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    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
    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.

    Comment


      #3
      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

      Comment


        #4
        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.

        Comment


          #5
          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

          Comment


            #6
            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.

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

            Comment


              #7
              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
              •Medicines
              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
              MND Connect
              Contact us on 0808 802 6262 or at [email protected]

              Comment


                #8
                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

                Andy
                Warmly


                Andy

                ​Diagnosed 03/2015. One sided 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"

                Comment


                  #9
                  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

                  Comment


                    #10
                    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 Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      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.
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #12
                        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.

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

                        Comment


                          #13
                          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.

                          Comment


                            #14
                            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?
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              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
                              directive.


                              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
                              use.

                              �� 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
                              comfortable.


                              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
                              done!

                              �� 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
                              necklace.


                              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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