Abstract

Background: Transitions in care settings are associated with poor continuity and quality of care. At the end of life, health and social care aims to optimise quality of life, yet existing evidence suggests that movements between place of care in the months before death may be frequent, and result in little improvement in pain control or wellbeing.

Aims: To explore the causes and consequences of transitions in care settings from the perspective of people living with heart failure, stroke and lung cancer. 

Study design: Qualitative in-depth interviews, North West England

Methods: Participants aged over 75 years were identified by hospital teams, where the responsible clinician would not be surprised if the patient were to die within 12 months. Sampling was purposive to include experiences from a range of settings and socioeconomic backgrounds. Each participant completed a single in-depth interview exploring understanding of how moving between care settings affected their household, including influence on health status, quality of life, symptom control and satisfaction with care. Data were analysed using a Framework approach.

Findings: To date, interviews with people with heart failure and lung cancer describe frequent transitions with families shouldering the emotional, practical and financial burdens. Levels of perceived control or choice over the nature and location of care are low. Contrasts are emerging between the conditions in a number of areas, such as trust in GPs, which is particularly low amongst participants with heart failure.