Perceived Gaps Between Wishes and Practice in End-of-Life Sedation for Psycho-Existential Suffering.

Abstract

Continuous deep sedation (CDS) for psycho-existential suffering is controversial and often regarded as a last-resort option at the end of life. The frequency with which patients desire CDS for this reason remains unclear. This study aimed to explore the prevalence of patients with cancer under palliative care in Japan who expressed a desire for CDS to alleviate psycho-existential suffering. It also sought to understand their condition at the time of expressing this desire, underlying suffering, and alternative interventions. This nationwide questionnaire survey involved all certified hospices and palliative care units (PCUs) across Japan. Participants answered a questionnaire regarding the administration of and expressed desire for CDS to relieve psycho-existential suffering, along with patients' status when such a desire was expressed. Data from 306 facilities were analyzed. Approximately 0.2% of deceased patients received CDS solely for psycho-existential suffering, while 2% expressed a desire for it during the two-year study period. While only one-quarter of PCUs reported administering CDS for this purpose, three-quarters reported patients expressing a desire for it, with variation in the proportion across facilities. Patients' desire for CDS was frequently associated with existential suffering and often associated with the wish for an early death. A significant gap existed between patients' desire for CDS due to psycho-existential suffering and its actual implementation. Palliative care providers face the critical challenge of understanding patients' complex needs, providing appropriate care and support, and guiding ethical decisions for patients, families, and medical teams.