COMA RECOVERY - A RARE EVENT?

As the health care 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 about the wisdom of these medical decisions, which are all too often not based on sound scientific evidence but 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.

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