Background: A substantial number of older adults die in residential aged care facilities, yet little is known about the characteristics of and how best to optimise medication use in the last year of life.
Aim: The aim of this review was to map characteristics of medication use in aged care residents during the last year of life in order to examine key concepts related to medication safety and draw implications for further research and service provision.
Design: A scoping review following Arskey and O’Malley’s framework was conducted using a targeted keyword search, followed by assessments of eligibility based on title and content of abstracts and full papers. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, the scoping review protocol was prospectively registered to the Open Science Framework on 27 November 2018.
Data Sources: We searched MEDLINE, EMBASE, AMED, CINAHL and Cochrane databases to identify peer-reviewed studies published between 1937 and 2018, written in English and looking at medication use in individuals living in aged care facilities within their last year of life.
Results: A total of 30 papers were reviewed. Five key overarching themes were derived from the analysis process: (1) access to medicines at the end of life, (2) categorisation and classes: medicines and populations, (3) polypharmacy and total medication numbers, (4) use of symptomatic versus preventive medications and (5) ‘inappropriate’ medications.
Conclusion: Number of prescriptions or blunt categorisations of medications to assess their appropriateness are unlikely to be sufficient to promote well-being and medication safety for older people in residential aged care in the final stages of life.
The views of family carers who provide end of life care to people of advanced age are not commonly known. We conducted a bicultural study with bereaved New Zealand Maori (indigenous) and non-indigenous family carers who, on behalf of their older family member, reflected on the end of life circumstances and formal and informal care experienced by the older person. Semi-structured interviews were undertaken with 58 people (19 Maori and 39 non-Maori), who cared for 52 family members who died aged over 80 years. A Kaupapa Maori thematic analysis of family/whanau perspectives identified examples of good holistic care as well as barriers to good care. These are presented in a proposed Whare Tapa Wha Older Person’s Palliative Care model. Good health care was regarded by participants as that which was profoundly relationship-oriented and upheld the older person’s mana (authority, status, spiritual power) across four critical health domains: Whanau (social/family), Hinengaro (emotional/mental), Wairua (spiritual) and Tinana (physical) health domains. However, poor health care on one level impacted on all four domains affecting (reducing) mana (status). The “indigenous” model was applicable to both indigenous and non-indigenous experiences of end of life care for those in advanced age. Thus, Indigenous perspectives could potentially guide and inform end of life care for all.
Background: The palliative care population is prescribed a large number of drugs, increasing as patients deteriorate. The cumulative effects of these medications combined with underlying symptom burden can result in significant morbidity. There is an urgent need to describe possible symptomatic events that could be exacerbated by commonly prescribed drugs in palliative care and their impact.
Objectives: To trial the feasibility and acceptability of determining baseline symptomatic event rates for community palliative care patients from which a composite measure of symptomatic events can be developed.
Design: This prospective pilot study of patient-reported symptomatic events recruited a convenience cohort of 27 community palliative care patients in a metropolitan specialist palliative care service in Australia.
Results: This study has demonstrated a high prevalence rate of symptomatic events (total crude event/participant day rate 0.87) in the study population.
Conclusion: Data collection of patient-centered symptomatic events was acceptable and feasible to participants. This pilot supports a fully powered study.
BACKGROUND: Contemporary health policies call for consumers to be part of all aspects of service planning, implementation, delivery and evaluation. The extent to which consumers are part of the systemic decision-making levels of palliative care appears to vary between and within services and organisations.
AIM: The aim of this systematic review is to develop understandings about consumer and carer leadership in palliative care.
DESIGN: A systematic, narrative synthesis approach was adopted due to the heterogeneity of included studies. The review was registered on PROSPERO prospectively (PROSPERO 2018 CRD42018111625).
DATA SOURCES: PubMed, Scopus and PsycINFO were searched for all studies published in English specifically focusing on consumers' leadership in palliative care organisations and systems. Articles were appraised for quality using a modified JBI-QARI tool.
RESULTS: Eleven studies met the inclusion criteria and quality assessment. Consumers are currently involved in leadership of palliative care teaching, research and services. Findings highlight the benefits of consumer leadership in palliative care including more relevant, higher-quality services, teaching and research. Across the included studies, it was not clear the extent to which consumer leaders had influence in relation to setting agendas across the palliative care sector.
CONCLUSION: The findings suggest that more could be done to support consumer leadership within palliative care. Academics and clinicians might improve the relevance of their work if they are able to more meaningfully partner with consumers in systemic roles in palliative care.
BACKGROUND: Public health approaches to palliative care prioritise community-focused initiatives to support people with palliative care needs and their families. The nature and extent of these initiatives have not previously been reported.
AIM: To identify community-led and/or focused initiatives that have been developed to support family carers of people with palliative care needs and for which evaluation information is reported in the empirical literature.
DESIGN: An integrative study design was undertaken using systematic methods.
DATA SOURCES: CINAHL, Medline, PsycINFO, Embase, Cochrane, Sociological Abstracts, Proquest Social Science Database, and grey literature were searched using standardised search terms.
RESULTS: two quantitative, two qualitative and two mixed method studies were identified (n = 6). All community initiatives identified were professionally led, although three has consumer input. Most aimed to improve carer psychosocial well-being and all were reported to have been beneficial.
CONCLUSIONS: This integrative review identified only six community-focused and evaluated initiatives supporting family carers in the international palliative care research literature. Further evaluation is needed. However, appropriate evaluation methods and reporting require further discussion and debate between all stakeholders. Service users and communities themselves must be central to this process.
Patient safety and quality of care are increasing concerns for healthcare internationally. This paper examines the spatial achievement of safety and wellbeing by healthcare staff, patients and their carers within UK primary care and Australian palliative care contexts. Two key socio-spatial modes of safety and wellbeing were found across these healthcare contexts. The technical mode was spatially managed by staff and driven by formal approaches to safety with a limited focus on wellbeing. In contrast, the relational mode was driven by attentiveness to the wellbeing and spatial engagement of staff, patients and carers that drew on informal elements of safety. Both modes extended across public, private, biomedical and administrative spaces, with technical and relational safety-wellbeing configurations often inhabiting the same spaces. Differences also existed across primary and palliative care contexts that reflected the unique pressures present within each context, and the ability of people and places to adapt to these demands. In the context of increasing workloads in healthcare internationally, this study highlights the benefits of attending as much to the relational dimensions of safety and quality of care as to the technical ones through increased focus on the safety and wellbeing of healthcare staff, patients and carers within and beyond traditional sites of care.
BACKGROUND: Despite the increasing number of people requiring palliative care at home, there is limited evidence on how home-based palliative care is best practised.
AIM: The aim of this participatory qualitative study is to determine the characteristics that contribute to brilliant home-based palliative care.
DESIGN: This study was inspired by the brilliance project - an initiative to explore how positive organisational scholarship in healthcare can be used to study brilliant health service management from the viewpoint of patients, families, and clinicians. The methodology of positive organisational scholarship in healthcare was combined with video-reflexive ethnography.
SETTING/PARTICIPANTS: Home-based specialist palliative care services across two Australian states participated in the study. Clinicians were able to take part in the study at different levels. Pending their preference, this could involve video-recording of palliative care, facilitating and/or participating in reflexive sessions to analyse and critique the recordings, identifying the characteristics that contribute to brilliant home-based palliative care, and/or sharing the findings with others.
RESULTS: Brilliance in home-based palliative care is contingent on context and is conceptualised as a variety of actions, people, and processes. Care is more likely to be framed as brilliant when it is epitomised: anticipatory aptitude and action; a weave of commitment; flexible adaptability; and/or team capacity-building.
CONCLUSION: This study is important because it verifies the characteristics of brilliant home-based palliative care. Furthermore, these characteristics can be adapted for use within other services.
BACKGROUND: Chronic breathlessness syndrome in the context of advancing disease is distressing for all concerned. Oxygen is commonly prescribed in this setting; however, little is known about the perspectives of breathless people who either are on oxygen or are yet to have it prescribed.
AIM: To understand and describe the perspectives and experiences of breathless people towards oxygen use at home.
DESIGN: This qualitative study utilised an interpretive description approach using semi-structured interviews and thematic analysis.
SETTING/PARTICIPANTS: A total of 19 people with chronic breathlessness syndrome living in South Australia participated in semi-structured interviews. Participants were divided into sub-groups according to whether they were chronically breathless and (1) not using home oxygen (n = 6), (2) using funded home oxygen for severe hypoxaemia (n = 7) and (3) using home oxygen for palliation outside of funding guidelines (n = 6).
RESULTS: Three main themes were identified: (1) managing distress and living with chronic breathlessness syndrome, with or without oxygen, requires a range of self-management strategies; (2) expectations of oxygen use: 'Not as good as I thought it would be'; and (3) the stigma of using oxygen: the visible and invisible.
CONCLUSION: People living with chronic breathlessness struggle daily with both the progression of the underlying disease and the distressing nature of the syndrome. While oxygen does provide benefit for some people, its use and the perceptions of its use are often associated with both the visible and invisible manifestations of stigma. Clinicians need to promote self-management strategies and give careful thought to the prescribing of home oxygen, especially outside the current funding guidelines.