New approaches are needed to assist residential aged care (RAC) staff increase their skills and confidence in identifying when residents are nearing the dying phase and managing symptoms. One new evidence-based approach to improve palliative and end-of-life care in RAC is outreach Specialist Palliative Care Needs Rounds (monthly triage and risk stratification meetings – hereafter Needs Rounds); as yet untried in rural settings which may face unique enablers or challenges. Needs Rounds were introduced into two RAC facilities in the rural Snowy Monaro region of New South Wales, Australia. This study explored staff and general practitioners’(GPs’) experiences and perceptions of palliative and end-of-life care in rural RAC, and staff confidence and capability in providing such care, prior to, and after the introduction of Needs Rounds. A mixed-methods, pre- and post-intervention approach was taken, utilizing a Likert-scale written questionnaire and face-to-face semi-structured interviews. Between March and November 2018, 61 questionnaires were completed by 48 RAC staff (33 pre-, 28 post-intervention); eight staff and three GPs were interviewed. Despite system and site-specific barriers, staff self-reported that Needs Rounds increased their capability in providing end-of-life care (p = 0.04; 95% CI 0.20–7.66), and improved staff: (1) awareness of end of life, reflective practice, and critical thinking; (2) end-of-life decision making and planning; and (3) pain management. Needs Rounds are acceptable and feasible in rural RAC. Palliative and end-of-life care for residents may be improved through education, collaboration, communication, and planning. Further studies should explore running Needs Rounds via telehealth and/or utilizing a multidisciplinary approach.
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.
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.
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.
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.
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.
Background: Palliative care (PC) medical and nursing professionals are potentially the most death literate group in the community yet little is known about their personal uptake of advance care planning (ACP) or written advance care directives (ACDs). Aim: To describe Australian and New Zealand PC medical and nursing professionals’ participation in personal ACP activities. Method: Between 12 May 2014 and 6 June 2014 an anonymous cross sectional online survey about personal ACP activities was distributed to Australian and New Zealand PC medical and nursing professionals.Results: The survey link was emailed to 946 medical and nursing PC health professionals with 329 (35%) recipients commencing the survey. Ninety-one percent of participating Australian and New Zealand PC medical and nursing health professionals have engaged in some form of ACP; 21% have a written ACD. Over 80% of those without a current ACD have engaged in an ACP conversation with family or significant others. Thirty percent of doctors did not feel an ACD was relevant for them, 29% considered them a low priority, 27% relied on conversations and 14% felt ACDs were poorly designed or ineffective. These proportions were 15%, 44%, 36%, and 2%, respectively for nurses.Conclusion: This study supports the notion that familiarity with ACP increases overall participation however, it does not support the popular view that familiarity with ACDs ensures uptake. The favoured mode of ACP amongst this group of health professionals was a conversation outlining values and preferences with family or significant others.
Les conditions physiques du patient sont les principales limites de recrutement et sont conformes aux limites rencontrées dans les études précédentes impliquant des soins palliatifs et des patients mourants. Bien qu'il soit possible et nécessaire de conduire des études en soins palliatifs, incluant des patients en phase terminale, les auteurs doivent maintenir l'équilibre entre les demandes d'une pratique basée sur les preuves et leur compassion et leur respect pour les plus vulnérables.