Physicians, health care workers, members of the clergy, and laypeople throughout the world have accepted fully that a person is dead when his or her brain is dead. In the United States, the principle that death can be diagnosed by neurologic criteria (designated as brain death) is the basis of the Uniform Determination of Death Act,1 although the law does not define any of the specifics of the clinical diagnosis. There is a clear difference between severe brain damage and brain death. The physician must understand this difference, because brain death means that life support is useless, and brain death . . .

http://www.fundacionsupremo.org/wp-content/uploads/2013/08/The-DiagnosisofBrainDeath_Ricardo_Brau.pdf

The diagnosis of brain death.

With the increasing efficiency of life-support systems and better intensive care, more patients survive severe injuries of the brain and spinal cord. Many of these patients experience locked-in syndrome: The active mind is locked in a paralyzed body. Consequently, communication is extremely restricted or impossible. A muscle-independent communication channel overcomes this problem and is realized through a brain-computer interface, a direct connection between brain and computer. The number of technically elaborated brain-computer interfaces is in contrast with the number of systems used in the daily life of locked-in patients. It is hypothesized that a profound knowledge and consideration of psychological principles are necessary to make brain-computer interfaces feasible for locked-in patients.

Brain-computer communication: unlocking the locked in.

The locked-in syndrome (pseudocoma) describes patients who are awake and conscious but selectively deefferented, i.e., have no means of producing speech, limb or facial movements. Acute ventral pontine lesions are its most common cause. People with such brainstem lesions often remain comatose for some days or weeks, needing artificial respiration and then gradually wake up, but remaining paralyzed and voiceless, superficially resembling patients in a vegetative state or akinetic mutism. In acute locked-in syndrome (LIS), eye-coded communication and evaluation of cognitive and emotional functioning is very limited because vigilance is fluctuating and eye movements may be inconsistent, very small, and easily exhausted. It has been shown that more than half of the time it is the family and not the physician who first realized that the patient was aware. Distressingly, recent studies reported that the diagnosis of LIS on average takes over 2.5 months. In some cases it took 4-6 years before aware and sensitive patients, locked in an immobile body, were recognized as being conscious. Once a LIS patient becomes medically stable, and given appropriate medical care, life expectancy increases to several decades. Even if the chances of good motor recovery are very limited, existing eye-controlled, computer-based communication technology currently allow the patient to control his environment, use a word processor coupled to a speech synthesizer, and access the worldwide net. Healthy individuals and medical professionals sometimes assume that the quality of life of an LIS patient is so poor that it is not worth living. On the contrary, chronic LIS patients typically self-report meaningful quality of life and their demand for euthanasia is surprisingly infrequent. Biased clinicians might provide less aggressive medical treatment and influence the family in inappropriate ways. It is important to stress that only the medically stabilized, informed LIS patient is competent to consent to or refuse life-sustaining treatment. Patients suffering from LIS should not be denied the right to die - and to die with dignity - but also, and more importantly, they should not be denied the right to live - and to live with dignity and the best possible revalidation, and pain and symptom management. In our opinion, there is an urgent need for a renewed ethical and medicolegal framework for our care of locked-in patients.

/pdf/the-locked-in-syndrome-what-is-it-like-to-be-conscious-but-4dukdhcdp3.pdf

The locked-in syndrome : what is it like to be conscious but paralyzed and voiceless?

The locked-in syndrome is caused by an insult to the ventral pons, most commonly an infarct, haemorrhage, or trauma. The characteristics of the syndrome are quadriplegia and anarthria with preservation of consciousness. Patients retain vertical eye movement, facilitating non-verbal communication. Ten year survival rates as high as 80% have been reported. Even limited physical recovery can improve quality of life and enable patients to return to live with their families. Early referral to a specialist rehabilitation service for specialist care and technology is therefore important.

We gathered information for this article through searches in Medline and Taylor and Francis Health Sciences, identifying relevant case series reviews on the locked-in syndrome and other brain stem strokes. Our own experience is also incorporated.

Locked-in syndrome was first defined in 1966 as quadriplegia, lower cranial nerve paralysis, and mutism with preservation of consciousness, vertical gaze, and upper eyelid movement.1 It was redefined in 1986 as quadriplegia and anarthria with preservation of consciousness.2 This redefinition served to clarify that mutism could imply unwillingness to speak.3

Although patients are conscious, attention, executive function, intellectual ability, perception, and visual and verbal memory can be affected.4 Leon-Carrion and colleagues reviewed 44 patients with the locked-in syndrome, of whom eight reported memory problems and six attentional deficits.5 Memory difficulties were more likely when the aetiology was traumatic.5 However, in a report of two patients with chronic locked-in syndrome, neuropsychological assessment showed preserved cognitive abilities.6

A review by Zeman of consciousness indicated that cerebral metabolism, as monitored by positron emission tomography, is only mildly reduced in locked-in syndrome but severely reduced in the vegetative state.7 The electroencephalogram typically shows slow wave activity in the vegetative state but normal activity in locked-in syndrome.

Anarthria is due to bilateral facio-glosso-pharyngo-laryngeal paralysis,8 which …

https://www.bmj.com/content/bmj/330/7488/406.full.pdf

Locked-in syndrome

https://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(06)68508-5.pdf

Chronic disorders of consciousness

Etiology, clinical manifestations and outcome were reviewed in 139 cases of "locked-in syndrome." Six cases were reported from our center and the remaining 133 cases were taken from a review of the literature. The results of this review emphasized the necessity for a comprehensive program of pulmonary management in this population. Furthermore, an effective system of communication for the patient is considered essential in the management of the "locked-in" state. Reported mortality in the cases reviewed was 60%. Overall, the prognosis for survival and recovery was found to be better in the group of patients whose syndrome was nonvascular in origin than those with a vascular etiology. Functional recovery was generally good in those patients with a vascular etiology who survived beyond 4 months while recovery occurred earlier and more completely in the nonvascular group. Thus, a program of intensive rehabilitation should be considered early in both groups in order to assist each patient in attaining the hig...

Locked-in syndrome: a review of 139 cases.

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Locked-in syndrome: a review of 139 cases.