Lucy Ellen Selman1,2, Barbara A Daveson1, Melinda Smith1, Bridget Johnston3, Karen Ryan4, R Sean Morrison5, Caty Pannell1, Regina McQuillan6, Suzanne de Wolf-Linder1, Steven Z Pantilat7, Lara Klass1, Diane Meier5, Charles Normand3, Irene J Higginson1. 1. Department of Palliative Care, Policy and Rehabilitation, King's College London, Cicely Saunders Institute, London SE5 9PJ, UK. 2. Bristol Randomised Controlled Trials Collaboration, School of Social and Community Medicine, University of Bristol, Bristol BS8 2PS, UK. 3. Centre of Health Policy and Management School of Medicine, Trinity College, University of Dublin, Dublin, Ireland. 4. Mater Misericordiae University Hospital, Dublin, Ireland. 5. Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA. 6. Beaumont Hospital, Dublin, Ireland. 7. School of Medicine, University of California San Francisco, San Francisco, CA, USA.
Abstract
Background: patient empowerment, through which patients become self-determining agents with some control over their health and healthcare, is a common theme across health policies globally. Most care for older people is in the acute setting, but there is little evidence to inform the delivery of empowering hospital care. Objective: we aimed to explore challenges to and facilitators of empowerment among older people with advanced disease in hospital, and the impact of palliative care. Methods: we conducted an ethnography in six hospitals in England, Ireland and the USA. The ethnography involved: interviews with patients aged ≥65, informal caregivers, specialist palliative care (SPC) staff and other clinicians who cared for older adults with advanced disease, and fieldwork. Data were analysed using directed thematic analysis. Results: analysis of 91 interviews and 340 h of observational data revealed substantial challenges to empowerment: poor communication and information provision, combined with routinised and fragmented inpatient care, restricted patients' self-efficacy, self-management, choice and decision-making. Information and knowledge were often necessary for empowerment, but not sufficient: empowerment depended on patient-centredness being enacted at an organisational and staff level. SPC facilitated empowerment by prioritising patient-centred care, tailored communication and information provision, and the support of other clinicians. Conclusions: empowering older people in the acute setting requires changes throughout the health system. Facilitators of empowerment include excellent staff-patient communication, patient-centred, relational care, an organisational focus on patient experience rather than throughput, and appropriate access to SPC. Findings have relevance for many high- and middle-income countries with a growing population of older patients with advanced disease.
Background: patient empowerment, through which patients become self-determining agents with some control over their health and healthcare, is a common theme across health policies globally. Most care for older people is in the acute setting, but there is little evidence to inform the delivery of empowering hospital care. Objective: we aimed to explore challenges to and facilitators of empowerment among older people with advanced disease in hospital, and the impact of palliative care. Methods: we conducted an ethnography in six hospitals in England, Ireland and the USA. The ethnography involved: interviews with patients aged ≥65, informal caregivers, specialist palliative care (SPC) staff and other clinicians who cared for older adults with advanced disease, and fieldwork. Data were analysed using directed thematic analysis. Results: analysis of 91 interviews and 340 h of observational data revealed substantial challenges to empowerment: poor communication and information provision, combined with routinised and fragmented inpatient care, restricted patients' self-efficacy, self-management, choice and decision-making. Information and knowledge were often necessary for empowerment, but not sufficient: empowerment depended on patient-centredness being enacted at an organisational and staff level. SPC facilitated empowerment by prioritising patient-centred care, tailored communication and information provision, and the support of other clinicians. Conclusions: empowering older people in the acute setting requires changes throughout the health system. Facilitators of empowerment include excellent staff-patient communication, patient-centred, relational care, an organisational focus on patient experience rather than throughput, and appropriate access to SPC. Findings have relevance for many high- and middle-income countries with a growing population of older patients with advanced disease.
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