Refusal of Brain Death exam??

[PICNICRN]

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.

[nrsang97, BSN, RN]

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?

I don't know about peds, but in adults we do a brain perfusion scan in nuc med, and ice water calorics (where they squirt ice water in the ears and watch the way the eyes respond). These are done one time each. I have never known them to be repeated.

I am so sorry that the men that did this to your niece wern't punished. I am sorry for your loss as well.

[Tippy-ta-ta]

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.

miracles do happen...it is rare but they do happen. I have seen it when I worked ICU..patient was declared brain dead, wife had her church elders, prayer circle (about 10 people all together) come in lay hands and pray over her NON-BELIEVING husband, he moved out of the ICU a week later, and went home a week after that.

I never used to believe in faith healing like that, i have heard stories and have always been doubtful until I seen the affects of that. Although it is rare, miracles really do happen.

[Tippy-ta-ta]

I told my dh if anything were to ever happen to me and I was on a vent and unconscious. That if I had not shown any signs of improvement in 2 weeks time, to let me go. Even if I was declared brain dead, I would like to think that my dh would give me a fighting chance before he pulls the plug. I know it's tiring and frustrating for the nursing staff to see this. but ultimatley it's the family that has to deal with the death of a loved one. Regardless of whether or not they are grasping the reality of it. Some people believe that if they pull the plug they are killing there loved one. If that were my child I would have a really hard time making that desicion. I don't think I could do it, no matter how much it was explained to me and what I already know. I would have to pray that GOD would give me the answer as to what to do and if it didnt' feel right to me I wouldn't do it.

[PICNICRN, BSN, RN]

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 not lack of education or understanding---- it is religion! I know it is hard to comprehend if it is not your own religion. Just as some religions do not accept blood transfusions or organ transplantation, some do not believe in birth control---- we might call that misinformed or lack of education--- but that is their belief. Same case here---- person is alive until their heart is not beating according to their religious beliefs- therefore, they do not accept brain death as death.

[PICNICRN, BSN, RN]

Some people believe that if they pull the plug they are killing there loved one. If that were my child I would have a really hard time making that desicion. .

This is how it usually goes...... child comes in with trauma or whatever- with VERY POOR odds- we do what we can but prepare the parents from the begining for the reality that the kid will most likely not survive, we lay the groundwork early, then we start approaching the possibility of DRN or withdraw of support and go from there. If they are not ready for that we go from there and continue to prepare parents for the worst and provide them with TONS of support.

Then... child has brain death exam and meets all criteria for brain death(apnea test/cold calorics/reflexes/EEG/blood flow study/ect,ect. parents are informed that the kid is brain dead and exactly what that means- that they are DEAD.Organ donation is called- they approach the family per their protocol Then, for pediatric patients, we repeat the exam 12-24 hours later depending on their age. Now, I'm not really sure why it is repeated in kids but I guess it just gives the parents time to process and also allows them to feel that by doing it 2 times then it is certain. Many times after the first exam, the parents will just decide to gather the family and take the child off support at that point.

If not, the second exam is done. At that point the child gets a documented time of death and the doc says something like- I am going to turn off the vent now, ect,ect. And the support is removed and the parents can greive.(Or they have already decided to donate organs)

From my experience, parents seem to need that formality of the brain death exam to let go. When the kid is declared brain dead and we take them off the support- many parents are almost relived because they did not have to make the decision to withdraw support- it is out of their hands They did not have to "give up" or "let them go" because they are already dead- officially and no decision needed to be made.

[VickyRN, MSN, DNP, RN]

PICNICRN, the child is gone (short of a miracle). His/her empty shell is being kept functional by machines. Your true patients now are the child's family. You have the privilege of showing them empathy, caring, unconditional acceptance as they work through their worst nightmare. You have to accept them where they are in the grieving process and allow them the time they need to process. I know it is very, very difficult. Thank you for sharing your heart with us. I am keeping you and the patient's family in my thoughts and prayers.

[birdgardner]

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.

These two people recovered from what was called brain dead. They were so declared by their physicians. They hadn't been unconscious long enough to be declared PVS.

The only reason we know they weren't brain dead is because they survived. If they had died, brain death would be considered the right diagnosis. If the organ procurement team had been a few hours closer, the young man probably would be dead.

[RN4NICU, LPN, LVN]

These two people recovered from what was called brain dead. They were so declared by their physicians. They hadn't been unconscious long enough to be declared PVS.

The only reason we know they weren't brain dead is because they survived. If they had died, brain death would be considered the right diagnosis. If the organ procurement team had been a few hours closer, the young man probably would be dead.

I understood that part, but what I was saying was that I believe the diagnosis may have been made in error (how was brain death confirmed?) There are extensive criteria for declaring brain death and confounding factors must be ruled out. If any step was carried out improperly or any confounding factor overlooked, the results would be worthless (just like any other test). Just wondering.

http://www.health.state.ny.us/professionals/doctors/guidelines/determination_of_brain_death/docs/determination_of_brain_death.pdf

[tencat]

It isn't a question of 'lay' or 'professional'. It is a question of what importance is ascribed to what criteria. The notion of 'death' blurs the boundaries between simple mechanical definitions and moral impact.

So, if you had no legal liabilities to worry about and say (for example/argument only!) a Navajo family said clearly after all your explaining 'this does not constitute death in our culture', you'd write them off as ignorant 'lay' people, and get ready to pull the plug?

Just because a culture or religion believes that death has in fact not occurred does not mean it has not. Morally, legally, whatever. Dead is dead. If grandma was NOT on machines, as was the case for most people even 50 or 60 years ago, it would be a moot point. She would be dead.

That being said, I would definitely support the family as much as possible and educate as much as I could. Physical death is defined by certain criteria. People used to believe that the world was flat and the sun circled the earth. Both of which have been proven to be not true. Were people ignorant? Yup. Do they know better now? Yup. People learn and believe whatever they are ready to learn and believe. We can lead a horse to water, but we can't make him pull the plug. I would never be so heartless as to personally pull the plug on a patient whose family is not ready to learn. But I support educating the heck out of them anyway and hope that they come to their senses eventually. Or hope that the poor patient finishes the dying process on his/her own thus making the issue moot.

[birdgardner]

From the article: "But 36 hours after the accident, doctors performed a PET scan of his brain and informed his parents, along with other family members who had gathered to keep vigil at the hospital, that there was no blood flowing to Zack’s brain; he was brain-dead."

I'm assuming that the MDs did all the various reflex tests that led them to order the PET scan to confirm their suspicions of brain death and that a second independent set of MDs did a second set of tests to confirm brain death so that the organ procurement team could be called.

A medical investigation into whatever failed here would be interesting reading, and the hospital for sure should have conducted one, and it should be public. The patient says he heard the doctors declare him brain dead and he was mighty ticked off about it.

Maybe perfusion can stop in rare cases without cell death, since major injury is often caused more by the re-perfusion than by the ischemia. So what are the factors that would let a patient re-perfuse well?

[KatzchenLSW]

Just because a culture believes that death, has in fact not occurred does not mean it has not. Morally, legally, whatever. Dead is dead. If grandma was NOT on machines, as was the case for most people even 50 or 60 years ago, it would be a moot point. She would be dead. Some Navajo also believe in skin walkers and 'witching' people. Is that 'truth'? No. It is a cultural belief. Do the Navajo still burn down the house when grandma dies there? No. The culture has adjusted to find other ways of dealing with the belief that it is bad mojo to be in the same house where grandma died. Navajo, Spanish, White, Black, Purple...whatever. Dead is still dead. It is a waste of medical resources to keep grandma on life support because it doesn't meet a cultural definition of death.

Wow, how culturally insensitive and ignorant. As a member of the Jewish faith (although not as observant as many) I am outraged that you believe that the medical definition of death should outweigh my beliefs and moral system. I suggest you actually learn why Jewish people believe that brain death does not equal death before you tell them that their belief is "wrong" and that they should move on.

Last I checked, nursing practice was still based on the holistic model which includes taking care of the spirit as well as the body.

ETA: Just wanted to add that Navajo culture did not "adjust" it was oppressed by the (WASP) majority in this country.

[VICEDRN, BSN, RN]

Wow, how culturally insensitive and ignorant. As a member of the Jewish faith (although not as observant as many) I am outraged that you believe that the medical definition of death should outweigh my beliefs and moral system. I suggest you actually learn why Jewish people believe that brain death does not equal death before you tell them that their belief is "wrong" and that they should move on.

Last I checked, nursing practice was still based on the holistic model which includes taking care of the spirit as well as the body.

ETA: Just wanted to add that Navajo culture did not "adjust" it was oppressed by the (WASP) majority in this country.

Can I ask you why the Jewish people do not believe that brain death equals death?

I believe that there was a little boy in New York who died in Virginia or Maryland recently who was Jewish and his parents refused to withdraw support. (I think he was 10 or 12 or so)