As the healthcare profession moves rapidly towards a quality of life ethic, many coma patients may be written off as hopeless too soon. Treatment is stopped and feeding tubes pulled consigning the patient to death. We need to take a closer look at the wisdom of these medical decisions, which are all too often not based on sound scientific evidence but on the doctor's gloomy outlook for these severely disabled patients. The following are some stories of patients who have recovered from comas.
Recovery from Coma Is a Reality for Many Patients- is the title of an article by Liz Townsend in National Right to Life News, October 2001. The author reports on the work of Dr. Mihai Dimancescu, chairman of the board of the Coma Recovery Association. He defines coma as "a state of unresponsiveness from which an individual has not yet been aroused." He asserts that many patients emerge from comas, even after months in that condition. Some patients in a coma are totally unaware while others may be partially or even totally aware of their environment but unable to communicate it to others - called a "locked in state". Dr. Dimancescu says that medical science cannot determine why most comas occur or predict which patients will recover. He says that patients who have been in a coma for several weeks do have the potential for recovery: "New connections can be made between brain cells where connections have been lost. Parts of the brain take over the function of other parts that have been lost." But he says that patients have to be given the time to awake from coma and many in the medical community, especially with older patients are too eager to convince the family to stop treatment too soon and discontinue the feeding tube and cause death by dehydration and starvation.
As we reported in our March 2000 Newsletter, a Newsday, 6/26/96 account of Dr. Dimancescu's "sensory stimulation" program which bombards patients with sounds, noises, smells and touch to stimulate the senses. In a 1993 article Dr. Dimancescu stated his program "produced a 91% arousal rate for prolonged coma patients compared to traditional medicine's 10% rate of arousal. He has treated 900 to 1000 patients over the years.
Judy's Story
Judy had been in a coma for three months. On medical rounds the professor told his medical students, "She's in a coma. She'll never wake up". When Judy proved his prediction wrong and came out of the coma she said she "always remembered that darn professor, refusing to stop by her bed, saying she would not wake up!"
Brian Cressler's Story
Brian was in a coma for 18 months as a result of a car accident in June 1991. His parents took him home in January 1992. "He couldn't move or talk, his eyes locked in a blank stare"- ‘a look that went right through you’ said his mother. His parents took care of him with the help of a physiotherapist to prevent muscle atrophy. After a year and a half, "they noticed a change." His mother said, "You could see a slow awakening. It was like he was talking through his eyes, they just came alive." Six months later he said his first word, "Mom." It was ‘pure joy’ said his Mom.
Patricia White Bull's Story
Patricia had been in a coma for 16 years after giving birth to her son, Mark. On Christmas Eve, 1999, while nurses were fixing her bed, she suddenly said: "Don't do that!" By January "she was able to speak clearly and visit with her four children."
Man Awakes from 19 Year Coma- This report is by Alice Stewart, posted on the Internet 7/2/03 (www.kark.com/kark tv/news/story).
Terry Wallis' Story
Terry and his wife were celebrating the birth of their daughter, Amber. Then tragedy struck when he went for a ride with his friend in 1984. The next day their bodies were found under a bridge. His friend died and Terry's injuries left him a quadriplegic and in a coma that lasted almost 20 years! He was moved to a nursing home and received "round the clock care." His family came to visit often. After all those years of the whole family missing out on his company, "after 19 years of silence...Terry spoke his first word. He said 'Mom'". The author reports that most of his time was at a rehab center and "his family took him out on weekends and special occasions. The doctor said that's why he remembers things, we might have kept his mind going." The family urges others with a loved one in a coma to "keep the faith and never give up."
Locked-in State- An article in Psychology Today , Sept/Oct 2002 by Patton Howell and James Hall tells the story of a patient suffering from a "locked-in" state.
James Hall's Story
James suffered a rare type of stroke in 1991. It seemed he had "no cognitive ability or awareness after the stroke." But one of James' friends had learned from a doctor about people who had a "locked-in" syndrome who could live "for years-unfortunately" said the doctor. Fearing that his friend, James would be "killed off as medical professionals exerted pressure on the family," Patton Howell and another of James' friends were determined to find a way for James to communicate. They were "persistent and creative" and successful and invited the hospital staff to observe the results. They asked James to tell the staff "I want to live" as a clear message. However the message that James typed was "I DEMAND TO LIVE *******" as a "direct message to medical professionals in the room who had been expressing the opinion that keeping him alive was pointless."
Man Awakes from a 7 Year Coma- A Florida Sun Sentinel article by the Associated Press, 9/7/02 reported this account of coma recovery.
Peter Sana's Story
27 year-old Peter Sana went into a coma as a result of meningitis in March 1995. He has been in a Honolulu nursing home all these years but he began responding to the commands from his nurse over the last month. The nursing home staff says regular visits from his family over the years played a large part in his recovery. Sana's father visited every day.
A Nurse's Testimony- In our November 2001 Newsletter Nancy Valko, RN, President of Missouri Nurses told us two stories about two of her patients given up as hopeless.
Katie's Story
Eighty-four-year-old Katie was in a coma after a massive stroke and doctors recommended to her out-of-town family that she be allowed to die. Nancy met her on the oncology unit where she was working and was told Katie was totally unresponsive. But Nancy had been "an advocate of talking to comatose patients and many of them unexpectedly 'woke up' or improved." The nurses spent a lot of time caring for Katie and within a few weeks she started "to respond and even to speak. "One day Nancy gave Katie a doll and as she clutched the doll constantly she became less confused. Then they began a kind of 'charm school' for her having her say ‘please and thank you.’ She was no longer confused, recovered her long-term memory and began to feed herself with a spoon. Sadly Katie was transferred to another unit and began to regress without the ongoing loving support of Nancy and the other nurses. Nancy ends the story with this conviction: "I have seen the power of labels such as ‘hopeless’ or ‘difficult’ when applied to patients and I have seen the power of affirmation even save a life."
Chris' Story
Nancy tells another story about a mother of a 19-year-old girl brain-injured in a car accident 9 months earlier. Eventually Chris came off the ventilator but was considered by the doctors to be in a hopeless vegetative state. The choice was between removing the feeding tube and dehydrating her to death or transfer her to a nursing home. Nancy was called by the mother for help. So Nancy worked with Chris for about half an hour once a week. Now Nancy says "Chris is conscious, smiles, cries, moves her legs on command, turns her head to look at people talking to her and now appears to be trying to vocalize." Nancy recommended to the other nurses Jane Hoyt's pamphlet, "A Gentle Approach Interacting with a Person who Is Semi-conscious or Presumed in a Coma." (This pamphlet is available from N.Y. State Nurses for Life on request.)
Jenny's Story
Nancy Valko reported on her E-Mail, 8/10/02: Jenny was declared to be in a vegetative state after a brain injury from a car accident 2 years ago. Nancy has been seeing her weekly and reports signs of progress. "She now laughs at simple jokes, cries, frowns, etc. and eats ice cream by mouth. It is expected that she will be able to get off her spoon feedings in the future and her parents want to try the median nerve stimulator."
Ron's Story
Nancy's report on a second patient: Ron was brain-injured three years ago and will be going home soon. His Mom has applied for a median nerve stimulator. His improvement has not been as "spectacular as Jenny's but his face crinkled up as if he was ready to cry when his Mom and I were leaving recently. I was amazed," says Nancy.
What have we learned from these stories of remarkable recoveries of "hopeless" patients that the medical professionals were ready to "write off?" The one common denominator appears to be they all had families and/or nurses that stood by them throughout their long ordeals.
NEW YORK STATE NURSES FOR LIFE, Inc.
28 Rockville Ave., Rockville Centre, NY 11570
"Sleeping pill" wakes patient said to be in
"persistent vegetative state."
Sleeping Pill May Reverse Comatose Patients, Study Says
By Dawn Rizzoni
Jun 2, 2006
(CNSNews.com) - Scientific researchers have revealed in the medical journal NeuroRehabilitation that a commonly-used sleeping pill, zolpidem (brand name Ambien), can be used to temporarily awaken patients in a persistent vegetative state (PVS), coma, or other brain-injured state.
The discovery has attracted the interest of The Terri Schindler-Schiavo Foundation for Health Care Ethics. The Foundation was named in memory of the brain-damaged Florida woman who died in March 2005 after her husband Michael Schiavo won a long legal battle to cut off her off from all nutrition.
In light of the medical breakthrough, The Schindler-Schiavo Foundation has called for a moratorium of "ordinary care removal for persons diagnosed in a PVS condition." Terri's parents and siblings do not believe Michael Schiavo would have allowed her to be administered the Ambien even if it had been suggested.
"Sadly, we will never know if any of these drugs or treatments that were available would have improved Terri's condition," the Schindler family stated in their press release. "Terri's family pleaded for years with Terri's guardian, Michael Schiavo, and the courts to try and use different treatments of medicine that could possibly help improve Terri's condition, but were denied."
Doctors R.P. Clauss and W.H. Nel reported that the stimulation effects of zolpidem reverse the damaging effects in brain injured patients, to the point that they are able to wake up and interact with their environment. The benefits were maintained as long as the drug stayed in a patient's system, according to Clauss and Nel.
The drug was given daily to patients in the study which lasted six years. Each patient had been in a PVS for at least three years.
The discovery that zolpidem had such promising effects came about when Dr. Clauss gave a PVS patient the drug for restlessness. The drug, which normally induces sleepiness, also has an arousing effect on certain areas of the brain, the Clauss/Nel report indicates.
After being given zolpidem, the patients in the study could "interact, make jokes, and speak on the phone," Clauss stated in the journal, and one patient even played catch with his family.
Stephen Drake, research analyst for the pro-disabilities group Not Dead Yet, said it's not that zolpidem helped PVS patients, but that "misdiagnosis is the real issue."
"We put out a moratorium (on removal of ordinary care in PVS patients) a year ago," Drake said. "Persistent Vegetative State should really be called Persistent Non-Responsive State because that's all we can tell from the outside. There's no way to really know at the present time" whether someone is truly PVS or temporarily non-responsive.
"There's so much evidence that we're making mistakes" in these PVS diagnoses, Drake said. "So to us, (the zolpidem news) is interesting, but it doesn't change anything."
The Schindler family members also touched on the misdiagnosis issue in their press release.
"A report released by the British Medical Journal in 1996 found that 43 percent of the diagnosed cases of PVS they studied were in fact misdiagnosed," the statement reads. "We at the Foundation are seeing that the PVS diagnosis is being commonly misdiagnosed. Consequently, it has become very obvious we don't know enough about this so-called diagnosis, and common sense dictates that the removal of food and water based on this misclassification must end until further studies can be conducted."
Bobby Schindler, Terri's brother, told Cybercast News Service that he believes "the PVS diagnosis is a very subjective diagnosis."
"It is now being used in most states as one of the criteria to allow doctors to recommend terminating life. We are seeing a growing amount of evidence that suggests that the PVS diagnosis is often being misdiagnosed. And now there are certain drugs that could provide help to persons that are being labeled as PVS," Schindler said.
Other drugs have been successfully used in the past to help PVS patients. In December 2000, Patricia White Bull awoke after 16 years of what doctors called a persistent vegetative state, after being given the drug Amantadine. The drug is commonly used to stimulate individuals with Parkinson's disease and brain damage.
The pharmaceutical group NeuroHealing was just granted "orphan drug status" by the Food and Drug Administration (FDA) on a drug labeled NH001 that worked much like Ambien in PVS and comatose patients, but with longer-lasting effects, according to the company's president, Daniel Katzman.
"With the growing amount of uncertainly regarding this diagnosis, and drugs that could potentially help, it is only common sense we stop using it, particularly when the decision to terminate life can't be undone," Bobby Schindler said.
Michael Schiavo's political group TerriPAC did not respond to requests for comment, nor did the pro-euthanasia group Death With Dignity.
EXCLUSIVE: MY SON WAS WOKEN FROM A 3-YEAR COMA ..BY A SLEEPING PILL
EXCLUSIVE
By Victoria Kennedy
IT was the moment Sienie Viljoen had waited three long years to see.
Standing by the hospital bed, where her son Louis lay in a coma after a terrible road accident, the 57-year-old noticed his eyes flicker and then focus.
Leaning forward tentatively, Sienie whispered "Louis?" In a heartbeat he replied: "Yes?"
It was the first word her only son had uttered since he was knocked down by a lorry at the age of 25.
"He'd had so much going for him when it happened," she says. "A good job, a house and a fiancee. They were to be married in six months. It's so sad."
But he lay in hospital for more than three years, diagnosed as being in a permanent vegetative state with no hope of recovery.
That was until his doctor gave him Zolpidem, a common prescription sleeping pill, after he became restless in his coma.
Instead of calming him the drug designed to put people to sleep woke him in just 25 minutes.
Now the medical world is watching to see if Louis holds the secret to helping thousands of other coma patients.
Today, doctors give him a Zolpidem a day - half in the morning and half in the afternoon.
That keeps him awake for eight hours a day, before he slips back into the coma every night.
With his brain function still improving slowly, he can talk with his mum and recognise friends.
Wally Nel, the doctor who prescribed the pills, has been astonished by his progress.
"When you think about how many life-support machines have been switched off over the years, it makes you wonder," he says.
"There is a lot of research to be done before we can start using this drug on others, but now we have something we can work on."
In July, British firm ReGen will start six months of clinical trials on 30 "guinea pig" coma patients to see if it works on them too.
Experts say if the tests are a success the drug could be available in the UK for permanent vegetative state patients by 2009.
Speaking to the Mirror, Sienie recalls the unforgettable moment her son came back to the world of the living.
"For three years I sat by his bed and prayed to hear him speak again - he had such a lovely deep voice," Sienie, a vet living in Springs, South Africa, says.
"He hadn't made a sound, not even a groan. Then that night I heard a noise that sounded like 'urgh'."
"I asked my husband 'did you hear that?' and he said 'no'. But then I noticed Louis's eyes change.
"They normally looked glazed but he was looking differently.
"When I asked him if he could see me he simply answered 'yes'.
That was his first word. I was in such shock I cried."
Louis, now 35, has no recollection of the accident that put him in this state in May 1996.
His working day as a hospital switchboard operator didn't finish until 7pm, but on that afternoon he borrowed a colleague's bicycle to ride the short distance back to his house to pick up some cigarettes.
BUT he paused in the middle lane of a highway and was hit by a truck. He was flung over the road and landed on his head.
Airlifted to Johannesburg General Hospital, he spent three months in intensive care before being moved to the Tini Vorster home in Dunnottar, where he is still being treated.
Now awake, he has had a lot to catch up on. "Louis was such an attractive man before the accident," Sienie, 57, says wistfully. "He loved his wife-to-be and was a sport fanatic.
"But when he went into the coma I told his fiancee Ursula she must get on with her life.
"It was hard because she was devastated when it happened. The wedding was planned and she had two children from a previous relationship who were so close to Louis.
"But she needed to move on, I knew that. She went on to have a child with someone else, but they have since split up.
"She comes to visit occasionally but it's hard. The first time she came in after he awoke he knew her immediately and took her hand to feel if she was wearing a ring on her wedding finger.
"She just said 'don't worry Louis I'm not married to someone else'.
You could tell he was pleased.
"I know it was emotional for her because she couldn't take it to see him like that."
Sienie also had to break the heartrending news to Louis that while he was in his coma his grandfather Willie had died.
"He cried all night," she says.
"After that I promised myself I wouldn't tell him bad news like that again. I try to keep things positive."
His voice is slow and muffled but every day Louis chats away to the nurses and doctors.
Sienie is amazed how he has remembered the names of everyone he used to work with and even old school teachers.
"The other day I told him it was the 24th and he smiled and said 'pay day tomorrow'."
"We tried to explain the car crash to him but he couldn't remember it," she says. "He doesn't know why he's there or that he was in a coma.
When Louis was in his coma Sienie used to sit by his bedside every night, talking to him about her day. She now goes every other night.
She never goes on holiday for longer than a week and when she does she arranges for another family member to visit him instead.
"He loves company and he can always remember things from when I last spoke to him.
Recently he told me how he longs to eat a hamburger.
"He can't eat solids because his teeth had to be removed due to decay while he was in his coma. I always bring him sweets and yogurts and juices."
Sienie's devotion to her son was rewarded on Mother's Day this year.
"I came in and he'd remembered what day it was and grabbed me and kissed me," she smiles.
"It was very touching. He's such a sweet boy.
"Life could have been so different for him and it's so sad to think I will never be a grandma."
LOUIS' condition is notably improving. At first, he could only move the little finger on his left arm.
Now he can move his left arm enough to pick things up. He can also move his right arm and his left leg.
Dr Nel says: "Scans have shown Louis has a 54 per cent improvement in brain function.
"I've been in this game for 40 years and have never seen anything like this. This is medical history." Sienie is now hopeful.
"It still affects me to see him like he is," Sienie, a devout Christian admits. "But what's happened is a miracle and I'm now hoping for another one - that he might be able to wake up without the drugs and even be able to sit in a wheelchair.
"In the meantime, all I can give him is love."
MIRACLE TREATMENT HERE BY 2009
A BRITISH doctor, Ralph Clauss, has just discovered why Zolpidem has a miraculous effect on coma patients.
The consultant at Royal Surrey County Hospital in Guildford, says: "Louis' case is phenomenal and opens doors for permanent vegetative state patients improving consciousness.
"The drug will not work on all brain damaged patients, though. It depends on the size of the area of their brain that is 'asleep'.
"Zolpidem is most effective on people who have a large area of their brain which is dormant. Patients are prescribed it to help them sleep as it activates receptors in the brain that enhance chemicals involved in inducing sleepiness.
"When brain damage occurs, these receptors change shape. This new shape is then distorted by the drug and causes the nerve cells to resume normal activity again.
Percy Lomax, chief executive of ReGen Therapeutics, the firm patenting Zolpidem to use on patients with brain dormancy in the UK, says:
"This is a major breakthrough and very exciting because you can change people's lives."
"We have tried the drug on other patients in South Africa with varying forms of dormancy and the vast majority ??A?A" 80 ??" have responded well.
"We are now doing trials on 20 of them to see if it can change their brain dormancy with a lesser dosage. We then have two further trial phases.
"If it all goes positively we will be able to register it for use in Britain. It should be on the market by 2008/2009."
