Dr Lucy Selman is Cicely Saunders International Faculty Scholar in the Department of Palliative Care, Policy, and Rehabilitation at King’s College London, and a Research Fellow at the University of Bristol. In this blog Lucy discusses her recent Age and Ageing paper on an international study of patient empowerment in hospitals in London, Dublin and San Francisco (part of BuildCARE, a project led by Prof. Irene J. Higginson at King’s College London).
Empowered patients adopt healthier behaviours, use health services more cost-effectively, and experience better quality of life than patients who feel they are passive recipients of healthcare. Across the developed world, policy-makers are waking up to the benefits for patients and health services when people are encouraged to engage with clinicians, make decisions and manage their illness in a way that reflects their own values.
Until now, research has focused on patient empowerment in the community. But older people, who often have complex health needs, are mainly cared for in hospitals. We wanted to explore challenges to patient empowerment in hospitals in England, Ireland and the USA and identify how hospital care can empower patients. So we conducted an ethnography which involved interviewing older patients with advanced disease and their family caregivers, and healthcare professionals caring for patients with advanced disease in hospital. We also observed interactions in hospital wards and collected artefacts, such as information leaflets designed for hospital users.
Many things were restricting patients’ control and decision-making: for example, poor communication and information provision, and badly coordinated care which was governed more by hospital routines than patient need. And while many patients needed information about their health and treatment to feel empowered, this wasn’t sufficient: it all depended on the hospital and its staff being patient-centred. Hospital palliative care teams facilitated empowerment by prioritising care and communication tailored to the individual patient and their family, and supporting other clinicians.
To bring patient-centred, empowering care to more elderly patients in hospitals around the world will require changes throughout the health system. We hope our findings will provide a template for making it happen.