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    Dnr

    I got my DNR early as i do everything to do with my illness, big mistake. I noticed in Hospital that once they know you have a DNR they don't treat you the same. Why trouble with someone who has obviously given up? Please learn from my mistakes and leave the DNR for one of the last things you do. πŸ˜πŸ€—πŸ˜ŽπŸ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    matthew55 Oh no, that's terrible!

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      #3
      By definition that is completely the wrong approach. If you don't want a resuscitation and don't have it in place you may be resuscitated to a condition you don't want.

      You either want it or not.

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        #4
        True but there may be stuff you still want to do before final check out.
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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          #5
          For me getting a DNAR in place was a priority. I certainly don't want a team of medics working on me in such an aggressive & at times brutal manner....just let me go. πŸ™
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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            #6
            I appreciate the point you are making Matthew...because you may have periods of stability where you tick along. Also, if you became very ill with another condition, which was treatable, I would want that to be treated and not to be seen through the lens of solely the MND diagnosis. So it is not always completely clear cut.
            Very much an individual choice and dependent on how advanced the MND I guess, but on this basis I agree Matthew not to do early.

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              #7
              Hiya. Seems strange to be thinking about these final stages when I was only diagnosed 2 weeks ago and I am still walking and talking, but I must admit I have been considering the matter. My current thinking is that I would prefer to be allowed to fade away ("DNR") if I got to a certain point. I just hope I have the courage to stick to that decision when the time comes.
              May I ask - I have read the "Living with MND Guide" and section 11 mentions "Advance Decision to Refuse Treatment" (ADRT) documents. Are these used in combination with DNR's?
              Hi, I'm Eddie.
              Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
              Still walking and talking, and wondering what the future will bring.

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                #8
                Hubby was visited by his GP. He has an ADRT. He didn’t want a tracheotomy or to be fitted with a peg so that’s in there. He did say he wanted resuscitated. Anyhow the GP said they had decided to overrule that wish and they were in their rights to say so. He now has a DNR.
                Bit shocked by that though.

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                  #9
                  The DNR form isn't legally binding. The ADRT, which can include a DNR statement, is legally binding, although in some circumstances doctors may override them.
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  ​

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                    #10
                    Originally posted by Music man's wife View Post
                    Hubby was visited by his GP. He has an ADRT. He didn’t want a tracheotomy or to be fitted with a peg so that’s in there. He did say he wanted resuscitated. Anyhow the GP said they had decided to overrule that wish and they were in their rights to say so. He now has a DNR.
                    Bit shocked by that though.
                    Did the GP give an explanation as to why he was overriding that choice? Is it because hubby doesn't want the other procedures?
                    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                      #11
                      I filled out an Advanced Directive regarding my choices. This is a legal doc in the US notarized and official. I gave a copy to my caregiver and the ALS clinic so they already know what I want. I specified that my children/spouse can direct my medical care, but they cannot violate my wishes noted within the Directive.

                      I cannot understand why a doctor would defy anyone's end-of-life choices. In the US it would lead to litigation and possibly tie up the courts for years.

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                        #12
                        Suppose if someone is very ill and suffering then emergency services are going to turn up and try their best to save their patient.
                        there might not be time to go through paperwork and check legalities.

                        Can I imagine standing there waving a dnr saying this isnt what he wants. Lovely wife I'd look. Not that I'm fussed about that.

                        Cant be an easy call. When I've seen covid sufferers on TV and being asthmatic I've thought really I don't want that I'd rather fade away.

                        So they ignore the dnr or just get on with their job and save their patient. What happens next? Take them to court?

                        πŸ€”
                        when i can think of something profound i will update this.

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                          #13
                          The ambulance service in theory should know if there's an DNAR...via a shared care plan...I thinkπŸ€”
                          However I've known care homes not to have the DNAR to hand and therefore paramedics have resuscitated. Safeguarding raised against the care home.
                          I keep mine with my medical info which is kept in a visible place for medics....Also important they know the MND diagnosis re oxygen.πŸ‘πŸ»
                          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                            #14
                            Just know when I had to phone for an ambulance I couldn't even remember how to use my phone never mind what number to call. Panic took over I'm ashamed to say. 😳
                            when i can think of something profound i will update this.

                            Comment


                              #15
                              Originally posted by denise View Post
                              Just know when I had to phone for an ambulance I couldn't even remember how to use my phone never mind what number to call. Panic took over I'm ashamed to say. 😳
                              Nothing to be ashamed of...πŸ€—
                              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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