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'Locked-in' patients indicate they are happy with life

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Doctors have created a 'brain-reading' device which allows them to communicate with patients who have 'locked-in syndrome', a condition that leaves people completely paralysed but aware and able to think.

Niels Birbaumer, a neuroscientist who led the research at the University of Tübingen, Germany, said the technology, which reads brain activity to decipher if a patient is answering 'yes' or 'no' to a question, is the "first sign that completely locked-in syndrome may be abolished forever."

All four patients who were tested indicated that they were "happy" with life.

Patients trained to answer 'yes' or 'no' questions

Completely-locked in syndrome, or CLS, is brought on by amyotrophic lateral sclerosis, or ALS.

The technology was tested on three women and one man, aged 24 to 76. The patients are fed through tubes and kept alive on ventilators, and are cared for at home by family members.

The patients wore a cap during the sessions that uses infrared light to detect levels of blood flow in different areas of the brain.

Doctors asked the patients to think 'yes' or 'no' in response to a number of simple questions. A computer connected to the cap distinguished blood flow patterns for when the patients answered 'yes' or 'no'.

Niels Birbaumer said: "This is the first time we've been able to establish reliable communication with these patients and I think that is important for them and their families.

"I can say that after 30 years of trying to achieve this, it was one of the most satisfying moments of my life when it worked."

Satisfaction about quality of life

When the patients scored at least 70% on the training questions, the doctors then asked more personal questions, including about quality of life.

All four patients indicated that they were happy with their life.

Adrian Owen, a neuroscientist at the University of Western Ontario who is exploring whether the new technology could be used on other brain-injured patients, commented:

"One of the most surprising outcomes of this study is that these patients reported being 'happy' despite being physically locked-in and incapable of expressing themselves on a day-to-day basis, suggesting that our preconceived notions about what we might think if the worst was to happen are false.

"Indeed, previous research has shown that most locked-in patients are actually reasonably satisfied with their quality of life."

The Kenwards' fight for life

Christian Legal Centre clients Nikki and Merv Kenward believe strongly that the lives of all, including the vulnerable and the disabled, should be protected at all costs.

Nikki Kenward has experienced something similar to CLIS. Shortly after she married her husband Merv, she contracted the Guillain-Barré Syndrome virus.

It is a condition where the body's immune system attacks part of the nervous system. The virus left her in a condition where she was only able to blink one eye.

Her lengthy hospital stay and unlikely recovery taught both Nikki and Merv a great deal about life, death and the questions surrounding end of life decisions.

Supported by the Christian Legal Centre, Nikki and Merv mounted a legal challenge to a change made by the Director of Public Prosecutions (DPP) in 2014.

The DPP claimed to have 'clarified' the policy when she made an amendment to the guidelines on assisted suicide prosecution policy, without public consultation. The change means that healthcare professionals who help someone to kill themselves are less likely to be prosecuted.

The Kenwards believe the change is "liberalisation by the back-door".

Although their challenge was rejected, they are looking at ways to continue their fight for life

Related Links: 
Groundbreaking system allows locked-in syndrome patients to communicate (Guardian)  
Completely 'locked-in' patients can communicate (BBC)
Nikki and Merv's fight for life 


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