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DNAR decisions for your loved ones

Discussion in 'Researchers, students and professionals' started by lfc17, Nov 8, 2017.

  1. lfc17

    lfc17 New member

    Nov 8, 2017
    Hi everyone, I am a 2nd year student nurse and I am coming across Alzheimers so much so I signed up here so I can learn more about it. From your points of view, the people that really have a connection but do not sometimes feel like you are listened to. As a student nurse, I don't know how you can all be so pleasant sometimes after the experiences I've seen about how family members and carers are treated when the professionals are talking about your loved ones. An area I am particularly interested in is around DNAR (do not attempt resuscitation), I am researching this as it is a situation that feels needs to change. When they deem 'no capacity'. How are your opinions received by professionals on what you know your loved ones would want?. I understand if nobody wants to share such personal experiences
  2. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    I haven’t experienced this yet (as far as dementia is concerned) ...but with my late husband, I was asked if we wanted this...I was standing in a busy corridor and my daughter (16 at the time) was with me, and still remembers it. It was so crassly done. And unnecessary...our wishes were already recorded on the paperwork.
  3. lfc17

    lfc17 New member

    Nov 8, 2017
    Thank you so much for your response. It is reasons like that I really want to research it further, I feel like it is such a huge decision and an emotional one. As human beings we are never ready to let someone go, to make that decision must be so hard. Especially to have it dealt with in such a cold way. That truly is horrible
  4. LadyA

    LadyA Volunteer Host

    Oct 19, 2009
    I'm not in the UK, but I couldn't fault the A&E doctors that dealt with this the only time my husband was admitted to hospital.
  5. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    I'm in the States, so my experience may not be what you're looking for.

    My mother has Alzheimer's and is 75. She was in hospital earlier this year after a fall (fractured L patella, needed surgical repair, a week in hospital, 6 weeks or so in rehabilitation centre, then back to her regular care home.)

    Generally staff members in hospital are understanding of her not having capacity. I carry a note explaining the situation, and stating who I am (daughter and PoA) and asking them to speak to me privately out of her sight and hearing. The only person to disregard this was the social worker at the hospital where my mother was taken to A&E/the ER. That social worker was unbelievable. My mother's hostess mode is still pretty good, considering how advanced her dementia is, but still.

    Specifically regarding a DNAR order, I have that and other related paperwork and the PoA on file at the hospitals where my mother has been treated, so I've never had anyone questioning the paperwork or my authority.

    I did have an unpleasant discussion with a floor nurse before my mother went for surgery, as this hospital won't honor a DNR order during surgery. I knew that was likely the case and I understand the policy, but it was not explained to me in a kind or compassionate way and it was mildly upsetting.

    I have certainly heard a number of stories here on TP and hope you will get the information you are seeking.
  6. DeMartin

    DeMartin Registered User

    Jul 4, 2017
    My dad has mixed dementia, he’s always been practical, realistic. His second wife, my stepmother died of dementia. He did POA, will etc, wanted his body left to science. Now he’s frail, barely able to walk, unaware of who I and other close family members are.
    As a family, we, grandchildren and I have decided that he would not want excessive intervention, and have DNAR in place.
    I was a nurse and have seen the effects of medical intervention that may have been inappropriate. It is difficult for relatives to suddenly to have to make this decision. It needs a private, gentle approach.
  7. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    DeMartin raises a good point, about a private and gentle and considered approach. I think I was mainly upset with the nurse telling me my mother's DNR order would be suspended for surgery, because I was told as an afterthought, in a busy hallway, and it was clear the topic was not open to discussion. A change in approach and a slightly less public venue would have made all the difference.

    When my FIL was dying in hospital last year, I saw first hand how difficult it it for family to have to make tough decisions about end of life care. Although I'm glad to say that my FIL and the family were always handled with compassion, kindness, and unfailing professionalism.
  8. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    I knew my dads pre dementia DnR views so that made putting it in place an easy decision for me and it was noted early on with GP when still at home and different GP when in nursing home. During that time he had an operation and dnr was fully discussed with me by surgeon and anaesthetist and my reasons for DNR were asked for...I had poa for dad, both very kind and helpful. Then again at end of life, first week in hospital and then at his nursing home who obviously knew the dnr was in place where a week later he came to end of life. My impression was that the medics were relieved we as a family were prepared and had already fully discussed scenarios for dad where it wouldn't be appropriate or kind to resuscitate. However they also prior to his operation stressed that if in recovery post op he needed help or intervention that was not heart related he would be fully supported so my experiences were good overall.
  9. yak55

    yak55 Registered User

    Jun 15, 2015
    Hi, I have a DNR in place for my Mum. It's something she had spoke about before her Alzheimer's got too advanced and after two visits to our GP he decided and agreed that it would be in Mums best interest to have it in place and we are all glad it is. All you want for your loved ones is for them to pass peacefully when the time comes and having heard some terrible and sad stories of people being brought back just to suffer unnecessarily only to die in the end is heartbreaking.
  10. Lawson58

    Lawson58 Registered User

    Aug 1, 2014
    Victoria, Australia
    Almost four years ago, my husband had a cardiac arrest at home which was a truly dreadful experience. I was able to give him CPR until the paramedics arrived and used the defibrillator to get his heart started again.

    The next morning the Director of the ICU came and found me and spent half an hour with me going over the situation with my husband who at that time was in an induced coma. He explained all the details of what was happening and what the possible outcomes were for my husband, from dying, the potential for brain damage or hopefully for a good recovery. Then came the scary bit when we talked about what the options were and the fact that I might have to make a couple of huge decisions in the next two or three days.

    The first thing was that he treated us and our situation with complete respect and he took the time to make sure that I was well informed about all the essential things. He was honest but compassionate and made himself available if I had any further questions. Fortunately, my husband survived but I still carry much of that conversation with me.

    A few weeks after he came home from hospital, I brought up the subject of DNR with my husband but there was no way he would have any discussion about the matter. That was prior to his AD diagnosis and I have given up trying to find out what he thinks about it or what his he's would be.

    The Director of ICU was obviously highly experienced in dealing with relatives under great stress but I really do appreciate the approach and care he took in spite of his busy schedule.

    And well done to our student nurse for taking the interest in a difficult question.
  11. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    Mum went in for an exploratory procedure, slight sedation to make her comfortable, or as comfortable as having a camera inserted can be.

    Mum was very anxious about the whole thing, worried about what they might find, so a casual “do you have a DNR” as she was on her way in, on a trolly, in the corridor, was not my idea of considerate.
  12. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    I felt it was handled very well by a consultant in an elderly rapid assessment ward following admission to a and e. Dad has numerous co morbidites and now advanced vascular dementia. The consultant either struck lucky or by design but managed to catch both my brother and I at the same time when we were alone. Neither of us had expressed our views to each other but forunately both felt the same and agreed a DNAR should be in place. The time seemed appropriate and we were caught in a private environment with no one else overhearing. I think it is important that the question is put directly and clearly without fudging around the issue in question.
  13. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    My dad arranged with his GP to set up a DNAR but as he already had a diagnosis of dementia I got a call from GP asking if I thought dad had capacity to make this decision. I was already registered as the go to person by dad if anything happened. The GP was sensitive in the way he handled the conversation,saying he was sorry he knew how upsetting that's conversations could be but he didn't want to put a DNAR in place if I felt dad didn't understand the full implications.
  14. Twodimensions

    Twodimensions Registered User

    Apr 6, 2014
  15. Twodimensions

    Twodimensions Registered User

    Apr 6, 2014
    #15 Twodimensions, Nov 14, 2017
    Last edited: Nov 14, 2017
    Dear Lfc - so good to read your post.

    On Saturday my mother had another fall at the care home. She’s had a few this year and each time the doctor says we need to get her to A&E.

    I HATE A&E!

    It’s no place for an elderly person, bright noisy and unpleasant, where you can wait hours to be seen, after waiting hours for an ambulance. Luckily Saturday night at midnight was very quiet so it went OK and the staff were great, especially the ones who changed her.

    What I found really disconcerting was being asked by everyone who saw her if she has a DNR. (She does). Without any context around the question, I felt I had given my mum a death sentence and there was a likelihood she would die that night.

    It’s so ambiguous and unhelpful to ask without the context - which is of course not an easy topic to approach! But why was I being asked so many times?

    I wondered if it meant they would not pull her out of anaesthesia - so there I was in an assumption they would!! No confirmation and nobody to ask.

    Once surgery was complete a couple of days later, a doctor explained in more detail which was helpful. Resus can be putting in a breathing tube, a feeding tube if you can no longer eat, as well as cardiac massage. None of those come into my idea of a dignified exit. I was relieved to have that clarified in a supportive and caring way, after three days of emotional fretting.

    It’s a hard thing to do but while my mum is still smiling (even though she can’t communicate verbally) I feel we have today and tomorrow is another day.
  16. Slugsta

    Slugsta Registered User

    My mother was taken into A+E after a series of falls. The consultant took OH and I into a side room to discuss Mum's general condition, home situation and whether we had discussed DNAR. I explained that Mum and I held different views - as PoA it was my duty to represent Mum's views but I also explained how I felt. The consultant was very kind and made it clear that the eventual decision, and responsibility, was hers. DNAR was duly recorded on Mum's records and this followed her to her carehome when she was discharged.
  17. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    Wow! That was done sensitively, wasn’t it? I hope this is a comfort to you now. I know, I looked back on the care my parents received and still find it a comfort now.
  18. Raggedrobin

    Raggedrobin Registered User

    Jan 20, 2014
    I knew my mother's pre-dementia decision was that she wanted DNR so I made sure the nursing home had that on record, with the GP's agreement.
    When she has gone into hospital with broken hips the staff have checked she is DNR, admittedly in a busy corridor but I was not bothered by that.

    However I have a friend who was asked about DNR when his mother was seriously ill in hospital. He was horrified that they asked about it within hearing distance of his mother, even though she was a bit 'out' of it. The other thing it raised for me was that my friend, and so many people, don't understand exactly what a DNR do means, he assumed it meant they wouldn't bother to try to heal his mother. So few people understand the specific situation in which it is used.

    I think it would be good if all people over a certain age, or relatives of those with dementia, had to talk to the GP and have what exactly DNR means explained to them and make the decision when it is not an emergency. Possibly giving yet another task to GPs is not ideal but there needs to be more education on this subject. At the moment the info is out there but only for people who seek it out.

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