A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority
- Marie-Aurélie Bruno1,
- Jan L Bernheim2,
- Didier Ledoux1,
- Frédéric Pellas3,
- Athena Demertzi1,
- Steven Laureys1
- 1Coma Science Group, Cyclotron Research Centre and Neurology Department, University and University Hospital of Liège, Liège, Belgium
- 2Department of Human Ecology and End-of-Life Care Research Group, Faculty of Medicine and Pharmacy, Vrije Universiteit Brussel, Brussels, Belgium
- 3Médecine Rééducative, Hôpital Caremeau, CHU Nîmes, Nîmes and Association for Locked-in Syndrome (ALIS), Paris, France
- Correspondence to Professor Steven Laureys;
- Received 15 December 2010
- Accepted 14 January 2011
- Published 23 February 2011
Objectives Locked-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.
Design 168 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.
Results 91 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.
Conclusions Our 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.
- Locked-in syndrome
- quality of life
- mental health
- adult neurology & neurology
- stroke & neurology
- medical ethics
- rehabilitation medicine
- stroke medicine
To cite: Bruno M-A, Bernheim JL, Ledoux D, et al. A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority. BMJ Open 2011;1:e000039. doi:10.1136/bmjopen-2010-000039
Funding This research is funded by the Belgian Fonds National de la Recherche Scientifique (FNRS), European Commission (Mindbridge, DISCOS, CATIA and DECODER), James S. McDonnell Foundation, Mind Science Foundation, and French Speaking Community Concerted Research Action (ARC 06/11-340).
Competing interests None.
Contributors MAB, SL and JB were responsible for acquisition and analysis of the data. MAB and JB interpreted the data and drafted the manuscript. DL provided statistical expertise. JB, SL, DL, FP and AD contributed to critical revision of the manuscript. All authors read and approved the final manuscript. MAB and JB contributed equally to the manuscript.
Provenance and peer review Not commissioned; externally peer reviewed.
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