An uncertain future : The unchanging views of care home residents about living and dying

Abstract

BACKGROUND: Older people living in a care home have a limited life expectancy, and care homes are an important setting for end-of-life care provision. AIM: This research aimed to explore the views, experiences and expectations of end-of-life care among care home residents to understand if key events or living in a residential environment influenced their views. DESIGN: The research used a prospective design. The paper draws on the qualitative interviews of 63 care home residents who were interviewed up to three times over a year. This was a sub-sample of the larger data set of 121 care home residents. Setting/Participants: The residents were recruited from six care homes (providing personal care with no on-site nursing) in the UK. Results: Four main themes were identified; Living in the Past, Living in the Present, Thinking about the Future and Actively Engaged with planning the future. Many residents said they had not spoken to the care staff about end-of-life care; many assumed their family or General Practitioner would take responsibility. CONCLUSIONS: Core to the older person's ability to discuss end-of-life care is their acceptance of being in a care home, the involvement of family members in making decisions and the extent to which they believed they could influence decision making within their everyday lives. Advance care plans should document ongoing dialogue. These findings can inform how primary health and palliative care services introduce, discuss and tailor existing frameworks and programmes of end-of-life care.