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DNR your choice?

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  • Doug Carpenter
    I hadn't thought about DNR in this way until now....

    A positive decision by a terminally ill patient NOT to have DNR marked on their records is equivalent to a request to medical staff to work a miracle - play God if you want to think of it in that way - and bring them back from the dead. Medical professionals and society at large are perfectly happy to support and comply with that decision.

    Yet an equally positive decision by a terminally ill patient in the opposite direction - to ask for medical support to end their life - is illegal.

    What a contradiction!


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  • Ellie
    Just to clarify for all - the body is NOT donated, just the brain & spinal cord, and it is totally voluntary.

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  • Guest's Avatar
    Guest replied
    Thanks for all the replies.
    We will definitely be bringing it up with the hospital at next appointment.
    I’m sorry, but I can’t even consider my grans body and brain being donated.
    I know we’ll all have to face it at some point, but I can’t right now. Bad enough seeing her fade before our eyes.
    Thanks again.

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  • Guest's Avatar
    Guest replied
    Don't know if the same laws regarding this subject apply in your country as it does here, but if they do here is some useful information to know and be aware about regarding this matter.

    CC xox

    Terms to Know

    �� Health Care Advance Directive – The generic term for any document that gives instructions about your
    health care and/or appoints someone to make medical treatment decisions for you if you cannot make
    them for yourself. Living Wills and Durable Powers of Attorney for Health Care are both types of Health
    Care Advance Directives.

    �� Living Will – A document in which you state your wishes about life-sustaining medical treatment if you
    are terminally ill, permanently unconscious, or in the end-stage of a fatal illness.

    �� Durable Power of Attorney for Health Care (or Health Care Proxy) – A document in which you appoint
    someone else to make medical treatment decisions for you if you cannot make them for yourself. The
    person you name is called your agent, proxy, representative, or surrogate. You can also include
    instructions for decision-making.

    Myth / Fact

    1. You must have a Living
    Will to stop treatment
    near the end of life.

    �� Treatment can be stopped without a Living Will if everyone involved
    agrees. However, without some kind of advance directive, decisions may
    be more difficult and disputes more likely

    �� The Durable Power of Attorney for Health Care is the more useful and
    versatile advance directive, because it applies to all health care decisions
    and empowers the person you name to make decisions for you in the way
    you want them made.

    �� Over 2/3 of the adult population have no Living Will or other advance

    2. You have to use your
    state’s statutory form
    for your advance
    directive to be valid.

    �� Most states do not require a particular form, but do require witnessing or
    other specific signing formalities.

    �� Even if your state requires a specific form, doctors still have a legal
    obligation to respect your treatment wishes, regardless of the form you

    �� Most official state forms are either worded too generally or include multiple
    choice options that may be too broad to guide decisions about the
    particular medical situation you may find yourself in near the end of life.

    �� The critical task is to clarify your values, beliefs, and particular wishes that
    you want others to follow if they must make decisions for you.

    3. Advance directives
    are legally binding,
    so doctors have to
    follow them.

    �� Advance directive laws merely give doctors and others immunity if they
    follow your valid advance directive.

    �� Doctors can always refuse to comply with your wishes if they have an
    objection of conscience or consider your wishes medically inappropriate.
    However, they may have an obligation to transfer you to another health
    care provider who will comply.

    �� The only reliable strategy is to discuss your values and wishes with your
    health care providers ahead of time, to make sure they are clear about
    what you want and are willing to support your wishes.

    4. An advance directive
    means “Do not treat.”

    �� An advance directive can express both what you want and don’t want.
    Never assume it simply means “Do not treat.” Even if you do not want
    treatment to cure you, you should always be kept reasonably pain free and

    5. If I name a health
    care proxy, I give up
    the right to make my
    own decisions.

    �� Naming a health care proxy or agent does not take away any of your
    authority. You always have the right, while you are still competent, to
    override the decision of your proxy or revoke the directive.

    �� If you do not name a proxy or agent, the likelihood of needing a courtappointed
    guardian grows greater, especially if there is disagreement
    regarding your treatment among your family and doctors.

    6. I should wait until I am
    sure about what I want
    before signing an
    advance directive
    �� No. Most of us have some ambivalence about what we would want, and
    that’s OK, because treatment near the end of life can be complicated. We
    can’t predict all the facts and circumstances that may face us in the future,
    and treatment wishes may change. You can, at least, appoint your proxy if
    you have someone whom you trust.

    7. Just talking to my
    doctor and family about
    what I want is not
    legally effective.

    �� Meaningful discussion with your doctor and family is actually the most
    important step. The question of what is “legally effective” is misleading,
    because even a legally effective document does not automatically carry
    out your wishes.

    �� The best strategy is to use a good health decisions workbook to help you
    clarify your wishes; talk with your physician, health care agent, and family
    about your wishes; put those wishes in writing in an advance directive; and
    make sure everyone has a copy.

    8. Once I give my
    doctor a signed copy of
    my directive, my task is

    �� No, you have just started. First, make sure your doctor understands and
    supports your wishes.

    �� Second, there is no guarantee that your directive will follow you in your
    medical record, especially if you are transferred from one facility to
    another. You or your proxy should always double-check to be sure your
    providers are aware of your directive and have a copy.

    �� Advance planning is an ongoing PROCESS. Review your wishes yearly or
    anytime your health or family status changes, make appropriate changes,
    and communicate those changes as needed.

    9. If I am living at home
    and do not want to be
    resuscitated by an EMS
    team if my heart or
    breathing stops, my
    advance directive must
    say so.

    �� Your advance directive will usually not help in this situation. If someone
    dials 9-1-1, EMS must attempt to resuscitate you and transport you to a
    hospital, UNLESS you have a special out-of-hospital DNR form or bracelet
    used in your state. This is not the same as your health care advance
    directive. In most states, both the patient and doctor must sign the special
    form and the patient then wears a special identification bracelet or

    10. Advance directives are
    only for old people.

    �� It is true that more older, rather than younger, people use advance
    directives, but every adult should have one. Younger adults actually have
    more at stake, because, if stricken by serious disease or accident, medical
    technology may keep them alive but insentient for decades. Some of the
    most well-known “right to die” cases arose from the experiences of young
    people (e.g., Karen Ann Quinlan, Nancy Cruzan) incapacitated by tragic
    illnesses or car accidents and maintained on life support.

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  • Ellie
    Every time I go into my Hospice I am asked a specific question on whether or not I want to be resuscitated in the event of a cardiac arrest.

    Personally, I'd be horrified if someone was asked this question on my behalf, but maybe that's just me?

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  • Guest's Avatar
    Guest replied
    When John was in the hospice while our building work was taking place the doctor called me in to say that if John went into cardiac arrest they would not intervene. No discussion had taken place with him (he didn’t want to know his life expectancy or discuss things like that) & the conversation I had with the doctor that day was an announcement rather than a duscussion.
    She explained her reasons perfectly & I left that meeting feeling that it would have been cruel to insist, even though I knew that John would not have voluntarily been DNA if he had been asked.
    Last edited by Smudge; 2 November 2018, 17:18.

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  • Barry52
    Thank you Ellie for advising the brain bank in Ireland.

    Hi Chris,

    I was referring to the brain and spinal cord, although tissue samples are also accepted. Sheffield are in the process of creating a consent form and once it is signed off I will advise a link.


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  • Ellie
    Hi Jee.

    Yes, it was insensitive and heartless of that Dr to make such a flippant unsolicited remark.

    But it is a discussion, however difficult that may be, that your Gran should have with her next of kin. (Not just your Gran, but everyone with an MND)

    Love Ellie.

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  • Ellie
    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.

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  • Guest's Avatar
    Guest replied
    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

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  • nunhead_man
    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


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  • MNDConnect
    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

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  • Barry52
    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.


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  • kd1
    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

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  • Lynne K
    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

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