The electronic database search returned 30 relevant records and 9 additional records were identified by a manual search in Google Scholar. Reference lists of the included articles were searched. After assessing the records for relevance, 29 references were saved, and full texts were obtained and reviewed for relevance to the research questions. Duplicates were removed, and titles and abstracts were reviewed to select studies. Preselected full-text studies were screened by two (JC and SS) reviewers independently, to identify studies according to inclusion criteria. This systematic literature review was reported in accordance with the PRISMA (preferred reporting items for systematic reviews and meta-analysis) reporting guidelines provided for systematic reviews and meta-analyses. (PRISMA Figure 1)
Data was extracted, and study findings and characteristics were synthesised in a narrative summary. From these articles, 11 met the inclusion criteria for the review. Of these 5 were based in New South Wales, 2 in Western Australia, 1 from Queensland, 1 from Northern Territory and 2 were conducted nationally. Included studies were appraised for quality using MMAT (Table 2).
Terminology for leave events in Australia are used generally to specify when a person has left a health service prior to being seen by a health professional or have left against medical advice. However, there are many inconsistencies in the use of this terminology as each state and territory define leave events differently. Terminology for leave events can also vary depending on the location a person presents, for example to an emergency department compared to being admitted as a patient.
Leave events are noted by the national organisation, Australian Institute of Health & Welfare (AIHW) as TOL), ‘incomplete emergency attendances’, ‘discharge from hospital against medical advice’. In Western Australia leave events are termed as ‘take own leave’, (TOL), ‘did not wait to receive treatment’ (DNW), ‘abscond’ or ‘go missing’, ‘self-discharge’, ‘leave at their own risk’ (LOR), ‘away without leave’ (AWOL) or ‘discharge against medical advice’ (DAMA). NSW record leave events as ‘take own leave’ (TOL), ‘did not wait’ (DNW), ‘discharge against medical advice’ (DAMA) and ‘left at own risk’ (LOR).
The Northern Territory use ‘discharge/leave against medical advice within 48 hours’ (DAMA/LAMA), ‘discharge against medical advice’ (DAMA), ‘self-discharge’, ‘absconding’, ‘taking own leave’ (TOL) and ‘away without leave’ (AWOL) for leave events. Tasmania and Victoria are the only states that use CODE Z which means left against medical advice. South Australia document leave events as ‘inpatient discharge against medical advice’ and ‘left emergency department at own risk’. Queensland use a code for leave events but is different to TAS and VIC which is Code 07 ‘discharged at own risk’. Finally, Australian Capital Territory use ‘patient who did not wait to be seen’.
Prevalence of ‘leave events’
Leave events rates for Aboriginal and Torres Strait Islander people are seven times more than that of other Australians.(13) There are several contributing and interrelated factors as mentioned in the background of this review, associated with leave events that cause Aboriginal and Torres Strait Islander peoples to leave a healthcare facility before treatment or during treatment. Several recommendations from evidenced based studies could be implemented across Australian healthcare services to address this.(1, 3, 10, 11, 13)
The Australian Institute of Health and Welfare collected national data using the National Hospital Morbidity Database for years 1998–99 to 2012–13 and found that leave events for Aboriginal and Torres Strait Islander patients have increased.(14) Hospitalisation for injury and poisoning had the highest rates of leave events for Aboriginal and Torres Strait Islander peoples compared to other Australians.(4) The greatest difference between Aboriginal and Torres Strait Islander peoples and other Australians was in endocrine, nutritional and metabolic disorders. Other contributing factors identified were Indigenous status and remoteness of hospitals.(4)
While it is established that the prevalence and rate of leave events is higher among marginalised communities such as culturally and linguistically diverse (CALD), and children 0-16 years,(11) similar patterns are also seen in Aboriginal and Torres Strait Islander children. A retrospective cohort study by Gardner in 2016 indicated that urban Aboriginal children 0-16 years were more likely to be reported as discharged against medical advice than other Australian children.(15)
In a study by Gardner et al., routinely collected medical data between January 2007 and December 2012 were analysed and the findings showed that patients’ medical records were incomplete and not being recorded by clinical staff. Although comprehensive quality routine data can help to identify service gaps experienced by patients and families, this was not possible due to the incomplete records.(7)
Remote rehabilitation service uptake by male Aboriginal patients was studied by Munro in 2018. It is noted that 47% Aboriginal patients at a remote NSW drug and alcohol rehabilitation centre self-discharged without completing the program.(8) This finding is aligned with the study by Katzenellenbogen et al. (2013) that revealed leave events are more common among Aboriginal and Torres Strait Islander peoples in rural and remote areas. Munro’s analysis of the patients’ admissions from 2011 to 2016 showed that patients referred from the criminal justice system were more likely to self-discharge.(8) It is known that discharge against medical advice in adult general population leads to increased risks of re-admission,(3) but Munro could not establish the same pattern in remote Aboriginal male patients due to unavailability of follow-up data.(8)
Causes of ‘leave events’
In a study conducted by Einsiedel et al factors that predicted leave events included: loneliness, taken by family, payday, attending court, the football, feeling better, staff mistreatment; staff speaking ‘roughly’ and waiting too long. Einsiedel et al also found that in the Northern Territory, Aboriginal and Torres Strait Islander people with medical conditions that appeared to “get better” before completing treatment and left the healthcare facility were documented to have been discharged against medical advice or recorded as ‘non-compliant’.(1) However, most had little understanding of their illness and there was a lack of clear and culturally appropriate communication from health providers explaining the potential consequences of leaving before treatment is completed.(1) Findings from Einsiedel et al suggested that Aboriginal people who live in the Central Dessert continue to fear hospital settings and believe they are connected to death. Another issue identified was not being able to go back on Country so patients who have a terminal illness prefer to leave the hospital in order to be able to die on Country.(1)
A systematic review by Shaw revealed that experiences of racism, distrust of the health system, a lack of culturally safe institutions, miscommunication and misunderstandings, feelings of isolation and loneliness, family and social obligations as well as remoteness of hospital from usual residence all contributed to leave events.(3) Shaw’s review included a study by Katzenellenbogen that indicated acute healthcare settings are not effective at addressing the apprehensions of Aboriginal and Torres Strait Islander patients in order to maintain patient’s engagement in their follow up treatment.(9)
The cross-sectional analytical study undertaken by Katzenellenbogen in Western Australia showed the risks associated with leave events were unique to Aboriginal and Torres Strait Islander patients compared with other Australians, although, the study also identified that drug and alcohol dependency associated with leave events was a strong predictor for both Aboriginal and Torres Strait Islander patients and other Australians. The study found that Aboriginal and Torres Strait Islander patients leave events were unique due to culturally distinct personal and systemic factors associated with negative experiences from hospital and mainstream institutions. The study had consistent findings with other studies in this review of leave events for Aboriginal and Torres Strait Islander patients that were associated with a lack of cultural safety and culturally appropriate care, personal and institutionalised racism, miscommunication, family and social commitments, isolation and loneliness.
The Western Australia Department of Health conducted a review in 2018 of relevant and current policies on leave events. The Aboriginal Health Policy Directorate (AHPD) held consultations with Health Service Providers, Aboriginal Health Council WA (AHCWA), Health Consumers’ Council (HCC), WA Primary Health Alliance (WAPHA), Mental Health Commission (MHC) and key senior WA Health staff. Through these consultations many common themes were identified as causes for leave events for Aboriginal and Torres Strait Islander patients. Common themes included systemic racism and stereotyping, distrust of health services, not enough Aboriginal workforce, lack of appropriate communication and language barriers, family, cultural and social commitments, alcohol and other drugs, mental health issues, admission and discharge procedures being slow and complicated.(2)
In a retrospective cross-sectional study by Sealy et al in 2019, leave events among Aboriginal and Torres Strait Islander children compared with other Australian children 0-14 were analysed from a 5-year inpatient admissions dataset. The Bayesian multivariable logistic regression analysis was used to determine the predictors of leave events in admissions. This study did not assess the reasons of leave events for Aboriginal children but drew on other studies that stated it could be due to distrust in the health system, lack of cultural safety, staff attitudes, hospital policies and racism. The study also highlighted the probable under identification of Aboriginal or Torres Strait Islander status which may be due to fear of racist treatment and the historical practice of removal of children during hospital stays.(12) While many authors tried to discover predictors for leave events in Australian hospitals from medical datasets,(3, 9, 11, 12) little evidence is available from robust qualitative exploration of Aboriginal patients’ experience. A summary of causes is represented in Table 1.
The Aboriginal Health Policy Directorate 2018, Western Australia Department of Health found a number of preventative measures to reducing leave events outlined within this section.(2) These included the need for health systems to be responsive through effective cultural competency which could be achieved through increased cultural training of hospital staff on connection to country, kinship and family obligations.(16) It was found that to be effective this training must be mandatory and ongoing. Cultural training models need to be developed to address the individual service and community settings according to locally identified priorities.(16)
Other preventative measures that were explored in the paper found that the implementation of a ‘living document’ such as a ‘Cultural Security/Safety Policy/Framework’, developed in collaboration with Aboriginal and Torres Strait Islander stakeholders, policy makers and communities can improve the appropriateness and safety of healthcare. Improving the hospital environment through policy changes to accommodate family members to stay with the patient during their admission was also recommended.(16)
Pathways between hospital and community care providers need to be developed in collaboration with Aboriginal and Torres Strait Islander communities and community controlled Aboriginal Health Services to enable appropriate healthcare within their community. Culturally safe and appropriate environments during pre-admission processes for Aboriginal and Torres Strait Islander patients were also found to be important for patients to feel welcome and comfortable. The availability of an Aboriginal health Worker/Liaison Officer to address the concerns of culture early in their admission was also found to build a trusting environment.(3)
Another preventative measure outlined Aboriginal community-controlled health services involvement in equipping patients with information about hospital processes and what to expect when they attend the healthcare service.(2) Establishing partnerships and protocols with Aboriginal stakeholders to improve coordination and continuity of care between health services and community-controlled health services was deemed important. Two-way communication between Aboriginal community-controlled health services healthcare services and effective engaging patients and carers in the design and plan of programs and services can improve patient’s quality of care.(2)