Iatrogenic suffering at the end of life: An ethnographic study

Abstract

Background: Across the developed West, a significant proportion of older people die in hospital It has been argued that an acute hospital setting is not well equipped to support dying well. A palliative approach, which involves recognising and alleviating suffering, might lead to improved quality of care. Yet suffering is an intangible and contested phenomenon and little is known about people’s actual experiences of suffering in this clinical setting. Aim: To examine the context of end-of-life care for older people in an acute hospital setting, particularly focusing on the experience of suffering. Design: An observational study, using an ethnographic approach. Data analysis was inductive and iterative. Reflexive analysis included observations and inferences from a participant-observer perspective. Over a period of 3 months in 2016, 186 h of observations of clinical care were carried out. Settings/participants: The study was carried out on a 30-bedded acute older peoples’ hospital ward in the United Kingdom. Participants included 11 patients and 33 members of staff and visitors. Results: Patient suffering was influenced by a range of factors. Delays in recognising and acknowledging dying often led to treatments that were burdensome or futile, exacerbating patient suffering. This was frequently associated with clinical decision-making that did not take into consideration long term concerns such as prognosis or quality of life. Environmental factors in the physical clinical setting such as noise and smell also exacerbated suffering. Finally, aspects of interpersonal interactions, such as paternalistic attitudes or ineffective communication, affected patient experience. Conclusion: Acute care for older people in hospital was shaped by an overarching ideology of rescue which predicted and dictated the process of care. Suffering was not restricted to the direct experiences of life-limiting illness but was also associated with the experience of receiving care in an acute hospital setting. Avoiding or minimising iatrogenic suffering is an essential component of compassionate care.