Navigation Links
Most 'locked-in syndrome' patients say they are happy
Date:2/24/2011

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
edickinson@bmjgroup.com
44-020-738-36529
BMJ-British Medical Journal
Source:Eurekalert

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:
*Name:
*Comment:
*Email:
(Date:10/13/2017)... ... October 13, 2017 , ... Lori R. Somekh, founder of the ... national organization of elder law and special needs planning attorneys. “Membership in ElderCounsel helps ... provides a forum to network with elder law attorneys nationwide,” said Somekh. , ...
(Date:10/13/2017)... , ... October 13, 2017 , ... Ellevate Network, the ... business to advocate for action towards gender equality at their inaugural Summit in New ... the globe, and reached a social audience of over 3 million. To watch the ...
(Date:10/13/2017)... ... October 13, 2017 , ... ... Software Development, has been awarded a contract by the Center for Medicare and ... aims to accelerate the enterprise use of Agile methodologies in a consistent and ...
(Date:10/12/2017)... ... October 12, 2017 , ... CitiDent ... sleep apnea using cutting-edge Oventus O2Vent technology. As many as 18 million ... by frequent cessation in breathing. Oral appliances can offer significant relief to about ...
(Date:10/12/2017)... ... ... The American College of Medical Informatics (ACMI) will present the 2017 Morris ... of AMIA’s Annual Symposium in Washington, D.C. AMIA’s Annual Symposium is taking ... in the field of medical informatics, this prestigious award is presented to an individual ...
Breaking Medicine News(10 mins):
(Date:10/2/2017)... Halo Labs announces the European launch of their new ... at MIBio 2017 in Cambridge, U.K on ... in biopharmaceutical samples with unprecedented speed and sensitivity while using far ... Membrane Imaging. ... particle analysis system ...
(Date:9/27/2017)... MIAMI , Sept. 27, 2017  Commended for their ... recent notable awards. Ranked as number one in the South ... ninth time in Inc. 5000 yearly list, the national specialty ... CEO, Armando Bardisa will soon be honored by ... Set to receive his award ...
(Date:9/23/2017)... Pa. , Sept. 22, 2017 Janssen ... a complete response letter from the U.S. Food and ... seeking approval of sirukumab for the treatment of moderately ... letter indicates additional clinical data are needed to further ... moderately to severely active RA. ...
Breaking Medicine Technology: