Narrative Review: Clinical Implications and Assessment of Frailty in Patients With Advanced CKD.

Frailty is a multidimensional clinical syndrome characterized by low physical activity, reduced strength, accumulation of multiorgan deficits, decreased physiological reserve, and vulnerability to stressors. Frailty has key social, psychological, and cognitive implications. Frailty is accelerated by uremia, leading to a high prevalence of frailty in patients with advanced chronic kidney disease (CKD) and end-stage kidney disease (ESKD) as well as contributing to adverse outcomes in this patient population. Frailty assessment is not routine in patients with CKD; however, a number of validated clinical assessment tools can assist in prognostication. Frailty assessment in nephrology populations supports shared decision-making and advanced communication and should inform key medical transitions. Frailty screening and interventions in CKD or ESKD are a developing research priority with a rapidly expanding literature base.

Use of frailty assessment instruments in nephrology populations: a scoping review.

BACKGROUND: Frailty is a clinical syndrome of accelerated aging associated with adverse outcomes. Frailty is prevalent among patients with chronic kidney disease but is infrequently assessed in clinical settings, due to lack of consensus regarding frailty definitions and diagnostic tools. This study aimed to review the practice of frailty assessment in nephrology populations and evaluate the context and timing of frailty assessment. METHODS: The search included published reports of frailty assessment in patients with chronic kidney disease, undergoing dialysis or in receipt of a kidney transplant, published between January 2000 and November 2021. Medline, CINAHL, Embase, PsychINFO, PubMed and Cochrane Library databases were examined. A total of 164 articles were included for review. RESULTS: We found that studies were most frequently set within developed nations. Overall, 161 studies were frailty assessments conducted as part of an observational study design, and 3 within an interventional study. Studies favoured assessment of participants with chronic kidney disease (CKD) and transplant candidates. A total of 40 different frailty metrics were used. The most frequently utilised tool was the Fried frailty phenotype. Frailty prevalence varied across populations and research settings from 2.8% among participants with CKD to 82% among patients undergoing haemodialysis. Studies of frailty in conservatively managed populations were infrequent (N = 4). We verified that frailty predicts higher rates of adverse patient outcomes. There is sufficient literature to justify future meta-analyses. CONCLUSIONS: There is increasing recognition of frailty in nephrology populations and the value of assessment in informing prognostication and decision-making during transitions in care. The Fried frailty phenotype is the most frequently utilised assessment, reflecting the feasibility of incorporating objective measures of frailty and vulnerability into nephrology clinical assessment. Further research examining frailty in low and middle income countries as well as first nations people is required. Future work should focus on interventional strategies exploring frailty rehabilitation.

Post-death burial and funeral practices in rural Alberta.

BACKGROUND: Burial and funeral practices are important customary mortuary rituals, especially in rural areas as people are likely to have different values and interests than people who live in larger cities. However, little is known about rural post-death practices in Canada. AIMS: This review gathered information on funeral and burial practices in rural Alberta, a western Canadian province with a diverse rural population. METHODS: A literature review of community print sources, including obituaries and funeral home websites, was conducted for select representative rural communities. FINDINGS: This review found that cremations outnumber burials, and mortuary ceremonies more commonly occur in non-religious settings. Furthermore, personalised post-death rituals were identified as highly significant to rural people as they allow the dead to remain connected to their rural land, family and community. CONCLUSION: It is important to understand rural mortuary rituals to help prepare dying rural people and their families.

Frailty in chronic kidney disease: challenges in nephrology practice. A review of current literature.

Frailty is a multidimensional clinical syndrome characterised by low physical activity, reduced strength, accumulation of multi-organ deficits, decreased physiological reserve and vulnerability to stressors. Frailty pathogenesis and 'inflammageing' is augmented by uraemia, leading to a high prevalence of frailty potentially contributing to adverse outcomes in patients with advanced chronic kidney disease (CKD), including end-stage kidney disease (ESKD). The presence of frailty is a stronger predictor of CKD outcomes than estimated glomerular filtration rate and more aligned with dialysis outcomes than age. Frailty assessment should form part of routine assessment of patients with CKD and inform key medical transitions. Frailty screening and interventions in CKD/ESKD should be a research priority.

'Traversing difficult terrain'. Advance care planning in residential aged care through multidisciplinary case conferences: A qualitative interview study exploring the experiences of families, staff and health professionals.

BACKGROUND: Advance care planning improves the quality of end-of-life care for older persons in residential aged care; however, its uptake is low. Case conferencing facilitates advance care planning. AIM: To explore the experience of participating in advance care planning discussions facilitated through multidisciplinary case conferences from the perspectives of families, staff and health professionals. DESIGN: A qualitative study (February-July 2019) using semi-structured interviews. SETTING: Two residential aged care facilities in one Australian rural town. PARTICIPANTS: Fifteen informants [family (n = 4), staff (n = 5), health professionals (n = 6)] who had participated in advance care planning discussions facilitated through multidisciplinary case conferences. RESULTS: Advance care planning was like navigating an emotional landscape while facing the looming loss of a loved one. This emotional burden was exacerbated for substitute decision-makers, but made easier if the resident had capacity to be involved or had previously made their wishes clearly known. The 'conversation' was not a simple task, and required preparation time. Multidisciplinary case conferences facilitated informed decision-making and shared responsibility. Opportunity to consider all care options provided families with clarity, control and a sense of comfort. This enabled multiple stakeholders to bond and connect around the resident. CONCLUSION: While advance care planning is an important element of high quality care it involves significant emotional labour and burden for families, care staff and health professionals. It is not a simple administrative task to be completed, but a process that requires time and space for reflection and consensus-building to support well-considered decisions. Multidisciplinary case conferences support this process.

Funeral and interment practices of rural residents: A mixed methods study.

There are few studies on interment preferences and practices for people in remote and rural regions of developed countries. This mixed methods study in rural Australia collated data on funeral and interment practices with an ethnographic exploration of the post-death preferences of terminally-ill rural residents. In the region, between February 2015 and May 2016, 44% of decedents were cremated. Burial preferences reflected family traditions, generational connections to historic cemeteries, and the wish to instantiate belonging to people and place. Cremation provided the opportunity for ashes to be scattered at personally-significant places. Funeral planning was important for patients and family caregivers, and funerals are valued rural community rituals.

The impact of introducing Palliative Care Needs Rounds into rural residential aged care: A quasi-experimental study.

OBJECTIVE: This study examined the impact of introducing Palliative Care Needs Rounds (hereafter Needs Rounds) into residential aged care on hospitalisations (emergency department presentations, admissions and length of stay) and documentation of advance care plans. DESIGN: A quasi-experimental study. SETTING: Two residential aged care facilities in one rural town in the Snowy Monaro region of New South Wales, Australia. PARTICIPANTS: The intervention group consisted of all residents who died during the study period (April 2018-March 2019), and included a subgroup of decedents who were discussed in a Needs Round. The control cohort included all residents who died in the three-year period prior to introducing Needs Rounds (2015-2017). INTERVENTION: Needs Rounds are monthly onsite triage/risk stratification meetings where case-based education and staff support help to identify residents most at risk of dying without an adequate plan in place. Needs Rounds were attended by residential aged care staff and led by a palliative medicine physician. MAIN OUTCOME MEASURES: Decedents' hospitalisations (emergency department presentations, admissions and length of stay) in the last three months of life, place of death and documentation of advance care plans. RESULTS: Eleven Needs Rounds were conducted between April and September 2018. The number of documented advance care plans increased (P < .01). There were no statistically significant changes in hospitalisations or in-hospital deaths. CONCLUSION: Needs Rounds are an effective approach to increase the documentation of advance care plans within rural residential aged care. Further studies are required to explore the rural influence on outcomes including hospital transfers and preferred place of death.

The 'safe death': An ethnographic study exploring the perspectives of rural palliative care patients and family caregivers.

BACKGROUND: In rural settings, relationships between place and self are often stronger than for urban residents, so one may expect that rural people would view dying at home as a major feature of the 'good death'. AIM: To explore the concept of the 'good death' articulated by rural patients with life-limiting illnesses, and their family caregivers. DESIGN: Ethnography, utilising open-ended interviews, observations and field-notes. PARTICIPANTS: In total, 12 rural (town and farm) patients with life-limiting illnesses, 18 family caregivers and 6 clinicians, in the Snowy Monaro region of New South Wales, Australia, participated in this study over the course of the deaths of the patients. Interviews were transcribed and analysed with observational data using an emergent thematic process. RESULTS: A 'safe death' was central to a 'good death' and was described as a death in which one could maintain (1) a connection with one's previous identity; (2) autonomy and control over decisions regarding management of end-of-life care and (3) not being overwhelmed by the physical management of the dying process. For all participants, the preferred place of death was the 'safe place', regardless of its physical location. CONCLUSION: Safety, in this study, is related to a familiar place for death. A home death is not essential for and does not ensure a 'good death'. We all have a responsibility to ensure all places for dying can deliver the 'safe death'. Future research could explore the inter-relationships between safety and preference for home or home-like places of death.

Dying at home in rural residential aged care: A mixed-methods study in the Snowy Monaro region, Australia.

Residential aged care (RAC) is a significant provider of end-of-life care for people aged 65 years and older. Rural residents perceive themselves as different to their urban counterparts. Most studies describing place of death (PoD) in RAC are quantitative and reflect an urban voice. Using a mixed-methods design, this paper examines the PoD of 80 RAC residents (15 short-stay residents who died in RAC during respite or during an attempted step-down transition from hospital to home, and 65 permanent residents), within the rural Snowy Monaro region, Australia, who died between 1 February 2015 and 31 May 2016. Death data were collected from local funeral directors, RAC facilities, one multi-purpose heath service and obituary notices in the local media. The outcome variable was PoD: RAC, local hospital or out-of-region tertiary hospital. For the permanent RAC residents, the outcome of interest was dying in RAC or dying in hospital. Cross tabulations by PoD and key demographic data were performed. Pearson Chi squared tests and exact p-values were used to determine if any of the independent variables were associated with PoD. Using an ethnographic approach, data were collected from 12 face-to-face, open-ended interviews with four RAC residents, with a life expectancy of ≤6 months, and six family caregivers. Interviews were audio-recorded, transcribed and analysed thematically. Fifty-one (78.5%) of the permanent residents died in RAC; 21.5% died in hospital. Home was the initial preferred POD for most interviewed participants; most eventually accepted the transfer to RAC. Long-term residents considered RAC to be their "home"-a familiar place, and an important part of their rural community. The participants did not consider a transfer to hospital to be necessary for end-of-life care. Further work is required to explore further the perspectives of rural RAC residents and their families, and if transfers to hospital are avoidable.

Place of death in the Snowy Monaro region of New South Wales: A study of residents who died of a condition amenable to palliative care.

OBJECTIVE: To describe the place of death of residents in a rural region of New South Wales. DESIGN: Cross-sectional quantitative study using death data collected from local funeral directors (in person and websites), residential aged-care facilities, one multipurpose heath service and obituary notices in the local media (newspapers/radio). SETTING: Snowy Monaro region (New South Wales Australia). PARTICIPANTS: Residents, with advanced frailty or one of 10 conditions amenable to palliative care, who died between 1 February 2015 and 31 May 2016. MAIN OUTCOME MEASURE: Place of death. RESULTS: Of 224 deaths in this period, 138 were considered amenable to palliative care. Twelve per cent of these deaths occurred in a private residence, 38% in the usual place of residence and 91% within the region. CONCLUSION: Most rural residents with conditions amenable to palliative care died in the region. Most did not die in their usual place of residence. Further qualitative work is needed to determine palliative care patients' and family caregivers' preferences for, and the importance placed on, place of death. While there may be a need to support an increase in home deaths, local rural hospitals and residential aged-care facilities must not be overlooked as a substitute for inpatient hospices.

Rural residents' perspectives on the rural 'good death': a scoping review.

The 'good death' is one objective of palliative care, with many 'good death' viewpoints and research findings reflecting the urban voice. Rural areas are distinct and need special consideration. This scoping review identified and charted current research knowledge on the 'good' rural death through the perspectives of rural residents, including rural patients with a life-limiting illness, to identify evidence and gaps in the literature for future studies. A comprehensive literature search of English language articles (no date filter applied) was conducted in 2016 (2 January to 14 February) using five library databases. Reference lists of included articles, recent issues of eight relevant journals and three grey literature databases were also hand-searched. Twenty articles (for 17 studies and one systematic review) were identified after a two-phase screening process by two reviewers, using pre-determined inclusion criteria. Data from each study were extracted and charted, analysed using a thematic analysis of the included articles' content, and with a quantitative analysis of the scoping review. These papers revealed data collected from rural patients with a life-limiting illness and family caregivers, rural healthcare providers, the wider rural community, rural community leaders and rural health administrators and policy makers. Rural locations were heterogeneous. Residents from developed and developing countries believe a 'good death' is one that is peaceful, free of pain and without suffering; however, this is subjective and priorities are based on personal, cultural, social and religious perspectives. Currently, there is insufficient data to generalise rural residents' perspectives and what it means for them to die well. Given the extreme importance of a 'good death', there is a need for further studies to elicit rural patient and family caregiver perspectives.

Rural end-of-life care from the experiences and perspectives of patients and family caregivers: A systematic literature review.

BACKGROUND: End-of-life care must be relevant to the dying person and their family caregiver regardless of where they live. Rural areas are distinct and need special consideration. Gaining end-of-life care experiences and perspectives of rural patients and their family caregivers is needed to ensure optimal rural care. AIMS: To describe end-of-life care experiences and perspectives of rural patients and their family caregivers, to identify facilitators and barriers to receiving end-of-life care in rural/remote settings and to describe the influence of rural place and culture on end-of-life care experiences. DESIGN: A systematic literature review utilising the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. DATA SOURCES: Four databases (PubMed, CINAHL, Scopus and Web of Science) were searched in January 2016, using a date filter of January 2006 through January 2016; handsearching of included article references and six relevant journals; one author contacted; pre-defined search terms and inclusion criteria; and quality assessment by at least two authors. RESULTS: A total of 27 articles (22 rural/remote studies) from developed and developing countries were included, reporting rural end-of-life care experiences and perspectives of patients and family caregivers. Greatest needs were informational (developed countries) and medications (developing countries). Influence of rural location included distances, inaccessibility to end-of-life care services, strong community support and importance of home and 'country'. CONCLUSION: Articulation of the rural voice is increasing; however, there still remain limited published rural studies reporting on patient and family caregivers' experiences and perspectives on rural end-of-life care. Further research is encouraged, especially through national and international collaborative work.

Place of death in rural palliative care: A systematic review.

BACKGROUND: There have been many studies on the actual and preferred place of care and death of palliative patients; however, most have been whole population surveys and/or urban focused. Data and preferences for terminally ill rural patients and their unofficial carers have not been systematically described. AIM: To describe the actual place of death and preferred place of care and/or death in rural palliative care settings. METHOD: A systematic mixed studies review using Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. DATA SOURCE: PubMed, PsychINFO, Scopus and CINAHL databases were searched (September to December 2014); eligible quantitative and qualitative studies included preferred and/or actual place of death/care of rural, regional or remote residents; rural data that are clearly identifiable; death due to palliative condition (malignant and non-malignant) or survey of participants with current or hypothetical life-limiting illness. RESULTS: A total of 25 studies described actual place of death; 12 preferred place of care or death (2 studies reported both); most deaths occurred in hospital with home as the preferred place of care/death; however qualitative studies suggest that preferences are not absolute; factors associated with place are not adequately described as rurality was an independent variable; significant heterogeneity (rural setting and participants), however, many areas had a greater chance of home death than in cities; rural data are embedded in population reports rather than from specific rural studies. CONCLUSION: Home is the preferred place of rural death; however, more work is needed to explore influencing factors, absolute importance of preferences and experience of providing and receiving palliative care in rural hospitals which often function as substitute hospice.

Delirium in advanced cancer: screening for the incidence on admission to an inpatient hospice unit.

BACKGROUND: Delirium is a common underdiagnosed condition in advanced cancer leading to increased distress, morbidity, and mortality. Screening improves detection but there is no consensus as to the best screening tool to use with patients with advanced cancer. OBJECTIVE: To determine the incidence of delirium in patients with advanced cancer within 72 hours of admission to an acute inpatient hospice using clinical judgement and validated screening tools. METHOD: One hundred consecutive patients with advanced cancer were invited to be screened for delirium within 72 hours of admission to an acute inpatient hospice unit. Two validated tools were used, the Delirium Rating Scale-Revised 98 (DRS-R-98) and the Confusion Assessment METHOD (CAM) shortened diagnostic algorithm. These results were compared with clinical assessment by review of medical charts. RESULTS: Of 100 consecutive admissions 51 participated and of these 22 (43.1%) screened positive for delirium with CAM and/or DRS-R-98 compared to 15 (29.4%) by clinical assessment. Eleven (21.6%) were identified as hypoactive delirium and 5 (9.8%) as subsyndromal delirium. CONCLUSION: This study confirms that delirium is a common condition in patients with advanced cancer. While there remains a lack of consensus regarding the choice of delirium screening tool this study supports the CAM as being appropriate. Further research may determine the optimal screening tool for delirium enabling the development of best practice clinical guidelines for routine medical practice.