you get it removed?
All I know so far is that it was there. It came when booking patient transport and I was asked to confirm that I had a DNR in place. They can't tell me more but I confirmed there was not. Not the sort of dog poo I need right now?
What a terrible shock for you & definitely not something you need right now. I'm wondering if it's on the wrong patients notes as there is nothing in your medical history to explain why it's there.
Would be interested to know the full story once you've found out, it's very worrying..
Did they state that you had a DNR in place and for you to confirm that was correct? Or did they ask 'if' you had a DNR in place?
Hi Michael. That's very worrying. Where did you find that information and where should we look to check this for ourselves? Many thanks, John
It came up when booking patient transport. I would suggest asking your GP first.
That must have been a shock!
You can ask for a copy of the DNR order under the Data Protection Act/ General data protection regulations.
I would start with patient transport. Then
GP, Residential care home and hospital where you had your surgery.
Good advice and link but I will say I know of several people up here in NE Scotland who asked their GP only to hear a less than forthcoming answer. I know mine mumbled, looked away, mumbled some more...it took strenuously worded letters from my consultants to get a clear answer from the GP.
Consultants seem to be a bit more responsive, asking his consultant is how my 54yo neighbour with Muscular Dystrophy found out he's had a DNR he knew nothing about since the beginning of the pandemic.
I have several friends in their late 60s and up with conditions ranging from 'stable angina' to Chronic Obstructive Pulmonary Disease (COPD) and Heart Failure (HF) who've discovered unauthorised DNRs either through their consultant(s) or when a nurse 'misspoke' and had to fetch the GP to explain why an involuntary DNR had been placed.
All of these DNRs my friends have discovered had been placed at the beginning of the pandemic. A medic who shall go unidentified told me 'off the record' every medic in Scotland had been asked to note which of their patients would 'be best served by placing a DNR' as a triage exercise during the preparations for the pandemic.
I checked with my consultants ( three, sigh) when the news began to be reported about unwanted DNRs being place and have been assured I have no DNR. My GP finally confirmed that - in writing via 'snail mail' and an email.
Every one of us should find out as soon as possible if we have a stealth DNR placement, and make sure our objections to said DNR are in writing at the GP, any consultants and other medical units we have contact with.
The Resus Council has this information about the professional responsibilities of a Doctor when making a DNR order.
Omg, I’m glad you found out now ,how awful
I’m outraged, obviously we all need to get this checked. I’ve PAF, SVT and now T2 diabetes 😳
How about 1. a quick call to a solicitor........a five minute freeby? or2, Citizens advice bureau?
Dare I suggest it might just be a misunderstanding, maybe they meant "if" rather than "that".
That's absolutely shocking, very upsetting for you to discover by chance too! Do you have any family that may have said this was your wish?
The last time I was taken to hospital in an ambulance, blue light job with a defribulator connected to me chest, the paramedic asked me if I had a DNR......I'm not sure how much access paramedics/ambulance drivers have to your general notes which contain information such as a DNR, I would bet on it being an error in their communication to you.
I have a DNAR in place which I arranged with my GP last year. She said that the ambulance service would be notified of it.
We ask the patient and any family or friends present if there is a DNR in place. if so it must be shown to us, if it can’t be shown we have to go with there isn’t one, in a cardiac arrest we would have to act in patients best interest where CPR would be commenced unless it is obvious death or we have done all we can and stop. We don’t have time to search data for this in a cardiac arrest situation so we do rely on patients and family to produce DNAR, RESPECT FORMS and ADVANCED CARE DIRECTIVES.
In general attendance to patients we can access patient GP records and it should state on there if there is any.
Hope this helps
That's dreadful Micheal, I have T2 diabetes, heart valve problems and hypertension plus other conditions. Following the death of a friend of mine who had signed a DNR I have sworn never to sign a DNR. The treatment she received in her final days was less than humane. I think as a result of the DNR.Now I will have to check that I don't have a "stealth" DNR against my name.
That is outrageous!, I’m really upset for you, scary to know that can be on our note’s without our knowledge, thank you for highlighting it, will be checking this out x
OMG that is awful! How did you find out? I have to admit after my last procedure I was thinking of letting someone know what I wanted but I never thought one would be in existence!
Hi Heather1957, are you aware you can complete a RESPECT form and /or have an Advanced Care Directive in place that states your wishes to medical care and treatment, advise is to have these visible in your home, let loved ones know and let GP know so if ambulance crew arrives they will know about it.
No I had no idea what is available it is something I do need ASAP. I live alone and strongly don't want to be a burden to anyone. We all may have different requests and if they can be 'tailor made' all the better. Time for some research.
Oh that's quite shocking Michael. I hope you'll be able to find out exactly how this was put on your medical records
There are usually strict protocols in place for a DNR to be in place, someone HAS to authorise it, either yourself or someone you have legally authorised as your attorney (member if family). If no one has authorised it, then it is an error and needs to be removed?
Morning Michael. There are, as the above post states strict protocols for a DNR to be placed on your medical records. However, I fear a great many of us have them, without being aware. I have one friend who has one, they decided to have it placed on their records for their own health reasons. Start with your GP, ask if one is in place and be direct with them. GP's usually respond well to a direct question. If you are going to the hospital for an appointment, ask your consultant, they will inform you of the reason why. I am still struggling to get my GP records changed after having a mitral valve repair 4 years ago. They insist at the Gp practice I had a replacement. I have shown them, my discharge letter from the hospital, nope, not good enough. Because I discovered this at the start of lockdown 1, I have not been able to get a face to face appointment with anyone to discuss, it s not an emergency matter, but down right frustrating all the same. Good luck and let us know how you get on.
Contact hospital records office and ask them direct questions, when it was added to your notes, who by, etc etc. And ask for them to remove it. Make an official complaint to the hospital.
I heard from a doctor friend that early in lockdown last year they had to identify patients who they would not resuscitate, patients who would get first dibs on the ventilator etc. He cried to even have to think about creating a hierarchy of need in terms of care, rather than just caring for every patient equally. A lot of patients with Co-morbidities ended up with DNR.
Hi Michael. I know this won't be any comfort but ambulance crews need to know if you have this in place. If you have one and they attempt resus they could be in serious trouble. They may attempt to bring you back, only to discover that you have suffered serious damage as a result. They have to ask.
One of the most difficult things with medical records is to correct errors. Once something is in your notes it’s very different to get it out again.
Totally agree. In August this year I was sent to the hospital with a print of my medical record. I was motified. More than three entries where wrong and when I went back over the years I found that I had three children of which I have none. My middle name was spelt differently and apparently I didn’t have asthma since 1981 and no heart history in family, I had never seen a cardiologist or had any scans or stress tests. Plus operations where missing. On informing the nurse in AE it was realised that my medical records had been mixed with another woman’s in the next town. But I was told it would be alright they would know by the computer ....which was also wrong Frightening
That's unacceptable, Michael, I hope you feel able to take this up as a complaint. I dread to think the fallout that such a serious error could cause. I personally have not had this happen bit was disgusted to learn that patients with learning disabilities were put on DNAR orders during the height of the pandemic. No one is lesser, I'm truly upset for you
Shocking and disturbing
I Post on behalf of my husband but on a personal note I found out that I was being confused with another patient with the same name. During by cancer treatment blood test results taken at home pre chemo we’re missing when I got to the hospital, only having to be done again delaying my treatment on the day. I only uncovered this when an invite for a therapy course didn’t arrive and I chased it. Put two and two together about the other problems I had had. NHS have now added my middle name to my records. I thought they had to double check name, address and hospital nos.
Hi Michael, It's an absolute disgrace , when I had my heart attack in May 2020, I was bullied in in hospital in an attempt to get me to sign a DNR.
I didn't, but did a bit of research at the time, it's seems it was a policy coming down from on high. Doctors in some parts of the country were even writing to patients to ask them to sign and and care homes were given blanket DNR.
It caused me much stress and was one one of the reasons why I had PTSD.
Somebody must have signed it off, so ask who it was and get it removed.
I feel for you.
Kind regards,
Paul
Reading through all these experiences, I am wondering if these DNRs were put in place early Covid, under Emergency powers. An attempt to manage the overload on ICUs, and would have made all those very swift transfers out of hospitals and into Care Homes, possible. I’ll try a letter to our local MP. he usually replies to specific questions.
From personal experience, my frail mother in law was in a care home last year during Covid, but we still had to review and sign the approval for DNR on her behalf as her attorney and next of kin. She had previously expressed her strong desire for DNR. Maybe some care homes did that under the emergency powers, but hers did not.
Interesting, I looked up ‘Do not attempt cardiopulmonary resuscitation (DNACPR) decisions’ on the NHS UK website. It gives a complete summary of this rather multi faceted subject, a lot of which has been covered in our discussions. EG What a Dr can decide alone about you, and what needs your consent.I was quite wrong about Emergency powers, but, for me, something has changed. The patient/ relatives etc seem to have to be much more proactive.
I recently spent 12 days in an assessment ward, waiting for a cardiology bed. In the next bed was a lady who spent several days there, she had been admitted from a care home. Although physically frail looking she was as sharp as a pin. We had some lovely conversations over those several days. With curtains around her bed I overheard a conversation where she was told there was a DNR in place, she was desperately trying to explain she had never signed anything to that effect and wanted to fight and live. Though very kind, a doctor said to her they would not resuscitate her if something catastrophic happened. I felt so sad for her, there seemed no one to fight her corner. Clinically I don’t know what her condition was so cannot comment whether this decision was correct, however it clearly was not what she wanted.
The decision not perform cardiopulmonary resuscitation CPR, is not taken lightly. There comes point in medicine when ongoing treatment is futile and can cause more harm than good.
Once a DNR notice is put in place only CPR is not performed, all other care continues.
The older a person, the less likely a person is to survive CPR, if they do survive they maybe left with damage such as a stroke and other neurological problems.
nursingnotes.co.uk/news/res...
I’m aware of that, which is why I said I didn’t know clinically what her condition was. I’m aware of how catastrophic resus can be and often unsuccessful. The point was, she was unaware it was in place
We can't second guess what going on.
It is the responsibility of the staff to discuss with a patient whether a particular treatment is in their best interests, including CPR.
This may have happened already, even documented however if a person has memory issues they may not remember.
So sad. I hope she recovered .
Maybe we should all check our medical records. Something fishy...just like the clot shots.
That is very worrying and still seems to be ongoing
I discovered the same with my late mum after she passed in 2003 that she had DNR on her medical file
The worrying thing it was never spoken about to either my mum or any members of the family
I only discovered this when I requested all her medical reports
The DNR didn't have any signatures on it apart from the doctor that was treating her for stage 4 cancer
I would definitely take this up the relevant authorities/bodies as they should not been doing this without your consent or that of you immediately family
That must have been a terrible shock! Sorry to hear it.
There has to be an audit trail. Ask in writing for full and formal investigation via PALS cc to your named GP . Outrageous and I can imagine how you feel
Yes strict protocols with a signed authorisation only, verbal approval would be invalid and not accepted by any organisation who put DNR's in place
Sorry to hear this Michael, especially given everything you have been through. I have little to add to everyone else's comments. It is a sad fact that this goes on behind our backs.
I hope you get it sorted. Best wishes Steve
This is not uncommon but disgusting they did it to my Dad which really upset him and Mum. We complained and had it taken off. It's disgraceful they can do this. They have no right to play God and make such a decision for you. They need your consent for this especially as you have the mental capacity. Make a huge complaint, insist It's removed and they provide evidence it has been done.
Hi Michael, this is rather worrying and reading post on here your not alone, i sincerely hope it can be removed, least you have made public that you have not consented to it. to you and everyone else on here Keep well x
That’s awful! I would write to hospitals you are connected to PALS office, explain, and ask for ALL information they hold on your DNR, send you copies, advise they are to be removed and for them to investigate for you.Send it signed for and keep proof of.
Also request your nhs copy files, stating anything with DNR on it to be included . This will give you the info for you to check off.
A lot of work and hassle but would seem essential sadly.
Good luck x
I too wonder if this was `implemented` during the early days of Covid. As someone who worked in the NHS 1965-2012, I can only say that I am shocked, but not surprised. Best wishes Michael. Stay safe everyone. x
Hello Michael it appears to me that DNR is now done without a patient or their relatives permission. Over the last few there has definitely been a change. Take care
I agree. Something seems to have changed. See NHS UK website ‘Do not attempt cardiopulmonary resuscitation (DNACPR) decisions‘ for current practice.
This is really worrying. For me, it is the fact that they don’t tell you or discuss it before issuing it as an edict. Can we find out if there is a DNR order on our files? This is close to me heart as I was brought back so may times during a serious illness in 2015 but now I am wondering what there is on files that I don’t know about. I was recently ‘discharged’ from Respiratory care without it being discussed with me at all. I am still fuming about that and my GP is trying to get a re-referral in place. The NHS is going to hell in a hand basket if you ask me and I worked for the NHS as a Clinical Scientist for many, many years.
Anyway, I hope you can get it taken off your notes. As far as I know there isn’t a central registration for storing notes and details because as you say, they get so many things wrong such as different addresses being used.
A DNR will usually be kept with u or in a care plan at home because u/family should have a physical copy !!
This would need to be seen by an ambulance crew or doctor or nursing team in hospital.
If this physical copy IS NOT with u they would have to start CPR and advanced life support.
Because the Do Not Resuscitate is not with u.
An electronic record of DNR on computer should not count.
Because access would be restricted!
If it is on your records have it removed and make a serious complaint.
It may be a mistake as sometimes u may be asked if u are having a serious operation like OHS The question about DNR Might be asked.
In your consent this only counts for that one occasion during that surgery!!
Usually, a doctor at a hospital will talk to relatives about a DNR. In both cases, I have been involved with a doctor spoke to me and my brother. In case one it concerned my mother who was 96 at the time and very unwell. He said it would not be fair on her to attempt to resuscitate her and we agreed. A DNR was put in place and it stayed even at her nursing home. So I gather from that if a DNR is put in place it remains. She had no knowledge of this up until her death a few years later.
The second case concerned a cousin visiting from 180 miles away aged 67. She had a urinary infection and heart condition and went downhill quite quickly. We agreed to a DNR on the doctor's advice - looking back I'm not certain whether we should have told her sister as the closest relative. Anyway, the doctor didn't ask. Fortunately, she survived against the odds. She is now in a care home and the DNR may still be in place.
Nothing was ever signed nor were we asked our names and it seems they took it for granted we were relatives. No check on us was made whatsoever. The persons concerned were never made aware of the DNR. Both at the time were not well enough to discuss the situation so our lives are in the hands of relatives.
Just an update. A DNR is ultimately a decision made by the medics even if you don’t agree. I feel strongly that this must change due to my own experiences. My husband fought the medics over this (and won…here am I am,) but they could have overruled him in spite of him telling them that I had always insisted that I wanted everything possible to be done should I be in that situation. It is morally wrong in my opinion that the medics play God and as I am the proof, they do not always get it right!
We are not allowed to end our own lives so why should a stranger decide when it is our time?
I have given this some thought and can see that by adding a DNR it is not giving anyone permission to actively end your life but telling them not to do anything to save it.
I think this is a very difficult moral decision but I was very worried I would have another stroke after the angiogram and know that I would not want to live if I was badly incapacitated. I recovered about 98% after my last stroke so count myself as very lucky but obviously who knows how badly a 2nd stroke would be.
15 months ago I had a heart attack. I had to be readmitted after an attack of pericarditis. I spent 12 hours in a&e waiting for a bed in a ward During this time a doctor turned up and asked me all sorts of questions like can you recite the months of the year in reverse
I asked him was this about DNR and he grudgingly said yes
I told him to push off but he apparently could and did issue a DNR
I found out later that this was about the pandemic When DNRs were being issued without reference to the subject or relations etc
My GP wrote to me and asked me to call her. She explained that it was all a mistake and DNRs should not have been issued without reference to patient etc
However I still believe that there is a DNR with my name on it
I suppose that I should pursue this and really consider the issues.
GP seems to be the first person to talk to because as a result of my experience they are likely to know
This is absolutely appalling. My jaw has actually dropped.
remember "medecins sans frontieres" - doctors without frontiers translated. There is a growing and competing club:"doctors without ethics". Notable exceptions obv, known to us all I expect. I dont like it but thats what I am seeing everywhere
Do not attempt cardiopulmonary resuscitation (DNACPR) decisions
nhs.uk/conditions/do-not-at....
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Hi Michael After my HA in 2013 my first appointment with GP the first thing we done together was a written health plan which this question was asked off which I said no to a DNR
After this was completed we both have a copy now to show to anybody who needs to see it.
My views on DNR are give the NHS a chance to save us as they have trained for years for that moment we need them most.
Good luck Andy
Hi Michael we would really miss you on this site for your good advice
NO help I'm afraid but I am utterlu shocked they can do this without your agreement. Go to eh top- to the health board.
Oh Michael, that's awful. My mother was taken into hospital a few weeks ago and they did ask her about a DNACPR (do not attempt cardiopulmonary resuscitation), but she's 93 and quite frail (and now with bowel cancer). She agreed to that, and my brother and I support her decision, but at least she was asked!
My neighbour who I used to care for had this applied- we were never sure who applied it, so can’t be much help on that side, but a long while after it did appear that on one occasion when he had been admitted really poorly, apparently a Dr had a conversation with relatives g( possibly his brother but definitely not his children. I can only say at the time he was extremely poorly so maybe it was an expected outcome , but was never quite convinced how this subsequently became a DNR??Anyway, I wrote a letter for him disputing this with copies given and signed by himself and his children, his son actually being his next of kin, this was given to his GP and four children stating his permission had not been sought and therefore requesting the DNA to the rescinded and that he wanted to be resuscitated .
He subsequently died at home where he wanted to be.
I think at the time I looked into this few years ago, the ideal thing to do was to have a durable power of attorney which states / gives relatives/ named person power over your affairs, there is another similar document that gives more powers which may help you in this situation. Sorry I can’t recall what it was now but hope it gives you a lead.
Regards
Sue
The humans being is rotten,
Absolutely horrifying Michael, I wish you well getting it corrected..
I know after my first HA 10 yrs ago, my cardiologist told me to do my end of life paperwork, I was 56 at the time. Then a few years back, my cardiac nurse told me to give her a copy for hospital files. It was signed by gp, every so often I check and sign and date my copy, so they know I still agree with my decisions. It discusses DNR. 3 copies, 1 at hospital, 1 home and 1 at gp. As much as they try, cardiologist said it's only a matter of time. Once done, it's not something you think about. But it should be your decision, not by chance. I hope you get it sorted. Take care. Moni
Hi,Have you considered a health power of attorney? Generally (and this is not legal advice) this has a strong chance of overriding an involuntary DNR. Solicitors will charge a small fortune to create this for you but in actual fact it is a pretty straightforward procedure.
Just go to the gov.uk website and search power of attorney, fill in the form and pay the fee, which is around £86. Just make sure it is signed in the right order and Bob’s your uncle.
It is utterly outrageous (and unforgivably arrogant) of medics to make this choice without your consent.
I agree with the other posters on here that there are things you can do to fight this now but a power of attorney would give you some protection if the worst happens- assuming you have a suitable person to nominate as attorney.
Best of luck to you.
My son barely survived an operation for a perforated bowel, which may have been caused by a serious road accident 2 weeks before, which caused internal injuries. He was put on life support. One of the consultants explained how sick he was, and said if he went into cardiac arrest, they wouldn't try to resuscitate him. His organs were so badly damaged, it would have been pointless. I could understand that, but to put a DNA order in place without telling a patient who is conscious and aware, or at least informing their relatives is shocking. Thankfully, my son started to recover after 4 days, and the DNR was removed. I hope you manage to get this sorted out, and soon. It must be very worrying for you.
That’s so scary. I was called in to my surgery and a dr casually shoved hims of away from his desk with his foot and hands behind his head he casually said I what the endogamy life and I needed to sign a DNR as the hospitals couldn’t cope with beds full of elderly. I was utterly stunned especially as I was feeling good that day and I have never had to go into hospital despite being stage 4. He was so annoyed I refused.i pointed out I had no intention of dying for a long time yet and he may well
Die before me anyway. He was annoyed with me he rang the receptionist and told her to give me literature about the end of life! I told her not to bother i didn’t want it anyway. I was shattered though …. I would never trust him as a doctor. He seemed to think he was God and could wipe me out when he decided my time was up.
Hi Michael. This also happened to my brother. He had been in hospital and when he was back home a copy of his DNR came in the post. He was so shocked and afraid. I immediately contacted PALs service and demanded this be removed. Myself and brother met with a consultant for an explanation and he said my brother had agreed to it. He had no memory of this and in fact had been extremely ill and couldn’t remember anything. I pointed out this was illegal to take consent from someone who wasn’t capable. There had been no discussion with family either. The order was removed and I made sure we had a copy of the conversation and conclusion. My brother wouldn’t go back to hospital after this. I’m sure they just took it upon themselves to issue that DNR and said nothing to family etc.
This is very scarry computers make mistakes could it be this
All who find out they have had an involuntary DNR against them should Emily sky news as this question was asked if that was happening and all said no. This is very shocking and they should be held accountable only an order like this could be given from the top.
Wow! A lot of upset people- & quite rightly so.. I have an awful lot of illnesses or ‘comorbidities’ as the Drs say. I have spent huge amounts of time in hospitals for over 20 years & been in Resus in A&E many times- but I’ve always fought back. I was told about 6 years ago, for the 1st but not last time, that one of my temporary Consultants had put a DNAR on me without any confirmation from me or my relatives. I complained to them but they kept saying it was in my best interests & that a medical team could over ride my decisions. This can change when I’m in hospital each time, depending on how ill I am. I do know Drs were persuaded to put patients who had problems with their respiratory systems to agree (verbally) to a DNAR when Covid struck. I have been told to fill an Advanced Care Directive which I think is sensible for anyone who has a serious chronic illness (or 2!?) It seems very unregulated but the Drs do say CPR is potentially very damaging, if you do survive… Not straightforward!
Do complain in writing to any/ all Drs & Consultants & good luck.🤔
I also found out that I had a DNR form in my notes also. I was devastated as I or my husband had not authorised this. What I subsequently found more traumatic was that apparently 38 years of my medical records have disappeared and they cannot be traced. That’s is no record of my 2 heart ops, pregnancies, and anaesthesic allergies. I have tried to find my records but keep coming up against brick walls. Any advice?
I suggest you contact the Information Commissioner's Office, they are the regulators of the General Data Protection Regulations ( GDPR)
I really don't know what to do
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