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  1. #1

    Need information re NHS Form signed by hospital doctor - similar to DNR (Do Not Resus

    This is rather vague and long-winded but I am looking for the name of an NHS form signed by a doctor in a Community Hospital where my husband was a patient for five months. Previously in two acute hospitals after fracturing his hip November last year and had surgery in the first hospital Then moved to another hospital for rehabilitation, but eventually moved from there to the local small Community Hospital for rehabilitation for the eldery physically and mentally frail.

    My husband has vascular dementia, which deteriorated during hospitalization. Almost seven months ago he attended to his personal needs, was continent, mobile, went out every morning for his newspaper. Now his short-term memory is almost non-existent, balance and mobility is very poor, he is 'High Risk of Falls' (has had several) although he can use a zimmer (when he remembers/is reminded) and eventually he became incontinuent, then doubly incontinent, requires personal care.

    He also has Type 2 diabetes, well controlled at home with tablets and diabetic diet. Usually 7-11. Soon after surgery this became erratic, going up into the high teens and over 20. Before being moved to the Community Hospital I was told it had been stabilizd at 10.

    Unknown to me until he became very ill in April some months after being in the Community Hospital his glucose level had gradually risen up through the teens, and the 20s and mid-30s. He became very ill, bed bound for several days, delirious, and a staff-nurse admitted it was a life threatening situation.

    Apart from a consultant at the hospital one morning a week, there was a young doctor who was sometimes there. The only time he ever talked to me was when I visited and was shocked to find my husband not in the sitting room but in bed and delirious. I saw the doctor on the phone in the office and told a nurse I wanted to speak to him. I was told the diabetic tablet mediction had been stopped and insulin injections started, my husband was now insulin dependent. Had I not spoken to him I might never have known of this as information from nurses was like drawing blood out of a stone.

    The doctor said I should see an improvement in my husband in about 5 days time but that he might not return to what he previously was. Once out of bed he spent 11 days strapped into a wheelchair, could not speak, feed himself, do anything, although knew me.

    Very gradually my husband did improve. His diabetes is being closely monitored in the care home where he now is, he can now speak, feed himself very well, move around with the zimmer and is more or less back to what he was before the diabetic crisis. Although of course not, and never will be, back to what he was before he fractured his hip and went into hospital.

    The hospital consultant did not "recommend" my husband returning home, he would have been at risk, plus other factors. A great shock.

    He has now been in a care home for two weeks and two days. On Friday his Named Nurse had a long discussion with me including the 'end of life' subject. To resuscitate or not. We talked at length but briefly, I said that as he presently is if he became ill, a heart attack or whatever, I would wish him to be resuscitated. But if in the future he had reached a stage where he had drastically mentally and physically deteriorated, and had no quality of life at all, then I would agree to DNR - Do Not Resuscitate. But that is a decision I could only make in the future, depending on the circumstances as they might then be. I do not want to lose my husband, but I do know that would be his choice. His nurse wrote this in his folder - his Care Needs.

    The nurse said I could read the Care Needs folder at any time and today I sat alone and looked through it. Now to the point of this post.

    The very first page was an NHS A4 size Form with red border on the right with large intials printed on it, and elsewhere. It had been signed by the Community Hospital doctor in April on the first day my husband was out of bed and in the wheelchair. I was so upset, and I cannot quote the title and initials - I think there was a 'C' first letter - nor the content . I need to read it again. Although I could not see the words or letters DNR on the form that is what it to be about. I also saw a mention somewhere about relatives.

    In an emergency I could imagine a nurse running to check my husband's Care Needs file, seeing this form on the first page and acting on it.

    I was shocked to think that unknown to me, his wife and also his Power of Attorney for both Finances and Welfare, such a form had been passed on to the care home, signed by the hospital doctor, and that I had never been consulted. Shocked that the form had been signed the first day my husband was out of bed and in the wheelchair.

    I could not make out the handwriting of the "reason" for the signing of this form, but the meaning was obvious. Had my husband again taken seriously ill in the Community Hospital there would have been no attempt to treat him. He would have been allowed to die.

    Why? Because he has dementia?

    Did that young doctor look at my husband sitting in the wheelchair obviously having lost his abilities, decided he could never recover them, he would be a vegetable, he had dementia, and write him off?

    He was wrong.

    I know that young doctor spoke to other patients who did not have dementia, and their relatives, but over five months he never ever approached me. The wife and legal representative. Not until that occasion when I asked to speak to him. I had to ask staff-nurses, and information was little.

    The care home duty nurse today was not my husband's Named Nurse, she will be back on duty on Friday. But today's nurse removed the form from the folder and said she would contact out GP practice and others.... I *think* she mentioned paramedics. I was so shocked and was not taking it in. But I will speak to the Named Nurse on Friday. Today's nurse also showed me stickers that are put on residents bedroom doors as to whether or not they have to be resusciated. She was going to put one on my husband's bedroom door to say that yes he should be resuscitated.

    A long post, I am upset. This is an important NHS form and I want to know who else received a copy of it apart from the care home and our GP practice, and to make sure it is removed from every source where there is a copy.

    I do realise that doctors can overrule relatives and make a decision in favour of DNR. But that was not the situation with my husband. Nor does it apply to my husband as he presently is. He has no heart condition, he does have HBP well controlled, and he does have a reasonable 'quality of life'.

    This morning for the second time in the care home he was playing carpet bowls, and apparently very well although he has never played the game in his life! How you play carpet bowls with poor balance and using a zimmer I do not know, but he was enjoying himself. Even if when I later saw him he had no memory of it at all!

    Sorry for the long ramble, but if anyone can give me any informaton concerning this form, it's title or anything at all, I would very much appreciate it.

    Thanks for bearing with me.

    Loopiloo (Loo)
    Last edited by Loopiloo; 15-06-2011 at 10:51 PM.
     

  2. #2
    Loo - could it have been cardiopulmonary resuscitation?
    Jennifer

    Volunteer moderator and former long distance carer.

    A test of a people is how it behaves toward the old. It is easy to love children. Even tyrants and dictators make a point of being fond of children. But the affection and care for the old, the incurable, the helpless are the true gold mines of a culture.

    Abraham J. Heschel
     

  3. #3
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    Loo

    How stressful for you to find out this information. I've done a scout around and thought you might find the following information useful. It is the outcome of an investigation into a DNR case in scotland and so it does give useful background information which may be of use to you. With regards to the form itself - there is reference in the link to UPR Unitary Patient Record I think - perhaps this is it - it is certainly where they talk about any DNR (or not) having to be recorded.

    http://www.spso.org.uk/webfm_send/2224

    Hope this helps, if nothing else to give you some more power to your elbow!

    Fiona
    x
     

  4. #4
    Me again - I wondering if it might be this http://www.scotland.gov.uk/Topics/He...cs/dnacpr-form

    If that is it, there's guideline on the site about how it should be used.
    Jennifer

    Volunteer moderator and former long distance carer.

    A test of a people is how it behaves toward the old. It is easy to love children. Even tyrants and dictators make a point of being fond of children. But the affection and care for the old, the incurable, the helpless are the true gold mines of a culture.

    Abraham J. Heschel
     

  5. #5
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    Dear Loo

    On Tuesday evening I had a meeting with Dave's assigned nurse who gave me a form to fill out. I din't kow what it was called but apparantly it backs up the 'purple' DNR form. (I don't know the correct name for that either.)

    In it I had to say what Dave would want when THE time came. Also where he would want to be - I said, preferably at home but, apparantly that's not an option! Also who would be informed if I cannot be contacted.

    The home would not ring and ask me then, they want to know now so they are prepared. Unfortunately, I was not prepared for this so soon after his arrival even though I appreciate why it has to be carried out sooner than later. I said that I would want to be there and for him to be as comfortable and painfree as possible and not to be frightened but reassured. I was also asked for the name of a preferred undertaker.

    I was devastated and it's all added to my feelings of grief and guilt which, as you know, are pretty strong at the moment. The nurse, a large and to me, quite intimidating nigerian lady , was very nice and seemed sympathetic but it didn't help much. I was assured though that it definitely didn't mean he wouldn't receive medical care e.g. antibiotics for infections or go to hospital if he falls etc.

    Reference the DNR form - I was asked about this by the vascular consultant after Dave had to be resuscitated soon after his amputation when he o/d'd on morphine due to his kidney disease preventing the elimination of the drug. He said, in view of his many health problems. I was horrified and said so. He was still pretty good mentally then, we expected him to be home soon and his anticipated quality of life seemed ok.

    I was asked again by his consultant psychiatrist in the community hospital in January. at the meeting when they said he needed to go into a nursing home.I again said that yes, I wanted him to be resuscitated even though I could see they thought otherwise.

    A couple of months later, a lady doctor, another consultant, repeated the question when one of my daughters was visiting with me. Again, I demurred and the doctor said, if it helps I can tell you that if you were not around, no medical person would resuscitate in view of Dave's extensive health problems. (I won't list them here as I've done it before re CHC etc.) and if they did, it probably wouldn't work. My daughter added that he wouldn't want to be living even as he is and, reluctantly, I accepted.

    I have to say that I am crying even as I am writing this. It breaks my heart but I know they are right.

    I don't know if such a form as you describe exists for Dave but I don't know the title of the form that is called the'purple' form though I know GP's have them too. I have not seen a care folder for him. Is Henry's left in his room? Perhaps some forms are different in Scotland but I see that Jennifer and Fiona have provided links which might help you identify it.

    Interestingly there was no mention of religion though that was mentioned later when I filled out his life history sheet. (Initially because I said he likes singing hymns - and we are Welsh!)
     

  6. #6
    Dear Jennifer
    Loo - could it have been cardiopulmonary resuscitation?

    No it wasn't that.
    Me again - I wondering if it might be this http://www.scotland.gov.uk/Topics/He...cs/dnacpr-form

    If that is it, there's guideline on the site about how it should be used.

    Many thanks for your help, and particularly for the link. I have looked at the two forms there, actually printed them off.

    However although a similar type of form, the same layout, and red highlighting, the title of the form I found in Henry's Care Needs folder was different and the initials were printed down the right side in the red border.

    Apart from Henry's name, DOB, hospital address there was little else to fill in other than the reason for whatever action was not to take place. Filled in and signed by the hospital doctor - whom the nurses referred to as a GP.

    There was only the one signature on the form I saw whereas the one on the website refers to 'Junior Doctor's Signature' and 'Responsible Senior Clinician's Signature'. A Junior Doctor signed Henry's form but not also a Senior Clinician.

    As on the form on the website, on the form for Henry there was reference to informing GP and Ambulance Crew. The nurse took away the form and said she would do this.

    There was less detail on the form I saw, for instance nothing about 'This has been discussed with patient/relevant other', parts to be filled in under 'Ambulance Crew Instructions'. No boxes to be ticked including the 'Yes/No' boxes at the end of page 2 of the form There was only the one page.

    I will check this with Henry's Named Nurse tomorrow, ask to see the form again. Take note of its title, and more. I did not read every single word yesterday, initially I was so shocked then aware of passing time and I wanted to read other things in the Care Needs folder. The 3 week assessment with the Social Worker and Named Nurse is on Monday and I wanted to familiarise myself with the Care Needs notes. (They have Henry down as having a pacemaker - that info from the hospital - but he does not have one)

    But I am deeply concerned about this form. I doubt if I have the authority to 'cancel' it. Last night I could not get it out of my head.

    As I think I said in my original post, Henry was in a poor state when he was no longer bed bound and moved to a wheelchair for 11 days. All of his prevous abilities had gone - and the doctor had said to me that he may not recover them, return to as he was before he was ill.

    But the doctor was wrong. Henry has recovered those lost abilities. To the point he was at before becoming ill with the high blood glucose levels. Between breaking his hip and the diabetes crisis he had already lost the abilities he had before going into hospital and they are gone forever. But he certainly is not end stage dementia.

    In some respects mentally he is better than he was the weeks he was becoming ill due to high blood glucose levels, which would affect his dementia.

    I strongly feel - believe - that doctor made a wrong decision. Based on the fact that Henry has dementia. I feel he 'wrote him off' without justification.

    I just do not know if this form CAN be revoked simply by the care home cancelling it with the GP and Ambulance people. The Community Hospital who issued it have it on record - God forbid Henry ever has to go back there in future - and I would think the other two hospitals in this area that Henry was in will also have it in their records.

    The thought of another 'battle' ahead plunges me into despair.

    However, I can only wait until tomorrow to discuss it with the Named Nurse when she is back on duty and take it from there.

    My deep appreciation of your help, Jennifer.

    Loo xx
    Last edited by Loopiloo; 16-06-2011 at 01:43 PM.
     

  7. #7
    Dear Fiona

    Thank you also for searching the internet on my behalf.
    With regards to the form itself - there is reference in the link to UPR Unitary Patient Record I think - perhaps this is it - it is certainly where they talk about any DNR (or not) having to be recorded.

    http://www.spso.org.uk/webfm_send/2224

    I did read this with interest and although it was a different medical situation concerning the man who died, I deeply empathised with his wife concerning the lack of information she received. This was my experience in all three hospitals over almost seven months. No doctor/consultant discussed/informed me concerning any of Henry's conditions, Until I asked to speak to the young doctor who just happened to be in the hospital the first day I found Henry in bed extremely ill and delirious.

    Loo xx
     

  8. #8
    Hi Loo.

    It does appear that all of the NHS Scotland end of life forms have this similar layout.

    I was wondering - do you have a mobile phone with a camera on it? It might be simpler for you to simply take a picture of the relevant forms.
    Jennifer

    Volunteer moderator and former long distance carer.

    A test of a people is how it behaves toward the old. It is easy to love children. Even tyrants and dictators make a point of being fond of children. But the affection and care for the old, the incurable, the helpless are the true gold mines of a culture.

    Abraham J. Heschel
     

  9. #9
    Dear Saffie

    I read your post with interest - and deep empathy - and want to reply, but I have to go out very soon and will write to you later.

    Henry's Named Nurse discussed the 'end of life' situation with me last Friday, althugh I was prepared for that happening and had thought it through earlier. We talked in depth about DNR. She also noted that I did not want Henry to go into hospital unless it was totally unavoidable, such as a fracture.

    If he had, for instance, a heart attack as he presently is then I would want him resuscitated. Any future resuscitation would depend on his overall mental and physical condition and the nature of the the medical condition. If he had deteriorated to the point of having no quality of life at all then I would consent to DNR. I know that would be his choice.

    I do live in fear of him having to go into hospital while his dementia is as it presently is, not last stage. For instance due to a fall (and he has falls) and a fracture. Because hospital doctors can overrule relatives wishes concerning DNR.

    When he is obviously approaching the end of his life I wish him to remain in the care home and be nursed there, with the GP in charge, and fully understand that this would be palliative care.

    Sorry, have to go. I do feel for you having to deal with this yesterday. It was almost two weeks before I had to do so, mainly because Henry's Named Nurse had been off duty several days and this was prolonged by another week due to her having a chest infection.

    Till later.

    My love and thouhgts
    Loo xx
     

  10. #10
    Quote Originally Posted by jenniferpa View Post
    Hi Loo.

    It does appear that all of the NHS Scotland end of life forms have this similar layout.

    I was wondering - do you have a mobile phone with a camera on it? It might be simpler for you to simply take a picture of the relevant forms.
    Jennifer, unfortunately I have been without a mobile for some time. I have the mobile (with camera), it is quite old now, but stupidly lost the charger. Always so careful to keep it in the same place, well last time I did not. Have searched everywhere in vain.

    I bought a cheap basic N*k** from Am*z** which was supposed to be 'unlocked'. but the SIM card from my old mobile would not work with it. Neither did another two SIMs I bought, so it appears to be locked. I keep meaning to take it into a mobile shop to be unlocked but just have not managed into town for ages.

    I have wondered if Henry's nurse might allow me to bring the form home and take a copy of it, but perhaps not.... I shall ask on Friday.

    Thanks again.

    Loo xx
     

  11. #11
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    Hi Loo,

    I'm sorry you have had this experience. When Dad was in hospital last year DNR was discussed with us, and as he was so ill, I agreed with the medical advice that if his heart were to stop, then it would be cruel to try to resuscitate him. The doctor made it clear that it was just if his heart should stop, but that they would continue to treat any infections and give him his heart medication. He did say that he would not advise CPR on anyone of Dad's age and frailty because what usually happened was that they would break the ribs and cause a lung puncture. I can only say that 15 months after he left the hospital he has made a huge improvement in his physical health, and even though he had the DNR form, every effort was made to treat him when he had a stroke back in the winter.

    I don't know if that helps at all. I would have been just as upset as you are if a form had been filled out without reference to the family. I've filled out the end of life form at the nursing home, and have requested that every effort be made to keep him there rather than in hospital if he becomes ill again. I've made sure that my GP has a copy of that, and it is the first thing you see when you open Dad's records on the computer screen.

    I hope you get to the bottom of this,

    Love Sue xxx
     

  12. #12
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    Hello Loo,i'm so sorry you're upset.

    When my mum was in a care home,the GP had been called out because mum was poorly.He 'decided' to sign a DNR form,and another form similar to a DNR(can't remember what it was now) without my agreement.Luckily i had a good relationship with one of mums carers and she phoned me to let me know.She said to him that i held POA,was next of kin and that i should be asked,but he ignored her.

    I went straight to the care home and ripped the forms up,telephoned the GP,and he said 'your mother is old,what is the point of prolonging her agony.'

    I did sign the form eventually,but when mum was in the final stages.I wanted to make the decision,not a jumped up GP who i felt wanted to give up on any elderly person.

    Its not easy to make the decision to sign,but it should be your choice and when you feel you can face it.
    Thinking of you.x
     

  13. #13
    Yes, Sue it did help to read what you wrote. Your Dad sounded to have very good hospital doctors.

    I know I am always going on about how little information I received over 7 months Henry was in three hospitals, except for chasing after staff-nurses and the little they told me, as I've said like getting blood out of a stone. The fact that I am by law Henry's wife and his Welfare Attorney seems to have counted for nothing. So it was good to read how well your Dad was treated, and how well informed you were by the doctors. Also that his physical health hugely improved.

    I do feel the junior doctor who signed this NHS Form 'jumped the gun'. Henry was very poorly the day the junior doctor signed the form, no speech, inability to feed himself, stand, do anything. But Henry did very gradually improve, and now, two months after he first became very ill, he is back to the dementia level he was at prior to the diabetic crisis. (although sadly not back to what he was before the fractured hip and hospitalization)

    He is also physically much improved, after swiftly losing weight and muscle when ill. He was skin and bone. In fact he looks better than he has since November when he went into hospital, lost a lot of weight there - and most of his hair on top.

    I have written notes about the situation and do hope I can get the Named Nurse free to discuss this form with me. If it can be revoked, or at least periodically reviewed. As Henry presently is it no longer applies.
    I've filled out the end of life form at the nursing home, and have requested that every effort be made to keep him there rather than in hospital if he becomes ill again

    I was not given a form to fill out, the nurse wrote it by hand in Henry's Care Needs file. Along with my wish to avoid hospital unless absolutely unavoidable (fracture). I shall add that to my notes. Would also want the GP to have a copy.

    Is it usual to fill out such a form when someone goes into a care home? Henry's is also a nursing home.

    Yes, I do hope I can get to the bottom of this.
    I've made sure that my GP has a copy of that, and it is the first thing you see when you open Dad's records on the computer screen.

    I'm very interested in this. How come you can see your Dad's records on the computer? Are they GP, hospital or care home records?

    Having read your posts, your Dad's care home and the staff sound wonderful. So very reassuring for you, and lovely to have good quality times with your Dad.

    Thanks for writing, Sue.

    Love
    Loo xx
     

  14. #14
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    Hi Loo,

    The staff in some parts of the hospital were good (when he was acutely ill), but at other times it was a nightmare.
    The notes on the computer are at the GP's surgery. I've got the same GP and he has also been the doctor for my inlaws, who I nursed before their deaths, so we have a good relationship. I went in to see him after a locum GP had sent Dad to hospital after a stroke in October. That was an awful experience, where Dad was terrified and ended up shouting at a nurse, which resulted in him being surrounded by 2 burly security guards and 3 nurses all shouting at him . I told the GP that I would really be unhappy if that were to happen again, and he made the note while I was there. He then showed me what happened when anyone called up Dad's notes, so that if the home called a doctor out, that would be the first thing anyone would see. He also put on there that if there was a request to change Dad's medication, it must go through him as the senior partner. That was to make sure that nobody put Dad back onto the anti-psychotic meds that had probably caused the stroke in the first place!

    I have been lucky most of the time with our GP and the home. Nothing is ever perfect, but on the whole they've been good. I suppose that's all we can hope for.

    Good luck,

    Sue xxx
     

  15. #15
    Thanks for writing, Kassy.
    She said to him that i held POA,was next of kin and that i should be asked,but he ignored her.

    I have become cynical about POA. Why do doctors ignore it.
    I did sign the form eventually,but when mum was in the final stages.I wanted to make the decision,not a jumped up GP who i felt wanted to give up on any elderly person.

    I felt that way about the young hospital doctor who signed this form, whatever it is - although I know what it means. He was giving up on an elderly person with dementia after a deterioration following being ill. Rather than waiting to see how he was when he had recovered from a very traumatic experience. Henry took a while to recover, but he did, and the doctor did jump the gun. He is just a young GP who probably knows nil about dementia.

    But I must stop myself ranting...

    I also would agree to DNR when common sense told me it was the right time.

    No it is not an easy decision, but long before Henry had dementia we talked about such things, he was philosophical about death. I know that when the time did come, that would be his choice. Since he is no longer capable of speaking for himself, I would be making the choice on his behalf.

    Thanks for your thoughts and support, Kassy.

    Loo xx
     

 

 

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