I'm about to begin a Masters research project about ICU nurses talking to brain-dead patients (oh the joys of ethics approval committees!). My interest in this started when I read 'Rethinking life and death' by ethicist Peter Singer - he described observing nurses in ICU talking to brain dead patients as though they were alive, and from that decided they did it because they didn't understand that the patients were clinically dead.
I think that nurses who talk to their brain dead patients do it for a variety of reasons, which may included (but are not limited) to issues about reconciling the apparently living body (sensory knowledge) with knowledge about brain death (intellectual knowledge). I don't work in ICU, though I do work on a nero unit; I always talk to the unconscious, and sometimes talk to patients who have died.
I was at a conference in the UK last year, and an ICU nurse educator said that she not only never talks to brain dead patients, she corrects any students who do. However, one of the anaesthetists there always speaks to his brian dead patients. They're ruining my research!
What do you all think? This isn't something that will make it into my thesis, BTW, but I'm interested in what you think about the project idea, and about your own practice.
Specializes in Neurology, Neurosurgerical & Trauma ICU.
Those involved in transplantation went to my husband wanting little Eric's organs. My husband said he wanted to talk with the Greek priest in the area first. He did. My husband came back and told them no. These same people then went to my parents and told them that my husband had agreed but they needed my parents signatures as well. My parents who were suspicious went to double check. lies. lies lies.
Another incident was that the decision to remove from life support had not been made yet. My mother-in-law who was a head nurse at another hospital noticed that the respirator had been turned way down. My husband furious called the person in charge whose response was, "well, by law we dont have to keep your child alive any more". Gee. Give my husband some time. It had been one day. one day. The respirator was then turned back up.
The point is that sometimes medical personnel can predict what the outcome will be. But sometimes they cannot. My prognosis was dying. They were wrong. Then it was I would have brain damage from lack of oxygen. I have some problems with short term memory but nothing major. Then it was I would be in a wheelchair. I am not. Then it was I would have major scarring. I have very little and you cant tell I am even burned at all.
The line between life and death is so blurry.
OK, there are several things that I want to say in response to this post....the first being that I'm sorry to hear about your losses and that I'm glad to hear that you are doing well now.
However, brain damage and brain death are not the same thing. In your case, I am sure they were looking to make you a donor after cardiac death (or non-heartbeating donor as they used to call it).
Now, in my facility, we are required to call CORE (our organ procurement agency) when a patient has a GCS of 6 or less. Does this mean they are necessarily going to do anything? No, it just means that for now, we have to let CORE know about this person. Each case is different, sometimes they'll come in, sometimes they don't.
As for the ventilator being "turned down"....well, we do it all the time. And as long as a pt is tolerating it, then there is NO need to put them back on more support!!! It just makes it harder to get them off later!!!
And no offense to your family intended here.......but a family in crisis is just that, a family in crisis! OFTEN (more often than not) a family hears only certain parts of what is being said to them in conversations. And despite the education they may have, it's just natural to only hear and hold on to tiny tidbits of information and totally not hear/understand the other bits. That's why things get related differently after-the-fact than they actually were. Heck, I've stood at my bedside, told family members one thing....then when someone else joins the bedside and they attempt to repeat what I said to that person, it gets ALL messed up!!! Anyone that has ever dealt with these families in the ICU can back me up on this.
Perhaps the organ procurement agency was a little overzealous in your case, I can't say because I wasn't there. But usually they don't talk to the family unless the docs, RNs, etc. feel there isn't any hope of meaningful recovery. Maybe there was a small miracle in your case.
Specializes in Neurology, Neurosurgerical & Trauma ICU.
That's what I thought, too, but the cases van Norman refers to are definitely patients who have been (evidently incorrectly) diagnosed as brain-dead:
"Case 1 - An anesthesiologist questioned his colleagues on the Internet about whether strict brain death criteria are relevant when the organ donor is not expected to survive his or her injuries. He reported a case in which, while caring for a multiple organ donor who had been declared brain dead after an intracranial hemorrhage, he administered a dose of neostigmine to treat an episode of tachycardia. The donor began to breathe spontaneously just as the surgeon announced that the vena cavae were ligated and the liver had been removed. Upon subsequent review of the patient's chart, the anesthesiologist learned that the donor had gasped at the end of an apnea test, but a neurosurgeon had certified that brain death criteria had been met.
Case 2
During an educational course for anesthesiologists, a participant described a case (not independently verified by the author) in which a 30-yr-old patient was admitted to a level 1 trauma center with severe head trauma. A computed tomography scan demonstrated diffuse cerebral damage and blood in the fourth ventricle. The patient was declared brain dead by two physicians, and preparations were made to obtain vital organs for transplantation. Liver transplantation was planned for a level 1 recipient: an otherwise healthy 19-yr-old with hepatic dysfunction of unknown origin.
The on-call anesthesiologist noted that the donor was intubated but breathing spontaneously with a tidal volume of 800 cm3 and a respiratory rate of 20 breaths/min. When the anesthesiologist questioned the diagnosis of brain death, one of the declaring physicians reportedly stated that because the donor was not going to recover, he/she could be declared brain dead, and that in any case the liver recipient would die imminently without transplantation. Vital organ collection proceeded over the protests of the anesthesiologist, who observed donor movement and hypertension with skin incision that required treatment with thiopental and a muscle relaxant. The liver recipient died in another operating room of acute hemorrhage before liver collection was complete. The liver went untransplanted.
Case 3
An anesthesiologist requests that his/her department review the events surrounding a potential organ collection. A young woman receiving intravenous magnesium sulfate for pregnancy-induced hypertension suffered seizures several hours after lady partsl delivery. After the seizures, she was unarousable and posturing. She was intubated after intravenous administration of 4 mg pancuronium, and a computed tomography scan showed coning, diffuse edema, and occipital lobe infarcts. A neurologist determined that the patient had suffered a "catastrophic neurologic event." Intravenous esmolol that was being infused to control blood pressure and heart rate was discontinued, and permission was obtained from the patient's family for the patient to become a vital organ donor.
On the day of anticipated organ collection, the anesthesiologist found that the donor had small, reactive pupils, weak corneal reflexes, and a weak gag reflex. The esmolol infusion was reinstituted. Further review of the patient's chart showed the previous administration of pancuronium, and a serum magnesium level of 5.1 mEq/l, more than 2.5 times normal several hours after the magnesium infusion had been discontinued. After the anesthesiologist administered edrophonium 10 mg intravenously, the patient coughed, grimaced, and moved all extremities.
Vital organ collection was canceled, and after consultation with a neurosurgeon, the patient underwent placement of an intracranial pressure monitor. Intracranial pressure was initially 18 cm H2O and gradually decreased with therapy to 10 cm H2O. The patient ultimately regained consciousness and was discharged home. She was alert and oriented but suffered from significant neurologic deficits. Gail A van Norman MD A Matter of Life and Death: What Every Anesthesiologist Should Know about the Medical, Legal, and Ethical Aspects of Declaring Brain Death Anesthesiology Volume 91(1) July 1999 pp 275-287
It may very well be that these are isolated cases, but they're disturbing nonetheless.
Sounds to me like these cases, if true, then the MDs need a lesson in not only properly declaring brain death, but also on what brain death is. In the case of the person breathing spontaneously.....well that is one of the criteria, the person CAN NOT be breathing spontaneously....if they are, they are NOT brain dead, yet.
As for the third case you cited...you did not say that she was ever declared brain dead....more sounds like they were withdrawing care. Also, one CANNOT be declared brain dead, when there are certain things in the bloodwork that could even just possibly explain them not responding normally.
Perhaps the organ procurement agency was a little overzealous in your case, I can't say because I wasn't there. But usually they don't talk to the family unless the docs, RNs, etc. feel there isn't any hope of meaningful recovery. Maybe there was a small miracle in your case.
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Part of the problem here was having no concept of cultural differences. You would never ever approach an Orthodox family about this. The organ people pretty much were asking my family was it ok to mutilate my children (and me). And make money at the same time!
Are they given no training in cultural differances? Religious beliefs??
Part of the problem here was having no concept of cultural differences. You would never ever approach an Orthodox family about this. The organ people pretty much were asking my family was it ok to mutilate my children (and me). And make money at the same time!
Are they given no training in cultural differances? Religious beliefs??
Just a quick question, as I don't have much experience with the Orthodox religion at all. I understand that some cultures are seriously against organ donation, which they see as mutilation of the body. But what if you needed an organ? Would you not want a transplant? Because I've met plenty of people (who aren't Orthodox) who are totally against donating their own organs upon their death, but admit that they'd definitely want an organ transplant should they need one at some point. And that's not right! Do people of the Orthodox faith accept blood transfusions and donate blood as well? I'm just trying to gain some insight here, so please no flames.
Just a quick question, as I don't have much experience with the Orthodox religion at all. I understand that some cultures are seriously against organ donation, which they see as mutilation of the body. But what if you needed an organ? Would you not want a transplant?
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Not all Orthodox are Greeks so I cant speak for the other cultures.
The only restriction is against the harvesting of the heart. However, there are concerns with organs that are not "double". For us much is a personal issue.
Unlike Roman Catholics, Canon Law for us only applies to salvation. So, of course, this issue doesnt fall under such. Much is personal conviction.
Obvouisly, nurses/staff cannot know what people's personal convictions are but when dealing with a differant culture to step lightly is only showing good manners.
For most, personal beliefs are wound up in mutilation of the body with autopsy issues. I would never have an autopsy or authorize for one to be done. Or cremation.
Because I've met plenty of people (who aren't Orthodox) who are totally against donating their own organs upon their death, but admit that they'd definitely want an organ transplant should they need one at some point. And that's not right!
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It might not be right. However, there is a differance between mutilation of a dead body and operating on a live human being.
Do people of the Orthodox faith accept blood transfusions and donate blood as well? I'm just trying to gain some insight here, so please no flames.
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There is no problem with blood transfusions. The only people I know who are against that are Jahovah Witnesses and they would not donate either.
I think most of the problem was that this was seen as money grabbing to my family at the sacrifice of human beings.
And not accepting the answer as NO and just accepting that and not walking away offended them greatly.
My personal belief is that I am very warry of it because the boundary between life and death is so very fuzzy. But also because the official line is that wealthy and famous people are not at an advantage...but I dont believe it. I do think it gives them an advantage over others.
Specializes in Neurology, Neurosurgerical & Trauma ICU.
Part of the problem here was having no concept of cultural differences. You would never ever approach an Orthodox family about this. The organ people pretty much were asking my family was it ok to mutilate my children (and me). And make money at the same time!
Are they given no training in cultural differances? Religious beliefs??
Oh yeah, because that's what it's all about....mutilating bodies and making money! :angryfire
Nevermind the 50 year-old man who was born with a congenital defect of his mesenteric arteries and now needs a cluster transplant....nevermind the 25 year-old woman who just gave birth to twins, now has a rare and lifethreatening form of cardiomyopathy and needs a heart transplant! (Yes, these are two cases that I have been closely associated with.)
It's hypocritical beliefs like that that make me SO angry! You will take, but do not give? (No, I'm not just talking about your personal case anymore.)
And how are we supposed to know your personal beliefs??? I may know that the Jewish faith is listed....but does that mean that you are a practicing Jew? And....what's the harm in asking??? Just because you are Orthodox...does that mean that we should automatically not even ask??? How ridiculous is that? How ridiculous of you to even suggest it!
Now....I will state again, perhaps the person that did it was overzealous, but I cannot give an opinion on that, because I was not there. All the CORE people I have dealt with (and that's a lot) are all very professional, kind and are wonderful in how they deal with the families.
All statements above are my humble opinions! So....don't bother with flaming!
Oh yeah, because that's what it's all about....mutilating bodies and making money! :angryfire
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I never said that it was all about money. But in MY humble opinion you cannot seperate medicine from business. It is a business. Right or wrong. Good or bad. Money is a part of medicine.
Of course business is a part of medicine. I think that's a given, but I still can't imagine not giving something of myself or someone I love to help save another human. That's just me of course and to each his own. (though I might hesitate to allow my organs to be donated to someone who wouldn't donate his own now that I think about it)
Sounds to me like these cases, if true, then the MDs need a lesson in not only properly declaring brain death, but also on what brain death is. In the case of the person breathing spontaneously.....well that is one of the criteria, the person CAN NOT be breathing spontaneously....if they are, they are NOT brain dead, yet.
As for the third case you cited...you did not say that she was ever declared brain dead....more sounds like they were withdrawing care. Also, one CANNOT be declared brain dead, when there are certain things in the bloodwork that could even just possibly explain them not responding normally.
I'm sorry if I misrepresented the authors' position in this article, or my own - the point was not that these were case where brain-dead patients became "un-brain-dead" (for want of a less clumsy phrase). Rather it is that determinations of brain death are sometimes made when patients don't fit the criteria. In the cited cases, these reasons may have included inevitable somatic death (or perceived inevitable somatic death), a viable recipient in the wings, or perhaps even financial aspects (this last is not explicit in the text).
I agree with you, NeuroICURN, that these cases describe patients who are not brain-dead - that was the point of the article. The reason I posted it is that, if relatives are told that a patient is brain-dead and s/he isn't, or isn't yet, or is brain damaged, then this muddies the waters for everyone. The term 'brain dead' is thrown around a lot, and as we can see from the discussion thus far, informed and interested health professionals are not always any clearer about it than lay people. For example, on my unit (which incorporates neurosciences), staff refer to patients as being 'brain dead' when they mean unconscious, unresponsive or hypoxically brain damaged, although they know that part of the definition of brain death is that the patient is ventilator-dependant.
About the third case: although van Norman does not specify that the patient had been declared brain dead, she does say: "On the day of anticipated organ collection..." and "Vital organ collection was canceled..." These phrases seem to indicate that organ collection was planned, timed, rather than related to withdrawal of treatment. It is possible, of course, that treatment was planned to be withdrawn that day, with post-mortem organ retrieval, which would seem to be premature. However, as the article is specifically about declaring brain death, I think it's safe to presume that the third patient had been declared brain dead like the other two.
Oh yeah, because that's what it's all about....mutilating bodies and making money! :angryfire
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I never said that it was all about money. But in MY humble opinion you cannot seperate medicine from business. It is a business. Right or wrong. Good or bad. Money is a part of medicine.
I tend to agree with this to a point, from my personal experience with my son. We took him to Chicago University for his transplant and that is where we stayed for 4 months until he died. I had some altercations with the doctor there but that happens when you know to much about what is going on and dont agree with his care. After he died I had kept in touch with the transplant coordinator and one day I got his bill after my insurance paid. The whole bill was greater then $900,000.00. I called the coordinator having a balance of $70,000.00 for some medications that was $10,000.00 a dose. She returned my call after talking to the transplant MD who was in charge of the whole operation and theri response was...and I quote" Dr _______ says we have made more then enough moeny off of you and Brian so we are going to just erase that balance and we will call it even" My son had not been deard 2 weeks ...and they had made enough money and were going to call it even????? MY son gave his life I hardly call that an even exchange.
So yes....sometmes I too think things like this are a "money racket" but then nothing in life is free and every one is out to make a million$.
Get me off this soap box I feel flames. NOt at you guys but at what happened in Chicago. MOre then enough money my heiney!!!!!
My 7 year old passed away. I have now been single for over 10 years and always new things down the road. Although these things are not easy I can honestly say even at 37 years old that I have learned a great deal:
I never understood the handicapped, until I had a handicapped child.
I never understood what it was like to be heavy until I weighed 280 lbs.
I never understood grief until my children died.
I never understood pain until I was burned 60% in a house fire.
I never understood perseverance until I lost 150 lbs.
I never understood desperation until I was infected with Lyme Disease.
I never understood gratitude until I no longer had to take medication for Lyme.
I never understood trust until I lost my job.
And I never understood my future until I decided to go back to school to be a nurse to work critical care burns.
***
You never know what life will give you.
What a courageous and inspiring story. Life's lessons come from experiencing life. Sometimes you can't experience joy until you learn to cry from the depths of your soul. :)
:angryfire 
NeuroICURN
377 Posts
OK, there are several things that I want to say in response to this post....the first being that I'm sorry to hear about your losses and that I'm glad to hear that you are doing well now.
However, brain damage and brain death are not the same thing. In your case, I am sure they were looking to make you a donor after cardiac death (or non-heartbeating donor as they used to call it).
Now, in my facility, we are required to call CORE (our organ procurement agency) when a patient has a GCS of 6 or less. Does this mean they are necessarily going to do anything? No, it just means that for now, we have to let CORE know about this person. Each case is different, sometimes they'll come in, sometimes they don't.
As for the ventilator being "turned down"....well, we do it all the time. And as long as a pt is tolerating it, then there is NO need to put them back on more support!!! It just makes it harder to get them off later!!!
And no offense to your family intended here.......but a family in crisis is just that, a family in crisis! OFTEN (more often than not) a family hears only certain parts of what is being said to them in conversations. And despite the education they may have, it's just natural to only hear and hold on to tiny tidbits of information and totally not hear/understand the other bits. That's why things get related differently after-the-fact than they actually were. Heck, I've stood at my bedside, told family members one thing....then when someone else joins the bedside and they attempt to repeat what I said to that person, it gets ALL messed up!!! Anyone that has ever dealt with these families in the ICU can back me up on this.
Perhaps the organ procurement agency was a little overzealous in your case, I can't say because I wasn't there. But usually they don't talk to the family unless the docs, RNs, etc. feel there isn't any hope of meaningful recovery. Maybe there was a small miracle in your case.
Anyway...that's my two cents.