How to improve dealing with desire to die in hospice volunteers and informal caregivers.

Abstract

Objectives: Up to 40% of severely ill patients report at least an occasional desire to die, opening up not only to professionals but also to hospice volunteers and patients' informal caregivers. Based on an existing, evaluated 2-day desire to die training for professionals, we intend to adapt the training for hospice volunteers and informal caregivers, both face-to-face and online and provide a preliminary evaluation.

Methods: Multi-method approach to (1) assess needs regarding content and form for (online) trainings for hospice volunteers and formats for informal care givers using online focus groups and (additional) individual interviews, (2) adapt existing training materials for both groups accompanied by expert discussion, and (3) pilot and evaluate the (online) trainings and formats through (online) surveys.

Results: In an online focus group with n = 4 informal caregivers and n = 2 additional online interviews, participants reported wishes for form (e.g. short formats in plain language) and content (e.g. needs in relation to health professional and patient). The n = 6 hospice volunteers also wished for form (e.g. plain language) and content (e.g. volunteer role). Results were implemented in (a) a volunteer adaptation of the training, e.g. with target-group-specific case studies and (b) the development of an online format for informal caregivers. For evaluation, we conducted (a) 2 face-to-face trainings for hospice volunteers (n = 14 and n = 20) and (b) 2 online formats for informal caregivers (n = 7 and n = 13). Both groups benefited strongly from participation.

Significance of results: Hospice volunteers and informal caregivers deal with patients' desires to die - often without being adequately prepared. Through (online) trainings and formats, their awareness and self-confidence regarding desire to die can increase. It is therefore of high relevance to meet the demand for easily accessible and target group specific (online) trainings on dealing with desire to die.