The influence of care place and diagnosis on care communication at the end of life: bereaved family members’ perspective

Abstract

Objective To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members’ perspective. Method A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20−90 years old, 70% women) of people who died in hospital was employed to meet the study aim. Results Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40). Significance of results This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members’ reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.

Reimagining Family Involvement in Residential Long-Term Care

“…4,54,55 However, a study from Sweden suggested that when compared to other end-oflife care settings, those with relatives in NHs are less likely to report that their relative was treated with dignity or respect and more likely to indicate "unwanted" decisions were made during their relative's end-of-life care. 56 Taking part in care planning during a relative's end of life in RLTC also appears to enhance family members' feelings of involvement during this health transition. 57 An analysis of family involvement during a relative's final month of life in RLTC found that the majority of family members were involved with monitoring and managing their relative's care as well as helping with meals, whereas 40% provided personal care.…”

Patients' experiences and perceptions of dignity in end‐of‐life care in emergency departments: A qualitative study

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