Good concordance between patients and their non-professional carers about factors associated with a 'good death' and other important end-of-life decisions

BMJ Support Palliat Care. 2019 Sep;9(3):340-345. doi: 10.1136/bmjspcare-2015-001085. Epub 2016 May 17.

Abstract

Objectives: The aim of this study was to investigate concordance between patients and non-professional carers about factors associated with a 'good death' and other end-of-life decisions.

Methods: Patients completed a questionnaire about end-of-life care issues, and were asked to rank the importance of factors linked to a 'good death'. Carers also completed a questionnaire about end-of-life care issues relating to the patient, and whether or not they agreed with those choices (ie, medical treatments, PPD). Carers were also asked to rank the importance of factors linked to a 'good death' to the patient, and to them personally at that point in time.

Results: Only 69% of patients stated they had discussed their preferences for end-of-life care with their respective carer. The rankings were similar for the patient and the carer's views of what was important for the patient, although the patients ranked 'to be involved in decisions about my care' as less important than the carers, while the carers ranked 'to have sorted out my personal affairs' as less important than the patients.

Conclusions: When discussions around end-of-life choices do occur, carers generally appear to agree with the patients' preferences around end-of-life treatment, and preferred place of death.

Keywords: Cancer; Carer; End-of-life care; Good death; Patient; Terminal care.

MeSH terms

  • Aged
  • Attitude to Death*
  • Caregivers / psychology*
  • Decision Making
  • Female
  • Humans
  • Male
  • Middle Aged
  • Patient Preference / psychology*
  • Surveys and Questionnaires
  • Terminal Care / psychology*