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Thread: DNR your choice?

  1. #1

    DNR your choice?

    Hi everyone,
    My gran was diagnosed with bulbar onset mnd in January. She’s already struggling a lot to talk, chokes and has agreed to have a peg tube placed for when she needs it. Her limbs are all still working fine.
    Recently while in hospital a doctor told her in a quite offhand manner that ‘obviously she wouldn’t be resuscitated because of her condition, if it came to that’
    Does anyone know if this is true?? I thought this was the individuals choice and not taken out of their hands by a Dr?
    Or does it depend on what the person is suffering from?
    Thanks for any information.

  2. #2
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi jee;

    It is up to the person concerned and needs to be a completed form carried or produced and the relevant time.

    I have had a completed form for eight years now, and many of us do not want to be resuscitated should it come to that.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
    Forum Member Tim-griffiths's Avatar
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    Oct 2017
    Lambourn Berkshire england
    I believe it's the choice of the patient, my wife agreed for her doctor to put the DNR into place and this was done about 5 months after diagnosis when we were requested to fill in a will of life ? ( I think that's what it was called ) basically stating what my wife's wishes were
    Tim and Mary

  4. #4
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Jee, that doctor has a nerve. It is not his decision to make. I'd like somebody to report him but we probably aren't strong enough to have such complaint battles, well I don't feel so. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  5. #5
    Forum Member
    Join Date
    May 2018
    I don't know if this is helpful but I was told by the ventilation consulltant that a person with MND and breathing difficulties would never come off a ventilator if resuscitated. Kate

  6. #6
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Hi Jee,

    I feel that the doctor was out of order and should be reported. As others have said it is the patient who has the choice. Like Terry, I have an advanced decision to refuse treatment known commonly as ADRT. Of course you can also have an advanced care plan which may say the patient wants all medical aids i.e. feeding tube and resuscitation.

    Whilst on this subject one can also consider organ donation. In England and Wales there is a brain bank which uses the postmortem donated organs for research into a cure.

    I’m going to do this even if it kills me!

  7. #7
    Forum Moderator MNDConnect's Avatar
    Join Date
    Mar 2016
    Dear Jee,

    A DNR order allows you to choose whether or not you want CPR in an emergency. It is specific about CPR. CPR is the treatment you receive should your blood flow or breathing stop. Treatment is usually by:
    •Simple efforts such as mouth-to-mouth breathing and pressing on the chest
    •Electric shock to restart the heart
    •Breathing tubes to open the airway
    It is your right to choose whether you sign a DNR or not and the discussion about what is right for you should be had with your healthcare provider.

    With kind regards
    Jacqui Anderson
    Senior MND Connect Adviser

  8. #8
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Quote Originally Posted by Barry52 View Post
    Whilst on this subject one can also consider organ donation. In England and Wales there is a brain bank which uses the postmortem donated organs for research into a cure.Barry
    I need to have a look at the Motor Neurone Disease Association magazine again.

    There was article in it this time about organ donation, saying, I believe, but generally organs will not be accepted for donation from people with motor neurone disease but that there is a separate process for offering your tissue for research post-mortem

    Perhaps somebody has the magazine in front of them can check it and come back here?

    Best all



    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  9. #9
    Forum Member
    Join Date
    Dec 2017
    Hi Andy
    Just had a look in magazine and it is indeed a separate process , and it is a tissue donation with a brain bank . I think it is what Barry meant but instead of saying tissue he said organ but the same principle really !

    Love Chris

  10. #10
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    The brain & spinal cord are the "tissue" / "organ" which may be donated for research into MND.

    Such donations need to be organised in advance for consent etc.

    (There's also a Brain Bank in Ireland.)

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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