Bereaved Family Members’ assessments of the quality of End-Of-Life Care: What is Important?

Abstract

Families of patients are well poised to comment on the end-of-life (EOL) care received by those patients and can provide feedback to care providers and decision makers. To better understand family-member evaluations of the quality of in-patient EOL care, this study draws on qualitative interview data (n=24) to identify core aspects of EOL care that are important for family members. Based on this analysis, a conceptual framework of family members’ assessments of their experiences with EOL health care services is developed. Findings suggest the need to distinguish between perceived substantive or tangible features of received care, interpretations of the causes and symbolic meanings of that care, and personal and affective outcomes. Practitioners are encouraged to reflect on how behaviours and communications may be interpreted by families. Attention also needs to be given to the changes in practice and organizational decision making that can facilitate more positive experiences for families and patients.

Bereaved family member perceptions of patient-focused family-centred care during the last 30 days of life using a mortality follow-back survey: does location matter?

“…Research suggests healthcare providers and family members may perceive emotional and spiritual support differently. Health service providers tend to view the offer of support in the form of relational and active-based care whereas family and caregivers view supportive care as having conversations and shows of regard [35,48]. …”

Family members’ perceptions of end-of-life care across diverse locations of care

“…The comments made by families also highlight one of the key complexities of family support—how families choose to interpret what care their loved one is or is not given [7]. Many families will interpret positive or negative experiences of caring “for” as the more personal caring “about” the person—something that many caregivers do not keep uppermost in mind when they are dealing with patients and families.…”

“…In turn, questionnaires to assess the dying experience in bereaved relatives have been validated [5] and used to measure care [6]. A recent review of the literature of family satisfaction with EOL care [7] has identified key domains of EOL care: Patient comfort and symptom management, emotional support, information and education; communication and competence have been identified by quantitative studies. Qualitative studies have revealed more complex indicators such as care provider response and time with patient; providers’ interactional approach; service coordination, consistency and flexibility; personalized and individual care; and the facility environment.…”

Family caregiver learning—how family caregivers learn to provide care at the end of life: A qualitative secondary analysis of four datasets

“…The third dataset was from a qualitative study of 24 bereaved family caregivers whose family member died in an inpatient setting. 48,49 Participants were recruited from a larger sample of 388 respondents to a quantitative, mailed questionnaire, which examined family members' perceptions of the quality of palliative care received in an inpatient setting. 50 The 24 participants were asked in interviews to describe and evaluate their experience with the palliative care received by the deceased person.…”