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Thread: Advance Decision to Refuse Treatment - End of Life Choices - may be distressing

  1. #1
    Forum Member Gillette's Avatar
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    Advance Decision to Refuse Treatment - End of Life Choices - may be distressing

    I'm starting this thread at Terry's suggestion. Please note that it is likely to contain discussion about sensitive issues concerning End of Life treatment choices.

    23D1B859-058D-44F8-AC6C-5B2E0D8B9014.jpg

    Ellie, I would be pleased to have the link showing detailed information about ADRTs, please. Also, I would be grateful for the information you offered about various treatments to be considered.

    I really do appreciate your offer of help about this issue. Thank you.
    Dina


    Trying to keep positive, but not always managing.

  2. #2
    Forum Member Terry's Avatar
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    Hi Dina;

    I have done a DNR, (Do not resuscitate) form, you should carry it with you. I got it done very soon after I was diagnosed, (nine years ago) because if I got hurt that bad or was so ill, I would not want to suffer or live any-longer.

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

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  3. #3
    Forum Member Ellie's Avatar
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    Exclamation Contains End Of Life Information.

    Hi Dina,

    (Unlike you, I was happily honking ZZZZs at 04.59 this morning!!)

    It's very important to say that;
    - everyone is different and people should not feel pressured into having an ADRT
    - an ADRT can be withdrawn or changed at any time
    - withdrawal or refusal of treatment(s) may differ according to your circumstances/state of health
    - an ADRT is legally binding


    This is the link to the detailed ADRT info from the MNDA website: https://dbsy278t81889.cloudfront.net...-treatment.pdf

    It covers one's wishes on feeding tubes, assisted ventilation, antibiotic use and CPR.

    However, it doesn't include the procedures involved if, for example, assisted ventilation is withdrawn - that's not within the remit of an ADRT but should be discussed with your Palliative Care Nurse/MND Nurse/Community Nurse and involves the use of meds to allieviate air hunger and any respiratory distress. These meds are usually given via a syringe driver.

    Non ADRT related: Something else to consider is donating your brain and spinal cord for MND research.

    Having some degree of control over our death and funeral is a strange 'benefit'of being diagnosed with a life limiting disease. Like you Dina, I have discussed all aspects of my end of live care, funeral and scattering of ashes with my family and have got those dates on which not to die It's strangely comforting...

    I'm sure I've missed out pertinent parts so please do ask questions which I, or someone else, can hopefully answer.

    Take care.

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

  4. #4
    Forum Member Kayleigh's Avatar
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    Hi Dina,

    I have read some information on the MNDA website covering the subjects of this thread, which I have found to be very informative and sensitively written.

    I have provided a link below to the webpage 'PLANNING AHEAD' which includes an introduction, as well as 4 dropdowns with information about:-

    - How can palliative or hospice care services help me?

    - How can end of life care help me?

    - How do I make and communicate my decisions? *

    - What is a digital legacy?

    * If you click on the link below and select the dropdown 'How do I make and communicate my decisions?' you will see that it includes links to the MNDA's 'END OF LIFE GUIDE', information sheet 14a about 'Advance Decision to Refuse Treatment' and an interactive version of the ADRT form.

    There seems to be a lot for us to think about and contemplate, but I found it very reassuring to read that we can get support and advice by contacting the MND Connect helpline and also from palliative care specialists and our local hospice.

    LINK TO: MNDA's webpage 'PLANNING AHEAD':-
    http://https://www.mndassociation.org/support-and-information/health-and-social-care-services-for-mnd/future-care/

    Love Kayleigh x

    P.S I don't think the gentleman pictured on the 'Planning Ahead' webpage is a very accurate representation of the ages of a lot of people faced with end of life decisions due to MND - I might be wrong but, to me, he looks like he could be in his 80's or older ... unlike him, I have very few wrinkles and also I am several decades younger than he is! (I'm not volunteering a photo of myself for the webpage though! )
    Last edited by Kayleigh; 28th July 2019 at 00:02.

  5. #5
    Thank you for starting this thread.

    Doug

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    Forum Member Gillette's Avatar
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    Quote Originally Posted by Ellie View Post
    An ADRT is legally binding

    Non ADRT related: Something else to consider is donating your brain and spinal cord for MND research.
    Hi Ellie,

    Thank you for all the information you shared in your reply.

    My understanding of the ADRT was that for it to be legally it has to be signed and witnessed. I think I also read somewhere about an ADRT being overridden in particular circumstances (it talked about a certain change that had taken place after the ADRT had been executed).

    I have already offered my brain and spinal column to my nearest research centre but they are not accepting any at present.
    Last edited by Gillette; 28th July 2019 at 00:47.
    Dina


    Trying to keep positive, but not always managing.

  7. #7
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Terry View Post
    Hi Dina;

    I have done a DNR, (Do not resuscitate) form, you should carry it with you. I got it done very soon after I was diagnosed, (nine years ago) because if I got hurt that bad or was so ill, I would not want to suffer or live any-longer.

    Love Terry
    Thanks, Terry,

    I have the lilac form - the Unified Do Not Attempt Cardio-Pulmonary Resuscitation. It was done soon after my diagnosis while I was still an in-patient. I have a copy in my purse, in the care agency's file and a copy in a couple of other places.
    Dina


    Trying to keep positive, but not always managing.

  8. #8
    Forum Member Gillette's Avatar
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    Hi Kayleigh,

    Thank you for giving so much helpful information in your reply. I can see I need to do a lot of reading.
    Dina


    Trying to keep positive, but not always managing.

  9. #9
    Forum Member Ellie's Avatar
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    Yes, that's correct Dina, an ADRT must be witnessed (ideally not by a family member or beneficiary in your will) to be legal.

    And yes, the ADRT can be ammended or withdrawn at any stage - changes must be witnessed.

    I cannot hold a pen so a person signed on my behalf and his signature was subject to witness - please note it may be different in other Jurisdictions.

    That's a shame about the brain donation but you're good to have thought of it.

    It's looking like you'll need a new handbag for all these forms you'll need to have on your person!! There are "Do Not Attempt CPR" wristbands, which although nothing like the CPR Decision Form, should prompt healthcare staff to look in your bag for the relevant form?

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

  10. #10
    Forum Member Terry's Avatar
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    Quote Originally Posted by Gillette View Post
    Thanks, Terry,

    I have the lilac form - the Unified Do Not Attempt Cardio-Pulmonary Resuscitation. It was done soon after my diagnosis while I was still an in-patient. I have a copy in my purse, in the care agency's file and a copy in a couple of other places.
    Thanks Dina,

    I think that I need to update my form and get more copies as mine is yellow.

    Love Terry

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