The Grim Reaper

In this motionless body, behind that glazing eye, and with all the appearance of death, sensitiveness and intelligence persist in their entirety. The corpse before us hears and distinguishes all that is done around it. It suffers when pinched or irritated, in a word, it has still consciousness and volition, but it has lost the instruments which serve to manifest them.
Claude Bernard, 1864 quoted in ANESTHETIZING THE PUBLIC CONSCIENCE: LETHAL INJECTION AND ANIMAL EUTHANASIA in BERDOE, supra note 29, at 63 (quoting Bernard) by Edward Berdoe

“Locked-In Syndrome” is a neurologic condition resulting from a catastrophic brain stem injury that leaves the cerebral cortex functional. A patient with Locked-in Syndrome is fully conscious and able to feel pain, but almost completely unable to move. This is different from a persistent vegetative state or a minimally conscious state. At bedside a locked-in patient is indistinguishable from a corpse on life support. In recognized cases the patient can communicate with small movements, but there is no way to estimate how many locked-in patients are completely paralyzed, or whose families are led to believe that a twitch of the eye is simply a reflex.

This phenomenon is very similar to a rare anesthetic event during which the patient is fully awake but temporarily paralyzed, whether due to a paralytic agent injected as part of the anesthesia or due to unexpected drug interactions with supplements, recreational drugs or prescription meds.

“Patient awareness under general anesthesia (or anesthetic awareness) is a rare condition that occurs when surgical patients can recall their surroundings or an event — sometimes even pressure or pain — related to their surgery while they are under general anesthesia. Severe cases of anesthetic awareness happen infrequently, but research is ongoing to determine the causes of awareness and prevent it from happening.”
American Association of Nurse Anesthetists, Anesthetic Awareness Fact Sheet, http://www.aana.com/forpatients/Pages/Anesthetic-Awareness-Fact-Sheet.aspx

It’s easy to say “I wouldn’t want to live like that” but some locked-in patients DO want to live. In some cases, over several years the neural pathways slowly regenerate around the damaged brain stem and the patient regains some movement. Unfortunately, insurance may not cover the expenses of long hospital stays and physical therapy.

For instance, the scientist Steven Hawking suffers from Locked-in Syndrome due to ALS, a motor neurone disease. With appropriate support staff and assistive devices to talk for him, Dr. Hawking has been able to continue his brilliant career as the world’s foremost theoretical physicist.

Many families decide to be done with them and move on. Lucky for the organ procurement organizations!

Estimates are that 0.6% to 1% of patients diagnosed as brain-dead actually have locked-in syndrome. PET scans and fMRIs enable the doctors to immediately tell that activity similar to a waking state appears. However, doctors don’t routinely perform PET scans or fMRIs on comatose patients because recommendations aren’t rules. Insurance companies don’t cover PET scans or fMRIs on dead patients. This means that of the 3,374 donors between January 2012 and March 2012, of which about 99% had been diagnosed as brain-dead, somewhere between 200 and 330 donors were alive and awake for the organ harvest.

Organ procurement organizations in the United States don’t require anesthesia. It is likely that 800 to 2600 locked-in donors a year can feel the boltcutters used to crack the chest , and are aware as each organ is disconnected and removed from their still-living body.

Make sure you demand a PET scan or fMRI of the forebrain before they declare your family member dead. Your insurance company won’t pay for it if the patient has already been declared. Just in case, make sure they anesthetize the still-breathing corpse before they cut into it.

Your Living Will ends the moment they declare you dead. New US laws at both the state and federal levels are making it easier for them to harvest your organs whether you are living or dead, with or without your permission. Make sure everyone you know, every doctor and every medical facility you use has a record of your wishes. Don’t be seriously injured outside your local area. Avoid Washington, DC at all costs!

If the docs are telling you I’m brain-dead and convince you to donate my organs, please obliterate my head before you let them begin the harvest.

For further reading

National Institute of Neurological Disorders and Stroke, NINDS Locked-In Syndrome Information Page, http://www.ninds.nih.gov/disorders/lockedinsyndrome/lockedinsyndrome.htm

Detecting Awareness in the Vegetative State. Adrian M. Owen et al. in Science, Vol. 313, page 1402; September 8, 2006.
Post-Decision Wagering Objectively Measures Awareness. Navindra Persuad, Peter McLeod and Alan Cowey in Nature Neuroscience, Vol. 10, No. 2, pages 257-261; February 2007.
Measuring Consciousness: Relating Behavioural ans Neurophysiological Approaches. Anil K. Seth et al. in Trends in Cognitive Sciences, Vol. 12, No. 8, pages 314-321; August 2008.
http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2044.2000.055002105.x/full