Organ donation question

Im not sure about the medical laws on this.

But I will say morally, I believe we should honor are loved ones wishes even if it's upsetting and we don't want it.

Burials very much disturb me. I have a hard time thinking that my fathers body is just laying in the ground somewheres, and in a 1000 what ever years it could wash up in a flood. Who knows. But that is his wishes and my mom's, even though I disagree, when mom goes I will honer her wishes.

I would hate if someone didn't on my wishes and buried me instead of cremation.

So I'm trying to tell you gently that I believe your husband's wishes should be honored, just as you want your wishes honored

I have to answer this question, as my husband is alive today due to the incredible decision of one woman to donate her organs at the time of her death, 18 years ago.

He received her liver. Many other patients received her kidneys, heart, lungs, corneas and skin grafts.

I think of her often. Her family did not want to honor HER request. There was some infighting, so we were later told (a dear friend was actually present at the hospital where she was on life support, and while he couldn't share much with us, I do know that her family fought with the hospital to ignore her Donor status.)

We got called to come to the hospital and waited almost 20 hrs before we received the 'go ahead' that this donation was happening. (and this was our 3rd 'call' to come do the transplant, the other 2 went to other patients.)

The donors are treated with SUCH incredible respect. I think if you look up "Donor Walk" you will see incidents where the donor is being wheeled into the operating room and staff and family line the halls in quiet respect for the great gift these people are giving. It's NOT gruesome, horrific or dramatic in any way. It's actually very tender and spiritual.

Unfortunately, TV shows have made this situation into high drama, instead of the incredibly humbling act of generosity. The TRUTH is that it is a tremendous gift, and if that is what your spouse has asked for, perhaps you can search your soul and think about donation in a different way.

They DO NOT rush to harvest organs. All the time the family needs to grieve and say their goodbyes is respected and honored. I know exactly how I felt as I sat in one hospital waiting room with my husband, and my emotions were really, at that time, solely with the family of the donor, in another hospital 5 miles away. I was not praying she'd pass. I was praying for peace for her family. I'm not unusual in that.

You do not, as the spouse, have the right to override the choice to be an organ donor. The doctors will treat you respectfully, but they will, if this happens--ultimately, follow what your DH wants.

My DH did write a couple of beautiful letters to the family of our donor. To this date, they have not chosen to respond back.

Our donor did not 'die for my husband' but she gave life to about 8 people. That's an incredible gift we can never repay.

In the 18 years since, my husband has been able to see 12 grandchildren come into the world. He has had a wonderful, fulfilling career and has been an active part of our family. He is healthy, and we appreciate every single day.

I hope more people can jump in here and echo what I am saying.

I know while we were rejoicing in a miraculous event, another family was grieving the loss of a young woman. No recipient of a donated organ is the same again.

First, may I gently say that the organ donation scenario you describe doesn’t match my understanding or what I’ve seen (multiple times) at all. Often, no recipient family is standing by. They don’t have any idea that the potential donor is dying somewhere else. Organs are assigned by algorithm, and often come from many states away, often many hours later cooled or on a perfusion pump, and only after immunologic testing for compatibility. It would be rare for a recipient and a donor to by chance be even in the same hospital, except for directed donations (or sometimes where the death is brain death after trauma etc—which counts, and is, death). And any recipient family would not be apprised of his situation before death (how un-HIPAA would that be ????)

So I suspect in reality respecting his wishes wouldn’t trigger any of the concerns you actually have. It would just be a question whether his organs go on after him to help someone, or not.

Second, this aside, as his medical POA, your responsibility under the POA is to represent his interests and preferences—whether you agree with them or not—during those times he can’t express them.

You don’t get to turn on a dime and go against what he says. Or, perhaps you could do so, no one will stand up to a forceful POA….but you shouldn’t.

My advice to you is to talk to your husband about this. You say he’s checked organ donor on the card (which tells you his preference but is not legally the final word) but maybe he doesn’t feel that strongly about it. Or maybe he really does. You should find out/update how he feels about it, and then steel yourself to represent him truthfully on that front. That’s the solemn responsibility of a POA. He’s put his trust in you.

If you can’t do that, then you should have him assign a back up POA and if the circumstances require then abstain yourself.

@PeggySue this is a legitimate concern because there have been cases where a person was not actually dead and their organs were about to be harvested.

Look up: Zack Dunlap, Ryan Marlow and Colleen Burns to name a few.

Many times organs are harvested from donors with a heart beat without anesthesia and only paralytics are given so the body doesn't jerk and fail about (are they in pain? Many believe that yes they are).

It is a brutal business and many times the doctors don't listen to the nurses about patients showing signs of life such as Colleen Burns and others. How many people had their organs harvested while they were alive - we won't ever know because they are dead and only those who survive can tell their stories and even then it's not widely publicized.

I would never be an organ donor just based on the no anesthesia and only paralytics given. Tell your husband about these cases and maybe you can get him to change his mind.

I found this that I bookmarked back in 2023 when I happened to come across it. Glad I did...

 In the beginning, through trial and error, they discovered it was not possible to perform this "miraculous" surgery with organs taken from someone truly dead, even if the donor was without circulation for merely a few minutes, because organ damage occurs within a very brief time after circulation stops.

To justify their experimental procedures it was necessary for them to come up with a solution which is how the term "Brain Death" was contrived.

Much is being done to get your organs. For an organ to be suitable for transplantation it must be healthy and it must come from a living person.

Once DBD (Donation After Brain Death) or DCD (Donation After Cardiac Death) has been verified and permission extracted from distraught family members (in cases where relatives cannot be located the government often now makes the determination on our behalf) the "organ donor" undergoes hours, sometimes days, of torturous treatment utilized to protect and preserve the body-container of "spare parts”.

The "organ donor" is forced to endure the excruciating painful and ongoing chemical treatment in preparation for organ excising. Literally the "donor" is now an organ warehouse and used for the sole purpose of organ preservation until a compatible recipient can be located.

 Donation after circulatory death (DCD) can be performed on neurologically intact donors who do not fulfil neurological or brain death criteria before circulatory arrest. This commentary focuses on the most controversial donor-related issues anticipated from mandatory implementation of DCD for imminent or cardiac death in hospitals across the USA.

The truth of the horrific treatment and DEATH OF THE "DONOR".

Organ removal is performed while the patient is given only a paralysing agent but no anaesthetic.

Multi-organ excision, on the average, takes three to four hours of operating during which time the heart is beating, the blood pressure is normal and respiration is occurring albeit the patient is on a ventilator. Each organ is cut out until finally the beating heart is stopped, a moment before removal.

It is well documented the heart rate and blood pressure go up when the incision is made. This is the very response the anaesthesiologist often observes in everyday surgery when the anaesthetic is insufficient. But, as stated below, organ donors are not anaesthetised.

There are growing numbers of protesters among nurses and anaesthesiologists, who react strongly to the movements of the supposed "corpse." These movements of the “donor” are sometimes so violent it makes it hard to continue the taking of organs.

Medical staff are literally cleaving open the chests of these innocent people without anesthetizing them, and tearing out their organs, one by one, leaving the heart for last, after which point they are, of course, dead.

As I understand POA (or next of kin) when it comes to organ donation, yes, the doctors will have to do as you want, unless he has it written down EXPLICITLY with whatever hospital he is in. I don't think "checking the box" (like on a driver's license) is "enough" to overrule POA/next of kin wishes. And no hospital is going to go ahead and take organs if there is even a HINT that the wife objects, they don't need that kind of potential bad press and/or lawsuits.

BUT - this is a serious discussion you need to be having with HIM, not us.

If it were me, and my husband had EOL directives that I wasn't sure I would be able to follow, for whatever reason, and he was unwilling to change said directives, I would tell him to assign that particular directive to SOMEONE ELSE's discretion who WOULD be able to follow them.

Is it the donation you are against, or the circumstances that surround it?

I can understand your hesitation, especially the scene that you are describing; but it isn't easy to actually BE an organ donor. The older you get, the less likely it is your organs will be viable for harvest. It also depends greatly on what it is you die of, and if you have any other comorbidities. My BIL died very young (40's) of cancer, and although his widow was willing to donate his organs, they were rejected because of the cancer. The only thing they were able to take were his corneas.

There is also the question: if someone is so far gone that there is even a discussion about organ donation - well, it's like giving someone on hospice morphine. Is death being hastened? Being removed from life support, probably, but at that point what sort of quality of life does that person have? If my husband were in such a state where there was no hope of recovery, and remaining on life support would only keep his body alive while his brain and spirit and personality - all of the things that make him HIM - were already gone, I KNOW he would hate that existence. As I would, were it me. I would feel honor bound to follow his wishes, regardless of how heartbreaking it might be for me, because at that point I imagine my heart will already be in about 1 million pieces, regardless of any decision about organ donation.

But this is really something you need to discuss honestly and in depth with him.

My son is here today due to the gift of organ donation. We are forever grateful to a family who reached out in giving during their sadness and gave our son a new chance at life. He wouldn’t be here today without it. I will not debate some of the incredibly misconstrued information I’ve just read going through this post and replies. Thank you to MidKid for your thoughtful and accurate answer. There is much a family doesn’t know about transplant until living through the process. I do know that each transplant center has its own set of criteria for who they will accept organs from, and often advanced age is ruled out for many organs. Simply growing older, depending on which organ and which center, may take away the issue. Spreading falsehoods that people are tortured to harvest organs in modern transplant centers is cruel to families at best. This hit a nerve, no response necessary

Peggysue, what I was trying to say earlier is, as much as you don't want your husbands organs to be used to save a life , is your opinion and the body after death needs to be respected as I would think you would want your husband to respect your wishes and not donate your organs to someone.

You need to put you foot in his shoes after death and do his wishes, for him.

It's hard when we strongly disagree with there choices, but it's just the right thing to do.

If I felt like my husband couldn't do what I asked to be done with my remains, then I would have to find someone else that will.

So I think you should go to your husband and tell him, you just can't see through his wishes, so he can find someone that can

No disrespect to those who have received organ donation or their loved ones who have received a donated organ, but the reality and truth is that organ donors can feel pain and they are given paralytics for that reason. Sometimes they will even anesthesize the organ donor (as in the article from the NIH but not always).

It is an inconvenient truth but a reality that anyone who considers organ donation and anyone who needs a donated body part should think about.

It is not made up and there are NIH studies and articles such as this one below that talk about this very thing.

It may make people uncomfortable BUT the truth many times is very uncomfortable.

People should have all the facts before they decide to give an organ or be the recipient of a donated organ. Instead we are given a sugar coated and false impression of this gift of life (and yes it is a gift that has unfortunately been perverted for profit).

Here is the NIH article if anyone cares to be educated and informed.

The Trouble with Anesthetizing the Dead from the National Library of Medicine.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6880062/

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.

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 .

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.

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.

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.

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.

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.

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

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

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.

This is an interesting conversation that I will request admins move to Discussions section.

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.

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.

in regards to the recipient kicking in towards paying for cremation - that is considered to be organ buying which is illegal in this country.

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.

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.

(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.

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.

@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...

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.

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.