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DNR (Do not resusitate) abuse in hospital

Discussion in 'I care for a person with dementia' started by ChristineF, Sep 12, 2015.

  1. ChristineF

    ChristineF Registered User

    Feb 8, 2011
    My dad now lives in a care home as he has Alzhiemers. 3 weeks ago, he went in to hospital with a water infection. This was on the Thursday. In the early hours of the Saturday morning, my sister, who has POA, got a call from the hospital to say he was being moved to intensive care. It was nothing to worry about. They couldn't get his blood pressure steady and intensive care could better deal with it. He was there for over a week then moved to a ward. He seemed so much better but more tests were to be done.

    Yesterday, my sister got a call to say he was being discharged. My other sister collected him and took him back to the care home. Dad seemed happy to be home. As my sister was gathering dad's things together, the matron told her his medication was on the table ready to take then she made a fuss of handing my sister an envelope and told her it was my dad's DNR form and she should hand it in to the care home. As you can imagine, my sister was shocked as none of us knew anything about it. She brought it home and asked me and my other sister to meet up to discuss it. We found the form was signed by a junior doctor when it should have been signed by 2 doctors. The time on it was an hour and a half after dad was taken to intensive care but no-one phoned my sister to tell her.

    We have searched for information on this and found several stories where, after a loved one has passed away, family have found DNR notices in the records and not known about it. One woman recovered then found it. Again she knew nothing about it. Another elderly lady went for a hospital appointment and was asked to take her notes to the doctor she was seeing. She found one in her notes and was shocked by it. Age UK have said they think some hospitals are using DNRs as a form of euthanasia. Disability Now told one lady to check her notes to see if there was one there and to make sure it was in her notes that she wanted to be resuscitated and to let as many people as possible know about it.

    I shudder to think how many people this has happened to. It seems that if you are elderly, you need to tell them you want to opt in to be resuscitated rather than opt out.
  2. garnuft

    garnuft Registered User

    Sep 7, 2012
    It's a shock for you but I think you should do some research on the internet about resuscitation.

    My Mam had a DNR notice on her notes, with my and my sisters permission (given at 1am on an acute ward and mam was enduring CPAP),

    A few weeks later my sister got herself into a row with the Consultant, mam was home again and not acutely ill, so sister didn't think the DNR was appropriate anymore.

    She managed to have it removed, we talked and had it reinstated.

    My mother was in hospital for a short while when it was discovered she needed vital heart surgery to stay alive but she had COPD and was 6 years along the path of dementia so was beginning to be malnourished and emaciated, she could not be put forward for surgery.
    We all agreed.
    She was 86.

    She came home on fast-tracked CHC and along with her hand, I clutched right to me the vivid yellow envelope and stickers that would inform any Dr., paramedic or nurse who attended that Mam would not be forced to have a final assault on her frail body, be hauled off to Hospital but would be legally protected to slip away quietly in her own bed.

    Which is what happened.

    She died nursed by her family not strangers, quietly, gently, surrounded by love.

    A good death.

    Sent from my iPhone using Talking Point
  3. Raggedrobin

    Raggedrobin Registered User

    Jan 20, 2014
    I'm sorry for the shock you had but I am not sure I feel your facts are right. I have not heard Age UK say that DNR is being used as a form of euthanasia.

    DNR is not nearly as evil as it sounds. It doesn't mean people are just left to die of all sorts, it generally refers simply to whether or not someone should have resuss if their hearts fail.

    You need to think long and hard about what DNR means. If a person with dementia then has many other complications, is it fair to keep that person's life going, unnaturally? It depends whether you think they have quality of life or not. When for whatever reason there is no one available to consult, then a doctor has to make a DNR assessment themselves.

    Relatives with PoA should be involved in a decision on paper of DNR, but really it is the care home who should have involved you in this earlier, so that when he went into hospital he travelled in with a DNR signed, or not, depending on the views of yourselves and his GP.
  4. Pete R

    Pete R Registered User

    Jul 26, 2014
    Hi ChristineF,

    If neither your Dad or any member of the family agreed to this DNR then you should be making a complaint to the hospital concerned. It would appear that someone has messed up big time and it is important that if it is your wish to have it removed from the records then it is done so as soon as possible.

    The resuscitation process can be quite traumatic and can cause additional problems even if successful but it is a choice that should not be left to the state to decide.

    My Mom surprised me when she told me many years ago that she would want to be resuscitated and we had quite a long chat about it. Fortunately I was with her last year whilst in A&E where she needed it 3 times, and although we will never know if it was that or the appalling treatment she received in the ward afterwards that made her dementia worse she is still with us and generally quite happy.:)

    I wish you all well in whatever you decide.
  5. nicoise

    nicoise Registered User

    Jun 29, 2010
    #5 nicoise, Sep 13, 2015
    Last edited: Sep 13, 2015
    I've quoted a specific part of your post; reading between the lines, your dad was really very unwell at that point to have been moved to intensive care. Unexpectedly your father's blood pressure was difficult to control, which might be suggestive of the possibility of a heart attack, and a plan needed to be in place should that happen - to carry out cardiopulmonary resuscitation (CPR) or not. As has been said, that really is something the care home should have already discussed with you as his family about what your father's wishes might be for such a situation.

    In the very early hours of a Saturday morning, when a hospital is probably running on a fairly small staff, especially doctors, it may be that a decision was asked for and made which didn't follow the guidelines fully (the signatures of two doctors) for the DNR paperwork. That's a possible explanation, not an excuse or justification. It simply isn't good enough, and the hospital should be made aware of this.

    However, this eventuality didn't arise, and he obviously benefited from the close attention he received - and that's hardly the action of a hospital who are trying to euthanase demented old people....

    I would expect that your hospital has a Patients Advise and Liaison Service (PALS) which acts as a complaints and information channel. You could raise this issue with them to perhaps get an explanation, and highlight that procedures don't seem to be followed as they should be and your feelings about discovering this.

    But equally, raise this with the care home, read up on what CPR involves, and talk with your family to see whether anyone knows what your father would wish for himself with regard to such procedures or life-prolonging treatments.
  6. Beate

    Beate Registered User

    May 21, 2014
    Yes, often DNR is the kindest option. But it's not ok to decide that over the family's head, especially if one of them has POA. If they had time to call your sister in the middle of the night, then they had time to ask her what she wanted to do about DNR. They also should have discussed the pros and cons with her. I think you are fully within your rights to complain.
  7. ChristineF

    ChristineF Registered User

    Feb 8, 2011
    Thank you for your replies. I totally agree that in the case of someone being so seriously ill or not having quality of life, a DNR should be in place. However, before dad developed the water infection, he was happy with his life, happier than he had been in the 4 years since mam died. He's got friends which he didn't have before and is always praising the carers and saying he likes living in the care home. He is now back in the home and happy with his life again.

    I understand that a doctor may have to take the decision not to resuscitate in an emergency but at no time were we told it might be a possibility. The hospital phoned my sister in the early hours of the morning to tell her dad was being moved to intensive care but it was nothing to worry about. It was only that they could better care for him at that point in time. The DNR was signed an hour and a half later. Why did they not tell my sister when they phoned or later that day when she visited, even if it was only so that we could see him before it happened? She has POA over dad's health.

    Garnuft, I'm glad that you were able to do that for your mam. It was the right thing.

    Ragged Robin, the care home knew nothing about the DNR. It was only signed an hour and a half after dad went to intensive care (2 days after going in to hospital). And neither did any of the family or dad. Here is the article which was in the newspaper. This was actually 4 years ago but it was a lawyer who told us just yesterday who the charity is. Oops, sorry, it won't let me post the link. It was in The Guardian. The headline was 'Elderly patients condemned to early death by secret use of do not resuscitate orders. '

    Thank you PeterR, if we thought dad would be made worse by resuscitation, we would agree to the DNR but he has a fairly good quality of life. I think the worst part is that he wants to go out shopping on his own but obviously can't as he sometimes thinks his house is still there for him and he can just move back in. As you have found out, people can have quality of life after resuscitation.
  8. Pete R

    Pete R Registered User

    Jul 26, 2014
    The quote is from Age Concern which is now Age UK so you were not far off......

    As for the comment regarding the CH. They should have spoken to your Dad and the family when he first moved in and discussed DNR then. If they still haven't done so then make sure they do.
  9. Quilty

    Quilty Registered User

    Aug 28, 2014
    Families need to be proactive about this decision

    If care homes have not raised these questions then families need to take the lead and get their wishes recorded. The big question is what kind of death do you wish for your loved one? I was lucky that my mum made her wished clear to me and her doctor and that I agreed with them. She has a DNR on her care home care plan and her medical records held with the GP. She has moderate to severe dementia, arthritis and COPD. Her body would be damaged by resuscitation and we both want to avoid hospital. I have stated hospital only for broken bones now. The nurses in her care home who know her and love her will do a better job of caring for her and she will be left in peace when the end comes.

    Its a terribly hard decision to make but if it was YOU what would you want? I would not want to get to last stage dementia when I cant walk, talk or eat.

    Time to have some serious talks?
    Love Quilty
  10. Spamar

    Spamar Registered User

    Oct 5, 2013
    Quilty - OH was at that stage - couldn't walk, eat, talk, though to be fair he went downhill very quickly. We did have DNR, having talked it over with gp. He just quietly failed....just went to sleep over 2 - 3 days, which was very peaceful but NO WAY would I have wanted him in hospital.

    He was in care home for the last 3 months, though he only went in for my respite!

    DNR, of course, just applies to resuscitation. Figures suggest that an over 80 with dementia has a very slim chance of survival in the long term. I was told all other decisions could be made by me. Hence I allowed antibiotics for an infection. He recovered from that OK.
  11. Quilty

    Quilty Registered User

    Aug 28, 2014
    This is my hope you my Mum. It sounds like a calm and peaceful end, in a place that is home. She has already had several lots of antibiotics due to her COPD. Thanks for sharing your story. I hope it helps others.
  12. AndreaP

    AndreaP Registered User

    #12 AndreaP, Sep 13, 2015
    Last edited: Sep 13, 2015
    I'm guessing that many hospitals see resuscitating an elderly person with dementia as a waste of resources. I know that sounds terribly harsh but considering the cost to the community of keeping elderly dementia patients alive when the natural end of their life is reached - well you do have to ask yourself if that is not a justifiable point of view.

    Medical science has got very good at keeping people alive but is it always the desirable option? Should we keep people in a persistent vegetative state alive with a respirator and a feeding tube? Personally I think it's madness.

    Your dad sounds like he got excellent care uncompromised by his dementia diagnosis. I presume the doctor's DNR notation was reference to further "heroic" measures should his condition rapidly deteriorate. I don't see DNR as a form of euthanasia but as I said before, just letting nature take its course. Surely DNR refers to restarting a stopped heart with a de-fib machine or adrenaline injected into the heart muscle? That's resuscitating at a time when a body is ready to die. It's a tricky ethical situation and there are many practical factors to consider.

    The unwritten policy of the hospital is probably not to resuscitate dementia patients for practical economic reasons. And the fact that it had not been signed by two doctors may simply mean that his condition never deteriorated to a point where the second signature was considered necessary. Ergo, the DNR was not valid and could not have been acted upon in dad's case. The nursing sister may well have made a mistake by handing it on. It sounds very odd that it was to be handed to the care home for future reference. Very odd indeed seeing he had completely recovered.
  13. Pete R

    Pete R Registered User

    Jul 26, 2014
    Just because someone has dementia does not mean that their "natural end of life is reached".:mad:

    My Mom had dementia when she was resuscitated due to loss of blood. Totally non dementia related.

    Is it just elderly dementia that you think are not worth saving or would you include any other diseases/conditions? Do you have an age when someone becomes elderly? :confused:

    The rest of your comments regarding hospital policy have no foundation in fact whatsoever.
  14. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    Mum has DNR on her records as she has a long list of illnesses plus advanced dementia. CPR can cause broken ribs, oxygen starvation causes more brain damage. I would see it as prolonging her death rather than her life if DNR was ignored.
  15. Spamar

    Spamar Registered User

    Oct 5, 2013
    Agree with you, Onlyme
  16. bemused1

    bemused1 Registered User

    Mar 4, 2012
    Pete I think you have misinterpreted what Andrea said. She didn't say that dementia made people less worth saving. What she said was 'when the natural end of their life was reached' Some of us believe that when nature has decreed the end of your life is reached for WHATEVER reason, there are sound reasons for allowing nature to take its course. I for one agree with her as I am sure many others do.
  17. Sue J

    Sue J Registered User

    Dec 9, 2009
    #17 Sue J, Sep 13, 2015
    Last edited: Sep 13, 2015
    Hi Christine

    Having worked, in the past in high dependency setting where people are acutely ill the priority is to give them the best treatment/care possible appropriate to their needs. If no DNR is in place and their condition worsens there is a dilemma of what is the best course of action but active treatment is always the case when no DNR is in place. You were not told that DNR was a possibility until the DNR was signed because prior to that it was not a possibility. As to why your sister was not told later sounds like a communication lapse, maybe a change of staff and maybe poor understanding of the circumstances of the family views and your father's situation. They may not have understood she had POA for your Dad? No excuses but a need to speak to appropriate people and get it sorted out.

    It is surprising that the care home have not discussed this with you as a family before, but as a society we are not that good at addressing these issues in my view leading to potential for the abuses that you are concerned about, I have my concerns too at some things I have witnessed.

    I first became unwell aged 48 I didn't receive adequate help from my local CMHT but I did receive a form to complete (something I couldn't do) without warning of what my DNR wishes were:eek: I went to them for help to support me and find out what was wrong! in the hope of getting better not being told at 48 if you pop your clogs we're only interested in whether we legally have to thump you on the chest or not:eek: Some may think I exaggerate, I do not. I am still very traumatised by a long sequence of events.

    It sounds like though your Dad received the best care and the paperwork was secondary to that, he was in good hands I'd say.

    Good to read he has settled back in his care home:)

    I sincerely hope you don't work in a hospital:eek:
  18. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Mum has a DNR.
    Resuscitation isnt at all like it is portrayed on TV in things like casualty - its actually quite brutal, often resulting in broken ribs and only a small proportion can actually be revived.
    I think there must have been some miscommunication because, whatever anybody says, the main fault of hospitals (born out IMO by posts on this forum) is that not that they tend to neglect patients with dementia, but that they tend to take heroic efforts to preserve life and want to do procedures that are, perhaps, not appropriate.
  19. Pete R

    Pete R Registered User

    Jul 26, 2014

    The whole post by AndreaP had absolutely nothing to do with the circumstances the OP found themselves in whose Dad was not in any way near "end of life". A DNR in these circumstances could have had catastrophic consequences.

    The DNR and end of life care are very different subjects indeed.
  20. bemused1

    bemused1 Registered User

    Mar 4, 2012
    You are obviously so much better informed than me. I was just expressing an opinion.

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