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

Horseshoe, BSN, RN · May 12, 2018

As far as I know, no physician who is an expert in brain death has re-tested Jahi McMath. I find it very suspicious that the family is not willing to allow her to be re-tested with every one of the tests which are used legally to determine brain death. The judge has made his "maybe she is" statement based on family testimony and from medical professionals who have not examined her and have relied on family testimony or dubious videos which cannot be verified.

If she has miraculously gone from brain dead to alive, her family should be screaming out for these tests to be done, because as we all know, if she is declared alive and disabled vs. brain dead, their ability to receive financial compensation in a lawsuit and the ability to have her care covered in their home state is significantly different than their current options.

Editorial Team / Moderator · May 12, 2018

I would love to be a donor, but as I grew up in Europe during the "mad cow" years, I am ineligible to donate blood, tissue, organs, corneas, etc. I am useless, which is a shame because I think donation is a beautiful gift. I remember watching a show (maybe the Today show?) in which a woman met the little girl who received her infant son's heart, and she was able to listen to her beloved son's heart beating in that little girl's chest, and that girl's mother was able to thank her for the gift of her daughter's life. Right in the feels, man.

It's a personal decision, I respect everyone for making theirs. It's your body, forever.

I have seen patients go through the rigorous process to be declared brain dead, it's not something done lightly. And we call the OPO in early, too - when the GCS is at a certain level. Does not mean that the patient is brain dead or will even donate, but it is the start of a conversation.

K+MgSO4, BSN · May 13, 2018

I would love to be a donor, but as I grew up in Europe during the "mad cow" years, I am ineligible to donate blood, tissue, organs, corneas, etc.

Pixie, do double check this. I am in the same situation born in the UK in mid 80s and lived there until the early 90s when we returned to Ireland. None of the family can donate blood but I was an organ donor there as well as being an organ donor in Australia where I now live. I am still not able to donate blood but I can donate my organs.

On a side note I donate blood for medical research. Last week I donated to a research project that is investigating low cost, low tech methods of reducing PPH in developing countries.

On another note I sit on my organisations consent committee. We have just approved the option of offering renal transplant from DCD with people considered "higher risk" such as drug use, alcohol use unsafe sex practices. This is an additional list that people can be registered with as well as the standard list. It is aiming to get people off dialysis with better tissue match organs and

jobellestarr · May 13, 2018

As a transplant nurse of 20 years, I have come to know that the organ donation and transplant are highly regulated. Perhaps you could direct your questions to donor network and they could give you real information and not just opinions.

Editorial Team / Moderator · May 13, 2018

Pixie, do double check this. I am in the same situation born in the UK in mid 80s and lived there until the early 90s when we returned to Ireland. None of the family can donate blood but I was an organ donor there as well as being an organ donor in Australia where I now live. I am still not able to donate blood but I can donate my organs.

Thanks for the advice! So the current standing is that I "may" be able to donate organs, just not tissue. I have always opted in to organ donation anyway, just in case they can take a quick peek at my brain and rule out mad cow disease in time to use my parts. lol

EllaBella1, BSN · May 13, 2018

After reading some of these replies it's so apparent to me that many nurses have not had any contact with the organ donation process.

As a Neuro ICU nurse I can tell you that this kid was likely designated to be a DCD donor. In those cases the patients are NOT brain dead, yet are diagnosed with a significant neurological injury that is not compatible with life unless they receive extensive support- i.e. trach/peg/long term care. In this case the family was told that the patient's injury was severe enough for him to likely never be normal again, and the family decided to withdraw care and allow him to be an organ donor. These patients are not patients who are guaranteed to die as in brain death cases. Rather, this is a case of a family decision to not allow their child to live in that state, and to help others in the process.

In DCD cases the nurse goes to the OR with the patient and the patient is terminally extubated. Comfort measures are provided to the patient in the OR as they would be in any terminal extubation case. The patient has a set amount of time to die in order for the organs to be viable- if they die within that time frame they donate. If not then they are brought back upstairs and their comfort care is continued. The surgery team and organ retrieval team are not even permitted to be in the OR while all of this is going on. They have to stay outside until the patient is pronounced by the current care team in order to avoid conflicts of interest/compromising care. I've personally been an RN in two DCD cases. In one the patient died about 15 minutes after being extubated and was a donor. In the second the patient did not die within 60 minutes of being extubated so we brought the patient back up to ICU and the patient passed there several hours later. It really isn't some big conspiracy theory when it comes to DCD donation.

I'd also like to point out that the first call to initiate the organ donation process is a nurse-driven task. In critical care we're given a set of guidelines. The guidelines vary slightly per donor organization but generally are as follows:

1) Patient is ventilator dependent ( and this could even just be at the moment)

2) Patient has a neurological injury or insult

AND 3) one of the following: GCS

If your patient meets these criteria you call, give a quick report on condition and history, a few lab results. If the patient sounds like they might be a candidate for organ donation the organization calls daily for updates and lab results. They ask US as nurses to call them and let them know if there is any discussion of brain death testing or if they patient's family has requested DNR/CMO care. They DO NOT speak to family prior to that point. And they DO NOT speak to doctors until AFTER they speak with family. The whole 'doctors not doing everything they can so that the organs can be donated' thing is a myth, and I think it's unfortunate and sad that some still hold that belief.

On a second note, I googled the situation and in the people.com article that I found there are a few glaring statements that make me question a significant portion of this story. First and foremost, the family states that the organs were "going to be donated to 5 children in need." There is NO way that the family knew this. NO WAY. The family would have no clue who organs were going to (think HIPAA people). No clue about the number of people, their ages, etc. Not to mention the recipients themselves often do not know for sure that they're getting an organ until the day of surgery. The process of matching people to organs takes SO much time and so many tests. Bloodwork, tissue typing, multiple CT scans and MRIs, ultrasounds, echos, biopsies, bronchs, xrays, etc etc etc. It's not just a "these 5 kids need organs" type of thing. Plus the article calls him brain dead multiple times but then states that he was still undergoing brain tests, etc. You're not brain dead until you're legally pronounced brain dead by two providers. So there's that.

The whole "brain dead boy wakes before they were taking his organs" is so sensationalized that it sounds like an episode of Grey's Anatomy. What really happened here is a boy with a neurological injury was misdiagnosed as having a poor prognosis, regained some functional status, and was not a donor. The end.

Organ donation is something that I feel passionate about, and it's stories like this that threaten our ability as healthcare providers to save lives. I'm glad this kid recovered, but I've also seen so many otherwise healthy young people who have brain injuries who do not donate, in part because of misinformation and distrust of the process.

Penelope_Pitstop, BSN, RN · May 13, 2018

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.

I had a patient who lived longer than the allotted time and was then brought back to the ICU for comfort care as was previously agreed upon by the patient's children and physicians.

Horseshoe, BSN, RN · May 13, 2018

On a second note, I googled the situation and in the people.com article that I found there are a few glaring statements that make me question a significant portion of this story. First and foremost, the family states that the organs were "going to be donated to 5 children in need." There is NO way that the family knew this. NO WAY. The family would have no clue who organs were going to (think HIPAA people). No clue about the number of people, their ages, etc. Not to mention the recipients themselves often do not know for sure that they're getting an organ until the day of surgery. The process of matching people to organs takes SO much time and so many tests. Bloodwork, tissue typing, multiple CT scans and MRIs, ultrasounds, echos, biopsies, bronchs, xrays, etc etc etc. It's not just a "these 5 kids need organs" type of thing.
Plus the article calls him brain dead multiple times but then states that he was still undergoing brain tests, etc. You're not brain dead until you're legally pronounced brain dead by two providers. So there's that.

Emphasis is mine. As soon as I saw that, I knew there was something very fishy with this story. If the patient was "undergoing brain tests," then he could not be declared brain dead; no doctor is going to tell a family their son is brain dead if they haven't even finished testing him. There are LEGAL criteria that must be met for that diagnosis, and in many cases they go even further than what is legally required (cerebral perfusion scans, etc.) to make sure.

This story stinks to high heaven...

Here.I.Stand, BSN, RN · May 14, 2018

They were planning on pulling the plug the next day, so I presume they had determined his eligibility.

I don't see that he was declared brain dead... so I'm thinking it was a DCD situation. With DCD, the pt is extubated (no plug pulling). Immediately after cardiac death is pronounced, the organs are retrieved. If the pt DOESN'T die, the surgery doesn't happen, the pt is transferred to the floor, and the pt is cared for.

Nobody regains consciousness after brain death. Imaging shows a lack of cerebral blood flow...that brain isn't even getting oxygen, so clearly they can't regain consciousness. To maintain the integrity of brain death testing, two physicians must independently assess. Also, the tests aren't even done if the pt is hypothermic -- this is to prevent the cool brain's slowed activity from confounding the exam. "You're not dead until you're WARM and dead."

Personally I am more nervous about people refusing to donate based on misinformation perpetuated by people who don't know what they're talking about.

Here.I.Stand, BSN, RN · May 14, 2018

As a Neuro ICU nurse I can tell you that this kid was likely designated to be a DCD donor[/Quote]
I typed too soon -- just saw you made my point already. Except you gave a more thorough explanation.

MunoRN, RN · May 14, 2018

In DCD cases the nurse goes to the OR with the patient and the patient is terminally extubated. Comfort measures are provided to the patient in the OR as they would be in any terminal extubation case. The patient has a set amount of time to die in order for the organs to be viable- if they die within that time frame they donate. If not then they are brought back upstairs and their comfort care is continued. The surgery team and organ retrieval team are not even permitted to be in the OR while all of this is going on. They have to stay outside until the patient is pronounced by the current care team in order to avoid conflicts of interest/compromising care. I've personally been an RN in two DCD cases. In one the patient died about 15 minutes after being extubated and was a donor. In the second the patient did not die within 60 minutes of being extubated so we brought the patient back up to ICU and the patient passed there several hours later. It really isn't some big conspiracy theory when it comes to DCD donation.

While that is how it often works it's not as standardized as you make it out to be, DACD can be a great way to make a bad situation a little better without really any moral uncertainty, but it can also be a bit sketchy.

My first experience was how it should work, nothing changed in the process of transitioning to comfort care all the way to time of death. We didn't even take them to the OR to withdrawal since we that's not the normal comfort care process.

Unfortunately not all organizations follow that practice. I've worked places where the organ donation staff lines up in the back of room and randomly throws out suggestions that the patient needs more morphine when they clearly don't. The most egregious case being that of a young child slated for DACD where the anesthesiologist for the donation organization gave the child 500mcg of fentanyl as comfort care analgesia. Child organ donor's death under investigation by Los Angeles police - CBS News

boquiabierta · May 14, 2018

Organ donation is something that I feel passionate about, and it's stories like this that threaten our ability as healthcare providers to save lives. I'm glad this kid recovered, but I've also seen so many otherwise healthy young people who have brain injuries who do not donate, in part because of misinformation and distrust of the process.

Thank you so much for this passionate and detailed response. I really hope the other people in this thread who mistrust the process for no reason read it. My last hospital job we had an organ donation representative (I forget what her actual title was, it certainly wasn't that) come in to talk to us in orientation and she explained how the donation process is kept 100% separate from the medical care and we are not even allowed to bring up organ or tissue donation, we have to call these representatives and only after certain criteria have been met and all that.

It makes me crazy that people think that first responders and doctors and other medical professionals somehow prioritize getting their organs over saving their lives. So backwards and conspiratorial with no basis in reality.