A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority

Abstract

ObjectivesLocked-in syndrome (LIS) consists of anarthria and quadriplegia while consciousness is preserved. Classically, vertical eye movements or blinking allow coded communication. Given appropriate medical care, patients can survive for decades. We studied the self-reported quality of life in chronic LIS patients.Design168 LIS members of the French Association for LIS were invited to answer a questionnaire on medical history, current status and end-of-life issues. They self-assessed their global subjective well-being with the Anamnestic Comparative Self-Assessment (ACSA) scale, whose +5 and −5 anchors were their memories of the best period in their life before LIS and their worst period ever, respectively.Results91 patients (54%) responded and 26 were excluded because of missing data on quality of life. 47 patients professed happiness (median ACSA +3) and 18 unhappiness (median ACSA −4). Variables associated with unhappiness included anxiety and dissatisfaction with mobility in the community, recreational activities and recovery of speech production. A longer time in LIS was correlated with happiness. 58% declared they did not wish to be resuscitated in case of cardiac arrest and 7% expressed a wish for euthanasia.ConclusionsOur data stress the need for extra palliative efforts directed at mobility and recreational activities in LIS and the importance of anxiolytic therapy. Recently affected LIS patients who wish to die should be assured that there is a high chance they will regain a happy meaningful life. End-of-life decisions, including euthanasia, should not be avoided, but a moratorium to allow a steady state to be reached should be proposed.

From unresponsive wakefulness to minimally conscious PLUS and functional locked-in syndromes: recent advances in our understanding of disorders of consciousness

“…However, we can ask locked-in patients who are also fully dependent on others for their daily life activities and survival. Studies have shown that most chronic locked-in patients selfreported good quality of life, despite their severe restrictions in community reintegration [71]. The longer patients were in a locked-in state, the higher subjective well-being seemed to be.…”

From armchair to wheelchair: How patients with a locked-in syndrome integrate bodily changes in experienced identity

“…When asked if they themselves would accept to be kept alive in such a situation, medical teams often answer that they would not, predicting a negative experience for the patients Lule et al, 2009). Most of the patients, on the contrary, report a positive wellbeing Bruno et al, 2011). We therefore add a control group of healthy medical professionals, well acquainted with the clinical syndrome of LIS, in this survey to compare patients' report and controls' prediction on the integration of bodily changes in the experience of personal identity.…”

Coma and related disorders

“…Although the LIS is not considered to be part of the DOCs, this pathological c ondition is often misdiagnosed as being such and might r epresent one of the cruelest physical disabilities. On 65 LIS patients interviewed, 47 self-reported a meaningful quality of life, while a minority of 17 patients rated themselves as being unhappy [93]. Moreover, demand for euthanasia is surprisingly infrequent in chronic LIS patients [94].…”