Diagnosis, prognosis and awareness of dying in nursing homes: towards the Gold Standard?

Abstract

In Western society and increasingly elsewhere, death has become medicalised and 'hospitalised' even when people are enduring deteriorating terminal conditions such as dementia and heart failure. In an attempt to rationalise and dignify the place and manner of death, evidence is emerging that the adoption of end-of-life care pathways and models can improve the experience of the end-of-life care across a range of care settings. Each of these demands skills and knowledge in the assessment and prediction of the dying trajectory. In this study, we report complexities facing relatives, residents and nursing home staff in the awareness, diagnosis and prediction of the dying trajectory. Data were collected and analysed within a broadly qualitative methodology. The contexts were two nursing homes in the Greater Manchester area, each at different stages of implementing 'Gold Standards Framework' approaches to planning end-of-life care with residents and their relatives. From 2008 to 2011 and with appropriate consent, data were collected by a mixture of interviews and participant observation with residents, relatives and staff. Appropriate ethics approvals were sought and given. Key emerging themes were diagnosis and awareness of dying in which there is no substitute for experience. Significant resource is needed to engage staff, residents and relatives/carers with the idea of advance care planning. Talking to residents and relatives about their feelings and wishes for care at the end of life remains especially difficult, but education and training in key skills and knowledge can engender confidence. Challenges include diagnosing and predicting dying trajectories. Advance care planning can reduce the distress from and number of inappropriate hospital admissions, but requires determination and consistent application of the approach. This can be very challenging in the face of staff rotation and the unpredictability both of the dying trajectory and the decision-making of some out of hours medical staff.