Do you trust the organ donation process (after recovery of 'brain dead' boy)?

[Emergent]

You must have seen the story of the teenager with the head injury who was pronounced by doctors as being ready for organ donation. Fortunately he started waking up the day before harvest was to commence.

Boy 'regains consciousness' just after parents agree to let doctors turn off life-support machine | The Independent

Personally, I've always been leery of the organ donation biz. This story reinforces my paranoia and distrust.

[JKL33]

My post has nothing to do with this case/story, which, as presented in the media is a bunch of sensationalist nonsense.

I am a donor by virtue of the fact that my LOs know and support my desire to be an organ donor. This is the way I and other family members have chosen to handle it.

I have a couple of experiences like mmj mentioned. And then most recently, one of my LOs brought up a question about the process that I didn't want to answer incorrectly so I called the OPO myself to learn facts. They were something less than forthcoming with anything resembling a real answer to what was a very straightforward question. The representative was evasive and circled around and around as if I were a 2nd grader giving me an answer that I knew very well was meant to allow me to believe one certain thing without hinting at other realities that she apparently assumed I didn't know.

I support the concept of first person consent, but I think it is obtained in a manner that is a bit (?) lackadaisical for the situation at hand. And I most definitely don't support communications that are evasive (other than to protect patient privacy, etc), at any point in the process.

[/username, BSN, RN]

My post has nothing to do with this case/story, which, as presented in the media is a bunch of sensationalist nonsense.

I am a donor by virtue of the fact that my LOs know and support my desire to be an organ donor. This is the way I and other family members have chosen to handle it.

I have a couple of experiences like mmj mentioned. And then most recently, one of my LOs brought up a question about the process that I didn't want to answer incorrectly so I called the OPO myself to learn facts. They were something less than forthcoming with anything resembling a real answer to what was a very straightforward question. The representative was evasive and circled around and around as if I were a 2rd grader giving me an answer that I knew very well was meant to allow me to believe one certain thing without hinting at other realities that she apparently assumed I didn't know.

I support the concept of first person consent, but I think it is obtained in a manner that is a bit (?) lackadaisical for the situation at hand. And I most definitely don't support communications that are evasive (other than to protect patient privacy, etc), at any point in the process.

What was the question you asked, and what state do you live in? Can definitely PM me if you don't want to share in public.

[cleback]

Eh... if there ever is a question of... is cleback brain dead? I have no qualms of just letting me pass peacefully and harvesting whatever is in decent shape.

[JKL33]

To give a very general answer, I didn't have a ton of information regarding first person consent at the time I made the call, so the question was in regard to where it left the family's legal standing. My family is very close and there was a discussion and concern brought up about the (admittedly unlikely) scenario of the family having concerns about how things were happening with my (or any other family member's) care or what they should/could do if they felt they needed to limit the actions of an OPO. They are not litigious in any remote sense of the word, and we all would absolutely want each others' wishes to be ultimately upheld if at all possible; it's just that when making decisions like this people sometimes worry about the what-ifs. The only thing the OPO representative would tell me is that they would talk with the family. She said it about five times like a broken record - in fact that is what made me feel a little contentious about all of this. After that dissatisfying conversation, I did more state-specific research (sorry can't post which one) and also asked the law firm working on some of the family's other planning-type documents to get us a real answer and learned that first person consent gives ultimate legal standing to the OPO to follow through with what is needed to procure the organs the patient said they wanted to donate (whenever that may have been). The OPO might voluntarily choose to defer to a family, but legally they don't have to (because that is the whole point of first person consent).

ETA: Thank you for your interest in what I originally posted.

For now we've decided to avoid the registry and make our wishes known in the family. If anyone has thoughts/opinions about that I'm happy to hear them.

[/username, BSN, RN]

To give a very general answer, I didn't have a ton of information regarding first person consent at the time I made the call, so the question was in regard to where it left the family's legal standing. My family is very close and there was a discussion and concern brought up about the (admittedly unlikely) scenario of the family having concerns about how things were happening with my (or any other family member's) care or what they should/could do if they felt they needed to limit the actions of an OPO. They are not litigious in any remote sense of the word, and we all would absolutely want each others' wishes to be ultimately upheld if at all possible; it's just that when making decisions like this people sometimes worry about the what-ifs. The only thing the OPO representative would tell me is that they would talk with the family. She said it about five times like a broken record - in fact that is what made me feel a little contentious about all of this. After that dissatisfying conversation, I did more state-specific research (sorry can't post which one) and also asked the law firm working on some of the family's other planning-type documents to get us a real answer and learned that first person consent gives ultimate legal standing to the OPO to follow through with what is needed to procure the organs the patient said they wanted to donate (whenever that may have been). The OPO might voluntarily choose to defer to a family, but legally they don't have to (because that is the whole point of first person consent).

Yeah... This is a bit of a sticky wicket, as every situation is different... With DCD donation becoming more prevalent, they have to work with families more, and as the patient is not dead, the families have to consent to everything the OPO needs to facilitate donation. Ultimately, the family has ultimate decision upon the time and place of the withdrawal of support, so if they do not want to withdraw in/near the OR, or want to withdraw right away without giving the OPO time, there's nothing that can be done.

In cases of brain death, it's more cut and dry, and when I had a patient in the ICU and the topic of brain death/donation came up, I never had a family that was opposed to their loved one's decision. In many cases, actually, the family is relieved to hear that their family member already made that decision for themselves. Many times, they would actually bring up donation to me, and I would then call the OPO to speak with them.

At the end of the day, while the whole process of donation and transplant is regulated to death by the federal government, it still relies heavily, and I would say primarily, on the public trust. This trust is too valuable to be thrown away by railroading families.

Also a caveat - I've not worked in an OPO, but have been an ICU nurse for a while, have taken care of many donor patients, and have had a family member who was a donor, so there are likely things that I am leaving out.

As I think about this now, when I call in a donor, the people I speak to are never the ones who actually come to the hospital.... If you called the referral line, you could have just spoken with someone who didn't want to say something concrete as each situation and family can be so different?

And I'm a fan of your last bit. Adding your name to the registry is far less important than speaking with your family about your wishes. I wish more families would talk about what they want before they get to the ICU...

[JKL33]

Thank you for the information/conversation, /username ~

[cgw5364, ADN]

As a medical review nurse one of my functions is to separate hospital charges for organ donations. Charges that occur prior to declaration of death belong to the hospital and charges that occur after declaration of death belong to the OPO. I have noticed in the last year more cases of DCD-donor after circulatory death. In these cases the patient is not brain dead, however they have sustained non-survivable injuries. The patient's brain retains some minor brain stem functioning. When the patient's family has decided on organ donation these patient's are taken to the pre-operative holding area and are removed from life support. These patient's are expected to die within 60 minutes. I have not read of a case in which the patient lived longer than 10 minutes.

[klone, MSN, RN]

There has not been a single documented case in the entire world where someone was properly and accurately declared brain dead who recovered. .

Jahi McMath?

Granted, it totally depends on what you mean by "recovered" but she certainly is no longer brain dead (see the huge Atlantic article that was published a few months ago).

[/username, BSN, RN]

Jahi McMath?

Granted, it totally depends on what you mean by "recovered" but she certainly is no longer brain dead (see the huge Atlantic article that was published a few months ago).

It would be a recovery. Nobody goes from being brain dead to not being brain dead. It just doesn't happen. It's a binary - you're brain dead, or you're not.

I have yet to see this "miraculous recovery" published in a medical journal anywhere either in the US or abroad, which is very surprising as this would be one of the, if not THE single biggest medical breakthrough/story in the medical community.

I might not have all the information though, because as a neuro nurse, I only subscribe to neuro specific journal (and ACCN's journal)...

See back to my comment about every single person who is "brain dead" who then recovers was never brain dead to begin with, and there was a problem with the declaration.

She was trached and had a feeding tube inserted... As long as the trach is in, the heart will be oxygenated and continue to beat. As long as the feeding tube is in, her gut should continue to function.

Her movements appear to be consistent with spinal reflexes, which was validated by the other doctor coming in and watching the videos. Just because her mother showed a reporter a video that has some movement after her mom says something does not mean that that was purposeful movement. The doctor that came in could not get her to respond to a single command. You best believe that her mom is videotaping constantly and when there is movement that corresponds with her speech, it's saved.

It's no different than standing outside and shouting at the sky to rain. You can shout at the sky and tell it to rain every 30 seconds if you want. When it finally does rain, it's not because you were shouting at the sky... It's raining because it sometimes rains... What's happening with this tragic case is no different.

They even tested the electrical activity in response to sound (after she was in NJ), and found there was no electrical activity in response to sound.

If nothing else, think of Occam's Razor. Which is more likely? That the family, unwilling to accept that their daughter has died, has expended countless resources to avoid that reality, or that the only person to have recovered from brain death is not being reported on, or her condition being studied to see if others could be helped, or even written on in medical journals?

[KatieMI, BSN, MSN, RN]

Jahi McMath?

Granted, it totally depends on what you mean by "recovered" but she certainly is no longer brain dead (see the huge Atlantic article that was published a few months ago).

Perhaps in the future we will know more about brain potential for measurable recovery. We did not have fMRI only 25 years ago. We only have a handful of patients studied and monitored under such circumstances.

As of for now, we have that one questionable case of "miraculous" recovery on thousands of bodies in PVC who are literally rotting alive and tortured for decades in the name of "not denying 'em hopes".

[dream'n, BSN, RN]

I am not, nor are my loved ones, signed to be organ donors. This decision has been well thought out and is personal. What bothers me is the judgement of some people that attempt to make our decision appear selfish or that try to make us feel guilty. I do not push my opinion on those that choose to be donors and I ask for the same respect regarding my decision.

[/username, BSN, RN]

I am not nor are my loved ones, signed to be organ donors. This decision has been well thought out and is personal. What bothers me is the judgement of some people that attempt to make our decision appear selfish or that try to make us feel guilty. I do not push my opinion on those that choose to be donors and I ask for the same respect regarding my decision.[/quote']

There's no need to try to make it appear selfish, it is selfish by every dictionary definition., but that's completely fine as it's your decision to make. You made a decision, your family made a decision, and you all talked about it and know what each other's wishes are. There's nothing wrong with that.

It is wrong that people try to make you feel guilty about it. .