Good end-of-life care in nursing home according to the family carers’ perspective: A systematic review of qualitative findings

Abstract

Background: Nursing homes are becoming a common site where delivering end-of-life care for older adults. They often represent the junction between the curative and the palliative phase. Aim: To identify the elements that nursing home residents’ family carers perceive as good end-of-life care and develop a conceptual model of good end-of-life care according to the family perspective. Design: Systematic review (PROSPERO no. 95581) with meta-aggregation method. Data Sources: Five electronic databases were searched from inception between April and May 2018. Published qualitative studies (and mixed-method designs) of end-of-life care experience of nursing home family carers whose relative was dead or at the end-of-life were included. No language or temporal limits were applied. Results: In all, 18 studies met inclusion criteria. A ‘life crisis’ often resulted in a changed need of care, and the transition towards palliative care was sustained by a ‘patient-centered environment’. Family carers described good end-of-life care as providing resident basic care and spiritual support; recognizing and treating symptoms; assuring continuity in care; respecting resident’s end-of-life wishes; offering environmental, emotional and psychosocial support; keeping family informed; promoting family understanding; and establishing a partnership with family carers by involving and guiding them in a shared decision-making. These elements improved the quality of end-of-life of both residents and their family, thus suggesting a common ground between good end-of-life care and palliative care. Conclusion: The findings provide a family-driven framework to guide a sensitive and compassionate transition towards palliative care in nursing home.

Palliative care delivery in residential aged care: Bereaved family member experiences of the Supportive Hospice Aged Residential Exchange (SHARE) intervention

“…Interviews after a year of SHARE indicated that more communication and collaboration between Hospice and RAC facilities led to positive responses by families regarding the quality of care for their relatives (4,8). Re ecting previous research (8) a poor relationship between hospice and RAC facilities was a source of family concern before SHARE.…”

“…Palliative care is de ned as care for a person with a life-limiting illness that aims to optimise the quality of life for the person, as well as support their whānau (family) caregivers both during illness and after death (2). Palliative care is one component of an overall health care plan and may be more needed than a purely treatment focused plan at the end-of-life (8). Palliative care is delivered by both generalists as a part of standard clinical practice by any healthcare professional and by specialist palliative care professionals who have undergone specialist training in palliative care (2).…”

Palliative care delivery in residential aged care: bereaved family member experiences of the Supportive Hospice Aged Residential Exchange (SHARE) intervention

“…Eight interviews with bereaved family members (7 women, 1 man) were conducted before SHARE. Interviewees were most often between the ages of 70-79 and the majority [8] identified as NZ European and reported Christianity as their religion [4]. Five of the decedent residents had diagnoses of dementia (Table 1).…”

“…Palliative care is defined as care for a person with a life-limiting illness that aims to optimise the quality of life for the person, as well as support their whānau (family) caregivers both during illness and after death [2]. Palliative care is one component of an overall health care plan and may be more needed than a purely treatment focused plan at the end-of-life [8]. Palliative care is delivered by both generalists as a part of standard clinical practice by any healthcare professional and by specialist palliative care professionals who have undergone specialist training in palliative care [2].…”

Patients' spirituality perspectives at the end of life: a qualitative evidence synthesis

“…Spirituality at the end of life is important to patients,4 5 and family carers,6 and has a positive association with patients’ quality of life, physical health and social well-being 2 7. Patients report being comfortable with healthcare providers inquiring about spiritual needs8; however, spiritual and social issues are discussed less often by healthcare providers than other end-of-life issues such as physical symptoms 9.…”