Neuro ICU - Do you talk to brain-dead patients?

[talaxandra]

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.

[StephanieMc]

Thank you Kim. It hasnt been an easy road to go down, even now, but it did give me whole new prospective on alot of things pertaining to how I approach and treat my patients and their family members. Not that I ever treated them badly, it just gave me a new avenue to take and trust me...it is a much better one. It also helps me talk to patient family members about DNR's and taking their loved ones off the vent. I tell them I can relate and they open up a lot more after hearing this.

[leslie :-D]

stephanie,

may i ask how your son is doing? and i certainly don't mean to sound glib but if alive, does he still respond to your touch, your voice?

leslie

[Kyriaka]

14 years ago, after a liver transplant that went terribly wrong, my 15 y/o son was diagnosed brain dead.

____________________

Thanks for sharing Stephanie. I had been reluctant to delv into this area but I have a bit more to add to my story seeing as you are so brave about it.

I was in a coma because I caught on fire trying to rescue my children from our burning home. I was burned over 60%.

My 4 year old died at the scene, but my 7 year old was put on life support.

I was not involved in the decision to have him removed from life support but heard about all of this next part 2nd hand.

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.

And sympathy to you, Stephanie. May his memory be eternal.

[NeuroICURN]

There's a disturbing article I read by an anaesthetist (Gail van Norman, for those wanting to follow this up :)), who described cases where patients did not meet brain death criteria (in all cases had not been appropriately assessed, and in one case was spontaneously breathing) but were in theatre for organ collection - in those cases, an anaesthetist intervened, but I imagine this is not always the case.

Talaxandra.....I believe what you are referring to in this case is organ donation after cardiac death (formerly called non-heartbeating donors). What this is is when a patient is not expected to progress to brain death (as in a case of mine where a man had been shot in the head and while his brain had partially herniated, it could not completely herniate and cause brain death...because of the hole in the head that allowed brain tissue to come out). Anyway, what they do here is take the patient to OR, remove support and if the patient goes asystole within 30 minutes, then organs can be harvested. If not, well then after the person dies, they can still harvest tissues, corneas, etc. usually.

I work a LOT with organ donation in my unit, so if any of you have questions concerning organ donation and how it REALLY works (not some of these misconceptions that have been posted here), PM me and I'll answer questions as best as I can.

Anyway, some of you people are missing the point that brain death is really NO different than being asystole. There is NO coming back from being brain dead....as a matter of fact, once you are declared brain dead, your death certificate is signed because you are DEAD!!! Yes, there is specific criteria that must be met, different tests, so that there is no mistake.

[NeuroICURN]

Brain dead is DEAD. Period.

I am confused as to why a brain dead patient would even be in an ICU, unless it was just long enough to allow their family to come to grips with their status, make a decision about organ donation, and let go. Yes, those families might find it comforting to "talk to" that loved one, and say their final good-byes, but--why would health care professionals do so? Pray for their souls; yes, please do, but dead people do not hear!

Often brain dead people are in the ICU because that's where they progressed to brain death (it sometimes takes a while to happen)...or they may be there to be stabilized and prepared for the OR for organ donation. Brain dead patients can be the MOST unstable patients you've ever had to deal with (Think about it, their most basic brain functions are no longer working...I've had times where the patient is SOOOO unstable that 2 nurses were assigned to a single patient). Anyway, certain things have to be in order before they go to the OR.....For instance, we use the rule of 100s (SBP above 100, UO above 100, etc). They have to be a certain body temperature (not only to be declared brain dead, but also to go to the OR) and certain lab values have to be within certain limits. It's not unusual for it to take care of these people for 12, 16 hours or more to stabilize them before taking them to OR.

I realize it's hard to understand this if you've never been a Neuro/Trauma ICU nurse that's involved in the process....but it's really a complicated process. There again, if anyone has any questions, feel free to PM me.

NeuroICURN

[StephanieMc]

stephanie,

may i ask how your son is doing? and i certainly don't mean to sound glib but if alive, does he still respond to your touch, your voice?

leslie

Leslie, thak you for asking, but Brian died April 10th, 1990 2 months after he received his liver transplant. It seems there was a fungus on the hepatic artery of the donor liver and it continued growing after transplant and ate a whole in the hepatic artery, blowing like an aneurysm. But the two days after he was extubated he did respond with his HR to my voice and touch.

It is amazing when there are no brain waves that there is something in the brain that is still working... so I have continued with this knowledge on my patients.

[StephanieMc]

14 years ago, after a liver transplant that went terribly wrong, my 15 y/o son was diagnosed brain dead.

____________________

Thanks for sharing Stephanie. I had been reluctant to delv into this area but I have a bit more to add to my story seeing as you are so brave about it.

I was in a coma because I caught on fire trying to rescue my children from our burning home. I was burned over 60%.

My 4 year old died at the scene, but my 7 year old was put on life support.

I was not involved in the decision to have him removed from life support but heard about all of this next part 2nd hand.

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.

And sympathy to you, Stephanie. May his memory be eternal.

Thank you Kyriaka. I am sorry for your loss of your 4year year old. You didnt the the outcome of your 7year old that was put on life support. If he passed I am so sorry and know your pain. If not, how is he? And I am so glad to hear that you have very minimal deficits from your burns. God works in mysterious ways. Medical personnel ie: Doctors and nurses both can only use the information and knowledge given to them, but the final outcome is in Gods hands.

[StephanieMc]

Brain dead is DEAD. Period.

I am confused as to why a brain dead patient would even be in an ICU, unless it was just long enough to allow their family to come to grips with their status, make a decision about organ donation, and let go. Yes, those families might find it comforting to "talk to" that loved one, and say their final good-byes, but--why would health care professionals do so? Pray for their souls; yes, please do, but dead people do not hear!

There is a huge difference between talking to a patient in coma or chronic vegetative state than talking to one that is brain-dead. Those people have a chance to "come back," and no one knows what or even if they hear-- but we hope they do, and hope that talking to them will stimulate them and help them "come back" if there is the slimmest chance to do so.

To be brain dead, an EEG has confirmed that there is no longer any electrical activity in the brain. As others have stated, the EEG can be waived--there is other diagnostic criteria, especially in the case of anoxic brain injuries. I know that sometimes just disconnecting from a ventilator for a specified time, to see if any spontaneous breathing will occur in that time, is used. In those cases, an EEG would not tell anyone anything that they do not already know.

However, often organ transplant programs require the EEG to definitively confirm brain death, probably for legal reasons. Also, that EEG report makes it a bit easier for the families to accept that, yes, this loved one REALLY IS DEAD--there will be no coming back. It's at that point that they allow themselves to let go.

The brain controls the autonomic nervous system. If a brain dead person is disconnected from a ventilator, the heart will also stop. All that was keeping that person "alive", or more accurately, his organs perfused, was that ventilator.

Stevierae...you are oh so wrong. Patients that have been declared braindead are not dead and they can hear. Read my article about my son I wrote. You will never convince me he didnt hear me or the nurses that made his HR increase with their loud voices or noises. I have experienced more of this since I have started talking to them and having their families do the same. Believe what you will but I have first hand experience and you are wrong.

[Kyriaka]

Thank you Kyriaka. I am sorry for your loss of your 4year year old. You didnt the the outcome of your 7year old that was put on life support. If he passed I am so sorry and know your pain. If not, how is he? And I am so glad to hear that you have very minimal deficits from your burns. God works in mysterious ways. Medical personnel ie: Doctors and nurses both can only use the information and knowledge given to them, but the final outcome is in Gods hands.

_____________________

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.

[StephanieMc]

_____________________

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.

I APPLAUD you Kyriaka.....I give you a standing ovation for being able to survive all you have endured..

[talaxandra]

Talaxandra.....I believe what you are referring to in this case is organ donation after cardiac death (formerly called non-heartbeating donors).

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.

In fact, I've found that in surveys on health care professionals who work with brain-dead patients (ICU nurses, consultants, surgeons and anaesthetists) there is often a lot of confusion. Although my research interest in the why of nurses talking to the brain-dead, details like this help flesh out why the situation is often not seen as a black and white issue, not just for lay-people but also for so many of us.

In response to those respondents who've stated that brain-dead patients are dead, I agree. Well, I did, but the more research I've done the less ceratin I am. However, my point was going to be that I talk to dead patients as I prepare them for the morgue, so nurses who talk to brain-dead patients aren't necessarily doing so because they disagree with the concept that somatic and brain death are equally final.

I'm really enjoying reading everyone's opinions, and I want to thank you all for your contributions, particularly Kyriaka and StephanieMc for sharing their personal experiences.

[Energizer Bunny]

14 years ago, after a liver transplant that went terribly wrong, my 15 y/o son was diagnosed brain dead.

____________________

Thanks for sharing Stephanie. I had been reluctant to delv into this area but I have a bit more to add to my story seeing as you are so brave about it.

I was in a coma because I caught on fire trying to rescue my children from our burning home. I was burned over 60%.

My 4 year old died at the scene, but my 7 year old was put on life support.

I was not involved in the decision to have him removed from life support but heard about all of this next part 2nd hand.

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.

And sympathy to you, Stephanie. May his memory be eternal.

I think I am an emotional mess this weekend because things are touching me even more so than usual. I sooo feel for you. You are an incredibly brave woman and it's so amazing to me that you are such an insightful and kind person after all you have been through. I applaud you!