An Endless Kind of Sleep or Dead?
Permanent Vegetative State has been discussed on this blog previously. It, of course, was the medical diagnosis for Terri Schiavo and led to the great controversy about prognosis and treatment over a year ago. This condition which can be caused either by severe force injury to the brain or a prolonged period of lack of adequate blood supply and oxygen to the brain has been defined as the following:
Vegetative State: The Multi-Society Task Force on PVS, N Engl J Med 1994;330:1572-1579
No evidence of awareness of self or environment; inability to interact with others
No evidence of sustained, reproducible, purposeful or voluntary behavioural responses to visual, auditory, tactile or noxious stimuli
No evidence of language comprehension or expression
Intermittent wakefulness manifested by the presence of the sleep–wake cycle
Sufficiently preserved hypothalamic and brainstem autonomic functions to permit survival with medical and nursing care
Bowel and bladder incontinence
Variably preserved cranial nerve and spinal reflexes
"Persistent" = 1 month after traumatic or nontraumatic brain injury
"Permanent" = 3 months after nontraumatic, 1 year after traumatic brain injury
"Recovery of consciousness from a posttraumatic persistent vegetative state is unlikely after 12 months in adults and children. Recovery from a nontraumatic persistent vegetative state after three months is exceedingly rare in both adults and children."
The question I would like to pose now to my visitors is whether to consider a patient dead who has finally been diagnosed as in a Permanent Vegetative State? Another group of patients who are totally unresponsive and have complete and permanent loss of all brain function including the brain stem, can’t breathe and heart will stop despite artificial ventilation (“the brain dead”) are legally considered dead and are currently used as a source of organs for transplant. Should those in a Permanent Vegetative State be considered dead so that needed organ procurement from these patients can be permitted? These patients unlike those considered “brain dead” can breathe and may have a stable cardio-vascular system and appear as noted in the Task Force criteria above.
In these patients, does the apparent fact that they will never experience the conscious awareness of themselves or others or their environment represent the death of their personhood? Or does the warm body with eyes opening and closing and breaths taken and heart beating as seen by the family and others absolutely preclude that this class of patients will ever be considered dead but that they are just in some form of an endless kind of sleep, never to fully awaken and live a life? ..Maurice.
p.s. The photograph included in this posting was taken by me yesterday at the Los Angeles County Arboretum and Botanic Garden is that of a peacock. I have never seen a peacock assume this motionless lying down position and at first it seemed to me that it was dead but, indeed, as it finally got up and showed its feathers, it wasn’t!
posted by Maurice Bernstein, M.D. @ 8:37:00 AM
5 comments
5 Comments:
Dr. Bernstein, not two weeks ago, the Associated Press reported the following:
Vegetative Patients May Have Awareness
Now, this may or may not have been an anomaly, but if you were the "loved one," would you want to take the chance that your wife, daughter, mother ... were aware, but unable to respond, and hand them over as a source for body parts?
I think we're dealing with two issues here. We need to solve the first one beyond any reasonable doubt before we proceed with the second.
And in fact, "reasonable doubt" may not have been a good criterion ...
What is a life worth when it belongs to someone you love? When it belongs to you? When it belongs to a stranger? How about the life of a person who may be aware, but unable to respond, when compared to a person who is dying from cirrhosis?
I think that first we need to advance to the extent of being certain within a very, very tiny error margin, that a person is honestly and truly unaware, and never will be again - before we begin to eye their vital organs greedily. The simple idea of seeing them as "body parts" could cause some hasty judgments.
As far as parts donations are concerned, I think we need a massive push toward education. People don't think if it ... people are afraid of it. People who are educated in what it means to be a whole body donor, or a parts donor, are far more likely to allow it happen.
But let's not associate a state of being that we're still unsure about with something as sought after as vital organs ... we're apparently not quite certain of our science - or ethical enough across the board ... to do that safely.
I think there's a lesson to learn from your peacock, Dr. Bernstein ...
Moof, I agree and until we can get other approaches for organ replacement, like through use of stem cells, we will be faced with obtaining organs from the dead or those alive who sacrifice an organ or a part of one. This issue of who is really "dead" arises because there are not sufficient numbers of persons permitting their organs to be procured after their death by "classical criteria"--permanent absence of heart beat and respiration. So society had to find another source such as the heart beating but "brain dead" patient and society is now looking to the heart beating, not terminally ill but seemingly permanently "lifeless" but yet not really dead "permanent" vegetative state patient. Education of the public about the importance of their voluntary organ donation and encouraging their participation or providing "opt out" legislation may relieve the need to look to controversial sources such as the permanent vegetative state. ..Maurice.
I agree we’re not ethical enough, across the board, to pull the plug on patients to harvest organs. Although I’m sure many hospitals now have ethics boards to help make decisions, does the public trust these boards to employ an ethical standard that would make sense to family members losing a loved one? When I think about harvesting organs I can’t help but reflect on a doctor who lived in my childhood neighbourhood. He was not so affectionately called Dr. Plug Happy. He was a kidney transplant surgeon who had a reputation of bullying staff and family to pull the plug on patients to harvest kidneys. He was never charged but instead, after ignoring warnings for several years, sent off to work elsewhere with whispers of under the table deals.
In trying to encourage members of the public to donate organs is there a root distrust of the value a patient has when no longer viewed as viable, by doctors, but their organs are? I’ve dealt with a medical ethics department. I suspect these departments are not run by people who have training in ethics, but instead are assumed to have knowledge and understanding of ethics via practicing medicine.
Thinking about allowing med. students to do internal exams on female patients without consent, once they are unconscious in the OR, doesn’t bring to mind the training ground for ethical behaviour. Hospitals are not closed communities. Staff members talk to friends about what takes place at work and those friends talk to others. The community develops a sense that not all is above board in medicine. It creates a complex problem for family members and patients related to donating organs.
If one wanted to donate organs when would it be safe to alert doctors to this? Could family members believe what they were told about the status of the patient? Do doctors even know the status of the patient? Or, as Moof so eloquently put it, ‘there’s a lesson to be learned from your peacock…” Even live donations can be a brutal reminder of how patients are view. There have been lawsuits over live donors dying after surgery because complications were ignored. As if the donor had served his or her purpose so nobody could bother to walk down the hall and investigate bleeding. It must feel like the ultimate betrayal to be given the best of medical care before donating an organ. Then ignored, and dying, when trying to communicate to staff that a problem was developing after the surgery. This, without even touching on the issue of what motivates the family to agree to pull the plug.
A radical opinion. Let us presume that a vegetative patient does have conscious awareness and ability to think. Can one imagine the horror of existing in a physical condition in which touch, vision, smell and taste still exist - but the patient is totally unable to act in any way, speak, move, even breathe or otherwise respond voluntarily - for an unlimited period of time? Could you possibly imagine that the patient would wish to continue to exist?
Hans, as you know the persistent/permanent vegetative state patient usually can breathe on their own. However, the physical condition you are describing in your example is virtually identical to that of a patient, conscious and mentally clear but totally paralyzed except for blink and eye movements, which is associated with a brain stem injury and termed the "Locked-In Syndrome". In this condition the respiratory muscles are also paralyzed and patient cannot breathe on their own. Some patients, remaining conscious, have lived for up to 18 years. A description of the "Locked-In Syndrome" by Wikipedia is pasted below from the Answers.com website. There are other resource information about the disorder there too. As you see in the description below "Patients with locked-in syndrome report feeling mostly tranquil, and some report feeling a little sad." And hopefully a few like journalist Bauby noted below remain potentially productive. Hans, it does appear, therefore, that there are patients with most of what you described in your example who might wish to continue to exist. ..Maurice.
Locked-In syndrome
Locked-In syndrome is a condition in which a patient is aware and awake, but cannot move or communicate due to complete paralysis of all voluntary muscles in the body. It is the result of a brain stem stroke in which the ventral part of the pons (part of the brain stem) is damaged. It results in quadriplegia and inability to speak in otherwise cognitively intact individuals. Those with Locked-In syndrome may be able to communicate with others by coding messages by blinking or moving their eyes, which are not affected by the paralysis.
Locked-in syndrome is also known as Cerebromedullospinal Disconnection, De-Efferented State, Pseudocoma, and ventral pontine syndrome. Unlike persistent vegetative state, in which the upper portions of the brain are damaged and the lower portions are spared, locked-in syndrome is caused by damage to specific portions of the lower brain and brainstem with no damage to the upper brain.
Patients who have Locked-In Syndrome are fully aware. They will know exactly where their arms and legs are, and unlike paralyzed patients, they can still feel sensations of pain and touch. Some patients may have the ability to move certain facial muscles. The majority of locked-in syndrome patients do not regain motor control, but several devices are available to help patients communicate.
Patients with locked-in syndrome report feeling mostly tranquil, and some report feeling a little sad. This is contrary to the panic and terror that would be expected in people who cannot move or speak. This finding indicates that emotions are due to interpretations of bodily sensations, which is supported by studies finding that paralyzed people feel more flatness of affect the more of their bodies are paralyzed. Since those who are locked in have no bodily feeling, the brain fails to receive feedback indicative of alarm.
Parisian journalist Jean-Dominique Bauby had a stroke in 1995, and when he awoke 20 days later he found that his body had all but stopped working: he could only control his left eyelid. By blinking his eye he dictated a letter at a time and in this way he wrote The Diving Bell and the Butterfly.
The original version of this article contained text from the NINDS public domain pages on TBI at http://www.ninds.nih.gov/health_and_medical/disorders/tbi_doc.htm and http://www.ninds.nih.gov/health_and_medical/pubs/tbi.htm
Causes
Locked-In syndrome may result for a number of reasons, including:
Traumatic brain injury
Diseases of the circulatory system
Medication overdose
Damage to nerve cells, particularly destruction of the myelin sheath, caused by disease.
Treatment
There is no standard treatment for Locked-In syndrome, nor is there a cure. Stimulation of muscle reflexes with electrodes (Neuromuscular stimulation) has been known to help patients regain some muscle function. Other courses of treatment are often symptomatic.
Long Term Recovery
Unfortunately, recovery does not happen in many cases - it is considered extremely rare for motor function to return in any more than a limited fashion.
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