Navigation Links
Most 'locked-in syndrome' patients say they are happy

Most "locked-in syndrome" patients say they are happy, and many of the factors reported by those who say they are unhappy can be improved, suggest the results of the largest survey of its kind, published in the launch issue of the new online journal BMJ Open.

The findings are likely to challenge the perception that these patients can no longer enjoy quality of life and are candidates for euthanasia or assisted suicide, say the authors.

The research team quizzed 168 members of the French Association for Locked in Syndrome on their medical history and emotional state, and their views on end of life issues, using validated questionnaires.

Locked-in syndrome describes a condition in which a person is fully conscious, but cannot move or communicate, save through eye movements or blinking. The syndrome is caused by brain stem injury, and those affected can survive for decades.

In all, 91 people replied, giving a response rate of 54%. Around two thirds had a partner and lived at home, and most (70%) had religious beliefs.

There were no obvious differences between those who expressed happiness or unhappiness, but not unexpectedly, depression, suicidal thoughts, and a desire not to be resuscitated, should the need arise, or for euthanasia were more common among those who said they were unhappy.

Over half the respondents acknowledged severe restrictions on their ability to reintegrate back into the community and lead a normal life. Only one in five were able to partake in everyday activities they considered important.

Nevertheless, most (72%) said they were happy.

Only four of the 59 people (7%) who responded to the question asking whether they wanted to opt for euthanasia, said they wished to do so.

Among the 28% who said they were unhappy, difficulties getting around, restrictions on recreational/social activities, and coping with life events were the sources of their unhappiness.

But a shorter period in the syndrome - under a year - feeling anxious, and not recovering speech were also associated with unhappiness.

A greater focus on rehabilitation and more aggressive treatment of anxiety could therefore make a big difference, say the authors, who emphasise that it can take these patients a year or more to adapt to this huge change in their circumstances.

"Our data show that, whatever the physical devastation and mental distress of [these] patients during the acute phase of the condition, optimal life sustaining care and revalidation can have major long term benefit," they write. "We suggest that patients recently struck by [the syndrome] should be informed that, given proper care, they have a considerable chance of regaining a happy life," they add.

And they conclude: "In our view, shortening of life requests ... are valid only when the patients have been give a chance to attain a steady state of subjective wellbeing."


Contact: Emma Dickinson
BMJ-British Medical Journal

Related medicine news :

1. Most Locked-In Syndrome Patients Happy, Survey Finds
2. Spinal Fluid May Hold Clues to Lyme Disease, Chronic Fatigue Syndrome
3. Study Says 2 Therapies Help Fight Chronic Fatigue Syndrome
4. Researchers identify the genotype of disorders causing cardiac sudden death syndrome
5. Figuring out fetal alcohol syndrome in fruit flies
6. Dry Eye Syndrome Common in Winter
7. Exercise improves symptoms in irritable bowel syndrome
8. Exercise improve symptoms in irritable bowel syndrome
9. Ovarian Cyst Syndrome May Raise Health Risks from Plastics Chemical
10. UBC-VCH researchers find critical link between Down syndrome and Alzheimers disease
11. Metabolic syndrome found in 52 percent of patients after liver transplantation
Post Your Comments:
(Date:6/25/2016)... (PRWEB) , ... June 25, 2016 , ... On Friday, ... presented a Bronze Wellness at Work award to iHire in recognition of their exemplary ... part of the 7th annual Maryland Workplace Health & Wellness Symposium at the BWI ...
(Date:6/24/2016)... ... ... Those who have experienced traumatic events may suffer from a complex set ... drug or alcohol abuse, as a coping mechanism. To avoid this pain and suffering, ... traumatic event. , Trauma sufferers tend to feel a range of emotions, from depression, ...
(Date:6/24/2016)... ... June 24, 2016 , ... The Pulmonary Hypertension Association ... it will receive two significant new grants to support its work to advance ... 25th anniversary by recognizing patients, medical professionals and scientists for their work in ...
(Date:6/24/2016)... ... June 24, 2016 , ... Comfort Keepers® of San Diego, CA is ... Road To Recovery® program to drive cancer patients to and from their cancer treatments. ... the highest quality of life and ongoing independence. Getting to and from medical ...
(Date:6/24/2016)... , ... June 24, 2016 , ... ... at the Clinical Decision Making in Emergency Medicine conference in Ponte Vedra Beach, ... journal articles published in Emergency Medicine Practice and Pediatric Emergency Medicine ...
Breaking Medicine News(10 mins):
(Date:6/26/2016)... Ontario , June 27, 2016  VMS Rehab ... Company,s Board will take whatever measures required to build ... Company,s stock which is currently listed on the OTC ... Wexler, Company Chairman and CEO, "We are seeing an ... difficult to understand, not only by the Company, but ...
(Date:6/24/2016)... FRANCISCO, Calif. , June 24, 2016 /PRNewswire/ ... ), a biopharmaceutical company developing novel therapeutics for ... unmet needs, today announced the closing of its ... of common stock, at the public offering price ... in the offering were offered by GBT. GBT ...
(Date:6/24/2016)... , June 24, 2016 The Academy ... of recommendations that would allow biopharmaceutical companies ... with entities that make formulary and coverage decisions, a ... "value" of new medicines. The recommendations address ... not appear on the drug label, a prohibition that ...
Breaking Medicine Technology: