Effect of the Care Programme for the Last Days of Life (CAREFuL) on satisfaction with care as perceived by family caregivers and geriatric nurses. A qualitative implementation study.

Abstract

The CAREFuL programme based on the Liverpool Care Pathway showed improvements in end-of-life care for patients dying in acute geriatric hospital wards. Importantly, it did not show positive effects on families' satisfaction with care. To gain insight into reasons for absent improved families' satisfaction with care to make adaptations to CAREFuL. We planned a two-step implementation, this study reports the first step. We implemented CAREFuL as tested in the cluster RCT with extra attention to families' involvement, in 6 hospitals. We performed semi-structured interviews with family caregivers (n = 11) and geriatric nurses (n = 11) to ask about their experiences with CAREFuL. We used Nvivo12. This study showed overall positive experiences. Family caregivers were satisfied by seeing their relative being comfortable, and by knowing whom to go to. A shared care approach within the team made nurses comfortable for entering the room. However, families did not always know the rationale for specific actions (e.g. cessation of nutrition) and some wanted to be involved more in the care of their relative. They often had to take initiative for receiving information. Finally, supporting leaflets were not always given or were given without any explanation. We made adaptations to CAREFuL to improve families' satisfaction with care. A trigger sentence is added to support nurses in communicating with families. Professionals need to give a rationale for (not) doing specific actions. Leaflets can be used only as a support for direct communication. This adapted programme will be implemented in another 20 wards.