Uno se pregunta qué valor real tienen las declaraciones de voluntad anticipadas, al ver que las personas reajustan sus expectativas cuando les sucede una desgracia grave, con respecto a las que tenían antes de que ésta les ocurriera. Este ajuste, al disminuir la diferencia entre realidad presente y expectativas, mejora la calidad de vida.
En el trabajo “A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority” Bruno et al. estudian 65 personas con locked-in syndrome. Los resultados son bastante sorprendentes, y vale la pena incorporarlos a los debates sobre decisiones anticipadas, suicidio asistido, eutanasia, etc. Préstese atención al lapso de un año que parecería tardar la adaptación.
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.
- Marie-Aurélie Bruno1,
- Jan L Bernheim2,
- Didier Ledoux1,
- Frédéric Pellas3,
- Athena Demertzi1,
- Steven Laureys1