How To Get Off The Organ Donor Registry

March 27, 2013 — 24 Comments

How to get off the organ donor registry

The other night I got an email from someone and they asked me how to get off the Organ Donor registry. They were not the first to ask. I suspect that to happen as more people find out the truth about “brain death”… that you are still alive when you are pronounced “brain dead”.

First, rescinding your desire to donate your organs at the DMV or Secretary of State is NOT enough,you will still be on the organ donor registry.

Revocation is not enough, you must document a Refusal. 

The Revised Anatomical Gift Act, Section 8, takes away from families the right or authority to consent to, amend or revoke anatomical donations made by others during their lifetimes, even though alert relatives might make different decisions based on current circumstances and complete information of their loved ones. Byrne,Paul.M.D. Do Your Organs Belong To The Government. 2012

The Revised Anatomical Gift Act states that a revocation of an anatomical gift “does not equal a refusal.” If you change your mind and want to get off the organ registry; you not only have to revoke your prior anatomical gift, but also issue a Formal Refusal. 

How to Write a Formal Refusal

1) Write or type up a letter, (two copies) stating you no longer want to be on the Organ Donation Registry.

2)  Have it signed by two witnesses, have it sign by a notary and send to your Regional Organ Procurement Organization.

3)  Keep a copy for yourself. Take it with you when you travel. It has to be put in YOUR file at the hospital if you are ever injured and can not speak for yourself.

4)  Have it accessible to other family members.

If you have registered in two or more states and change your mind about donation, be sure to remove yourself from ALL donor registries.

One other thing, tell your family and friends of your decision, why you are not going to be an Organ Donor. They will be asked “what you would have wanted if you are on a ventilator.

Classes of People

The Revised Anatomical Gift Act allows for certain “classes” of people to make the decision to harvest your organs if you have not donated.

Permission descends from the highest class of people to the next and so forth when a search is done for someone who is “reasonably available”. They did not define “reasonably available” in the Act.

That list includes the person’s health care agent, adult grandchildren and close friends.

One of my friends son’s was hit by a car walking home from work in Ann Arbor. The doctors at U of M told her he was “brain death”, to pull the plug and harvest his organs. She called me up two years ago before I knew anything about “brain death” and ask me to pray with her and what she should do.

We prayed together and then I said, ” _______ you are ______ mom, you know best…go with your gut.”

She refused to take him off life support. Then they started asking his friends, “Did _____ ever tell you he didn’t want to be on life support?”

My friend’s son is fine, walks, talks and works. I’m interviewing them and will be doing a blog post on what they experienced.

Thank God I gave her that answer as I didn’t understand one thing about “brain death” at that time. I post a lot of Friday success stories yet you really don’t hear much about them in the United States. I have a recent one coming on Friday that is mind-blowing.

Here are the cards you need to sign, get notarized and “carry” with you.

Print this card and carry it with you

Back side of card

I can send them to you in a pdf file on how to preserve and protect life and sign a refusal for easier printing if you email me or ask for me to send it to you in a comment below.

Better yet go to Life Guardian Foundation and download it.

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24 responses to How To Get Off The Organ Donor Registry

  1. Hi Melissa-

    Are you still able to send the cards in PDF format? I would really appreciate it.
    Not sure if my email address comes up from writing this comment. If not, could you respond to this comment and I’ll put it in another comment.

    I also want to make sure you’re still sending the cards out because this is a pretty old article.

    Do you have a template for the letter to send in?

    Also do you know if there is a way to verify if you’ve been removed from the list once the letter is sent in?

    Thank you for any help you can provide with this. And thank you for the post informing people.

  2. Hello, can u pls send me copy’s as well.
    tks God bless.

  3. Health Care
    A resource for the Catholic health ministry high lights of the article (disagree on whether or not that donor is dead, they do not
    agree on the same strategy for increasing the number of
    organ donations, and this is insightful. Veatch claims that
    doing away with the dead donor rule, as Koppleman sug-
    gests, would require too many legal changes and weaken
    societal prohibitions on killing. He concludes it would be
    easier and less controversial to simply change the definition
    of death so more people fit the dead donor rule as a way of
    procuring more deceased donations.
    That, it seems to me,
    reveals a clearly utilitarian approach toward increasing the
    number of organ donations.
    Robert Troug offers an interesting twist to this d

  4. Body wranglers at work: Inside the global trade in human corpses

    By Kate Willson, Vlad Lavrov, Martina Keller, Thomas Maier and Gerard Ryle
    The International Consortium of Investigative Journalists

    • They say after a tragedy , dont make any major decision for a year but , if you arent a signed donor and your loved one has had a horrific accident they want you in a split second to decide the donor card right then ( unfortunately my son and nephew had given written consent ) and all we got was a funeral and a hand print , :'(

  5. The argument oh i don’t believe that happens here not where I live , they don’t do that ,some by the grace of God wake up before they administer the drugs into their system the paralyzing drug you dont want any other signs of life , as a beating heart and kidney working and the lists go on . The brain controls everything are blood heart etc . You tell me if the brain isnt getting any of this blood , then how is it the heart , is working the kidneys are working on and on , the blood runs thru it all it doesnt stop , it has to or the body would die right then , cut off the blood from your hand or foot it will eventually die , but the brain has to have blood running thru to tell our bodies to function . Loved ones who have signed the dotted line for donor if the accident didnt kill them the donor program will fact! You have a fighting chance maybe if you ar not a donor , at least you have a chance , but as Melissa has researched they are changing that to by hospital policies . To me if 2 are saved from this nightmare it is worth it or even one life spared . Would you go to a house that is on fire and 7 people are in it , but the chance of all be saved from the fire isnt going to happen only one can be saved , isnt it worth it to save the one .God have mercy on us all .

  6. Fact the organ donor program is about big money a business , they are very good at marketing show someone who is on the receiving end dancing around living with our loved ones organs who weren’t thru with their life or the very organs they used to live . Hopefully your loved ones will do alot of research and then some more as they sign up for giving up their lives , their organs,Sad to say I never got to talk to my nephew I tried to talk to all my family and friends but as I come to realize we dont always have time , my nephew and my family had to relive the horrible horrible nightmare My son and my husband my daughter and my sons friends lived May 15 2011 as I watched my son my child , foot moved over and over again as I would just lightly tickle and his foot moved over and over again didnt matter .People get sick with cancer and so many diseases we hate to lose our loved I have lost quite a few to many diseases but the most horrific is the last 2 . My son was such a very smart young man , yet he did not research the donor program . Why I ask myself ? I dont have that answer or never will .My son and my nephew had such giving loving hearts sad to say that was to their destruction .I thank God for Melissa and what she is doing , its to late for my son Rob 32 yrs old and my nephew Mike 33 yrs . Will it be to late for you or your loved ones ? People are and always be kinda predictable . You try to warn them after experiences in little matters and big ones you give advise . Yet they still dont heed . I’m sure we all have given advise as we walk thru this life at one time or other and sure enough they don’t listen no matter what the subject is ,They think it will be different . We can tell them hey been there don’t walk to near the edge or you will fall off , no they won’t fall off they say . . Then we stand back and often say told you tried to warn you . Flip side of Donor program Im on that side Yes I have a sadness for those who are sick whether its any dreaded disease or ailing organ its their loved one . As they are praying please give them a lung , heart , kidney , bone marrow etc.. In reality they are praying for My loved one to have an accident or your loved one to have an accident so they can have that life sustaining organ or organs their loved one needs . Someone else said to me oh I dont think they are praying for that , well truth how else are they goin to get these organs ?? Brain dead is a theory to fulfill a quota to supply the high demand so they needed a way that is deceiving but looks so good , they are doing so good , Give the give of life they say what a good slogan , marketing , poster child .. They are exchanging someones life for another my loved ones were and are Just as important as those who need these organs , but it is more profitable to kill those who are in accidents who might be a deficit , to those who will become an asset costs big bucks to receive these organs of our loved ones ,gift are supposed to be free yea right ,

  7. Hi Missy,
    You have been instrumental in pulling together a lot of things I suspected but never knew for sure. The loss you have suffered is beyond compare, and I am thankful you chose to give the rest of us the gift of knowing that were beyond your grasp at one time. If you are still sending pdf’s, I would appreciate them. books(dot)n(dot)coffee(at)gmail(dot)com.

  8. Missy,
    Can you send me both of these via pdf? I want to get this done ASAP.
    Miss you!

  9. Missy – thanks for sending me the cards. I have struggled with this issue for several years, and reading your post and what happened to your friend’s son put into actual words what has been bubbling inside me for some time. Thank you

    • Thanks Ann, the truth has been there for decades, thanks to Doctors like Paul Byrne but it kept quiet so most don’t have a clue until too late while they are in a traumatic situation.

  10. Missy, what would you say about people who still want to donate after I tell them about brain death? My youngest daughter is graduating from Purdue nursing program next month and my husband, as you know, is a Hospice Chaplain. They argue that this is not the only way things happen and the percentages of those who ever recover or survival are minuscule. They don’t want to revoke their decision, but certainly understand those who do. I don’t ever want to have to say goodbye to any of them before they have stopped breathing. I stayed with my step dad for hours after he was gone until the coroner came to take his body. They say this is not what happens in the hospitals here. The family can say no up until the last minute and that some organs can be extracted after the person goes into cardiac death. I’m so torn.

    • I’m going to be posting soon on Death by Cardiac arrest and what is really involved, how long they wait. The big issue for me is that our beginning of life (our first breath) and the end of life (our last breath) should be in God’s hands. Life or the quality of life is the thing to think about, “quality of life” and the “cost of treatment” are two things that most doctors take into consideration. There is much more money for doctors and hospitals in organ retrieval than keeping a person alive. It is not true that those who survive are minuscule, it is just not reported here in the U.S and they simply do not give the patient TIME to recover with all the therapies available. The doctors all say you are “hopeless” but many recover if treated right with cooling therapy.

      If they choose to stay on the Organ Donor list, unfortunately there is not anything you can do as they are adults and their decision will be honored. Since your daughter is almost finished with nursing school, ask her to observe a Organ Retrieval surgery she would probably change her mind about if they are alive or dead.

      I know you live in a small town and perhaps you can say no up until the end, but that is rare as hospitals that receive federal funding must report when a person is in a coma or they could loose their funding. You must know what drugs they are giving your loved one whether they are to help the patient or per long the organs and DO NOT allow them to do the apnea test.

      • No argument with God giving breath and taking it away. I’m sure they agree with you on that. My husband witnesses death multiple times a week. He works for the largest hospital system here in Indianapolis with multiple locations throughout the state as well as well as all the patients who die at home. Its hard to argue with him on what he frequently sees happen or when you have a friend who is only alive today because someone else donated their organs.

        • Carol, you have to remember Mike is probably not seeing young people injured, severely injured in accidents but not dead. When you are old, or sick the best thing is to have a life directive for how you want to be cared for. It is not wrong to NOT have extra-ordinary measure taken to preserve your life.

          I do believe providing food and water is not extra-ordinary but is providing care. The majority of people whose organs are taken are young between 16-35 they are very valuable.

          I also do not think giving overdoses of morphine is morally right where a patient slips away.

          • Hospice cares for patients of all ages. The patients at home are typically those with cancer or long term illnesses and the hospital patients are typically those with injuries or newborns struggling to survive. The children are always the most difficult to watch emotionally. If you limit it to MVAs, then I totally agree with you and also not wanting to make that decision in the midst of a traumatic situation. we witnessed the death of a young woman who was extubated within 48 hours of an MVA. She took her last breath within an hour of extubation. That is where I really would NOT be able to do it so quickly for a family member. Thanks for sharing so many important things to think about!

            Much love to your family! Enjoy the weekend!

    • Many people love to believe a beautiful lie , rather than the ugly truth . I have had 2 one year apart 2 different states on how they treat your loved ones who were donors . the one state Az took their shoes off as they walked over my son and us . The other state IN just walked all over us yes i Lafayette IN , i didnt think AZ Donor could be topped and I didnt think a year later we would be dealing with this horrific nightmare again 2012 . Yes it does happen and NO you do not have a say it is a legal binding contract as you watch your loved one take that last trip toward their demise . People think it will never happen to them and I hope it doesnt but the sad truth it does and it can .. The animal kingdom prey on the weak , sick and old . Well us as humans do the same

  11. Hi Missy – just dawned on me Melissa and Missy…

  12. Hi Melissa – I would appreciate if you could send those to me. I am glad you wrote this post, and I’m glad I saw Missy’s tweet tonight about your post. I know organ donation is a wonderful thing, however I fear what almost happened to your friend’s son as well.

    Thank you for sharing this info.

Would love to hear your thoughts...