Bereaved carers' accounts of the end of life and the role of care providers in a 'good death': A qualitative study

Palliat Med. 2015 Oct;29(9):834-41. doi: 10.1177/0269216315584865. Epub 2015 May 5.

Abstract

Background: The way that people die is particularly important to those who are left behind and this memory is not limited to the moment of death, but encompasses the entire end-of-life phase. While a number of attributes for a 'good death' have been identified, less is known about how care providers feature within these conceptualisations.

Aim: The aim of this article is to describe the end-of-life experience from the point of view of bereaved family carers with particular reference to the role that care providers play in shaping this experience.

Design: Qualitative interviews carried out as part of a study to evaluate a new rapid response hospice at home service. An interpretive thematic analysis using the Framework approach was used to examine how family carers judge a 'good death' and how care providers feature in the attributes of a 'good death'.

Participants and setting: A total of 44 interviews with bereaved family carers from a hospice population in the South East of England.

Results: Six themes were identified as attributes of a good death in which care providers had a key role: social engagement and connection to identity, care provider characteristics and actions, carer's confidence and ability to care, preparation and awareness of death, presentation of the patient at death and support after death for protected grieving.

Conclusion: Care providers played a much wider role in social aspects of care at the end of life than previously considered.

Keywords: End-of-life care; care providers; carers; good death; health services research; hospices; qualitative research.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Attitude to Death*
  • Bereavement*
  • Caregivers / psychology*
  • Clinical Competence
  • Communication
  • England
  • Family / psychology
  • Female
  • Home Care Services / standards
  • Hospice Care / standards
  • Humans
  • Male
  • Middle Aged
  • Palliative Care / standards
  • Professional-Family Relations
  • Professional-Patient Relations
  • Qualitative Research
  • Social Support
  • Terminal Care / standards*

Associated data

  • ISRCTN/ISRCTN32119670