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:6/26/2016)... ... 27, 2016 , ... Quality metrics are proliferating in cancer care, and are ... the eye of the beholder, according to experts who offered insights and commentary in ... Managed Care. For the full issue, click here . , For the American ...
(Date:6/26/2016)... ... , ... Pixel Film Studios Released ProSlice Levels, a Media Slicing Effect ... a whole new perspective by using the title layers in ProSlice Levels to ... ProSlice Levels contains over 30 Different presets to choose from. FCPX users ...
(Date:6/26/2016)... NC (PRWEB) , ... June 26, 2016 , ... Brent Kasmer, a legally blind and ... to be personalized through a fitness app. The fitness app plans to fix the two ... currently only offer a one size fits all type program , They don’t ...
(Date:6/25/2016)... ... June 25, 2016 , ... Experts from ... at AcademyHealth’s Annual Research Meeting June 26-28, 2016, at the Hynes Convention Center ... care topics including advance care planning, healthcare costs and patient and family engagement. ...
(Date:6/25/2016)... ... ... temporary closing of Bruton Memorial Library on June 21 due to a possible lice infestation, ... aspect of head lice: the parasite’s ability to live away from a human host, and ... necessary one in the event that lice have simply gotten out of control. , As ...
Breaking Medicine News(10 mins):
(Date:6/24/2016)... Research and Markets has announced the addition of ... report to their offering. ... The World Market for Companion Diagnostics covers the world market ... the report includes the following: , World ... Region (N. America, EU, ROW), 2015-2020 , World IVD ...
(Date:6/24/2016)... Mass. , June 24, 2016   Pulmatrix, ... pharmaceutical company developing innovative inhaled drugs, announced today that ... Russell Investments reconstituted its comprehensive set of ... "This is an important milestone for Pulmatrix," ... will increase shareholder awareness of our progress in developing ...
(Date:6/24/2016)... , June 24, 2016  Arkis BioSciences, ... less invasive and more durable cerebrospinal fluid treatments, ... funding.  The Series-A funding is led by Innova ... Fund, and other private investors.  Arkis, new financing ... instrumentation and the market release of its in-licensed ...
Breaking Medicine Technology: