Many people believe that people with “locked-in syndrome,” a form of nearly complete paralysis, would want to die, commit suicide, or be euthanized. It turns out those beliefs are false. According to a recent study, more than half of patients with locked-in syndrome indicated – through eye blinks in some cases – that they were getting satisfaction in life. This story sure brings new meaning to the “Choose Life” license plates.
Here are the details in a report from MedPage Today: Among 65 patients who had developed the syndrome a median of eight years previously, only 18 (28%) characterized their lives as “somewhat on the bad side” or worse, according to Steven Laureys, MD, of the University of Liège in Belgium, and colleagues.
In fact, a nearly equal number – 17 – indicated that they felt as well, or almost as well, as in their happiest times before becoming locked-in. Another 21 (32%) gave their overall quality of life lesser but still positive marks.
Writing in the new open-access online journal BMJ Open, the researchers suggested that deeply depressed locked-in patients should be urged to wait before requesting euthanasia, because “there is a high chance they will regain a happy meaningful life.”
At the same time, though, Laureys and colleagues said that end-of-life decisions “should not be avoided.”
Locked-in syndrome typically results from strokes that create anterior pontine brainstem lesions.
Patients are fully conscious but completely immobile except for the eyes. They can be taught to communicate with eye movements or blinks, using them to indicate letters on a board when pointed to by a caregiver.
More than 80% of patients whose physical condition is stabilized survive at least 10 years. Many patients eventually recover some limb control and speech function — in the survey, 70% of respondents said they could move arms or legs at least a little, and 55% were able to speak words or sentences — but most patients remain permanently dependent on others for daily care.
The survey questionnaire, administered through caregivers as necessary, asked respondents to select one of 11 descriptions of their current happiness level. These ranged from “as well as in the best period” to “as bad as in the worst period” of their lives prior to developing locked-in syndrome.
These responses were assigned numeric scores ranging from +5 to -5, with 0 for a response of “neither well nor bad.”
The survey also asked questions about social function, depression, pain, anxiety, and suicidal thoughts; how they spend their time; whether they wanted resuscitation following cardiac arrest; and if they had contemplated euthanasia.
Laureys and colleagues sent the survey to caregivers for 168 patients registered with the French Locked-In Syndrome Association. Responses were received from 91 patients, of which 65 were complete enough for analysis.
In addition to the high prevalence of happy feelings in the study, other notable findings included:
- 64% were able to live at home
- 60% had some or complete freedom of movement in their living quarters
- 53% could take out-of-town trips at least sometimes
- From 60% to 80% reported satisfying work, recreation, and social activities
- 13% reported depression
- 67% reported moderate or severe anxiety
- 46% reported moderate or severe pain
- 58% wanted no resuscitation after cardiac arrest
- 53% had considered euthanasia
- 68% never had suicidal thoughts
Not surprisingly, respondents who said they were unhappy also tended to be more dissatisfied with specific aspects of their condition, and problems such as depression and anxiety and thoughts of suicide and euthanasia were more common.
Anxiety was particularly predictive of unhappiness, Laureys and colleagues reported, with an odds ratio of 0.19 (95% CI 0.04 to 0.87) for happiness scores of 0 to +5 among those indicating they felt anxious.
On the other hand, the ability to speak was powerfully predictive of happiness, the researchers found. The odds ratio for having happiness scores of 0 to +5 was 20.47 (95% CI 1.89 to 221.45) among respondents who indicated they could say words or sentences.
Another factor that may help patients maintain a positive attitude is mental discipline, as indicated by blog posts from a patient with locked-in syndrome since 2004.
The patient, an Indianapolis woman whose name is given as Jennifer Ann Lynn, developed the condition at age 30 following a brainstem stroke. Her husband started the blog almost immediately, but Lynn herself began contributing in 2005. She regained some hand movements and was able to control a computer as well as an electric wheelchair.
She also regained some speech ability, but in a post from December 2010, she explained that whispering and shouting were still impossible.
But, Lynn wrote, “I don’t usually let myself think that, [because] it’s dangerous. It’s a matter of perspective: I can’t think, ‘I wish …, I want …,’ or dwell on what I can’t do.”