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.

[Not_A_Hat_Person, RN]

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.

About a year ago, Oprah Magazine had a story about 2 women whose 2-year-old sons needed heart transplants. One was Japanese, and talked about the lack of organ transplants in Japan. Apparently, Shintoists and Buddhists don't believe in brain-death; as long as the body is warm, the soul is present, and the person is alive. Japanese people who need organ transplants have to go overseas because organ donation doesn't happen there.

[KatzchenLSW]

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

In short most of the Orthodox Jewish rabbis feel that Jewish law states that you are not dead until your heart and breathing cease.

So basically as long as the heart is beating, you are alive, even if you have no brain function and a ventilator is breathing for you and (according to Jewish law) nothing can be done to hasten your death (such as stopping the ventilator.)

Here is an article that explains it much better than I ever could.

Its a really hot button issue in the Orthodox Jewish community these days.

[PICNICRN, BSN, RN]

You know...... I find it very interesting that many post are about "educating" these family members. Believe me, I am all about education especially on a topic such as this one. However, I really don't think education is the problem here. We are talking about a situation where a cultural/religious belief conflicts with what is the "standard of care".

Now, I could provide education to a Jehovah's Witness until I am blue in the face on why it would be in his best interest to have a transfusion and he would probably still refuse even if death was certain.

It is like trying to convince a Christian that Jesus Christ is not the son of God...... that is what we are dealing with here. A spiritual belief, many do not abandon their beliefs based on others, regardless of the facts of opposition.

I do not share in these beliefs and that is why I am having such a hard time with this whole situation. But I am trying to support this family and their beliefs at the same time.

I really appreciate the posts of those who share in these beliefs and those who have provided links for info on such cultural beliefs. This thread is really helping me feel a little less stressed about this situation.

[ILoveRatties]

No one has ever survived brain death. This is not persistent vegetative state.

What if your child were critically ill and there were no available beds in the ICU, and your child, who was neither brain dead nor cardiac dead when they needed ICU care, died? And one of the ICU beds was occupied by a dead body?

If a family does not 'believe in' brain death as death, is refusing a second brain death workup after a first one comfirmed brain death, the patient should be moved out of the ICU. On the vent, or off the vent. With compassion.

When nurses say things like we all have read about people who have 'survived' brain death, that tells me that they believe there is brain death, which is almost death, and that there is cardiac death, which is real death. How can people who think that way assist families?

I read about the conflicting vews different Orthodox Jewish teachers have of brain death. One said you can only be brain dead if you are decapitated......You can't nor should you try to convince people of anything. That being said, I should not have to care for dead bodies while the families wait for the heart to stop.

The courts in all 50 states support the definition of brain death. So it's not a legal question.

[chasingthedream]

So basically as long as the heart is beating, you are alive, even if you have no brain function and a ventilator is breathing for you and (according to Jewish law) nothing can be done to hasten your death (such as stopping the ventilator.)

Does being on a machine that keeps the heart beating factor in here? I'm just curious. If the machine is doing all the work but yet the heart is still "beating" then what? I am not of Jewish faith, but am always curious about other faiths and cultures.

[Guest343211]

No one has ever survived brain death. This is not persistent vegetative state.

What if your child were critically ill and there were no available beds in the ICU, and your child, who was neither brain dead nor cardiac dead when they needed ICU care, died? And one of the ICU beds was occupied by a dead body?

If a family does not 'believe in' brain death as death, is refusing a second brain death workup after a first one comfirmed brain death, the patient should be moved out of the ICU. On the vent, or off the vent. With compassion.

When nurses say things like we all have read about people who have 'survived' brain death, that tells me that they believe there is brain death, which is almost death, and that there is cardiac death, which is real death. How can people who think that way assist families?

I read about the conflicting vews different Orthodox Jewish teachers have of brain death. One said you can only be brain dead if you are decapitated......You can't nor should you try to convince people of anything. That being said, I should not have to care for dead bodies while the families wait for the heart to stop.

The courts in all 50 states support the definition of brain death. So it's not a legal question.

Wow. . .all I can say is wow. I mean it certainly seems logical enough. Yet there is a problem I've encountered. The child's family wanted a second opinion on brain death testing and criteria from outside the facility. It seemed reasonable enough to me. One of the nurses, however, that helps head up the educational aspect of palliative care liked to want to jump down my throat; b/c I didn't believe the family's request was unreasonable. It really shouldn't be.

Given, the family may have had a hard time involving outside medical people--probably for legal reasons--but it shouldn't have to be so hard. If it helps a family come to terms with things and puts peace of mind in them, it should be done if it can be done.

But listen, what if, just hold on, what if the perfusion to the brain was low or poor but not completely nil and the patient wasn't yet diagnosed as PVS? What if it comes down to interpretation of scans on this issue? What about the gray areas on interpretation of what's on the grey matter? In all of medicine, and I've been a critical care nurse for decades, there are always areas that are gray, areas open to interpretation--or missed or variant interpretations.

And yes, I have worked and have seen a few miraculous things in my day. Things that are inexplicable to medical science.

I am not saying we should forget about BDC testing or we should just keep folks lingering forever on supportive devices and machines. I am saying there is still margin for error, and it behooves all to be very careful.

I have also been a critical nurse long enough to see nurses and docs etc get a little trigger happy over having to deal with what they believe is "dead weight" so to speak. Please do not tell me this attitude is not around at times, b/c I have done this a long time, and I've seen this attitude more than once and more than I've cared to see it. Where do people think all the gork and vege jokes come from. Sure some of it is to relieve stress; but some of it is really how some folks end up feeling.

Finally, yes, the beliefs on the family must be taken into consideration. What may seem black and white to you may not be so to them.

Yes, sorrowfully I have seen medical teams and families carry on with the ugliness of keeping literally dying flesh alive--you could actually smell and see it when you looked at the gross necrosis on the patients--way too long.

There are times when there are and will not be any easy answers. We should give the benefit of hope for life as long as possible, we should accept the things we cannot change--such as patient death--and we should respect life and even the potential for miracles--though they may seem rare.

Bottom line is this. I truly believe we should always err on the side of life--and we should not be too quick to move away from it.

And remember that legal definitions may be one thing, but there is always the consideration of the issue of interpretation and the unexpected.

And regarding the latter part of what you said, well, as nurses, we all have had to take care of dead bodies with utmost respect and dignity and sensitivity, regardless of whether their hearts were still beating or not. Whether it is post mortem care or care of a patient that is BD, PVS, or something else that doesn't look very good, we still need to consider the importance and privilege of caring for folks not matter what the condition--dead or alive. If you don't want to take care of people in such instances b/c it is so cut and dry for you, please consider doing something else. Seriously.

And I say this, and I have been saddened and broken-hearted at things like having to take care of kids that were deader than dead--as I said, you could see and smell it--wondering if they are suffering on some level we may not know, or at least in terms of the later memories of them to their families and others--great indignities of things beyond vents and ECMO and you name it. I definitely know what I am talking about here.

But for me, it isn't about me and what I should have to do. It is about the poor patient and family. It isn't pretty watching some folks linger--as I have described. But it requires the utmost carefulness and sensitivity. I've taken care of people and kids that I didn't need BDC to know they were gone. I knew when their pupils blew. I knew when they went into major coagulopathy and were bleeding and spilling blood everywhere and sadly the unit started to smell to high heavens--and I knew in my spirit, and that is not something I can define in any science lab.

We just need to be very, very careful and accountable and open, and we need to always err on the side of life.

As a parent, I may darn well need to be doubly sure of who is interpreting the BD testing and if another group of experts outside the setting would tend to agree before I would be OK with a time of death. And let me tell you, if I had any question whatsoever and the hospital gave me any grief about it--especially understanding human fallibility--you better believe I'd be on the phone with my lawyers. Why? People can get too blase' about such things in medicine and nursing. I have seen it. And darn it, I'd need to be sure. I don't think that is at all unreasonable. Yes PVS is different from BD; but interpretations or test quality and other factors could be the difference between those two things one way or another by way of human bias or fallibility.

These hospitals need to be very careful about erring on the side of life and being respectful and open. One day someone is going to call something into question w/ the right legal team, and even if the BDC looks hands down in favor of pulling the plug, the potential bad press and other grief will still cause the hospital much harm.

[fmoore723]

PICNICRN-

I want to thank you for sharing this story, and enlightening a nurse who has never had to deal with this sort of situation. You and others have opened my eyes and taught me several things that I otherwise would not have known. Do you care or can you, share the ending of this story? I see it has been over 8 month...

Thanks!

[caroladybelle, BSN, RN]

Orthodox Judaism is not the only group that this applies.

Brain Death is not accepted as "death" in Japan.....as such, many Japanese have to go abroad for transplants. They really have no choice when it comes to heart or heart/lung transplants as those cannot be harvested from cadavers (DOA cases, etc.) and effectively transplanted. And while some organs can come from cadavers, many are not in optimal condition.

The few cases of heart transplants in Japan....those responsible, including MDs...there were serious legal repercussions.

[PICNICRN, BSN, RN]

PICNICRN-

I want to thank you for sharing this story, and enlightening a nurse who has never had to deal with this sort of situation. You and others have opened my eyes and taught me several things that I otherwise would not have known. Do you care or can you, share the ending of this story? I see it has been over 8 month...

Thanks!

Well..... after the first brain death exam- we stopped escallating any care- no titrating gtts up, no labs, no meds, ect ect. These parents were not saying "do everything"- just would not accept brain death-so....Since she was already DNR- her body went very quickly and she had cardiac death pretty quickly from there. Family was all there including their religious leaders- they did a ceremony and stayed with the body for a very long time. Very sad.

[talaxandra]

While I accept that this may very well have been due to misdiagnosis rather than a flaw in the concept of brain death, the fact remains that there are well documented cases of patient officially diagnosed as being brain dead who recovered, and at least one case of a boy who's been physically alive but brain dead for over 15 years. When health care providers are confused about the concept (witness how many times in this thread brain dead patients have been referred to as 'dying' from cardiac arrest, dying after a brain death diagnosis etc) it's no wonder lay people are confused.

However, as many members have pointed out, disbelief in the concept of brain death is often culturally mediated, though often presented as being due to a lack of knowledge. That's a very secular, technology-based position to hold, and starting from a stand point that families who disagree are ignorant, even willfully ignorant, or in denial, closes off a therapeutic relationship with them. Imagine how distressing it would be to believe your loved one is gravely ill but is being treated as though they are dead.

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's a specious argument - anyone with ventilator-dependent quadriplegia would be dead if not on a machine but we don't say they're not really alive. 50 or 60 years ago almost everyone currently in an ICU would be dead, along with almost everyone with any chronic illness from diabetes to cystic fibrosis.

The point is that the West believes in consciousness as being the most important quality; that position isn't universal.

To the OP: I'm glad this thread and the various responses have helped. Brain death is presented in health care as an unassailable fact, no different or open to debate than any other aspect of ICU practice. Outside healthcare, however, it's a very different story. The philosophical literature is full of discussion, 50 years after the first reported cases of coma de'passe, and the discussion is becoming muddier and more heated every year. I say this not to undermine anyone's position but to shed light on why some people may disagree but not be uneducated.

[blueheaven]

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

What's the deal with "tiny hospital in the boondocks'? We did the testing to verify brain death. We've had our patients who were brain dead, but we didn't have the cultural issues to deal with. Families were usually accepting (or came to accept) and some donated organs. Yes, we removed the vent and let them complete the dying process. BTW our care was better than the "uptown hospitals" we just didn't have all the specialty bells and whistles like the big ones. (This was in Ohio) Wish it were still open

[Guest343211]

Well this is not relevant to the discussion, but it is in response to your last comment Blue.

I've worked in mostly big, university hospitals, and I've worked in community city hospitals, etc. Sometimes there is this attitude that seems psychologically compensatory. That is, "Our's is a little hospital but our care is better." kind of attitude.

I don't think that is fair. It depends in my experience on who is on and what the overall quality of the team that is on is like and what is being done and what the overall acuity and staffing of the unit is like.

We once had a patient that was a nurse from a suburban community hospital brought to our care. I won't go into the multiple complexities of what was wrong with her. It really was considerable, on many levels--even involving what appeared to be multiple wounds of self-infliction that helped lead to her demise. (And this is something friends and family had some trouble with in terms of understanding and acceptance--Munchenhausen.)

The community hospital ICU nurses claimed that she was not getting the best of care, even with all the bells and whistles. Trust me. She was. We busted our hump caring for her and doing tests and practices (CONTINTUALLY testing endlessly over 24 hour periods) that generally would not have been done in that community setting at that time--and generally may not be to this day in that community setting.

We killed ourself on this patient on all levels; but multi-systems failure was unavoidable for her. The community hospital nurses talked the family into moving her back to their ICU, and that is where she died.

Now maybe b/c she was one of their own, and things really were too far gone for her to have a meaningful survival, short of a miracle, perhaps that is why they brought her back to their hospital. This is something I understood; since she was "one of them" so to speak.

What was grossly unfair was the unsubstantiated, biased statements regarding the care she received at our bigger and more intense university hospital. I knew the attendings, the docs covering, and I knew the nurses caring for her. She had a good team, and I was one of the ones that cared for her.

Many a shiftsI never got even one pee break, and we often put her as one-to-one, even though most of our patients had very critical issues going on, and doing this was not always possible. Yes in these settings, you can have a 20 + patient unit and all of them are so sick and we are doing so much with them--open chests, IABPs, CAVHD, unusual types of PD, q 30 min ISTATS, indepth caring of one body system to the next and never ending labs--f/u titrations, hemodynamic indices, constantly moving and stablizing them while going from study to study--even though they really aren't stable enough to being moving so much. . . it's a lot--and all of it requires a lot of accountability and carefulness in practice.

These units call for anal-retentive behavior from the nursing and medical staff. And every tiny thing is combed over with a fine tooth comb. It's non-stop. That's the nature of the beast at times in big, inner city teaching hospitals, even in big teaching children's hospitals. I can't tell you how many times I had assignments of crashing babies that should have been one-to-one. It's only by the grace of God and working completely non-stop and whatever support I had or gifts God has given me that in those units my patients faired well. My goal was to move people (babies or otherwise) as forward as possible and keep everyone alive, kicking, and with the potential for meaningful survival. These places can be killers to work in, and you don't often get breaks--yes, even in ICUs or CC (STICUs, CTs, NeuroICUs, Neonatal or Cardiac intensive units,) where you at max should have two kids or patients--though on occasion, even with standards in place, higher ratios do occur. You can't draw blood from a stone, and supervisors can't always get the qualified staff to fill in. Sometimes even if you pull from lesser acuity units, the acuity of your patients is so great that you end up mini-precepting some pulled nurses from elsewhere while you juggle your other critical kids. These places can be quite challenging to work in.

The bottom line is that if you haven't worked in a lot of these busier centers, you may not have a clue at how you WILL bust your behind, your brain, and your spirit if you truly care about what you are doing and the patients.

In general, there is often a huge difference between the acuity of care for critical care patients in these centers compared with most community hospitals. I have worked so many of them, honestly, I am not making this up at all or using hyperbole.

Some of the bigger reasons for the differnce are number, specialization for compexity, and the fact that these places often have multiple stepdowns to accomodate the number of admissions and turnovers--so as they improve, they are quickly moved ahead (depending upon various factors)to the very busy stepdown units--many of these in these bigger hospitals are like critical care units themselves.

Going from one type of community unit to one of these bigger center units can be quite a reality shock. Some nurses make the adjustment and others do not.

When I go and work in the community critical care units, many times I feel like we are sitting on our hands or doing busy work. No, not always, that is true. One can always get a really sick patient that will keep you running, regardless of where you are.

But by and large, you generally get more time to break and pee in these community units compared to the bigger center units. And when you have worked long enough between the two, especially in multiple places, you can see why.