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.

[tencat]

From a legal perspective, I think a lawyer would have a field day with any facility that said 'sorry, they are dead and we're pulling the plug regardless of whether or not you agree', at least here in the USA I think that would happen. I happen to agree that they are dead, case closed. But try to convince a 'lay' person of that when they are clinging to the belief that a mechanized heartbeat and mechanized respirations equals life.

[Medic09, BSN, RN, EMT-P]

From a legal perspective, I think a lawyer would have a field day with any facility that said 'sorry, they are dead and we're pulling the plug regardless of whether or not you agree', at least here in the USA I think that would happen. I happen to agree that they are dead, case closed. But try to convince a 'lay' person of that when they are clinging to the belief that a mechanized heartbeat and mechanized respirations equals life.

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?

[PICNICRN, BSN, RN]

This is not a matter of 'not letting go--poor family'. Sorry, but dead is dead. You don't have to ask a family if their loved one is dead. Brain death = dead. Period. Why have to check twice? And you don't have to get a family permit for brain death criteria.

Why would this be allowed to go on? Is it a tiny hospital in the boondocks, or something?

A family doesn't have to agree with you about this. You tell them: 'so-and-so is dead. I am very sorry.' You tell them to say their goodbyes. You turn off the monitors and vent. You do not need permission for this.

It is not a Terry Shiavo situation. The patient is dead.

It's best to be a broken record: "He is dead." Never differentiate between brain death and death. They are the same thing.

I have found that when the medical professionals don't have this straight in their own heads/minds/heart, it can be very confusing for families who are looking for the last little bit of hope.

Not a tiny hospital where we don't know what we're doing- thanks for asking. Actually a large teaching facility/trauma center.

I am very familiar with braindeath criteria and I totally agree with what you are saying. As for getting another exam..... with a pediatric patient TWO braindeath exams are done either 12-24 hours apart depending on their age. Now, after the SECOND exam the patient is given a time of death- we take off support end of story. In NO WAY has this family been lead on or missinformed on the status of the patient and they are reminded that the pt is "dead" every time they ask a question about why a certain V/S is this or that.

Problem arised when after the first exam... they informed us that their culture does not accept braindeath and they are refusing another study. I have never come across this before. And yes, you do not "need" consent for a brain death exam however, we all know that as a patient you have the right to refuse any test or treatment for any reason. So in fact, we cannot just do it. I think it gets really sticky when you are dealing with a culture's religious beliefs and attorneys and such.

I was just wondering if anyone else had ever been involved in a situation like this before?

Oh........ as for organ donation, I think you can all see how that conversation went.

[BLGBARBIE]

Unfortunately have been in this situation. Very tiring for the family AND the staff. Family refused because they knew that two tests indicating brain death means the pt is taken off life support. Family well educated. Eventually, the pt died of cardiac arrest. It's my understanding that once the brain goes, it's just a matter of time for the heart...There was a similar case in Washington recently where cultures collided. The pt ended up in cardiac arrest and passed away.....

[PICNICRN, BSN, RN]

MEDIC09....

Thanks so much for your post! The links and previous threads were very helpful to me!

Like I said the whole situation is very difficult for all involved.

[RN1982]

Its very hard. I took care of a patient who coded while in labor. She had some perfusion to her brain and she had a herniation. Family didn't want to take her off the vent because even though she had no purposeful movement, her pupils were fixed, and didn't respond to pain. Anyhow, she was on our unit for about a month and a half. We sent her to a vent facility and a month later found out she died. It's hard for all. I felt bad for her mom and the baby who is fine. Ethics was involved for the entire time. It came to the point that the hospital was going to get guardianship of the patient because the family would not make any sort of decisions regarding whether they wanted to make her comfort care or send her to an ECF. But it's hard because you know what the end result will be and despite what the family is told, they still believe their family member will get better.

[PICNICRN, BSN, RN]

My point is that you don't need permission from a family member to do the blood flow study if the other tests indicate brain death.

You do not need permission to do it....... but they certainly can refuse ANY treatment!

[HappyPediRN]

Rattie, I don't mean to be disrespectful but you're coming across as very abrasive. I certainly hope you don't present things so black and white when it comes to families because it comes off as stomach-turning. When a family's child is lying in an ICU attached to tubes and have no idea what's what and who's who, it's not so easy to just tell them "Your child is dead, we're removing him from the ventilator. Do you want to donate his organs?" Those are the last moments the family will ever have with that child, and their hopes and dreams of the future are now completely destroyed. Your frequent exposure to end-of-life matters and organ donation makes it easy for you to say death=death, turn off the monitors. As nurses we know this, but it's not about us. It's about the families and the patient. It's our job to educate but not to force it down their throats. We certainly don't want to give false hope but that has to be balanced with kindness and compassion to explain why the patient is never going to wake up. I would hope if my child is ever lying in an ICU the staff would grant me that respect. If they persist on having everything done, that's a different issue and certainly a situation for the ethics committee, but at least let them begin to process before you start turning off the ventilator. It must be extremely difficult to think rationally when you feel as though your heart has been ripped out. Above all else, the patient lying brain dead in that hospital bed may be a Gift of Life, but they are still a human being.

[ILoveRatties]

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.

[Purple_Scrubs, BSN, RN]

This is a cultural difference, and even if it goes against what we know is medically correct, we should respect the family's beliefs. Similar to Jehovas Witnesses refusing blood transfusions - even when we know it is medically the right thing to do, we have to abide by their wishes. To me this is no different. If a person's religious beliefs are that brain death does not equal death, then we should respect that even though we know medically that is not correct. Imagine the trauma to this family if life support were to be forceably withdrawn when in their beliefs this is killing their child. You will not change their beliefs, and their child is dead whether you withdraw support or not so why not let them handle it as their religion sees fit? The child is already dead, he is not suffering.

I understand that it is not ideal, but the family's religious beliefs should be respected. It saddens me deeply to hear that not all nurses believe this.

[nrsang97, BSN, RN]

This is a cultural difference, and even if it goes against what we know is medically correct, we should respect the family's beliefs. Similar to Jehovas Witnesses refusing blood transfusions - even when we know it is medically the right thing to do, we have to abide by their wishes. To me this is no different. If a person's religious beliefs are that brain death does not equal death, then we should respect that even though we know medically that is not correct. Imagine the trauma to this family if life support were to be forceably withdrawn when in their beliefs this is killing their child. You will not change their beliefs, and their child is dead whether you withdraw support or not so why not let them handle it as their religion sees fit? The child is already dead, he is not suffering.

I understand that it is not ideal, but the family's religious beliefs should be respected. It saddens me deeply to hear that not all nurses believe this.

I was thinking the same thing but didn't know how to say it.

[nrsang97, BSN, RN]

Rattie, I don't mean to be disrespectful but you're coming across as very abrasive. I certainly hope you don't present things so black and white when it comes to families because it comes off as stomach-turning. When a family's child is lying in an ICU attached to tubes and have no idea what's what and who's who, it's not so easy to just tell them "Your child is dead, we're removing him from the ventilator. Do you want to donate his organs?" Those are the last moments the family will ever have with that child, and their hopes and dreams of the future are now completely destroyed. Your frequent exposure to end-of-life matters and organ donation makes it easy for you to say death=death, turn off the monitors. As nurses we know this, but it's not about us. It's about the families and the patient. It's our job to educate but not to force it down their throats. We certainly don't want to give false hope but that has to be balanced with kindness and compassion to explain why the patient is never going to wake up. I would hope if my child is ever lying in an ICU the staff would grant me that respect. If they persist on having everything done, that's a different issue and certainly a situation for the ethics committee, but at least let them begin to process before you start turning off the ventilator. It must be extremely difficult to think rationally when you feel as though your heart has been ripped out. Above all else, the patient lying brain dead in that hospital bed may be a Gift of Life, but they are still a human being.

I completely agree with you. Very nicely stated.