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My DH and I are both 60 and POAs for each other. I never was listed as a. Organ donor, but he’s always checked the box. I’ve told him already that I will not be cooperating should he be on life support and taken off just so a recipients family can be told they get his heart, his liver or whatever if he dies within the requisite 30 minutes while they, the recipient family, are appraised as to his condition while directing their incipient, incessant prayers that the “lords will be done” when their focus is THEIR loved one, not mine. This conflict of interest at such a stressful time is not something I want to deal with.
So my question is, if he remains a potential donor per DMV and I as his POA refuse to let him remain on life support for this purpose, must the doctors do what I say?

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Actually, it is quite easy to get removed as a donor with very little time and very little effort!

1) Request removal online at https://register.donatelifecalifornia.org/remove/login

2) Request removal by email at [email protected] and follow their reply instructions.

3) Send a physical letter to:
Donate Life California
3940 Industrial Blvd.
West Sacramento, CA 95691

4) Call them at (866) 797-2366

Put a sticker on the driver's license that says "not an organ donor". The next time DH renews his license (sooner if he pays for another license or later at standard renewal), it will already be removed from the DMV database showing DH as a donor and the little dot be gone on the new license.

POA worries solved.
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PeggySue2020 Sep 2, 2024
Well, their ai verification failed, and they also failed to answer the phone. I’m thinking that a physical letter to both them and Kaiser are next steps.
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Peggy I bet you will be glad when this holiday weekend is over so you can start making phone calls and taking action. Why it problems always happen during a long 3 day weekend or holiday?
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Oh Peggy Sue

Here is the process for legislative changes in the state of Ca.

https://www.counties.org/sites/main/files/file-attachments/v2-tab5_-_legislative_advocacy.pdf

Here is the list of current Ca. Senators with their phone numbers and addresses and a link to find your representative who might advise you.

https://www.senate.ca.gov/senators

Under the Citizens Guide found on the home page you will find a printable flyer you can use as a handout for when you set up your card table in front of your grocery store or over at the senior center or in front of DMV offices or at the PTA meetings. (Do they still have those?). For sure you can use social media to help you find your people who are passionate about your cause.

On this flyer the very first square shows how it all starts with a “concerned citizen” that would be you, PEGGY SUE. Then it goes to your SENATOR. I looked but I didn’t see AGING CARE FORUM, anywhere on this flow chart of how a law gets from CONCERNED CITIZEN to BECOMES LAW so your considerable activist passion might be misspent here when it looks like most of us aren’t CA voters and don’t have the problem you have uncovered.

You have found your CAUSE, now go find your PEOPLE. (This crowd is getting restless).

I might leave out that part about dueling prayers for loved ones. Reminded me of that part of the movie (Bruce Almighty) where Jim Carey (playing the part of GOD)let all the people actually win who were praying to win the lottery (pitiful payout) or the ball games (all games were tied).

Or just slip it in to your pitch selectively. Depending on your crowd. 😇

Let us know the name of the bill when you get it going. We can follow the progress here on this link.

https://legiscan.com/CA/legislation


Good luck.

Oh and I just checked. They have a link where you can look up existing bills in the process. There are currently 225 for “organ donation”. 😱🙂

May be too late to get the bill named for you but you might have a head start on finding your people.

https://leginfo.legislature.ca.gov/faces/billSearchClient.xhtml?session_year=20232024&keyword=%E2%80%9COrgan%2520donation%E2%80%9D&house=Both&author=All&lawCode=All
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PeggySue2020 Sep 2, 2024
This is good information, but it should not take a political movement, and I don’t have the half million it would even take to raise this. I’m not a politician.
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I think this discussion has gone its course. Time to ask that it be shut down.
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PeggySue2020 Sep 1, 2024
Why, Joann? The fact is that it shouldn’t trigger anyone to just know how to get off the list once you are on it. It’s not simple at all. The situation is evolving. Maybe the emergent solution will help another poster.

I also think that a definitive discussion needs to be held between potential donors and their families on what exactly the latter’s obligations are. It’s not like I’m saying that no one should do it, I’m just very much saying that a conversation should be had.
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Peggy Sue, I talked about this with my DH tonight, and we both had exactly the same view: organ donation is a good thing, but it should be easy to change your mind about it. If that was the law, would it satisfy you?
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PeggySue2020 Sep 1, 2024
It would satisfy me 100 percent, Margaret. I have never disputed that organ donation saves lives, but I think the donors and their family should be educated on what it entails. I also think that the original decision should not be made by minor children in any circumstance,
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Peggy while you try to reach them by phone I would send a certified letter with a return receipt so you have proof of delivery by an actual human from DH with the request to be removed as a donor effective and put the date. I might even go so far as to write the letter and get both copies notarized - two copies one for them and one for DH ( this way DH has an original and they do also) included in the letter to make it more official.
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PeggySue2020 Aug 31, 2024
This is among the best ideas. Dh actually has a notary on site.
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No disrespect to anyone intended, but whether or not to donate should always be up to the individual donor, IMO. There should be a mechanism for changing one's status, and I'm sure there is--if one can figure out/wade through the red tape. Isn't that usually the case? As far as we are concerned it's likely a moot point: who would want a body part from a 94 Y/O (my spouse) or 87 Y/O (me)? Our organs are pretty much past their "use by" date!
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PeggySue2020 Aug 31, 2024
Any body is valuable if donated. With age and ongoing conditions, donations tend to go to research. If dh wants to donate my corpse to a medical school, I’d be ok with it as the scenario would be my dying naturally without the donor walk, the 30 minutes, the spiritual praying energy from recipients and said recipients reaching out with letters
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Peggy, I wanted to say, "Praise The Lord that your husband is okay after his terrible accident. I pray that he has no long term ill effects."
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PeggySue, if you are correct about the problems in getting off the DV donor’s list, why keep posting about it to us? This forum has absolutely no power to change the system. Use your energy to contact politicians who DO have the power to investigate and make the changes you want.
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PeggySue2020 Aug 31, 2024
Well I don’t know Margaret, but it sure seems to me that many posters are on here with observations about how unfair Medicaid is, for example. We don’t just shut them off and tell them to complain to Kamala, for example.

We have a legitimate complaint, that being that there is not a transparent process to remove him. Alva’s advice was decent in that a witnessed letter placed in his chart should be enough, but then we have Mac saying that she’s seen families actually be forced into this by that donor marker on his dl.

Once a person decides that they don’t want to be a donor, the legal recording of this fact should be as painless as possible. We should not even have to lobby our politicians over the nonprofits failure to even respond.

Now, Margaret, if you yourself have chosen to become a donor, your family should be ok with the 30 minutes, the donor walk, the recipient family’s prayerful energy and them reaching out to your fam with letters. If you’re fine with that, great and I honor your choice. I however feel the opposite and request similar tolerance for my choice as opposed to being shamed by recipient families who benefited, especially the one thst volunteered that the donors family was not on board. Did she make the decision as a child too and then have it roll over, out of sight out of mind? Was she cognizant of the burden this put on the donor family? Because most kids are not.
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As I scroll through these responses, I do not hear a kind word from either side of the debate. While each side has a right to their feelings, please have respect an empathy for the OTHER. This is a very personal decision. This debate is multifactorial. Donation of organs not only can save a life, but it can also be valuable in the research of disease and development of pharmaceutical products.

From my own perspective I speak from a laboratory research background in pathology. I have been in the autopsy room and have handled all types of human autopsied organs and tissue including whole brains. Never have I heard a word of disrespect from a MD or principal investigator. Our Pharmaceutical research in part depends on stored tissue from tissue banks nationwide. While some of the tissue is cadaver or animal it also includes tissue that has been biopsied or removed such as whole breast, lung and kidney. Patients have a right to decline donations and request that tissue be destroyed. Many other people do not mind and consent for the sake of research. Yes, this tissue can be sold to research facilities.

For those who may be interested in both the human cost and the scientific benefits to society. I recommend reading the " The Immortal Life of Henrietta Lacks" by Rebecca Skloot. (a remarkable investigative nonfiction work)

In closing, please know that I have three friends and one family member who are alive because of organ donation. My prayers and good thoughts are for both sides of this debate.
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Anxietynacy Aug 31, 2024
Beautiful book, and movie, book is so much better!!
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This question has become ridiculous.
PeggySue, I am a California Resident.
The easiest way in California to remove your own name as donor is to GO TO THE DMV and do so.

I hope the admins will consider closing this question to discussion, myself.
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PeggySue2020 Aug 31, 2024
We CANT Alva. The dmv no longer handles this. The info was ported to donatelifecalifornia.com which is the arbiter. Their ai for removal failed, and they don’t answer the phone.

Pro donation people have had their say here. Thats fine but my advice question stands. He wants off Californias donor list and the agency in charge is not letting him go.
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@PeggySue your husband almost dying when his car caught on fire was traumatic. It really brings life and death to our consciousness when we realize how close we all are to our lives ending in the blink of an eye.

Couple that with your wanting him off the donor registry, him agreeing and then your finding out that it is not as simple as they claim on their website to just log in and get him removed is upsetting.

Unfortunately with the holiday weekend you will just have to chill until Tuesday, have him call the 800# so he can remove his name from the registry. Expect that they will say it will take 7 -14 days for this to happen (because they can). I imagine he will have to get a NEW drivers license without the red dot indicating that he is a donor.

As for your other comments in this thread here is my take on it:

We live in a parasitical world where something else must suffer for another to prosper or succeed in life. This goes all the way down to the bottom of the food chain to the very tiniest of bacteria's and parasites. It is the way it is. Most people don't want to acknowledge this simple truth. Most people have their core set of beliefs and will defend those until their last breath. It is just the way people are hard wired.

And the reality is that most people would not turn down preferential treatment if it meant their loved one got a shot at an organ that they needed.

You bring up a very interesting point about two families both praying for a miracle. One for their loved one to pull through whatever catastrophe has befallen their loved one and the other for a chance for their loved one to get a new organ so that they don't die.

Each is in opposition to the other and the reality is that there is no decider that is picking and choosing and favoring one family over the other. That's just not how life works. It is completely normal for both sides to pray or hope or wish for the miracle that keeps their loved ones here on this planet with them as long as possible.

There is no rhyme or reason to why some miserable SOB lives into their 100's while someone who is decent and kind dies in their 60's.

Who knew organ donation could be such a hot button issue. I have researched much in the last few days on this and my stance is still that I would never get an organ transplant knowing the failure rate and potential complications with the anti-rejection drugs you have to take.

I also learned I would never consider donating a kidney because it increases your chances of your one kidney shutting down from having to do the job for two kidneys and then you need a new kidney too (the good news is you get to the top of the donor list automatically if you need a kidney).

Most people are content with the gift of life feel good stuff regarding organ donation and don't want to learn more about it or the ugly side to organ donation. It just goes back to what I said above that it would affect their world view too much to dive deeper into it and maybe uncover some painful realities and truths they don't want to know. Me I want to know EVERYTHING. And I want to learn and research and get informed. It's just how I am.

In North Korea and China to name a few countries where the poor and those deemed political enemies are killed for their organs. You can get into some really crazy stuff about wealth and privilege and getting to the top of a list to get an organ. So I am thankful we live in the USA where we can choose to be an organ donor or not and we have laws to protect that right.

end soap box...
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PeggySue2020 Aug 31, 2024
Dh’s father had a kidney removed decades ago. And DH has already told me that he would not personally amputate his own kidney so that his dad might live on for bonus years after surviving two strokes and needing oxygen for his copd and paying this caregiver 122k to diaper him once overniighf since he had half his intestine removed.

Even if none of that existed, dh still wouldn’t do it. And that’s his dad.
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Most recipients are white, upper middle class, and over 50. Half of them actually are over 65. They have the wherewithal to live in a Marriott across the street from a transplant center to be instantly available in a way that line staff at a retirement home do not, even if they happen to be white, which most are not.
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Anxietynacy Aug 31, 2024
Honestly, that's whole other issue. There is nothing new there.
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(sigh)

The way a comment someone makes here in full faith KNOWING what they are talking about --and then within a day or two, the discussion becomes angry and hostile.,, this dynamic drove me away from this site several months ago and I see it's still alive and well.

If YOUR HUSBAND does NOT now wish to be an organ donor, he can do several things to keep that from happening. You didn't SAY that, originally, so people jumped in to DEFEND his choice. Period.

Acquire a NEW driver's license with NO box checked as to being an organ donor.

Make it a part of his WILL OR TRUST.

Make sure his doctors know of his wishes. It should be part of his medical history/records.


There's no need to be so angry over something that you have total control over.

My comments and knowledge come from the combination of being the WIFE of a liver transplant PATIENT, and the DIL of a GI Doctor who works with and for the liver transplant dept. of the largest # of liver transplants in our state.

I maintain my comments that transplant surgeries are carried out with decency, respect and reverence. OF COURSE there are some horror stories out there, but I would expect that, too.

I can only speak to my personal experience, and that of the many patients my DH and I met on our journey.
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PeggySue2020 Aug 30, 2024
Welcome to Cali, Midkid. He checked the box at 16–legally a child— and the state donor registry app rejected his request for removal. That’s who the data was ported to from dmv. He has a callback from their 866 number, which like most of us is routinely ignored.

He had a car accident in which the car was totaled having been on fire this month. That moved me to where I am now.

My advice to everyone is to NEVER get on this list. If you’re a candidate, a trained hospitality/publicist will broach the question upon which you as the next of kin survivors get to say no to.
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Here's another horse's mouth to hear from.

My husband is alive today thanks to an organ donor. The first transplant that didn't go through, we were "so upset" to hear the patient didn't pass in the required time period for the ORGAN to be harvestable, that we went to 3 estate sales. No, we did not sit around praying for his or her death so my dh could get the needed organ. So sorry to disappoint.

I'm truly horrified to read some of these comments. The donor who wound up giving his liver to save Chucks life was a fine young man. We've been in contact with his parents for a year now. We cry when we recall the day we found out the details of the young man's passing and his amazing family's bravery and love. And willingness to correspond with us and share their lives!

Not everything has to be turned into a debate about "morals". And if this DOES have to be a debate about morals, GOD bless the wonderful souls who DO have the courage and integrity TO donate their organs after the death of their physical body occurs. Like Chuck and I have done, and most of our 7 children.

This isn't a case of "money" either, where the organ recipient is expected or asked to "chip in" for a cremation or a burial! My God, how mercenary a thought. We didn't even get to send a letter to the donor family until almost 1 year after the transplant.

Nobody can, or should, try to comprehend the magnitude of emotions that are involved in a transplant situation, for all parties concerned. Until you've traveled that road yourself, you cannot imagine the joy and the sorrow that takes place.
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Anxietynacy Aug 30, 2024
Perfect!
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Of all the recipients families who share stories here and elsewhere, how many of youse have actually signed on to give your body to science now that you cannot donate due to anti rejection drugs? In four years, I have yet to hear of this even once from recipient families.
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in regards to the recipient kicking in towards paying for cremation - that is considered to be organ buying which is illegal in this country.
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PeggySue2020 Aug 30, 2024
Well maybe it shouldn’t be as medical schools do this all the time.
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I scanned the posts. Sp's was a little scary. Neither my husband or I have checked off the boxes.

I would think, though, that if your husband puts it in his Medical Proxy that he wants to be a donor, you as Medical POA have to honor it.
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Ok, the red dot on the drivers license means “donor”. We went to donatelifecalifornia.com to remove him and after taking pictures through it of his dl and then of him, this primitive ai provider just said verification failed and to contact donatelifecalifornia, which we did. It’s past 9 and there are no agents to answer their phone.

He made that donor decision, by the way, as a 16 year old minor. That should not EVEN be allowed. And now we can’t get out of it over 40 years later.

There are over 13 million Californians who have checked the box. They make it extraordinarily difficult to get off of it.

Like I said, dh was in a car accident that resulted in the car being set on fire. Fortunately he was ok. But this made me realize that in fact he might not have been. And that plus the diary from years back about how the husband was all prepped for surgery and then the donor didn’t die within 30 minutes kind of broke me.
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sp196902 Aug 30, 2024
Kinda scary how hard it is to opt out after opting in.....
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This is an interesting conversation that I will request admins move to Discussions section.
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PeggySue2020 Aug 30, 2024
Please don’t at this point as we will lose all the nested replies, perhaps including this one.
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from the internet:
"Even if the person is a registered donor, it’s still up to the next of kin to provide authorization. If the next of kin refuses to give authorization or sign the donor consent form, the donation will not move forward."

I, as a nurse, NEVER saw anyone become an organ donor without the release of POA.
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PeggySue2020 Aug 30, 2024
Thanks Alva. This is good to know.

There is a red dot on his dl that is not on mine. Is this the organ donation thing? He no longer wants to do it.
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PeggySue, where I live there is an online portal where you can update your donation status and remove yourself from the list if that's what you feel you need to do, check if that's an option for you
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I hate burial's, they really disturb me, but if my husband chooses to be buried, and laid to rest next to his first wife, that's his choice, and honestly I will gladly respect that for him.

It's his business, his choice, his sole is gone and I was lucky to have him while he was here.

I don't need to be educated on the organ harvesting, or anything, this is about respecting are loved ones wishes. As we want Ares respected
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PeggySue, you have some strong views on this, and you have made them very very clear several times. The ‘gift of life’ to someone else doesn’t cut it with you. Perhaps that's enough? You aren't going to change your mind, and there is no benefit to anyone if you want to convince other people to think your way.
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PeggySue2020 Aug 30, 2024
Well, that’s like saying I should change my mind because of recipient testimonials about how their loved one is alive because of the “selflessness” of a donor family. A family whom I might add is tasked not only by their loved one’s imminent demise but that of multiple parties actively interested in his passing.
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I had a discussion with dh when he came go,e from work reiterating that I as a person could not fulfill his past wishes for organ donation as I, personally, would find any collaboration with the recipient doctors and his to be intolerable, let alone the knowledge that the recipient family was praying for my peace or whatever. I find the thought of a recipient sending grandchild pictures or updates to be intrinsically uncomfortable.

The fact is that in a spousal relationship the last person to die will have to deal with all sorts of things. And if I’m it, it will be hard enough to deal with the cremation and celebration of life etc., especially if sudden. The fact is that the survivors of the donor family have to be on board, fully, with the fact that death will be monitored so the dual doctors can harvest organs.
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I used to follow orders at end of life. I worked side by side with OPO staff when we as a team had to do the brain death testing. This is not your question but the answer is Federal Law. The drivers license is a self determined document checked off by a cognicent person. You cannot hide the license because it is accessible. If a person is hospitalized with impending death, the OPO is notified.
I have encountered the conversations such as parents with religious beliefs who tried to counter the document plus living wills. The outcome is always the same. The legal document, even on a drivers license in every state wins over the objections in the case of brain death.
You are misinformed about the 30 minute rule. That process is extremely rare for an impending cardiac death. That process does require family consent. The patient is taken off life support and the heart needs to stop on its own within 30 minutes. Usually the organs that can be obtained may not be good quality. Also recipeants need to be notified because of the higher risk.Again extremely rare. Donated organs after death generally is for corneas and tissues. You told your husband your terms. If he is dementia then he can create a living will.
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PeggySue2020 Aug 29, 2024
Ok, well, he just got his license renewed with the organ donation rolling over, That’s a day spent, and now he has to spend another day saying that he doesn’t want that?
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I as a nurse have a had a HUGE PROBLEM with the (frankly) VULTURES that descended upon me as someone died. Whether they wanted their eyes, or their skin or their hearts or their very cadavers, they certainly wanted SOMETHING and there was nothing NOTHING of humanity in it for them. They wanted to call the nurses at the hospital where the patient passed and wanted to ask a whole mess of questions about what the person died of, and the circumstances. Sorry, that was what could they still harvest.

In my personal opinion they were inhumane!
Read Mary Roach's book STIFF if you want to know whether or not your loved one's head can just end up on a table for plastic surgeons to play with. If that is OK with you (and for many of us it IS) then great. But if not, do explore the question before you make decisions that are not changed.
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Grandma1954 Aug 30, 2024
Ok, have not read the book but "your loved one's head on a table for plastic surgeons to play with" is that not more of whole body donation for the use of study by students? That is a far cry from someone taking the eyes of my brain dead 2 year old nephew, (he drowned) or the kidney from a drunk driver that went the wrong way on a freeway.
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The Drivers License is just an indication that he would like to be an organ donor it is not a binding contract or a "promise"
Now..If he has filled out a POLST indicting his wishes as to what forms of treatment that he wants for example Intubation, Tube feeding/ nutrition, and CPR that is a medical document that his doctors have to follow.
And if he has completed a Living Will that will also be a medically binding document.
If he feels strongly about being an organ donor and you flatly refuse this request of his if I were him I would change my Health Care POA to someone that is more in alignment with my wishes.

I have to ask, and it may be none of my business but you have posed the question...
Why are you so against organ donation.
There are MANY steps that a patient has to go through before they will take organs. They do not "pull the plug" on a whim and begin harvesting organs. A great deal of testing, planning goes into it before anything is done.
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PeggySue2020 Aug 29, 2024
This is a decent question and I was pretty much for it until hearing from a recipients family member directly here that they were all notified, the recipient prepped, and them praying through the 30 minutes in which the donor was taken off life support. Dh got into an accident about a month ago that resulted in the car catching on fire and while he is ok, this whole thing could have gone another way. And I realized then that had it, I would want to be focused entirely, and have spiritual energy entirely fixated on him and only him, as opposed to prayers being nebulously focused on “peace” so that a strangers personal lo can benefit. It’s just too creepy.
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You would have to have healthcare Proxy Not POA But If he has a DNR and requests " No Life support ' You have No Power over that .
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The impression I get where I am is that the organ donors who are most ‘valuable’ are young people who are killed in an accident, eg fatal road crash. Older people’s organs aren’t in such good nick. If they want to donate, their bodies are usually used for research or training purposes. My FIL wanted that and had researched it all, but he died in an accident 3 weeks after moving to a NH with MIL (fell off his scooter), there was a compulsory autopsy, and that meant that his body could not be used. He had been a WWII Japanese POW and had seen too many deaths and disposals, hated funerals and the hypocrisy that often goes with them.
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