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.
Background: The aims of this study were to gain a better understanding of how bereaved family members perceive the quality of EOL care by comparing their satisfaction with quality of end-of-life care across four different settings and by additionally examining the extent to which demographic characteristics and psychological variables (resilience, optimism, grief) explain variation in satisfaction. Methods: A cross-sectional mail-out survey was conducted of bereaved family members of patients who had died in extended care units (n = 63), intensive care units (n = 30), medical care units (n = 140) and palliative care units (n = 155). 1254 death records were screened and 712 bereaved family caregivers were identified as eligible, of which 558 (who were initially contacted by mail and then followed up by phone) agreed to receive a questionnaire and 388 returned a completed questionnaire (response rate of 70%). Measures included satisfaction with end-of-life care (CANHELP-Canadian Health Care Evaluation Project -family caregiver bereavement version; scores range from 0 = not at all satisfied to 5 = completely satisfied), grief (Texas Revised Inventory of Grief (TRIG)), optimism (Life Orientation Test -Revised) and resilience (The Resilience Scale). ANCOVA and multivariate linear regression were used to analyze the data. Results: Family members experienced significantly lower satisfaction in MCU (mean = 3.69) relative to other settings (means of 3.90 [MCU], 4.14 [ICU], and 4.00 [PCU]; F (3371) = 8.30, p = .000). Statistically significant differences were also observed for CANHELP subscales of "doctor and nurse care", "illness management", "health services" and "communication". The regression model explained 18.9% of the variance in the CANHELP total scale, and between 11.8% and 27.8% of the variance in the subscales. Explained variance in the CANHELP total score was attributable to the setting of care and psychological characteristics of family members (44%), in particular resilience. Conclusion: Findings suggest room for improvement across all settings of care, but improving quality in acute care and palliative care should be a priority. Resiliency appears to be an important psychological characteristic in influencing how family members appraise care quality and point to possible sites for targeted intervention.
INTRODUCTION A well-functioning interprofessional team has been identified as a central requirement for high quality palliative care. In particular, interprofessional communication and teamwork have been directly linked to patient and family health outcomes. However, evidence suggests that substandard communication and team collaboration between healthcare providers is a persistent challenge that is heightened during palliative care in in-patient settings. This research examined the mechanisms of communication that shaped and impeded interprofessional team practice and coordinated palliative care on acute medical and long-term care units.
Educational preparation of health professionals for Palliative and End of Life Care (PEOLC) is inadequate, and nurses are no exception. In 2004, the Canadian Association of Schools of Nursing struck a Task Force to develop PEOLC competencies to address this issue. The development of national PEOLC nursing competencies involved a multi-step, emergent, interactive, and iterative process. An overarching principle guiding this process was building national consensus about the essential PEOLC specific competencies for nurses among experts in this field while simultaneously generating, revising, and refining them. There have been three stages in this iterative, multi-step process: 1) Generating a preliminary set of competencies, 2) Building a national consensus among educators and experts in the field on PEOLC specific competencies for nurses, and 3) Refining the consensus based competencies for curriculum development. Ongoing follow up work for this project is focusing on the integration of these competencies into nursing curricula.
Quality improvement is an essential feature of the ongoing development of palliative care programs. Little has been written, however, about using quality improvement as a strategy to introduce research concepts to staff and administrators for the purpose of enhancing research readiness in healthcare settings. This article describes such an endeavor. The authors discuss two quality improvement initiatives undertaken by a palliative care program in Canada. These two examples demonstrate how the quality improvement process acted as a catalyst to enhance research readiness.
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