49. Dying at home: Why is it not happening? An exploratory study of community nurses views on factors that influence home death (121)

Barbara Jack, Professor Of Nursing, Faculty of Health, Edge Hill University, Liverpool, United Kingdom
Co authors: Mary O' Brien
jackb@edgehill.ac.uk

Abstract:

Background:

It is estimated that between 50-75% of those with cancer and over 50% of adults (if diagnosed with a terminal illness) would prefer to die at home (Higginson 2003). Although UK government initiatives such as the introduction of the End of Life Care Programme promote patients’ choice to die at home, approximately 26% of terminally ill patients are not dying at home (Davies et al 2006). The gap between patient preferences and their actual place of death remains poorly understood (Gomes and Higginson 2006). Local issues including out of hours services, cancer diagnosis and families’ ability to provide care are influencing factors (Davies et al 2006). The study’s aim was to explore community nurses’ views on the factors that influence this change in decision from a preferred home death.

Methodology:

A qualitative methodology using focus group interviews was adopted for the study. Focus groups enabling group discussion and interaction, allow participants to use their own frames of reference and identify topics. A purposive sample of community Macmillan nurses and district nurses from two primary care trusts in the north west of England were invited to participate. Nineteen nurses took part in two audio taped focus groups. Data were analysed for emerging themes using thematic analysis.

Results & discussion:

All respondents highlighted the ability of carers to cope as a major factor affecting whether patients with cancer were enabled to die at home. However, contributory factors were identified including: delays in provision of services, unrealistic expectations of community services by patients, carers and hospital staff, illness duration and patients’ perceptions of their carer’s abilities. This paper discusses the results and explores potential reasons for the findings.

Biography:

Professor Barbara Jack is an RGN, who completed her undergraduate studies at Swansea University and her postgraduate studies including her PhD at the University of Manchester. She was appointed as a senior lecturer in the Edge Hill University Faculty of Health in 1992 where she specialised in research methods. Following the completion of her PhD in 2001, “Evaluating the Impact of the Hospital Specialist Palliative Care Team”, she was seconded to the Marie Curie Palliative Care Institute Liverpool to undertake research in palliative care. This included evaluating the impact of the national End of Life initiative surrounding the Liverpool Care of the Dying Pathway. Her current research includes collaborative links with the Marie Curie Palliative Care Institute Liverpool on national projects including an action research project Modernising the Cancer Minimum Data Set. In 2006 Barbara established international research links with Hospice Africa Uganda and Edge Hill University and is currently evaluating the Impact of Nurses Prescribing Morphine and the Community Volunteer Programme.