Refusal of Brain Death exam??

Nurses General Nursing

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I do not want to give away too much info just in case (HIPPA) but.... currently, we have a patient who had a positive brain death exam and the family has refused the second brain death of exam due to "cultural beliefs".

So now we have a patient without a time of death as of yet and a family who does not believe in brain death who wants "everything done"! YES we have ethics committe involved......................... It is very emotionally exhausting for all involved.

Unfortunately, I have dealt with brain death many times in my career, however, I've not been caught in this limbo before.... Just wondering if anyone has had a similar situation and how it was dealt with.

Specializes in PICU/NICU.

I can see where this situation is going..... the pt will hang on until the lungs fill up and they finally cardiac arrest. Just a matter of time. It is really hard for me to deal with personally because it feels just wrong(for lack of a better word). But....... I have a hard time going against a religious belief of a family and I could not live with myself if they thought I "killed" their child.

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Specializes in Neuro ICU and Med Surg.

I have felt the same way at times.

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Specializes in CVICU.
Just wondering if anyone has had a similar situation and how it was dealt with.

Yes, this happened on our neuro unit. The lady was brain dead for a week. It was completely ridiculous keeping her alive because we were constantly chasing hypotension, hyperthermia, hypothermia, metabolic derangements, etc, and wasting countless dollars to essentially incubate organs while the family continued to believe that she would get better.

I can't recall the exact circumstances of the situation, but I do know we spent a lot of time and effort that could have been better used on other patients just to keep this person "alive" artificially. I'm pretty sure she ended up coding, and of course, she finally had cardiac death at that point. I just couldn't believe she lasted a whole week like that! :sniff:

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Specializes in CVICU.
Some people don't want to let go. I had a patient shot in the head and when we did the apnea test, some of the family members flipped out and thought we were withdrawing care. We explained what the test was for. We waited 10 minutes, patient's BP dropped, not a single respiration. The patient was brain dead. He became a Gift of Life patient that night. But I guess some of the family members still didn't accept their relative's fate because his sister called the next day to ask how he was doing and if he was improving.

I saw a family do this once too. Only they refused to donate organs. When we were doing the apnea test, the patient herniated, and part of his brain actually shot out his nose across the room. The family absolutely flipped out at this point, and were asking "what was that?"... umm, yeah, talk about uncomfortable! The patient coded shortly after that and was dead in less than 5 minutes. There definitely needs to be more education to the public in regards to organ donation and brain death.

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Specializes in PICU/NICU.
Yes, this happened on our neuro unit. The lady was brain dead for a week. It was completely ridiculous keeping her alive because we were constantly chasing hypotension, hyperthermia, hypothermia, metabolic derangements, etc, and wasting countless dollars to essentially incubate organs while the family continued to believe that she would get better.

I can't recall the exact circumstances of the situation, but I do know we spent a lot of time and effort that could have been better used on other patients just to keep this person "alive" artificially. I'm pretty sure she ended up coding, and of course, she finally had cardiac death at that point. I just couldn't believe she lasted a whole week like that! :sniff:

Do you remember if it was a religious/cultural issue?? You know its weird because its not about the family being in denial, misinformed, poorly educated on what brain death is- I believe they fully understand the situation. Nor are they demanding we escalate care. They just don't believe in brain death.

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Brain death isn't something that's just 'used' in organ donation. If a patient has a massive stroke, or suffers massive traumatic brain injury, and if they show no signs of brain function, it is perfectly legal and acceptable to do brain death criteria. If the pt is found to be brain dead, they are pronounced dead. Period. Times beyond counting I have said, "Your father is dead. If you want, we will wait to turn off the ventilator until all your family members get here."

Brain death = death is not legally open to interpretation.

Now whether or not a family wants to donate organs of a brain dead individual is something else entirely different, and can be subject to all kinds of cultural and religious norms.

In the old days, there was no way of having the heart and lungs kept going with machines or transplanted. So there was no differentiation between cardiac death and brain death. One always meant the other. However, now, heart and lung function can be supported until maybe their intrinsic function returns and people can survive cardiac and pulmonary 'death'. There is NO surviving brain death. When there is no blood flow to any portion of the brain, that is it. A ventilator can make the chest continue to rise and fall, and the heart can be forced to continue to beat until the total physiologic collapse that results from having no brain function happens. But a heart can beat when it is being held in your hand totally disconnected from the body. Is that life? In the old days, a beating heart symbolized life. They didn't know anything about the master control function of the brain. However nowadays, as cardiac death becomes more and more relative, brain death is more and more clear. We all know people who have survived Sudden Cardiac Death. However, nobody survives when a brain scan shows global no flow.

But there are some few people who keep breathing after the ventilator is turned off. There are even a handful who have made full recovery and gone home after brain death has been declared. People remember these stories and hope that the ones they love will be among those few.

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To "not believe" in brain death, there has to be a lapse in education somewhere? That is like not believing in cardiac arrest.

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http://www.msnbc.msn.com/id/23775873/

http://www.kare11.com/news/news_article.aspx?storyid=498009

I believe in brain death. Not everyone does, especially those without any medical knowledge. And by the recent stories above, either doctors get it wrong sometimes, or the standards are not infallible, or miracles occur.

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Specializes in CVICU.
Do you remember if it was a religious/cultural issue?? You know its weird because its not about the family being in denial, misinformed, poorly educated on what brain death is- I believe they fully understand the situation. Nor are they demanding we escalate care. They just don't believe in brain death.

Well the neuro unit is across from the CVICU (where I work). I occasionally have to float over there. Anyway, I don't recall there being any religious or cultural issues, I think they also did not believe in brain death.

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Specializes in Med/Surg, ICU, ER, Peds ER-CPEN.

Aren't there legal differences from state to state? My family was in a similar situation, my beautiful 16yo neice was in a horrific crash during spring break in Pensacola (2 guys were drag racing and they were found not guilty of vehicular homicide as both her and her bf died and one of the guys even left the scene :angryfire but that's a whole nother rant) my sil felt that that first declaration of brain death was true and correct (we all supported her in this so there wasn't a family battle or anything) but was not allowed to withdraw support until the 2nd set of tests to confirm what the first had already told us came back, maybe it's different with minors as well?

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But there are some few people who keep breathing after the ventilator is turned off. There are even a handful who have made full recovery and gone home after brain death has been declared. People remember these stories and hope that the ones they love will be among those few.

If "brain death" was declared, someone screwed up somewhere. People recover from a vegetative state, not brain death. The definition of brain death is irreversible unconsciousness with complete loss of brain function. You cannot recover from that. Once the brainstem is gone, it's gone.

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Specializes in Neuro ICU and Med Surg.
To "not believe" in brain death, there has to be a lapse in education somewhere? That is like not believing in cardiac arrest.

It is hard for some famlies to understand that the pt is dead when the pt brain is dead because they still see the pt breathing (only with the vent, they are still breathing to them), and the heart is still beating. Some lay people do not understand brain death = death. Sometimes it isn't education but culture. I believe that there was a link posted earlier in the thread that eluded to this with those of Jewish faith. Some are convinced that the pt isn't dead until the heart stops beating, regardless if the brain is functioning or not. No matter that we know differently. This is such a difficult concept for some people no matter what education they have.

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