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.
I have always spoken to all of my patients, from the little 500 grammers to the ones that have been declared brian dead. And even when working in the OR during the harvest, I am always the one that says the final goodbye.
Something that I have always done and will always continue to do.
The body may be "dead" but the spirit is still alive, and may still be there,
or close by. All I know is that I want everyone on my side!
Sure there are times when you don't talk to the patient in front of the family, but when they are out of the room, I am talking......................
I always talk to my patients whether they are a&ox3 or comatosed, dying , dementia or whatever the situation is .. I always explain what I am doing. I even sing to my comatosed patients .. One day when we get to heaven or where ever one proceeds , we will be greeted with a smiling face from our patients.
But then I have been known to talk to patients while doing post mortem care.
When I was a candy stripper (a million years ago) I tried to FEED a dead guy -- well sort of. I went into the room all perky and sweet, set up the patient's try -- mindless chatter the whole time, got things ready to roll and finallylooked at the guy -- gray. cool, glazed eyes, mouth hanging open! Guess he wasn't hungry. I left the room, leaned up against the wall in the hall for a second -- big, mean nurse barked at me and asked why I wasn't giving MR.X his lunch -- I practically whispered that I thought the guy needed some help. Mean nurse walked into the room and came back immediately, put her arm around my shoulder and said (VERY kindly) "Honey, would you like to go home?!"
Needless to say, now I look at the person when I walk in, and give them a chance to talk if they want to (or can). BUT to address the ORIGINAL question -- yes, I do talk to "brain dead" patients while I am doing their care -- don't tell jokes and chat, but do verbalize who I am, what I am doing, what time of day it is, where we are, sometimes weather..... just 'cause ...you never know .....
Here is a really great article that defines the terms we have been discussing. I have copied it in its entirety. It also introduces a brand new term--Minimally Conscious State.
New Diagnostic Term Helps Clarify Prognosis, Treatment Decisions for TBI Patients
Correctly identifying a patient's level of consciousness following a traumatic brain injury (TBI) is an extremely important part of the evaluation and can be especially challenging in patients with prolonged impairment of consciousness. It is critical in formulating diagnosis and prognosis. It can increase or reduce the hope that family members maintain about their loved one's recovery. It contributes to treatment, rehabilitation and discharge decision-making. It can even be the deciding factor in life and death decisions, such as whether to continue or withdraw treatment.
Because there are so many medical, legal and ethical ramifications behind the correct identification of a patient's level of consciousness, it is important to be aware of progressive levels of consciousness, and how to recognize and define them. Further, it is essential that everyone is using accepted diagnostic terms in the same way to correctly identify a patient's state of consciousness. That is why a recent effort to develop a new diagnostic term--minimally conscious state (MCS)--to describe a well-recognized intermediate condition in the progression from unconsciousness to full consciousness has been so important. Awareness of the MCS and other conditions of impaired consciousness is of great significance in the continuing care arena because of the implications for decisions regarding assessment, level of care and treatment setting for patients with brain injury who may be recovering more slowly.
MCS is defined as, a condition of severely altered consciousness in which minimal but definite behavioral evidence of self or environmental awareness is demonstrated.
As a backdrop, full consciousness may be defined as a person's awareness of his or her internal state and external world, integrated with a comprehensive sense of self, linked to a perspective of past and future. In between full consciousness and unconsciousness is a continuum of varying states of awareness and cognitive capacity. It should be noted that applying labels to the various levels of consciousness is difficult, owing to the fact that the boundaries between conditions may be somewhat arbitrary. That said, the medical community has for some time agreed on several terms to describe different levels of consciousness and cognitive capacity:
Brain Death
An irreversible condition of complete absence of brain function, including brain-stem function. A patient cannot survive in this condition without artificial supports, such as a respirator, and is considered clinically dead.
Coma
A state of unconsciousness in which a person shows no signs of eye opening or superficial arousal. When occurring as a result of acquired brain damage, coma is an acute or subacute condition that usually evolves to the vegetative state or higher level of consciousness within two to four weeks in patients who survive.
Vegetative State
In the vegetative state--a term that is sometimes deemed insensitive but an accepted medical term nonetheless--there are no signs of conscious awareness but the person does show signs of wakefulness, looking at times as if they are awake and other times asleep. They have lower-level brain function in the brainstem and other regions which allows for the potential of gross arousal and eye opening, but they do not have any significant functioning in the cerebral cortical areas to facilitate any awareness or thinking. The term permanent vegetative state has been used when this condition persists for an extended period of time (12 months for patients with TBI and 3 months for patients with nontraumatic forms of brain injury). Though deemed permanent, there have been isolated reports of patients recovering consciousness after these time periods so there is not absolute certainty in the permanence of the condition. The term persistent vegetative state is also frequently applied for those with this condition longer than a month. This term is so often misapplied and confused with permanence that it should probably be avoided.
Confusional State
This is a condition of greater cognitive awareness, more consistent responsiveness, but significant global cognitive dysfunction with severe impairments in attention and profound amnesia. For patients with TBI, this condition is often termed, post-traumatic amnesia (PTA), a period in recovery when a patient is unable to encode in memory any new information or experiences. In many cases the condition may be termed acute confusional state and the implication is that this is a temporary condition.
Dementia
When patients remain in a chronic state of global cognitive dysfunction, profoundly affecting multiple domains of intellectual ability, with severe effects on a patient's functioning and self care, the term dementia may be applied. The term is usually used for degenerative conditions such as Alzheimer's disease or vascular dementia, but it is also correctly used for patients with other brain disorders that cause chronic profound loss of cognitive function. Levels of conscious awareness may vary in patients with dementia but capacity for full self-awareness is reduced because of cognitive deficits.
As these terms have become better understood and accepted, and especially as the criteria and prognosis for the vegetative state were clarified, it became apparent that there was a gap in the nomenclature. Many patients display a clinical condition not fitting the criteria for the vegetative state or complete unconsciousness, yet these patients cannot be considered fully conscious, or at a level that terms such as the confusional state can be applied. The Aspen Neurobehavior Workgroup on impaired consciousness, headed up by Joseph T. Giacino, Ph.D., and comprised of representatives from neurology, neurosurgery (including Dr. Bryan Jennett of Glasgow, who coined the term vegetative state), physiatry, neuropsychology, nursing, allied health and bioethics, led the effort to introduce a new diagnostic term. The group concluded that there was a need for more precision in the diagnosis of different levels of impaired consciousness, and a need to distinguish patients who display subtle or inconsistent signs of conscious behavior. They recognized that the implications were far-reaching, particularly as relates to prognosis and treatment decisions. In fact, decisions regarding withdrawing fluid and nutrition, continuing medical or rehabilitative treatment, or managing pain and suffering might hinge on the differentiation of unconsciousness and minimal consciousness.
As a result of these efforts, the term Minimally Conscious State has been introduced. MCS is defined as,"a condition of severely altered consciousness in which minimal but definite behavioral evidence of self or environmental awareness is demonstrated." The diagnostic criteria for MCS include limited but clearly discernible evidence of self or environmental awareness demonstrated on a reproducible or sustained basis by one or more of the following behaviors.
Simple command-following
Gestural or verbal "yes/no" responses (regardless of accuracy)
Intelligible verbalization
Purposeful behavior, including movements or affective behaviors that occur in contingent relation to relevant environmental stimuli and are not due to reflexive activity.
The upper boundary of MCS, separating from higher levels of consciousness, such as the confusional state, is harder to demarcate precisely and a little more arbitrary in establishing. The Aspen Workgroup agreed upon criteria for the upper limit of MCS that include the ability to accurately convey "yes" and "no" responses to simple questions aor appropriately use objects (for instance, a comb or food utensils).
It should be noted that the incidence of MCS suggests that this is a syndrome which has been crying for attention. Dr. Stephen Ashwal and his colleagues at Loma Linda University have estimated that there are between 112,000 and 280,000 adult and pediatric patients in MCS; if accurate, these findings indicate that the prevalence of MCS in this country is eight times higher than VS.
Now that we have defined the term MCS and highlighted its position on the continuum of consciousness, the question of its importance must be addressed in greater detail. Our goal is to ensure that the term becomes adopted on a variety of fronts--legal, medical, ethical, research--because of the ramifications in these areas for TBI patients and their families.
The legal arena carries perhaps the most controversial ramifications. Over the last 20 years in particular, the courts have been asked to hear cases involving people with profound brain damage to decide whether families should be allowed to stop active treatment, including fluid and nutrition. In the 1960's and 1970s, the primary legal yardstick for stopping active treatment of a severely brain-injured patient was brain death. Upon this diagnosis, allowing a patient to die was deemed acceptable. In fact, brain-death became an acceptable criterion for defining death.
The legal challenges were extended in the 1980s to consider people who were unconscious and seemed firmly ensconced in that state yet able to live without cardiopulmonary support and not brain dead. The question was: Could they ever regain consciousness? Moreover, once they were in this state and recovery seemed hopeless, could a family withdraw treatment ethically and allow them to die? It has now become largely accepted in this country that if a person is in a permanent vegetative state from TBI or other cause, withdrawing treatment is allowable.
Given that this profound legal and ethical decision hinges on a diagnosis of unconsciousness without expectation of recovery, it is vital to properly identify the level of consciousness and establish an accurate prognosis.
Treatment options represent another area in which consciousness plays a major role. Many patients, following a traumatic brain injury (TBI), are cared for at the acute medical level as well as the acute rehabilitation hospital level. The majority of people in prolonged states of severely impaired consciousness are transferred to nursing homes because they are unable to participate in an active rehabilitation program. While some do come to acute rehabilitation, the greatest number go from acute care hospital to skilled nursing facilities. For these people, there are significant continuing care decisions that must be addressed in terms of diagnosis and prognosis: do these people need a more specialized medical rehabilitation effort or additional diagnostic workup to establish their functional level? For patients who are in this state and have been in nursing homes for an extended period of time, it is critical to ensure that they were properly diagnosed and that subsequent improvement in consciousness has not been missed. The distinction between someone with no signs of consciousness and someone who has minimal consciousness may go unnoticed unless caretakers are watching carefully over extended periods of time for subtle or infrequent signs of conscious behavior. Again, prospects for recovery and treatment choices differ based on this distinction.
One example affecting treatment decisions within the ethical and medical arena is the issue of pain perception. It is generally accepted within medical circles that patients who are unconscious do not consciously feel or suffer from pain. They exhibit reflexive actions to certain stimuli that may cause automatic motor responses. These may give the appearance of pain perception but the messages do not reach the pain perception and cognitive awareness part of the cerebral cortex to allow pain perception or suffering. Recent functional brain imaging studies support this conclusion for patients in the vegetative state. Yet if a person is minimally conscious, there is a definite potential that they may experience pain at some level; consequently, treatment of pain might become a priority once it is established that a patient has crossed the threshold between the vegetative state and the minimally conscious state.
On the assessment side, it is important for clinicians to watch for signs that a person with profound brain damage who has not demonstrated any purposeful behavior, may be starting to follow simple commands, or to signal communication in some manner - perhaps as rudimentary as eye blinking. This may take a more concentrated and organized diagnostic effort to present stimuli and look for responses that appear to be consciously purposeful and contingent on the interaction. It is often difficult to determine if inconsistent or very limited motor responses are automatic, reflexive or volitional and conscious at some level. Early signs of more purposeful behavior include visual fixation and tracking of an object, or movement of a limb in a more controlled and goal-directed fashion. Once the early signs of consciousness become apparent, it is incumbent on the treatment team to try to establish some system of communication. Sometimes this involves a simple motor signaling system (e.g., eye gaze or finger signals) in patients who are mute or who have limited movement.
It is important to note that many patients not only exhibit profoundly impaired consciousness, but they may have profoundly impaired movements as well. Severe, diffuse or multifocal brain damage that affects consciousness and cognition may also affect motor control and sensation. Patients may also have a spinal cord injury, damage to peripheral nerves or orthopedic injuries that limit movement. Whether patients' lack of cognitive behavioral responses is the result of impaired consciousness or cognition or impaired motor abilities or some combination of these is a frequent problem that challenges diagnostic assessment. In addition, there is a subgroup of patients that have some level of consciousness and the preserved potential to move, but they remain largely mute and immobile, largely because they have lost the neural mechanism to initiate and drive movement or speech. This condition has been termed akinetic mutism.
There are other conditions that produce what we call a "locked-in syndrome": a state where the patient is fully consciousness but cannot move or talk. Patients with damage to the motor portion of the pons in the brainstem and patients with the most severe forms of the Guillain Barre Syndrome are examples of this condition of loss of voluntary motor control in the setting of preserved consciousness. This condition needs to be distinguished from those that produce a lack of movement because of impaired consciousness or a mix of impairments in consciousness and motor control. It must also be recognized that patients who at first present with unconsciousness may evolve in their recovery to a condition of restored consciousness with profound loss of motor control, for example, relatively locked-in.
The bottom line is relatively clear: It is critical to correctly identify the level of consciousness in patients with TBI for a variety of ethical, legal, and medical reasons. The addition of this new term--Minimally Conscious State--to the nomenclature of medical terms that define impaired consciousness will help in establishing proper diagnosis, prognosis and treatment planning for patients with severe TBI. It also will facilitate research efforts towards a better understanding of brain functioning, prognosis and treatment of conditions of impaired consciousness, which will certainly have major implications for the continuing care arena.
Dr. Douglas A. Katz is a neurologist with training in behavioral neurology, who has been working in neurorehabilitation, with a primary interest in patients with traumatic brain injury. He has been at HealthSouth Braintree Rehabilitation Hospital for more than 16 years where he is medical director of Brain Injury Programs. He is presently with Boston University Neurology Associates and he is Associate Professor of Neurology at Boston University School of Medicine. He has numerous publications and frequently presents at national and international meetings, particularly on topics related to Traumatic Brain Injury.
I have had only one experience with a BD patient, as a student. The nurse & I talked to the body during care (6 hour wait on family to make the decision not to donor). I can't speak for the nurse I was working with I know for me it had nothing to do with not accepting or understanding I find it impossible to work in total silence and talked to him out of habit.
I have alway spoke to the body during post-mortum care for the same reason and observed the CNAs I was working with to do the same (for reasons I don't know).
There is a book that I just bought that I am almost done with that you all should read. I don't know if anyone already mentioned it, as I didn't read ALL these threads. The book is called, "Stiff, The curious lives of human cadavers," by Mary Roach. It is a fascinating book, and it does address this topic in one of the chapters.
As for my opinion, yes, I would talk to a comatose person and also a "brain dead" patient or corpse. In my opinion, as others have stated, there is still so much that we don't know about the brain and death, so what can it hurt? If the dead can hear us then at least they will feel more comforted in their transition. If not, I look at it as I am still sending positive energy out there, and how can that be bad? :) Louisepug
I was "brain dead" in 1974, I was comatose for 3 months before that, my husband and family were told twice that I was brain dead, had it been 1994 I would be dead, but in 1974 they didn't turn the machines off like they do now. I had tried to take my own life, which is a long story I will not share here, my family members were told if I survived that I would be a vegetable the rest of my life and I wouldn't know anyone or anything. I was in the hospital for 9 months, and when the Dr. pronounced me brain dead I heard him, but I could not respond, I heard the nurse say that my pulse was 42 and my BP was 60/40. The Dr. then stated he would call the family to see what they wanted to do. The family opted to continue treatment against the Dr.'s advice, when I came out of the coma, I had PT and OT, and also speech therapy. I have a memory lapse, other than that I am normal. I went back to college after this and received my RN, I also have a degree in theology that I received after this, and I am now working on my masters in nursing. I am the mother of a 23 year old daughter and married to my husband of 31 years. He never gave up on me. I can remember hearing my families voices and hearing them cry at my bedside, I just couldn't respond in any way. I can still repeat conversations held at my bedside during that time. I also do a lot of public speaking now and I am a school nurse. One nurse came to bathe me and she stroked my arm and said "Honey, you are so young, why don't you come back to us?" I remember wanting to respond to her, and from that point on I began to gradually improve. There was something in her voice that reached me. We never know what can reach a person, sometimes it is our words, sometimes it is our tone, and sometimes it is our compassion.
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.
I was "brain dead" in 1974, I was comatose for 3 months before that, my husband and family were told twice that I was brain dead, had it been 1994 I would be dead, but in 1974 they didn't turn the machines off like they do now. I had tried to take my own life, which is a long story I will not share here, my family members were told if I survived that I would be a vegetable the rest of my life and I wouldn't know anyone or anything. I was in the hospital for 9 months, and when the Dr. pronounced me brain dead I heard him, but I could not respond, I heard the nurse say that my pulse was 42 and my BP was 60/40. The Dr. then stated he would call the family to see what they wanted to do. The family opted to continue treatment against the Dr.'s advice, when I came out of the coma, I had PT and OT, and also speech therapy. I have a memory lapse, other than that I am normal. I went back to college after this and received my RN, I also have a degree in theology that I received after this, and I am now working on my masters in nursing. I am the mother of a 23 year old daughter and married to my husband of 31 years. He never gave up on me. I can remember hearing my families voices and hearing them cry at my bedside, I just couldn't respond in any way. I can still repeat conversations held at my bedside during that time. I also do a lot of public speaking now and I am a school nurse. One nurse came to bathe me and she stroked my arm and said "Honey, you are so young, why don't you come back to us?" I remember wanting to respond to her, and from that point on I began to gradually improve. There was something in her voice that reached me. We never know what can reach a person, sometimes it is our words, sometimes it is our tone, and sometimes it is our compassion.
Wow. What an amazing story! I got chills when I read it. Did you have any NDE's since you were brain dead? What was it like? If you don't want to talk about it here, you can PM me. I'd love to here more about it, as I find your story very inspiring. Louisepug
debstorlie - I am glad to hear your story - I am glad that you recovered so well and that you are now able to tell others of your experience. But I have to say that one of the reasons why we do the testing for brain death over a period of time (minimum here is 4 hours AFTER it has been assured that all of the pre-requisites have been met i.e. toxicology screen negative, temperature within normal range, electrolytes and haemodynamics normal) is to ensure that this is an irreversible condition. If you read the link I posted to the ANCIS protocols it delineates the whole process very well.
Even tests such as arteriography and electroencephalography do not establish that every brain cell has died.
Neither does the more conventional blood circulation criterion for death certification guarantee that all brain cellular activity or bodily functions have ceased. Hair and nails continue to grow and several tissues can be retrieved for transplantation long after the circulation of blood has ceased. Death is appropriately perceived as a
process not an event. Certification by any criterion indicates that a certain, irrevocable point in the process has been reached, not that the process has ended. No patient fulfilling the criteria for brain death as described in this document has ever subsequently developed clinically detectable brain function.
suzanne4, RN
26,410 Posts
I have always spoken to all of my patients, from the little 500 grammers to the ones that have been declared brian dead. And even when working in the OR during the harvest, I am always the one that says the final goodbye.
Something that I have always done and will always continue to do.
The body may be "dead" but the spirit is still alive, and may still be there,
or close by. All I know is that I want everyone on my side!
Sure there are times when you don't talk to the patient in front of the family, but when they are out of the room, I am talking......................