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Open Access Research article

Dying, death and bereavement: a qualitative study of the views of carers of people with heart failure in the UK

Neil Small1*, Sarah Barnes2, Merryn Gott3, Sheila Payne4, Chris Parker5, David Seamark6 and Salah Gariballa7

Author Affiliations

1 School of Health Studies, University of Bradford, 25 Trinity Road, Bradford, BD5 0BB, UK

2 Section of Public Health, School of Health and Related Research, University of Sheffield, Regent Court, Regent Street, Sheffield, S1 4DA, UK

3 Sheffield Institute for Studies on Ageing, University of Sheffield, Elmfield, Northumberland Road, Sheffield, S10 2TU, UK

4 International Observatory on End of Life Care, Division of Health Research, University of Lancaster, Bowland Tower East, Lancaster, LA1 4YT, UK

5 Nottinghamshire County Teaching PCT, Birch House, Mansfield NG21 0HJ, UK

6 The Peninsula Medical School, University of Exeter, The John Bull Building, Tamar Science Park, Research Way, Plymouth, PL6 8BU, UK

7 Faculty of Medicine and Health Sciences, United Arab Emirates University PO Box 17666, Al-Ain, UAE Faculty of Medicine, UAE University, Al Ain, United Arab Emirates

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BMC Palliative Care 2009, 8:6  doi:10.1186/1472-684X-8-6

Published: 16 June 2009

Abstract

Background

This paper explores carers' views of dying, death and bereavement for family members who had recently died with heart failure adding to a growing literature on end of life experiences for people with conditions other than cancer.

Methods

Twenty interviews were conducted with bereaved carers of older people with heart failure (HF) who had been participating in a longitudinal study. Carers were approached in writing 3 months after the death. Interviews were transcribed verbatim and analysed thematically with the assistance of NUD*IST.

Results

Findings were grouped into three time periods: prior to death; the death itself and bereavement. Most carers found discussions about end of life with their family member prior to death difficult. Dissatisfaction with the manner of the death was focused around hospital care, particularly what they believed to be futile treatments. In contrast deaths in the home were considered 'good'. Carers adopted a range of coping strategies to deal with grief including 'using their faith' and 'busying themselves' with practicalities. There was some satisfaction with services accessed during the bereavement period although only a small number had taken up counselling.

Discussion

Our findings suggest that an absence of discussion about end of life care wishes with family members or health professionals is a barrier to advance care planning. Carers' perceptions about prioritising making the dying person comfortable can be in conflict with doctors' decisions to treat. Whilst carers report a range of strategies adopted in response to bereavement there is a need for continued support for vulnerable carers after the death of the person with HF.