Anales del Sistema Sanitario de Navarra
versión impresa ISSN 1137-6627
Aim. To analyse the accounts of the relatives of patients who died during one year in a hospital in Navarre, within a study of the quality of care for the dying. Method. A telephone interview was conducted with the person dearest to the patients who had died in the course of one year in the hospital. The TOOLKIT survey, previously validated, was used to this end. In all cases a maximum of three calls was made to establish contact with the person to be interviewed. The calls were made between three and six months following the death of the patient. The first part of the interview was aimed at providing information about the aim of the study and informed consent was requested. Four fields were analysed: physical and emotional comfort, shared decision making, respect and dignity, and care of the carers. The interview ended with an open question: Do you wish to add anything else?. Results. The number of persons interviewed was 327. For the 712 deceased in the hospital who met the requirements, 320 persons could not be located and another 65 refused to be interviewed. Many complaints were gathered concerning the quantity and quality of information and the manner and time of its provision. There were also complaints concerning respect for the wishes of the patient, the management of pain, dyspnoea and personal treatment received. The lack of emotional support perceived by the relatives is also important. Conclusions. Besides the numerical variables contained in the survey, we believe that the narrative that a survey can contain provides key information for the analysis of care quality.
Palabras clave : End of life; Quality; Narrative; Terminal patient; Bioethics.