Tuesday, April 28, 2009

No Human is a Vegetable

Perhaps you know of stories like this, like my wife's uncle. After a stroke, he fell into a coma. He was put on a feeding tube and a respirator to keep him alive. When a visitor would come, he would twitch or shake. "That's just reflexes" the doctors would say. The doctors said he was brain-dead. The assumption was this was just a way station to inevitable death. Yet his wife attended to him at the hospital every day. Then after three months, he awoke. Later he would tell his wife "All I wanted to do was sleep, and you kept trying to wake me up." Sleep he did, but her persistence paid off. He didn't have permanent serious brain damage. He was asleep, for three months.

Now we know that doctors have been getting it massively wrong. The UK Times reports that 40% of coma patients in a ‘vegetative state’ may be misdiagnosed:

The biggest, most tragic clinical myth about brain injury today is that PVS can be reliably diagnosed by bedside observation alone. It has in fact been known for at least a decade, ever since a key survey of brain-injured patients, that misdiagnosis of the condition runs at more than 40%, a statistic originally calculated by Professor Keith Andrews, former head of the Putney hospital, and confirmed by recent surveys in Europe and North America. This means that valuable rehabilitation strategies are routinely neglected, and misdiagnosed patients end up on unsuitable wards or in care homes where their needs are neither understood nor met.

One type of PVS misdiagnosis are cases of people who are actually conscious but have lost motor cortex control:
Christine, now in a private neurological rehabilitation centre, is locked in rather than “vegetative”: she is conscious but can only communicate by moving her eyes up and down – up for “no”, down for “yes”. The sections of her motor cortex responsible for action have been affected, but not her understanding, reasoning or consciousness. Colin says that in his view a proper diagnosis was not made, nor appropriate treatment devised, until after a visit from a member of a Cambridge brain-research team.

There are other types of misdiagnoses, which researchers are slowly uncovering through careful research:

The team, which calls itself the Impaired Consciousness Study Group and works out of the Wolfson Brain Imaging Centre at Addenbrooke’s hospital, has been looking for, and finding, “islands of significant awareness” in people thought to be “vegetative”. “We can actually see on the scanner,” says Owen, “why certain patients aren’t responding to aural stimuli. We can see if the auditory pathways have been disrupted. We can see that they’re deaf, or it might be we can see they are blind, even though they can’t tell us.” Crucially, the team has done ground-breaking work, using scanners, on the presence of acute pain in minimally conscious patients. This should enable clinicians one day to administer appropriate analgesics after diagnosing pain in uncommunicative patients.

I will make a further statement: 100% of Persistent Vegetative State diagnoses are wrong. No Human is a vegetable, and no amount of brain impairment, temporary, long-term or even permanent, can turn a human being into a vegetable. The PVS term itself is wrong, demeaning and dangerous. It allows the mistreatment of many thousands of victims of brain trauma who deserve a better chance for recovery. It dehumanizes victims so they can be killed - sometimes (as in the Shiavo case) via slow starvation. We need to stop calling human beings vegetables.

What are these syndromes really? Persistent Sleeps States or Persistent Unconsciousness States. The brain is unable to 'boot up' in consciousness, or is in a state that allows no or minimal control or interaction with the body and the world.

Now consider this frightening item from the article:
According to Steven Laureys, professor of neurology at Li├Ęge University, there is constant pressure in many parts of the developed world to withdraw sustenance from vegetative patients in order to allow them to die so that their body parts can be harvested. In a recent study, Laureys reports, “slightly less than half of surveyed US neurologists and nursing-home directors believed that patients in a vegetative state could be declared dead”. His remarks should be set against the background of widespread shortages of organs and body parts for transplantation.
So for the sake of collecting body parts, we will declare living human beings dead. Soylent Green? Brave New World? Wow. There is a better way: Stop treating victims in a state of persistent unconsciousness as sub-human 'vegetables' and start treating them as human beings with a difficult but challenging condition.

It was noted that PSS (Persistent Sleep State) victims that are in the state for 5 years have a low chance of recovery. That may be true, but there was a time when cholera, heart disease and cancer victims had zero chance of recovery; medical science advanced. Perhaps so many are failing to come out of PSS because we call it PVS and imagine the victim lost their capability to be human. So we give up. (Yet so many stories of people coming out comas involve loved ones doing thing to 'wake them up.') They have not. They always were and always will be human, in life and beyond.

Some poignant comments on the article:

my brother spent about a year in a pvs, after being in a coma for 3 months,he was diagnosed as braindead to start with and they told us he would die and convinced us to pull the breathing tube,he began breathing on his own immediately but remained in a coma for a couple months

when he finaly came out of his pvs it was his birthday and heaps of people where coming and going visitng him.he had been sat up and bed and was looking out the window,he began laughing it was the first sound he had made,from that moment on he was back,now hes even got his drivers back and has a job

Daniel, Hawera, New Zealand

I have a relative who was injured in a car accident 5 years ago. She is declared to be PVS but can recognise someone she has not seen for along time. She is being fed by tube but I cant understand why they call her in PVS if she is can communicate, should she not receive more rehabilitation?

Rebecca, New York, USA

Too bad that people don't take these patients to China or other countries where they are using adult stem cell therapy.
Mesenchymal stem cell therapy has been very effective in reversing these conditions, and is being used in the U.S. in studies regrowing muscle, spinal cord, bone, brain and heart.

JMKC, Kansas City, U.S.

One realizes how much a part semantics play in the PVS of the press by the sentence, "Terri was finally allowed to die in March 2005." Terri didn't request her death, so, obviously, Terri was not "allowed" to die. She was starved to death by her husband, his attorney and judges.

Renata, Washington, DC, USA

In my experience not all communication is based on the 5 senses. Years ago, as a student nurse, I looked after people who were in comas. 2 of them stand out in my memory because I was sure they were aware. From one I could feel waves of deep, deep sadness. From the other I could feel anger. I don't know if other nurses could feel this as it was never discussed however we were taught to always treat unconscious people as conscious because hearing is the last sense to go and the first to return.

Jane, Birmingham,

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