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.
Context. End-of-life care in nursing homes (NHs) needs improvement. We carried out a study in 29 NHs in the Lombardy Region (Italy). Objectives. The objective of this study was to compare end-of-life care in NH residents with advanced dementia before and after an educational intervention aimed to improving palliative care. Methods. The intervention consisted of a seven-hour lecture, followed by two 3-hour meetings consisting of case discussions. The intervention was held in each NH and well attended by NH staff. This multicenter, comparative, observational study included up to 20 residents with advanced dementia from each NH: the last 10 who died before the intervention (preintervention group, 245 residents) and the first 10 who died at least three months after the intervention (postintervention group, 237 residents). Data for these residents were collected from records for 60 days and seven days before death. Results. The use of ''comfort hydration'' (<1000 mL/day subcutaneously) tended to increase from 16.9% to 26.8% in the postintervention group. The number of residents receiving a palliative approach for nutrition and hydration increased, though not significantly, from 24% preintervention to 31.5% postintervention. On the other hand, the proportion of tube-fed residents and residents receiving intravenous hydration decreased from 15.5% to 10.5%, and from 52% to 42%, respectively. Cardiopulmonary resuscitations decreased also from 52/245 (21%) to 18/237 (7.6%) cases (P ¼ 0.002). Conclusion. The short educational intervention modified some practices relevant to the quality of end-of-life care of advanced dementia patients in NHs, possibly raising and reinforcing beliefs and attitudes already largely present. J Pain Symptom Manage 2019;57:93e99.
Background With a growing nursing home population suffering from chronic progressive illnesses and evolving patterns of comorbidities, end‐of‐life communication takes on a critical role to enable healthcare professionals to gather information about the resident’s wishes for care at the end‐of‐life and organise the care plan accordingly. Aim To explore nurses’ perspective about the process by which end‐of‐life communication impacts on the goal of end‐of‐life care in nursing home residents. Design A qualitative descriptive research design based on thematic analysis was performed. Fourteen nurses involved in the care of residents during their last week of life were recruited across 13 Italian nursing homes and accounted for 34 semi‐structured interviews. A combined approach of analysis that incorporated a data‐driven inductive approach and a theory‐driven one was adopted. Results Twelve themes described how end‐of‐life communication may contribute to adjust the care plan in nursing home according to the nurses’ perspective. Five antecedents (i.e. life crisis or transitions, patient‐centered environment, arising the question of possible dying, quality of relationships and culture of care) influenced the establishment and quality of communication, and five attributes depicted the characteristics and potential mechanisms of end‐of‐life communication (i.e. healthcare professional‐resident and healthcare professional‐family carers communication, knowledge of family carers’ preferences, knowledge of residents’ preferences, family carers and residents understanding, and shared decision‐making), while curative‐oriented and palliative‐oriented care goals emerged as consequences. Conclusion This study provides insight into the nursing perspective of end‐of‐life communication between healthcare professionals and bereaved family carers of nursing home residents. Several factors influenced the occurrence and quality of end‐of‐life communication, which contributed to the transition towards palliative‐oriented care by using and improving knowledge about family cares’ and resident’s preferences for end‐of‐life care, promoting family carers and residents understanding about prognosis and treatments available, and fostering shared decision‐making.
Background: Clear communication about a person's poor prognosis and limited treatment choices improves the quality of end-of-life care. Aims: To investigate how end-of-life communication may contribute to palliative-oriented care at the end-of-life in nursing homes according to both families' and nurses' perspective. Secondly, to identify the contextual factors internal to the nursing home that may influence the timing and quality of communication. Thirdly, to confirm the foundations for a first theory of end-of-life communication. Method: This study is a descriptive two-tailed embedded multiple-case study. A secondary analysis of 23 family carer-nurse paired interviews was performed. Findings: Several contextual factors influenced the timing and quality of communication that, in turn, impacted end-of-life care by promoting family understanding, fostering shared decision-making between healthcare professionals and resident/family carers, and improving the knowledge of residents' and family carers' preferences (ie drivers of transition towards palliative-oriented care). Family carers' preferences had the strongest influence in guiding the care approach, while residents' preferences were poorly known and had a limited impact on the end-of-life care goal. Complex and dynamic interactions within and between drivers and contextual factors emerged, providing preliminary evidence for a first end-of-life communication theory. Conclusion: Findings suggest the need to promote a familiar atmosphere and quality relationships, and improve the knowledge of a resident's preferences to ensure that end-of-life care is consistent with their desires.
The aim of the study was to describe omitted or delayed nursing care (i.e., missed nursing care [MNC]) in a sample of Italian nursing homes (NHs).Methods: Nurses from 50 NHs located in Northern Italy selected the 20 most dependent residents in their care and reported instances of MNC for three to five consecutive shifts. They described the type of MNC, its cause(s), management, recurrence, and severity of possible consequences for the resident. Information on the residents and the NH was also collected. The instances of MNC were classified as potentially avoidable/ preventable or not.Results: Overall, 266 (85.3%) of 312 nurses participated and 1000 residents were observed during 381 shifts (164 mornings, 164 afternoons, and 53 nights); 101 (38%) nurses reported 223 instances of MNC among 175 residents (17.5%). Ninety-seven omissions and 109 delays occurred during the day shift (56 omissions were delegated to the next shift). The most frequent MNC was drug administration (n = 71, 34.5%). In 24 (44.4%) of 54 instances of delayed drug administration, the delay was less than 30 minutes. Nurses rated approximately 20% of MNC (n = 41) as highly severe because of the discomfort caused to the resident, the clinical impact, or the repetitiveness of the situation. Nurses ascribed almost half of MNC (n = 100, 48.5%) to inadequate staffing, and they categorized 26 (11.6%) instances of MNC as unavoidable. Conclusions:The number of nurse-reported instances of MNC we reported was much lower than that previously collected with available instruments. Most MNC did not impact the comfort and safety of residents. A certain proportion of MNC was unavoidable.
Background: Most people with dementia transition into nursing homes as their disease progresses. Their family caregivers often continue to be involved in their relative’s care and experience high level of strain at the end of life. Aim: To gather and synthesize information on interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes and provide a set of recommendations for practice. Design: Mixed-Methods Systematic Review (PROSPERO no. CRD42020217854) with convergent integrated approach. Data sources: Five electronic databases were searched from inception in November 2020. Published qualitative, quantitative, and mixed-method studies of interventions to support family caregivers of people with advanced dementia at the end of life in nursing home were included. No language or temporal limits were applied. Results: In all, 11 studies met the inclusion criteria. Data synthesis resulted in three integrated findings: (i) healthcare professionals should engage family caregivers in ongoing dialog and provide adequate time and space for sensitive discussions; (ii) end-of-life discussions should be face-to-face and supported by written information whose timing of supply may vary according to family caregivers’ preferences and the organizational policies and cultural context; and (iii) family caregivers should be provided structured psychoeducational programs tailored to their specific needs and/or regular family meetings about dementia care at the end of life. Conclusion: The findings provide useful information on which interventions may benefit family caregivers of people with advanced dementia at the end of life and where, when, and how they should be provided.
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