I plan to donate my organs -- but I've taken my name off the registry

[Mosby]

(I DID NOT WRITE THIS ARTICLE)

For decades, I have encouraged friends and family to register as organ donors. As an intensive care nurse, I’ve mourned patients who died needing a transplant, and I’ve joined “honor walks” accompanying dying patients to the operating room for their life-changing donations. When I die, I want to donate my own organs and help my family find meaning in my death. But I no longer believe that being on the donor registry is the right way to accomplish those goals.

My change of heart began years ago with a patient who suffered a catastrophic health event and was being kept barely alive by machines. (For reasons of privacy, I can’t identify the patient, even by sex, so I will use the pronoun “they.”) They could no longer consciously communicate, but they grimaced whenever they woke up and felt the tubes we had placed down their throat and in their groin, urethra, neck and wrists. Recognizing that the patient was suffering but not improving, the ICU team offered to stop our futile efforts and instead transition them to comfort care and a peaceful death. After more agonizing days, the family asked us to stop the patient’s suffering.

As required by law, we alerted the regional organ procurement organization. When its representative arrived, she informed the family that, because the patient had registered years ago while obtaining a driver’s license, the organization was authorized to begin preparations for transplant. This meant the patient had to remain on life support for more hours or days while the procurement organization identified potential recipients, assembled the donation surgical team and coordinated timing, transportation and other factors; they also would monitor the patient and request other treatments if necessary to keep the organs viable.

The distraught family explained that the patient likely registered inadvertently, that English was a second language, that donating in this way conflicted with the patient’s religious beliefs and that the patient would not have wanted to be kept nominally alive without hope of recovery while their children sobbed at the bedside. The decision to withdraw life support was hard enough, the family pleaded. They asked to be left to grieve.

But the representative said she was merely notifying them — not asking permission. She said the organization had the right to procure the patient’s organs and to continue life support in the meantime, regardless of family objection.

https://wapo.st/4aGugJx

[bucolic_frolic]

1. Whoa - "the right" implies property rights, ownership

That is way overstepping boundaries. Next of kin owns upon death. Patient owns while alive. Family has likely P/A for medical care.

Does any organ donor program convey property rights to donor organizations when informed of imminent death? I doubt it.

[Ms. Toad]

11. No, the next of kin does not "own" on death.

The point of registering as an organ donor is for the donor to declare their intent in a way that is legally binding and family members cannot override. I want any useable organ I have left in my body when I die to go to anyone who needs it. Period. I don't care what my spouse, parents, siblings, etc. want. I want my body used to save the lives of others (heart, lungs, kidneys, liver), or to make life easier for others (skin, cornea, et.) Fortunately, al of my relatives who might have any say agree with me.

But - prior to registration via the driver's license, it was hit or miss as to whether organs were donated - even when the deceased had clear preference they had expressed to many people. Medical staff first had to ask a family in the middle of one of the toughest moments of their life about the possibility of donation. The deceased person often had not discussed the matter with family - AND - sometimes even when the family knew the wishes of the deceased but could not overcome their grief to allow the donation.

In most states, registration as an organ donor is definitive proof of the intents of the decedent and cannot be overridden by the family. It isn't a matter of ownership. It is a matter of my right to have my clearly expressed decisions about my body respected.

[bucolic_frolic]

13. I stand corrected. Glad I'm not enrolled. Never trusted the process. /nt

[Ms. Toad]

14. I hope neither you, nor a loved one, ever need an organ.

People with my daughter's disease frequently have to recruit living donors as the only alternative to dying on the waiting list. For her disease (Primary Sclerosing Cholangitis) it is a combination of the disease staging not being measured well by the transplant criteria (so they are far sicker before they are eligible to be listed), and too few livers available.

We have friends with the same disease who have needed as many as 5 transplants (it's an autoimmune disease which doesn't vanish when the liver is replaced). We have friends who have died on the waiting list. We have friends who have recruited living donors. I'm aged out of the living donor process, but I did start the evaluation process for a friend of ours since my daughter seems to be on the slow track, so it was clear I would not be eligible to donate to her when she needed it.

There is no medical treatment. The only possibility for a normal life is a transplant. My daughter is 35, but I've known people as young as 4 diagnosed with this disease. Even if she doesn't need a liver transplant, her disease puts her at increased risk for a half dozen cancers. She has a colonoscopy every year (and has had since she was 18), an MRI every year, and on the alternate 6 months an ultrasound with the hope of catching any cancer which develops early.

I hope you'll rethink your decision. You can't take your organs with you - but they can give life, or quality of life, to dozens of others.

If your concern is that doctors will give up on you in order to harvest organs for others, (1) the process has safeguards to prevent that and (2) you can craft your living will/advance directives to specify exactly how you want your end of life structure in order to provide extra safeguards. Depending on what you specify, it might mean that some of your organs could not be used based on your directions - BUT - it is far more likely that your organs would go where they are needed if you are on the registry AND have a living will/advanced directive that limits the gift than if you just aren't on the registry.

Next best would be to make sure your close family members know our wishes.

[Dave Bowman]

2. That's very disturbing, to say the least. 🙁

[LudwigPastorius]

3. Don't sign anything you don't understand.

...because, like in this case, that is binding as to your final wishes. Your family doesn't get a say if you've indicated beforehand how you want your death to go down.

[multigraincracker]

4. I'd be glad to donate my pacemaker

to dog that needs it.

[drray23]

5. well, what would be the point of somebody authorizing organ donation if they die

When their family could override that wish for various reasons, religious or otherwise? Either you consent to it or revoke that consent. If it is there and you die, your family should not get a say.

[Mosby]

6. The family in the OP decided to remove their request for palliative care.

Last edited Sun Feb 22, 2026, 05:56 PM - Edit history (1)

And everyone lost:

But the representative said she was merely notifying them — not asking permission. She said the organization had the right to procure the patient’s organs and to continue life support in the meantime, regardless of family objection. Now understandably irate, the family reversed their decision to withdraw life support. If heroic measures were going to continue, they said, they should be used to save the patient’s life, not someone else’s. Our patient died within a day despite aggressive intervention — leaving the family traumatized, the organs unusable and our care team shattered.

[EdmondDantes_]

7. Is there anything to suggest that the family would have been willing to change their mind?

It doesn't sound like the family was interested in donating organs and I have very little sympathy for that position so I'm not inclined to give their account much credence in terms of being unbiased about the events.

[Ms. Toad]

12. Organs cannot be donated until a person is dead.

(either heart or brain death). If they are providing palliative care, the patient was not dead, and no procurement would happen until they were dead.
So no, they were not proposing using heroic measures to save the patient's life. They were taking the necessary steps to preserve the viability of the organs of a person who had already died, and who had chosen to allow their organs to be used by others. To be viable, oxygen-enriched blood must continue circulating, but that is not life. I doubt the organ procurement group use the words "to continue life support," since that isn't what is happening after brain death - and no one even minimally trained in procurement would use that inflammatory language.

[Ms. Toad]

8. The whole point of joining the registry is to avoid family overriding the deceased's wishes.

I won't have that problem, since my spouse and I are off similar minds. But at one point, my mother's desire to donate would have been overruled by my sister, had my mother's declaration not been binding.

Please don't use scare tactics of the system honoring the wishes of the decedent to discourage the most efficient means of getting your organs to people who need them.

Anything short of the registry leaves donation up to the initiative of medical people (who may not ask), relatives who may not know - or may disagree with the deceased persons wishes - or, as in the case you are citing, are too overcome with grief to allow the donation to go forward.

Full disclosure - my daughter will likely need a liver transplant (or more than one - friends with the same disease have needed as many as 5). We've also had friends die in the waiting list. But we've been organ donor for longer than she's been alive, and certainly longer than the 17 years she's had PSC

[Mosby]

9. People are checking a box on a DMV form

We need to do better than that.

[Ms. Toad]

10. Why?

A driver's license is something most people over age 16 carry with them, which discloses their wishes in a way that is accessible (on their person, or via the DMV) and (in most states) cannot be overridden by family which is too wrapped up in their own grief to know or follow the wishes of the deecedent.

Frankly, I think an opt out system would be better. But since that isn't likely to happen, this opt in system via a document which most adults have is an excellent alternative.