Featured Research

from universities, journals, and other organizations

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

Date:
February 24, 2011
Source:
BMJ Open
Summary:
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.

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."


Story Source:

The above story is based on materials provided by BMJ Open. Note: Materials may be edited for content and length.


Journal Reference:

  1. Marie-Aurιlie Bruno, Jan L Bernheim, Didier Ledoux, Frιdιric Pellas, Athena Demertzi, Steven Laureys. A Survey on Self-Assessed Well-Being in a Cohort of Chronic Locked-In Syndrome Patients: Happy Majority, Miserable Minority. BMJ Open, 23 February 2011 DOI: 10.1136/bmjopen-2010-000039

Cite This Page:

BMJ Open. "Most 'locked-in syndrome' patients say they are happy." ScienceDaily. ScienceDaily, 24 February 2011. <www.sciencedaily.com/releases/2011/02/110224121911.htm>.
BMJ Open. (2011, February 24). Most 'locked-in syndrome' patients say they are happy. ScienceDaily. Retrieved September 16, 2014 from www.sciencedaily.com/releases/2011/02/110224121911.htm
BMJ Open. "Most 'locked-in syndrome' patients say they are happy." ScienceDaily. www.sciencedaily.com/releases/2011/02/110224121911.htm (accessed September 16, 2014).

Share This



More Health & Medicine News

Tuesday, September 16, 2014

Featured Research

from universities, journals, and other organizations


Featured Videos

from AP, Reuters, AFP, and other news services

President To Send 3,000 Military Personnel To Fight Ebola

President To Send 3,000 Military Personnel To Fight Ebola

Newsy (Sep. 16, 2014) — President Obama is expected to send 3,000 troops to West Africa as part of the effort to contain Ebola's spread. Video provided by Newsy
Powered by NewsLook.com
Man Floats for 31 Hours in Gulf Waters

Man Floats for 31 Hours in Gulf Waters

AP (Sep. 16, 2014) — A Texas man is lucky to be alive after he and three others floated for more than a day in the Gulf of Mexico when their boat sank during a fishing trip. (Sept. 16) Video provided by AP
Powered by NewsLook.com
Ivorians Abandon Monkey Pets in Fear Over Ebola Virus

Ivorians Abandon Monkey Pets in Fear Over Ebola Virus

AFP (Sep. 16, 2014) — Since the arrival of Ebola in Ivory Coast, Ivorians have been abandoning their pets, particularly monkeys, in the fear that they may transmit the virus. Duration: 00:47 Video provided by AFP
Powered by NewsLook.com
Study Links Male-Pattern Baldness To Prostate Cancer

Study Links Male-Pattern Baldness To Prostate Cancer

Newsy (Sep. 16, 2014) — New findings suggest men with a certain type of baldness at age 45 are 39 percent more likely to develop aggressive prostate cancer. Video provided by Newsy
Powered by NewsLook.com

Search ScienceDaily

Number of stories in archives: 140,361

Find with keyword(s):
 
Enter a keyword or phrase to search ScienceDaily for related topics and research stories.

Save/Print:
Share:  

Breaking News:
from the past week

In Other News

... from NewsDaily.com

Science News

Health News

    Environment News

      Technology News



      Save/Print:
      Share:  

      Free Subscriptions


      Get the latest science news with ScienceDaily's free email newsletters, updated daily and weekly. Or view hourly updated newsfeeds in your RSS reader:

      Get Social & Mobile


      Keep up to date with the latest news from ScienceDaily via social networks and mobile apps:

      Have Feedback?


      Tell us what you think of ScienceDaily -- we welcome both positive and negative comments. Have any problems using the site? Questions?
      Mobile iPhone Android Web
      Follow Facebook Twitter Google+
      Subscribe RSS Feeds Email Newsletters
      Latest Headlines Health & Medicine Mind & Brain Space & Time Matter & Energy Computers & Math Plants & Animals Earth & Climate Fossils & Ruins