[Is there quality of life with locked-in syndrome?] / Kwaliteit van leven bij locked-in-syndroom: kan dat?

ABSTRACT

A 57-year-old man developed a locked-in state due to a brain stem stroke. He communicated through eye movements. The team suggested treatment should be discontinued, as there was no perspective of improvement. The family was very upset because they experienced sufficient quality of life. We investigated what 'quality of life' means. The literature shows that severely ill and completely care-dependent patients may experience high quality of life; this is called the disability paradox. Patients and families evaluate quality of life by looking for positive things to live for. Some quality-of-life tests, however, understand quality of life as 'functionality'. Healthy people evaluate the situation of people living with handicaps more negatively than the handicapped themselves do. Practitioners may overlook the instability of patients' evaluations responses and situations may shift. Quality of life as an outcome in clinical trials may be different for individual patients. These insights may improve communication.