Pioneering study into older people’s expectations of dying

Academics at the University of Hertfordshire are carrying out one of the first studies of its kind into the experiences of older people in care homes as they draw close to death.

Dr Claire Goodman at the University’s Centre for Research in Primary and Community Care (CRIPACC) is leading a research project in partnership with East and North Hertfordshire Primary Care Trust funded by the NHS National Institute of Health Research (NIHR) (www.nihr.ac.uk), which will investigate the experience of residents in seven care homes in three Primary Care Trusts in the East of England in order to establish their experiences and expectations of dying.

“Care homes are places where older people both live and die,” said Dr Goodman. “How these individuals engage with the anticipation of dying and if living in a care home affects their decisions and need for support is largely unknown at the moment.”

In this two year project, Dr Goodman and her collaborators will look at how the care home environment influences the views, experiences and expectations of end of life care in care homes; they will also seek to understand the characteristics, expectations and needs of older people in care homes who are in the last years of their lives, so that they can inform recent initiatives to improve palliative care for older people in care homes, treatments and interventions to achieve good end of life outcomes.

They will gather this information through a study of the health and function of residents in the seven selected care homes and through interviews with staff and with a group of older people who will be interviewed about their thoughts and wishes about dying.

“This study, by focusing on older people who become increasingly frail, because of a steadily diminishing ability to cope with inevitable but unpredictable episodes of ill health, recognises that these older people may have very different experiences and expectations about dying,” said Dr Goodman. “It will help improve access to timely support for this vulnerable population.”

Collaborators on this project are: University of Cambridge, East of England Strategic Health Authority, University College Medical School, Lancaster University and King’s College London.

Although not linked, this project follows on from a current NIHR-funded project which investigates ‘Changing Practice in Dementia Care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life’ in which Dr Goodman is also involved.