Patients’ and families’ perspectives of patient safety at the end of life: a video-reflexive ethnography study

Objective: The aim of this study was to investigate patients’ and families’ perspectives of safety and quality in the setting of a life-limiting illness.

Design: Data reported here were generated from a qualitative study using video-reflexive ethnographic methodology. Data were collected over 18 months and generated through participant observation, shadowing of clinicians, field-interviews and semi-structured interviews with patients and families.

Setting: The study was conducted at two hospital sites in Sydney, Australia and in patients’ homes.

Participants: Patients with an advanced life-limiting illness (n = 29) ranging in age between 27 and 89 years and family members (n = 5) participated in the study.

Results: Patient safety remains important to dying patients and families. For dying people, iatrogenic harm is not regarded as ‘one off’ incidents. Rather, harm is experienced as a result of an unfolding series of negative events. Critically, iatrogenic harm is emotional, social and spiritual and not solely technical–clinical misadventure and is inextricably linked with feeling unsafe. Thus, patient safety extends beyond narrowly defined technical–clinical parameters to include interpersonal safety.

Conclusions: Current approaches to patient safety do not address fully the needs of dying patients and their families. Patients and their families regard poor communication with and by health professionals to be harmful in and of itself.